our AD journey

time to end

2009-02-01T23:48:00.003-06:00

as some have done before me, and others will after me, i think the time has come to stop blogging, at least on this blog.

this blog was a life line to me during a very painful time in my life and i honestly don't know how i would have survived without this blog and all the wonderful friends i met and the love and support i received from all of you.

in just 2 weeks it will be the third anniversary of gene's death. from that day forward, my life drastically changed forever, and my new life with caring for a parent with AD began. but that stage too ended 16 months ago. life does go on, and it's time for me to really focus on the future.

i, like others, will continue to check in with everyone as i have been doing. but to be honest, the frequency of my posts have drastically decreased over time so it's time. i had thought about it when lori and flinty stopped but now something is telling me that it is really time now. i can't quite bring myself to delete my blog so it will remain up. maybe someone will come across it who can find some answers or get some help from reading it.

again, the bond that was formed with all of you will never be forgotten or broken. i love you all and wish you nothing but peace, love, strength, health and happiness; today and always. God bless us all!

p.s. rabbit rabbit.

december

2008-12-14T23:17:00.008-06:00

this has been a strange month. before the first week of december had ended i expreienced 3 snowstorms in wisconsin. for the past week i have been in florida, and i might add, i hated the thought of coming home. bob attended the national pharmacy convention and i tagged along. only i didn't go to the meetings with him but rather vegged out by the pool and read. it was wonderful, and very relaxing, and something i really think i needed. it gave me a good chance to think and reflect on my life and even with the tough times i've had, how blessed i really am. and it made me realize i am even more motivated to try and find a different job in nursing that makes me feel fulfilled and one in which i'm truly helping others.

the weather was wonderful, high 60's when we arrived, the next 2 days in the mid 70's and the last 3 days in the low 80's. such a change from what i had just left. i must admit though, for a girl who has grown up in the midwest with snow, it was a little surreal for me to listen to Christmas carols as i was laying out by the pool in a lounge chair! something didn't quite compute...

but alas, realtity set in and i had to return to reality and my real life yesterday. i am now back in wisconsin where we are suppose to get another snowfall by morning. i must admit though, it does look like Christmas here. yesterday and today i spent decorating. i have never waited this late to start but with thanksgiving being late and then between work and trying to get ready to go to florida, it just didn't happen before i left. so, yesterday i started. today bob and i went out and cut down a Christmas tree, brought it home and decorated it so it looks like Christmas inside as well. i decided to cut back on the inside decorations again. the last 2 years i haven't gotten everything out and it makes the putting away easier. my boys are older now, not home for that long to enjoy it all and to be honest, they haven't really noticed that i've forgotten a few things each year. i'm not sure bob has either so.....

don't

2008-11-06T21:45:00.003-06:00

don't tell me that you understand,
don't tell me that you know...
don't tell me that i will surely survive,
how i will surely grow...

don't tell me this is just a test,
that i am truly blessed...
that i am chosen for the task,
apart from all the rest...

don't come at me with answers,
that can only come from me...
don't tell me how my grief will pass,
that i will soon be free...

don't stand in pious judgment,
of the bonds that i must untie...
don't tell me how to suffer,
and don't tell me how to cry....

my life is filled with selfishness,
my pain is all i see...
but i need you, i need your love,
unconditionally....

accept me in my up's and down's,
i need someone to share....
just hold my hand and let me cry,
and say, my friend, i care...

author unknown

i had received this the same time i did the "please" i posted previously.

please

2008-11-01T23:20:00.002-05:00

please don't ask me if i'm over it yet. i'll never be "over it."

please don't tell me he/she is in a better place. he/she isn't here.

please don't say "at least he/she isn't suffering." i haven't come to terms with why he/she had to suffer at all.

please don't tell me you know how i feel, unless you have lost someone to ________.

please don't tell me to get on with my life. i'm still here, you'll notice.

please don't ask me if i feel better. bereavement isn't a conditions that "clears up."

please don't tell me "God never makes a mistake" or "it was God's will." you mean He did this on purpose?"

please don't tell me "at least you had him/her for ______years/months." what year would you choose for them to die?

please don't tell me God never gives you more than you can bear. who decides how much another person can bear?

PLEASE - just say you are sorry.

PLEASE - just say you remember him/her if you do.

PLEASE - just let me talk if i want to

PLEASE - just let me say his/her name without turning away or changing the subject.

PLEASE - let me cry when i must.

i was recently given a copy of this, and thought it was worth sharing.

fall and birthdays

2008-10-17T07:43:00.003-05:00

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fall has always been one of my favorites times of the year. fall and summer run a close race for first. growing up the beginning of october was a special time as gene, russ and i would always share our birthdays together. and who doesn't love the beauty of watching the colors change on the trees and the cool crisp autumn breeze blowing across your face.

this year was a little tougher for me than i anticipated. it happened again, getting caught off guard when i least expected it. this was not the first year to celebrate my birthday alone yet i felt more alone this year than last. maybe i was still in shock last year as it was so close to russ death? maybe it just took me off guard and i wasn't prepared for it.

bob and i went up to door county for my birthday weekend 2 weekends ago. i have spent the majority of my adult birthdays up there so i wanted this year to be no different. the colors were just starting to change and driving around we were able to find some wonderful color. our boys and my sister and nieces called me to wish me a happy birthday which was nice yet somewhat expected. what wasn't was that unk and russ' sister helen also called. and i received an e-mail from gene and russ' close friends pete and janet. that meant a lot. maybe they knew deep down that i needed an extra boost that day. it sure helped. thank you all.

but i still have a family to celebrate october birthdays with, the dates just not as close together. next week bob has a birthday and today is mark's 21st! wow, how did my baby grow up so fast!?! i can't be getting older.... tonight we will drive to madison and take him out on the town. i know for a fact that he has been "indulging" before at school so this will not be his first. i called him last night at midnight and could hardly hear him, i think the celebration had officially started. but tonight will be special and fun. matt will join us as well as some of his cousins. i remember when matt turned 21 not quite two years ago. i was not able to partake in the celebration at the time due to caregiving commitments so i plan to definitely raise a glass tonight for both boys.

happy birthday mark!! i love you and am so proud of the young man you have become. i know there will be glass raising up above tonight as well!

1 year......

2008-09-20T19:30:00.003-05:00

these flowers arrived today for me from russ' grandchildren. my sister also received some. we are very blessed.

the day i have dreaded has almost come to an end. it was ok and i did ok. understandably russ was on my mind most of the day. i did tear up a little bit a few times today but for the most part i tried to remember the good and fun times. russ would have wanted it that way.

this morning i went to menard's (like a lowe's or home depot) with bob. he looked at me funny when i asked but russ always loved going to stores like that. i spent my time going up and down the aisles pretending to kick a football. that was something russ and i used to pretend to do to pass the time or just be silly.

it was a beautiful day here today so for part of the afternoon bob and i lounged in the pool on some floats, not necessarily something russ would have done but i found it extremely relaxing.

for dinner we had burgers on the grill, corn on the cob and kraft macaroni and cheese, definitely one of russ' favorites.

thank you to all my wonderful friends and family who posted on my blog, e-mailed me or called today. i am overwhelmed by the thoughtfulness of you all and am truly touched and grateful. i definitely felt the love and support of you all.

flinty, you are now in my thoughts and prayers.

anticipation

2008-09-16T08:32:00.002-05:00

this week approaching is one i have dreaded for the past year. yet it is also one that i have wished would come and go months ago. but one thing i have learned through this journey after alzheimer's is that you can't ignore or deny your feelings. you can't go around them either but must travel through them, no matter how painful that might be.

a few months ago i was finally feeling like i was able to get a good night's sleep again and wake up feeling refreshed and rested. these past two weeks i have returned to my restless interrupted sleep cycle. bob has noticed it. i feel bad because i'm sure with all my tossing and turning he is not getting his well deserved sleep.

it is no secret to me as to the reason. in less than a week will mark the 1 year anniversary since russ died. i have found myself these past few weeks re-reading my previous entries from a year ago and reliving his final days again. i know in my heart that he is in a better place but i still miss russ. lori has said it best when she said, it's not about them, it's about me and how i feel and grieve for him.

i am also finding myself reflecting on this past year and what i have done with my life. the first half year i took off to regroup you might say and then begin a job search. these past 6 months i returned to the job force but can't say i really feel fulfilled. it is just a job. i am searching again like i did a year ago to find myself and my purpose. what do i want to do with my life? what will make me happy yet help others? i want to find a job that feels rewarding to me and one that i am making a difference in people's life. kinda like i guess i felt taking care of russ.

these feelings i am experiencing are nothing that others haven't felt before me and that millions of others will feel after me. i will get through it i know and be a stronger person for it. i know i have God at my side and He will carry me through.

the olympics

2008-08-20T23:55:00.002-05:00

i have been glued to the tv ever since the olympics started. it was always a big deal growing up to sit in front of the tv and watch the olympics. i am ever amazed how much more the media is able to cover and telecast compared to years past. i remember fondly watching mark spitz win his 7 gold metals in 1972. i myself use to swim competitively so he was a real idol of mine. to see michael phelps break those records was a little bittersweet. yet truly an awesome accomplishment, my hat goes off to him.

i also remember when rhythmic gymnastics first became part of the olympics. i don't remember the year but i do remember my families reaction. we actually thought it was a little silly. i still have vivid memories of russ, sue and i attempting to imitate some of their routines with the flags or ball and remember gene standing watching us; first giggling at our attempts and then judging us. i'm going to have to see if i can find some of those pictures. such good memories.

our week in door county was good, just too short. the weather and water was wonderful. SO relaxing and peaceful. it was wonderful to spend time with bob, matt and mark, just the 4 of us. you never know when things will change so i cherish every moment we spend as our little family.

at times it was still hard, realizing that both my parents are now gone, that russ wasn't back in respite waiting for me. it was also somewhat hurtful at times in people's reaction or should i say lack of reaction to seeing me for the first time since russ died but i got through it. people react and grieve differently and life goes on.

11 months

preparation

2008-08-02T07:53:00.003-05:00

why is it that when we go on vacation it always takes to much preparation to do it? there are so many loose ends to tie up before you can go. there is the mail and paper to stop, plants and pets to worry about, cleaning out the refrigerator, not to mention laundry and packing and lists upon lists of things so that you don't forget things.

as least that is the case with me. i am usually exhausted by the time i get somewhere that i spend the first day or two trying to catch up on my sleep. i'm sure it doesn't help that my basic personality is to be a procrastinator. why do something today when you can do it tomorrow? i have always been that way but the older i get the harder it is.

even now i am doing that. i meant to blog last night but decided to watch the brewers game first. then i needed to finish up with work i had brought home. that took me past midnight. ahh, there's always the morning to pack. i am up now but decided to blog first, then i will pack. guess whatever is thrown in at the last minute is what i will wear for the week. the nice thing is we are going up to door county for the week. there is no real agenda up there, i don't tend to need many if any dress clothes. a bathing suit, shorts, tops and maybe pants in case it gets cool.

it will be wonderful to get up there and spend a week. so very relaxing and peaceful, and close to gene and russ. we are shooting to leave in 2 hours so i better go and start packing and check my lists. i hope everyone has a peaceful week.

7/20

2008-07-21T22:45:00.003-05:00

yesterday came and went and i almost, (key word almost) didn't realize what day it was. i have now reached the 10 month mark since russ died. i did well and felt at peace for the most part. i listened to frank sinatra and smiled as i thought of both russ and gene. the more i think about it, it was a really good day all in all.

bob and i had a wonderful little get-a-way. i hope to blog about it and post some pictures soon.

blogging

2008-07-14T23:06:00.002-05:00

terry posted last week that he had been blogging for a year. it stuck me as i had been starting to think of that as well. how my life has changed in a year. i created my blog on july 10th last year and posted my first official post on july 16th. i find that really strange that i did not remember the date, the 16th, since it is bob's and mine anniversary. unk and dunk had come for a visit last year to give us some respite. we were unable to get away on our anniversary as planned as work interfered for bob so i spent the day creating my first real post. things were really hectic a year ago at this time. looking back, russ was really starting to spiral downward, yet at the time i had no idea what the future would hold. i only knew that in order to keep my sanity i needed to start writing down my thoughts and reach out to others who were in a similar situation to mine.

what a lifesaver this blog has been for me. 1 year ago i would count the hours until i get on the computer to capture my thoughts and check in on others, especially lori and terry, who were going through similar issues. soon, others joined, like betsy and chris, and stef to name a few. after that i met up with other wonderful caring caregivers. it was here i could open my heart and soul and not be judged but be understood. now my life is so different, i no longer am caregiving. i obviously don't post as often as i did then, yet i'm not ready to give up on my posting all together. a part of me still needs this outlet and i also need to stay connected to all of you who helped me through a very difficult time in my life.

this year will be different. i will not be posting on the 16th. unk & dunk will not be here to provide respite as there is no need this year. it is our 25th anniversary and bob and i are leaving tomorrow for a few days of r&r. i'm really looking forward to it yet i know we will talk quite a bit about russ and our journey with him. you see, every year since we have gotten married, on our anniversary we evaluate and rate the past year. the first year of our marriage we saw the play, "same time next year." in it a couple meet, have an affair, and agree to meet each other at the "same time, next year." during their yearly reunions they discuss what went on in their separate lives. we decided to do a takeoff of that, not to have an affair, but to talk about the prior year. every year we each think about and tell each other what was they best and worst thing about the prior year. obviously some years have had more joys and or sorrows. this year will be no different.

i'm back.....

2008-07-02T21:42:00.004-05:00

it's hard to believe that i have been away from my blog for so long. it's not that i haven't checked in with some or most of my friends blogs from time to time because i have. but for me, i guess i was just at a time when i needed a break. a lot was going on in my life and something had to give and i guess it was my blog. plus, for awhile i didn't even have the energy to think about what to blog about.

i have been at my job for about 3 months now and i am starting to feel more comfortable in what i do. the nurse that sits next to me, my cubicle buddy, has only been there about 3 weeks and i'm surprising myself that i have been able to answer the majority of the questions she asks me.

so how do i like the job? well, as with most jobs there are good things and bad. the people i work with for the most part are very nice. i especially like when i interact with the patients. there is a really difficult case with a young mom pregnant with her second and in the hospital more than not with hyperemesis (constant vomiting from being pregnant). twice i have been asked to sit down with the staff nurses and MD to brainstorm how we can help her and keep her out of the hospital. that part i really enjoy, not that she is sick, but trying to figure out ways to make things easier. it makes me realize that that is what caregivers, especially to a LO with AD, do on a daily basis; try to figure out how to make the best out a difficult situation that you know won't get better.

one of my most difficult adjustments to work has been changing from owning your own business and making the decisions to working for a big company and having to keep my mouth shut when i see how they mismanage things on a day to day basis. it's then that i'm glad i'm out the door every mid to late morning to go to the hospitals to see all the sick people.

i've also been going to a grief support group through the hospice russ used. it has been good. some weeks i walk away thinking i'm doing pretty good and other weeks i drive home with tears streaming down my face the entire drive home and then just collaspe in bed. all in all, i know it's something i have to work through and can't deny that i have gone through a huge amount of life changes in the past 2+ years.

i hope to catch up with all your blogs in the next week. thanks (i hope) for understanding my need to pull back for awhile. please know that even though i was absent for a time you all continued to be in my thoughts and prayers. you are a very special group.

a good week

2008-05-27T19:02:00.003-05:00

after a rough weekend on mother's day, i was glad to have had a good couple of weeks. last wednesday my sister and i stopped in at the in-patient hospice unit where russ had stayed 2 times for respite and 2 times for symptom management. the nurses there were great with him and it was good to see a few of them again. sue and i had also decided to give some of the contributions we received after russ died to vitas hospice for the wonderful care he received from them. as a result, a plaque (albeit small) was placed on the wall of donations. the above pictures are of sue and i standing in front of the wall of plaques and a close up of his inscription. i especially like the "you done good" part.

we picked last wednesday to go as one of the nurses had called me over the previous weekend to say that their marketing people would be there to do a promotional video for physicians and families to see. they asked if i would be willing to be in the video and say something. i agreed not really knowing what i was agreeing to. what i thought would be a short thing turned out to be a 2 hour ordeal. i really didn't mind though as i got to see and be filmed with Dr. Q, who took care of russ when he was there, see and be filmed with a wonderful chaplin, also named russ, as well as see some of the nurses. sue was in the part of the filming with the chaplin but left the interaction with Dr. Q up to me as well as the personal testimony. i had to laugh for as long as i was there, the video crew was to be there 2 full days - all for a 2-4 min. video. i will probably be on 10-15 seconds but it was for a good cause. i made them promise to send me a copy. maybe i will be able to put it on my blog for you all to see. don't hold your breath though....

last weekend for memorial day we went up to door county. some of the grass seed bob and i planted is starting to sprout as well as the pachysandras we planted i think will make it. i was also thrilled to see the dafodills blooming. last fall, bob and i found them in the garage. they had to be at least 2+ years old at the time. gene would have bought them and never got them planted, i'm sure because russ wouldn't have understood what she wanted him to do. for the heck of it, we planted them and they all came up, just beautiful. i know gene is looking down smiling.

bob was also able to get russ' car started and running that had been sitting up there for over 2 1/2 years as well. i was about ready to just call someone to have it towed away but our neighbor has a plane and periodically flies up to door county and was looking for a car to drive when up there. bob said after he unlocked the wheels which had rusted shut (it was me that came up with the idea to use coke and whaala) and charged the battery, he got in and said, "ok russ, do you think it will start?" guess what, it started right up! bob said he can just hear russ telling everyone up in heaven "ya know i had this car that hadn't been driven in almost 3 years and it started right up!"

the weather was great and it was nice to be where both gene and russ lived and loved life. the cemetery was decorated with flags by the graves of those who had served for us. i did a little salute to russ as i thanked him and all of the others who have served this country to keep us free.

a rough weekend

2008-05-14T20:17:00.003-05:00

mother's day came and went. it was rougher than i thought. this was my first mother's day that i wasn't pre-occupied with russ since gene died so i really felt the absence of my mom. i have found myself crying at all sorts of little things lately that remind me of her.

it probably didn't help that i wasn't able to see either of my two boys on sunday either. mark had a final on sunday and matt had one monday so i told him to stay at school and study. i don't regret my decision but it was still awful lonely. it was nice to be with bob and his mom, but it wasn't the same, it wasn't MY mom. honestly, i think i would have been happier sitting home alone, feeling sorry for myself. it was the first mother's day since i've been a mother that i didn't spend it with my boys, or my mom, and the first one that really hit me that my mother is truly gone.

i went to the rescheduled "delayed grief" seminar a few weeks ago and it made me realize that that is what i'm going through. for so long my grief for gene was wrapped around taking care of russ that i put it off, avoided it, and probably even wanted to subconsciously. shortly after russ died there were things that needed taken care of but now i have nothing to occupy my idle time and wham, it's hitting me front and center. i know i have to walk through this grief and deal with it, that i can't go around it, yet i just want to move on and be happy again.

labor of love

2008-05-07T16:45:00.005-05:00

this past weekend bob and i went up to door county to tend to some spring cleanup outside. with russ' deterioration, the past few years have slipped by without the yard work getting done, except what really needed it. understandably, it seemed only the bare necessities were done. last summer the bushes in front of gene & russ bedroom had pretty much died (maybe a foreshadowing???). we were hoping they would come back to life last summer but never seemed to. this past saturday morning was spent digging out the bushes. (above picture, if you look closely that is lake michigan in the top part of the picture - it is a gorgeous view from the bedroom window) i think we will probably just plant some grass seed and see how it looks, we can always do something different later. we spent some of saturday and most of sunday raking up dead leaves from under trees (that had collected a couple of years worth) as well as raking and carrying more brush and debris deep in the woods. we were both pretty tired and a little sore but i must say it made me feel good and i felt a great sense of accomplishment afterwards. SO much so i decided we will go back up this weekend and try to complete what we didn't have time to finish. both boys will be studying for finals this weekend and mark actually has a final on sunday so they will not be home. also, i figure i can feel close to gene knowing it is her gift from me this year and we will also stop and see bob's mom on our way home on sunday. i hope everyone has a nice mother's day weekend this year. i know it will be tough for many but know i'll be thinking of you all.

a wonderful weekend

2008-04-23T20:13:00.003-05:00

i had wanted to post earlier but we have had some problems with our computer so.....
first of all, this picture is actually mine but it looks almost identical to chris'. i have to agree with lori and snick. this weekend was everything i had hoped it to be.

some people i told i was going away for the weekend to visit with some dear friends whom i had never met gave me a weird look, or were leary, my sister included. fortunately a few, bob, unk and my niece kimi supported me and seemed to understand. i never gave it a second thought. like lori said, we have been through so much with each other over the months, that i already knew you all SO well, the meeting face to face was just a formality.

everyone was just as i had pictured. lori, i've know you the longest and maybe the best as we went through our "week from hell" with flinty and our LO's, helen, russ and flinty's dad. you have that quiet strength and loving heart that i've always admired about you and it was great to be able to finally see it in person.

snick, you have a soft gentleness about you and i swear, you have the prettiest blue eyes i have ever seen.

ann, you have a comforting calmness about you that makes one just pour out their heart to you. thank you.

jackie, i have to admit, i didn't know you near as well but i enjoyed getting to know you and admire you so much for the wonderful and giving heart you have in caring for your mom. it was cute that "she remembered all of us" as well!

i surprised myself that i didn't get too emotional all weekend. even with some reminiscing about our journeys and struggles i did very well. it wasn't until i was getting ready to leave that the tears started to flow. i know it was because i just didn't want to leave.

i can't thank you all enough for the effort that was made by all of you to come. lori and ann for traveling great distances, snick for making 2 trips on sat and sun to join us and jackie for arranging to leave your mom for the weekend and then opening up your home to us. i will treasure this time we spent together forever and hope that we can do it again and have others join us. (we talked about you betsy and still can't figure out why you didn't change the wedding to chicago so we could come!)

i love you all!!!

adjusting to work

2008-04-13T19:22:00.003-05:00

i am finding with my new job that i am so exhausted when i get home. i don't have much energy. all i want to do is just veg out on the couch. i remember the last few months of russ' life, it seemed that all i did was sit on the couch next to him and frequently wish i could get up and do something else. now i long to get home and do nothing else!

after russ died, i took about 6 months off before getting back into the work force. and even for his last year of life i had cut down tremendously, only working part-time, maybe 2-3 days a week. i really needed that time off to grieve and regroup and am glad that i did so. however, getting back into the work mode, much less a new full time job in a brand new arena has been challenging. the first week and a half was necessary yet somewhat boring. going over standards and universal health care codes and policies; these were things that i had given to our employees over the years.

the last week and a half has been much better. i started shadowing different nurses who travel to the different hospitals. there we review charts and talk to the members(patients) about discharge needs and answer any questions they have. it has been extremely more stimulating and interesting. i have found myself reaching deep down into my old knowledge base, thinking, "oh yeah, i remember studying that or having taken care of someone with that so many years ago." i am also having to learn where in each hospital i need to go sign in, where charts are kept, and who are my resource people. so much information and such a little brain!!!! i'm walking about 3 miles a day which is great, that isn't what is wearing me out, it's the information overload. i have this upcoming week to follow my last 2 people and then hopefully i will find out which hospital(s) i will primarily be responsible for and be on my own. their thought is to get me familiar with all the milwaukee hospitals so if someone is sick or on vacation i can cover.

everyone i have worked with seems very nice and willing to help and answer my questions. they have made me feel very welcome which i appreciate. i am still optimistic that once i really feel comfortable doing this, it will be for me the flexibility that i desire. i hope this explains why i have been absent for awhile and hope to soon have more to post about. i still think of all of you often and hope you have a good week!

grief, mourning & healing

2008-03-30T17:05:00.011-05:00

this afternoon i went to a seminar entitled grief, mourning & healing. i had heard about it through an e-mailing network i still receive from our business. it was given by patrick dean, a man who has done grief counseling for over 20 years and is the head of the milwaukee grief education center. it was excellent. maybe it wasn't necessarily new material but the way it was presented, and maybe also the stage i am in my grief, i was more ready to hear it and it certainly made an impact on me.

i am going to summarize of few of his key points not only to share with my fellow bloggers who are in the grieving process but also to record it for me, so i can have something to look back on.

grief is an internal experience where as mourning is how we exhibit our grief externally. grief is the bridge between who we were (before the death) and who we are becoming (following the death). mourning is the path to healing, how we move towards the healing.

grief is normal, natural and necessary. it is also universal yet totally unique.

through mourning, and the path towards healing, we are learning new ways to live with our necessary sadness. we are forever changed by the lives of those we loved. we need time to redefine who we are. i know as caregivers we can all acknowledge and agree with that.

the mere passage of time does not heal - it's what we do with that time. don't believe the saying, times heals all wounds, it doesn't, yet time softens and changes how we look at the loss. there is also no time limit to grief and loss. some losses are forever.

patrick was able to meet and visit with dr. elizabeth kubler-ross near the end of her life. she was the forerunner and pioneer to describing the phases one goes through with death and dying. patrick asked her if there was one thing he could pass on to bereavers as he gave workshops from her, what would she like it to be? he said she thought for a good 3-5 minutes and then answered. tell them "do the best you can and leave the rest of it up to whomever you deem your god to be." a very wise statement!

we need to work on finding our "new normal" in life. for death changes us forever so we should not look for a recovery but rather a reconciliation - learning to live with our loses. when we experience that momentary "spark" of life, we should try to build on it, nurture it into our "new normal."

though grief is hard, hopefully over time (and that will vary for each individual) thoughts become soft again, and a gentleness awaits us.
will i open my heart to an eternal love? a love no longer of this earth?
eventually, the stormy days and ways of grief will soften into something sad...AND beautiful.

"no one ever told me that grief felt so much like fear."
C.S. Lewis : A Grief Observed

this tuesday night patrick dean will be giving another talk on delayed grief. i am hopeful to attend that. i know i am experiencing that with my mom. i look forward to gaining insight into that as well.

Easter

2008-03-22T13:17:00.008-05:00

(matt, mark and russ dying eggs 2 years ago in S.C.; my blogger egg; matt and mark dying eggs this year)

Easter has always been a time for being with family and friends. when i was little, i remember going to my grandparents. i can still remember getting a new dress with a bonnet. back then i didn't get dressed up a lot as i liked playing outside but when i did, i went all the way and dressed to the hilt. i remember my mom telling me how i not only wore the dress and bonnet on Easter, but also the lacy socks, patten leather shoes, a purse, and of course the little white gloves. i would walk around very carefully with my hands up (kinda like you see surgeons doing on tv) so as not to get my hands dirty. i can only imagine...

when my boys were little, i use to dress them up in matching outfits for Christmas, Easter and other special occasions. early on we use to go see russ & gene for Easter and when the boys were in late grade school we starting driving to S.C. (fripp island) for Easter with my sister's family and another family. we would rent a big house and spend spring break down there. 2 or 3 of the years russ and gene would join us. 2 years ago, we even took russ there with us. it was just the 5 of us. it was hard to hear him tell me what a beautiful area it was, and how glad he was to see it as this was someplace he had never visited before. i didn't have the heart to tell him differently. i am just so thankful that he enjoyed himself while in the moment.

last year, russ was unable to travel that far. or maybe the better explanation is that i didn't have the energy to try to take him there again and also didn't think the change in routine would be good for him.

this year, mark and matt have different spring breaks and with me just starting a job, it was also not meant to be. it will just be a quiet Easter. mark is still in arizona so we are down to 3; bob, matt and me.

like betsy posted, even though our kids are older, i still enjoy watching them dye Easter eggs and i think think they enjoy it as well. this year was no different. i had them dye them last weekend when they were both home. i asked them if i could do a few this year as well. the egg above is for all my blogger friends and their LO's who died this past year. i apologize for the poor handwriting but the thought is still there.

Easter is a time of rebirth and that is what i hope for myself and the rest of you. i pray that for all of us who have lost someone this past year we will continue to grow and figure out the purpose of our lives. for those of you still caregiving, please know you will continue to be in my thoughts and prayers too.

as i look out the window at the 14+" of snow that was dumped here yesterday, the sun is out and it is a beautiful day. i hope for many more beautiful days, hopefully a lot more of them without snow! we are officially into spring so i look forward to the melting and greening up around here.

a Blessed Easter to you all!

6 months

2008-03-20T23:13:00.003-05:00

today was 6 months since russ died. i can truthfully say that i had an ok time with it. i was ever conscious of the fact but i was not sad, i felt at peace. maybe i am finally starting to get over this heaviness of grief. even if it is short lived, i am grateful for today. today was the first anniversary of sorts i felt like smiling as i remembered. today was good. thank you God.

orientation

2008-03-18T19:07:00.002-05:00

i started my new job yesterday but it will be at least a week before i can start assessing what i really think of it. this whole week i will be in orientation meetings. a lot of it is boring but a necessary evil. i think over the years i have learned how to be a good listener as well as what HIPPA etc. means. actually tomorrow afternoon through friday i will have 1 on 1 training learning the computer system they use and things specific to my job. hopefully that will be more interesting, or at least more applicable. the highlight yesterday was they had a HUGE potluck to celebrate st. patty's day. i kidded a few of the staff saying they didn't have to go to such extremes to welcome me!

having fun

2008-03-15T13:27:00.004-05:00

this has been my final week before i start work on monday. as i kinda knew would happen, i did not get a whole lot accomplished around the house. but that's ok. it will always wait for me. LOL. i did manage to do some fun and productive things though. on tuesday bob and i went to the milwaukee public museum to see the Gunther von Hagens' BODY WORLDS 1: The Original Exhibition of Real Human Bodies exhibit. http://www.mpm.edu/bodyworlds/. we both found this extremely fascinating. this is a process where people have donated their bodies specifically to the Body Worlds. through the process of plastination, fluid and fat are removed from the body and replaced with a synthetic polymer, or plastic to preserve the body forever. the amount of nerves and blood vessels in one's body is mind boggling, especially when you realize how exact a surgeon has to be when performing surgery. my favorite exhibit had to be the 8 month pregnant woman who knew she was going to die and donated her body with the fetus intact to the exhibit. bob probably found all the blood vessels his favorite. my biggest disappointment was that they did not have a brain with Alzheimer's on display. i have seen pictures of one on the internet but would have liked to have seen the real thing. they did show a brain that had suffered a stroke. i don't know if any of the other 3 exhibits traveling around the country have one on display or not. if you have not seen this and have the opportunity to visit one in your area i highly recommend it.

wednesday i had lunch with russ' home hospice nurse, janine. it was great to see her and catch up with her and her family. i had not seen her in many months but still think of her often and the wonderful care she gave to russ and the great support she was to me.

thursday morning i treated myself to a pedicure. or i should say the boys did. they had given me a gift certificate for one for Christmas and i hadn't used it yet with all the bitter cold weather so took advantage of it since we reached almost 50 on thursday. later that morning i had a nice talk with lynne, one of the in-patient hospice nurses and the first one who came to my house and did continuous care for russ at the end. it is always good to talk to lynne.

in the afternoon my sister and i went for a grief thing put on by the hospice russ used. i purposely call it a grief "thing" as i had a whole different perception of what it would be. somehow i was under the impression from the mailing that is would be a workshop or support meeting. well, it actually was like a church service, held in a nursing home's chapel. it was very nice and i was able to see another of the in-patient nurses, marlene. the thing though, and i know it will sound stupid, is i felt like i was under dressed. growing up my mom had a thing about never going to church unless she had a dress or skirt on. she instilled it in me as well, and now i do it more so to honor her memory than for any other reason. even though i had a nice top on and my jeans were my nicer pair, i kept obsessing the entire time about what i had on. i know i missed out of the majority of the service because of it. during one part of the service we went up to the front to light a candle for our LO. when sue and i sat back down, our candle went out. we tried to re light it 3-4 times from the person sitting next to us but it kept going out. all i could think of was how my mom was just shaking her head at me and blowing the candle out over what i was wearing. LOL. there were many others there with jeans on who i know didn't give me a second thought but it is just a personal thing.

yesterday, bob and i drove to madison to pick mark up for his spring break. he will leave monday with a high school friend to fly to arizona to relax and enjoy the weather at his friend's grandparents house. i have about 1/2 of his laundry done already. i know i spoil both my boys but i don't mind. i think matt might drive home tomorrow to see mark before he leaves. i anticipate a very low keyed and relaxing rest of the weekend. just what the doctor ordered before i start work on monday.

a cold but relaxing weekend

2008-03-10T22:26:00.008-05:00

last friday bob and i went up to door county for a long weekend get-a-way. we just got home a few hours ago. i figured a week from today i will be starting work so i wanted one last mini vacation. the winters in door county are so different than the summers yet just as beautiful. in the summer, especially july and august, the peninsula is filled with many tourists. you see the exact opposite in the winter. we read an editorial in the paper while we were up there about the winters. they stated there is no need to use your directionals while driving. a)no body is on the road and b)if you do come upon another car, they would recognize your car and know when you would be turning. that may be a slight stretch of the truth but not by much. as much as i love the beauty of the summer, i also love the peace and quiet of the winter.

we usually keep the house set at 50 degrees when we are not up there so when we arrived, i quickly pumped the thermostat up to 68 to warm up the place. by 9pm, it was only 53; not a good sign, but considering it was only in the teens outside, we (or should i say bob) was still hopeful. by 7am it was only up to 55, definitely not good. we quickly made a fire in the fireplace and placed a call to rick, the guy that does all the electrical/plumbing work for us. rick did not answer but we left a message stating the problem but also saying that we could manage over the weekend. well about 12 noon, rick showed up. it was not good. there was a cracked heat exchange in 2 of the 5 parts so the furnace was only functioning at between 55-60%. we can limp through the rest of the winter but we will need a new furnace. they no longer make that model so therefore they no longer make the replacement parts. just what i needed to hear!!! seems to me that with some of my blogger friends having problems with heating this winter it must be the winter for furnaces.

between the sun, fire and partial furnace we were able to get the temp up to 65 by the time we left today. i thought a lot of lori and unk, they would not have been happy campers but we were dressed warmly so we did fine. we took a couple of beach walks. with all the snow and ice on the beach i really had to look closer at the shoreline as it did not look familiar. it was like we were in a different place.

on another note, while up there i dreamed of my mom. this is the first dream i can remember in such a long time. it was a good one as well. already the memory of it is fading but i clearly remember her driving up (or somehow coming up) next to bob and i and calling our names. i think we were in a car as well. bob was in the front and i in the back. she was smiling and seemed happy, asking bob first and then me how we were doing, and if we were happy. even though it was somewhat hard as i then missed her, it was comforting to think that she appeared happy and wants that for me too.

we are actually suppose to have the next few days reach the 40's. we somehow managed to miss the last major snow storm that passed through so maybe we will start to melt some of this snow. i can only hope!

end of an era

2008-03-07T07:55:00.005-06:00

this past tuesday, the city of green bay and the state of wisconson went into a tailspin. word was leaking out that brett favre was retiring. people were in disbelief. i admit i was in shock as well. as much as everyone knew this was a possibility and that it would indeed happen one day it was something most people hoped would never happen. the media was reporting that many companies in green bay were closing for the day so that employees could go home to follow the story. employers knew that tuesday would be an unproductive day. you never would have known that there was a primary being held that day, there was minimal news regarding the voting, maybe a scrolling byline at the bottom of the screen. that national news paled in comparison to wisconsin's hero. networks scrambled to put clips of brett on the tv. regularly scheduled programs were canceled. the only news in wisconsin on tuesday was that brett was retiring after 17 years in the NFL, 16 in green bay.

yesterday, the reality of this was cemented in stone. brett flew up to green bay and gave a press conference confirming it. again, all stations covered the live broadcast. brett was very emotional. i was disappointed as i heard the news on tuesday but found myself crying yesterday as i heard brett speak. how could one not when you saw brett break down. he gave a very heartfelt explanation of how after 17 years of giving it his all, he was emotionally exhausted. anyone hearing him speak could not have helped but been touched. he thanked God for what he had been given in life, and then he thanked everyone in the packers organization and the fans. he also stated that his wife Deanna told him it is now time to look out the front windshield instead of keep looking out the rear view mirror. i found that very appropriate to all people, not just brett.

green bay is loosing not only a legend in football but a humble and wonderful human being. he brought such joy, enthusiasm and unpredictability to the game of football and made it enjoyable to watch every week. his work ethic is beyond compare. he is so down to earth, what you see is the real brett favre. he made us all realize that he experiences the same things as everyone else; death, cancer, and life's hardships. many of today's youth have known no other quarterback for green bay; realistically neither have my own boys, and they are 20 and 22.

i will miss you next year in the fall, as the football season comes around. yet i am thankful for the wonderful memories that i have of you. and i can truly say, i saw you play in person on lambeau field. you will be missed brett, but go and enjoy the rest of your life, you deserve it!

i have a job

2008-03-03T15:45:00.006-06:00

today i accepted a position. am i thrilled with it? to be honest no, but it's been 2 months since i started looking and i guess i'm just tired of this process and want to be done with it. i will start in 2 weeks at a major health company doing case management. every morning i will go into the office, have a meeting and get my to-do list for the day. then i will be off to the hospital(s) to review charts and possibly talk with patients and their families about whether or not services are covered under their plan. fortunately, i will not be the heavy to decide that, that decision will be made by the medical staff. the things that are appealing about this is once i am fully orientated (they say about 6 months) i have the option of going home after the hospital visits to input the data from home. once trained, i will also be working independently and have a lot of autonomy. this is important to me having owned our own business for the last 18 years. i think it will be very hard to adjust to not being the one to make major decisions about things like i have been doing. the benefits seem very good at this point as well. i start out with 23 PTO days (vacation and sick). that is a little over 4 weeks. for someone who typically is not sick very often, that is great. i will also not have to be on call or work weekends or holidays. so there are definitely some good pluses. i always said i would take something and if i didn't like it after bob found something i could look elsewhere. once i am fully trained this is definitely the type of position that would afford me to look and interview without them knowing it, thus jeopardizing my position. and who knows, after i really get used to it, i may love it for the flexibility if nothing else. that and i really think compared to other jobs this could be very low stress. always a plus!

i was really disappointed about the other job. last monday i had had my final interview for the oncology nursing position. the nurse over the whole program made a comment to me that after i had met with the staff the previous week, some of the staff were concerned about someone new coming in. maybe "my skills weren't as current as they wanted" and also "how i would fit in with all of them" (one nurse having been there 27yrs). i'm sure most of these comments were coming from the one nurse who i thought was brash. well, i had a gut feeling then that this was not going to work out and unfortunately i was right. i was disappointed and then angry. i know i could have done a good job for them, and i feel that with all their longevity, maybe what they need IS someone to come in from the outside but.....bob said things have a way of working out the way they are meant to be. he is probably right, if they have not found someone in the last year and a half and the interim person does not want to keep doing this job, that should be telling me something. yet, it always hurts to admit that someone doesn't want you. and actually, the people with the new position are taking a much bigger risk, i don't have near the experience in case management as i do in oncology. oh well....

so now as i look ahead to the fact that i will be working full time in 2 weeks, i suddenly start thinking about all the things that i had wanted to do since russ died, the cleaning of closets, the organizing of picture albums, etc. all that fun stuff right!?! well, most of that is going to have to wait until ?. i may get some of it done, but not a lot of it. oh well..... now i look at it as i have 2 weeks to plan lots of fun things to do instead! wish me luck!!!

friends

2008-02-27T00:18:00.004-06:00

today, or actually yesterday as i look at the time, i met and had lunch with 2 dear friends. one, k.d., i hadn't seen in probably 20-25 years and the other, s.s., was my best friend from high school. s.s. and i both attended illinois wesleyan university where we both graduated from their school of nursing. we moved to champaign-urbana to start our careers together and that is where we met k.d. who was also a new grad. both s.s. and k.d. remember the exact starting salary we started at, i don't, i think they said it was somewhere around 5.35/hour. that was considered very good money 30 years ago for someone fresh out of college. i was able to have a very nice apartment, have a car, pay for gas, car insurance, etc., have a social life and still put money into savings! i had contemplated going back to school 3 years later for my masters but decided against it as the money was too good and i didn't want to go back to being poor! go figure.

so many fond memories were created in the year and a half we worked together. the 3 of us worked the pm shift so we would go out afterwards for a drink or two, one of our favorite hangouts was "lums." not sure they are in business anymore. we became very close and even though i have not kept in contact with k.d. for probably close to 20 years and not as close of contact with s.s. as i would have liked or should have for that matter, we seemed to pick up and reminisce without problems.

we all are still married to the same men, a feat in itself by today's standard. we also all have children in college, although k.d wins the prize for having all 4 of her kids in college at once! WOW! we have also all lost a parent in the last year, but for different reasons. i also realized that there is always someone else who has burdens and reasons to grieve greater than mine. i will hold both of you in my thoughts and prayers as you both struggle with your family issues. we never know what is in store for us but do the best we can with the hand we are dealt. i admire both of your strength in what you are facing, especially you s.s.

it was a great way to spend a long overdue reunion of sorts. we promised each other to make the 60 mile trek for each of us to meet and not wait another 20+ years. i hope we can stay true to that promise. thank you both for being the highlight of my day.

moving forward

2008-02-21T10:17:00.003-06:00

yesterday was the first day since i have started blogging that i did not check in with my own or anyone's else's blog for that matter. i'm not really sure why that happened. i did think about it after dinner but bob was on the computer for quite some time and by the time he got off i decided i was tired and just went to bed.

yesterday i had an interview with the staff at the oncology clinic where i have applied and am interested. it is similar in set up to a clinic i worked at 20 years ago but this practice is larger. the staff i met seemed nice and all got along well. one of the nurses was a little brash in some of her questions to me but i think i handled it well. afterwards i wondered how i would have reacted to her prior to me caregiving, if it would have rattled me more. i don't know, we all admit that this process of caregiving has changed us and i would like to think i am more tolerant of others because of it. i also think these nurses are pretty protective of the staff they have and want to make sure whoever comes in to work with them and supervise them will be a good fit. and that's what i want to know as well.

yesterday was also 5 months since russ died. maybe that's why i didn't make more of an effort to go on the blogs. i felt pretty good about the day and i wonder if subconsciously i wanted to see if i was strong enough to get through the day by myself. like terry said this morning, i not sure anyone else realized it was an anniversary day of sorts. bob didn't say anything to me about it nor did the boys when i talked to them about the lunar eclipse last night. but that's ok too. life goes on and i want them to be happy. i want to be happy too. i know i will always remember these days whether anyone else does but i was glad that yesterday came and went without sadness.

february 15, 2006

2008-02-15T12:55:00.004-06:00

i apologize beforehand as i know this is a long post. last year i didn't have time to write down my thoughts due to caregiving for russ so 2 years later i am.

my mom and i were always close. we were able to share a lot of things and so enjoyed doing things together as well; shopping, going out to eat, playing golf, watching tv or movies, reading books together, and just talking and laughing. even though russ and i shared something very special together, having the same birthday, if i am totally honest with myself, i always felt russ and sue were closer and maybe i felt a little closer to my mom. yet i know they both loved us both as i did them. i was very blessed to have two such wonderful, loving and supportive parents.

christmas of 2005 gene and russ stayed with me and my family. every year they alternated whose house they stayed at so as to be "even." russ was noticeably and drastically slipping at that time so i was able to have some good "heart to heart" talks with my mom as to what may lie ahead and some tough decisions she might have to make. after they went back to door county after christmas, i discussed with my sister how one of us should call them every day to check in with them. i also made the 3 hour trip up north for a day every other week. my mom was still playing bridge approx. 2x/week which meant russ was alone for up to 4 hours. not a good thing but my mom needed to keep some part of her life for just her. russ could no longer make a sandwich for himself although he would tell you he could. we encouraged my mom to make it for him before she left and write a note as to where she was and when she would be home.

on february 15, 2006 it was my day to call and i did early afternoon. as soon as russ answered the phone i could tell he was extremely anxious. i tried talking to him calmly and asked him if gene was there. he stated he didn't know. i heard him call for her but no answer. i asked him if he had eaten lunch and he didn't know. he kept mumbling about a note that said something about door county memorial hospital ER with a number. i didn't think too much about it because i knew one of the bridge groups my mom played for was the hospital auxiliary and they indeed did play at the hospital.

i asked russ if gene might be taking a nap and he said he didn't know but he would go check. bad idea. i knew he would forget that he had been on the phone. sure enough. now i had a real problem. i knew if i hung up i would lose the connection with him. i started screaming his name into the phone. this went on for at least 5 minutes. not long after i could hear a voice in the background talking to russ. soon afterwards i could tell it wasn't my mom's voice but one of her best friends. i could hear she was asking him if he had either mine or sue's phone number. all russ could say is "gene has it here somewhere." i kept screaming and hoping jinx would look near the phone and hear me or see the phone was off the hook.

my prayer was answered. jinx picked up the phone and told me that she had been gone but when she returned there was a message from the emergency department stating that gene was there, she had collapsed at bridge and was taken to the ER. they were able to revive her and she asked them to call jinx and see if she would go look in after russ. jinx called the ER back but they wouldn't give her any more information since she wasn't family except they would be flying gene to green bay for further evaluation.

i quickly hung up and called the emergency department. luckily being a small town, even with HIPPA, they were able to update me. my mom had not been transferred to green bay as when they were getting ready to load her into the helicopter she coded again. they had been working on her for the past 40 minutes when i called but with little success. the ER nurse, barb, was wonderful and kind. she described to me what was going on. they were able to get her heart going but there was no perfusion (or blood flow) in her extremities. her skin was mottled and they were unable to get a blood pressure. barb's best guess was that gene had a leaking aneurysm which then had ruptured. the next question for me was did i know if my mom had a living will and what her wishes would be, should they continue and hook her up to life support or let her go.

in the course of a few minutes i had to decide between life and death for my mom, my mother! i knew she had a living will and had instructed that she did not want to be hooked up to life support. she knew that would be no quality of life. my mom had always been such a vibrant, giving and loving person. she would not want to live like that. when i relayed that to barb she kindly told me that was the loving thing to do. she would do the same if it were her mom. she told me that in the short time she spent time with my mom when she was awake and alert, how gene was so sweet and cooperative and obviously loved and was concerned about russ being left alone. barb stated if we kept her alive she would never be the mom i knew as her brain and other organs had been without oxygenated blood for so long.

i had barely gotten off the phone with barb and was explaining it all to bob when the ER doc called me back to say my mom had died. i felt numb. what was i going to do? how would i tell my sister, much less russ? somehow i got through all that and the rest is history. russ came down to milwaukee to live out the rest of his life.

i truly believe my mom had no idea the severity of what was happening to her. as i stated, she and i were always close and i know that she would have asked to call me if she thought it was so life threatening. i thank God she did have enough where with all to call jinx to go stay with russ until we could drive up there. i also thank God for having a nurse like barb who was with her so that she wasn't alone at the end. i will never forget barb and am glad she was there to hold my mom's hand when i couldn't. barb even came to gene's visitation. this was a nurse who met my mom for the first time when she came into the ER. i'm not surprised that my mom touched barb's life, she had a way of doing that with everyone who met her.

i also thank God for sparing gene the last 19 months of russ' life. she had done so much for him, had been with him every step of the way and suffered silently alone for so long. my mom was a very proud and stubborn woman who hated to admit that she needed help. she also kept a lot of her feelings in and didn't let others know how she felt. i guess i can be a lot like my mom in that way. but most importantly i thank God for bringing me into this world, to have had a mother like gene, to teach me so many things. i miss you terribly every day. i know i miss you more this year than last year as i have had time to grieve you now but i hope you would be proud of me. i tried to continue what you did, caring for russ and surrounding him with love and security.

i will love you forever and never forget you. i think of you when i see a mystery book or a crossword puzzle. i think of you when i go out to eat and see certain foods on the menu. i think of you at the most unpredictable of times as well as the predictable ones. i think of you every day. yet i also thank God that you and russ are together again, with God, where you both are safe, and happy and loved.

happy 'tines day!

2008-02-14T08:34:00.002-06:00

i just wanted to wish every one a happy valentine's day and let you know i'm thinking of you today. you all have a very special place in my heart!

dreams

2008-02-11T07:28:00.000-06:00

when i was younger i used to dream a lot. for the most part they were happy or funny or even strange dreams. they seemed very vivid when i first woke up but then as the day wore on they faded from my memory. i think that is probably true of most people. one recurring dream i had as a youngster, or maybe it was more a nightmare, seemed to repeat itself and last forever. i was probably about 8 or 10 years old. i can still remember it. wolves would somehow get into our house and chase me around the kitchen. i would climb up on the counter tops to try to escape them. they would bark and snap at me until i woke from my dream. to this day whenever i hear the theme song from "peter and the wolf" it sends chills up my spine.

chris posted a week ago that she has been having nightmares. it got me to thinking. i can honestly say that since my mother died almost 2 years ago i have not dreamed. i seriously cannot remember waking up one single morning since her death having had a dream. i wonder if i will ever dream again.

pure beauty

2008-02-04T17:06:00.000-06:00

a friend of mine in book club is a master gardener. pat is also a very thoughtful and giving person. in november she gave me a white amaryllis plant in memory of russ that she hoped would bloom around Christmas. it actually bloomed in the beginning of december but lasted until almost the end of the month. it had 3 large flowers and was absolutely beautiful. about the time it died i noticed that another shoot had started growing. i mentioned it to pat and she said that it did not happen often but wasn't totally uncommon either. she told me how to care for it and that if this one bloomed, it could remind me of my mother.

well, this one fully bloomed a few days ago. this one has 4 large flowers, each one more beautiful than the next. the pictures above are of this blooming. like a fool i forgot to take pictures of the one blooming in december. it stands about 40" high and i had to put a stake in as it was starting to lean. the flowers are about 8" in diameter and absolutely gorgeous.

i like to look at symbolism in a lot of things in life. the first bloom had only 3 flowers, one for russ, my sister and me. this current one for my mom has 4 flowers, including her this time. i anticipate that it will be done blooming as we approach the 2 year anniversary of her death. what a wonderful plant to be able to look at every day and enjoy. i know both gene and russ would have enjoyed it as well.

p.s. as an update on the job front, the phone interview went well. i am to anticipate getting a call in 3-5 days to set up a face to face interview for the case management position. i also spoke with the gal about the oncology position. unfortunately they are still working on the job description BUT she is very interested in me so she will have HR set the ball in motion about the job i originally applied for and when the new one is finalized we can potentially look into that as well. so hopefully in the next week or so i should be able to make an informed decision about what is the best fit. i will keep you all updated.

end of the month

2008-02-02T07:46:00.000-06:00

the end of the month came and went. i have not heard back about the oncology job i am interested in. another company called me yesterday about a position in case management. while not a passion for me, the fact that i could input data from home and somewhat set my own schedule sounds appealing.

this second company will call me monday morning for about a 20 minute phone interview (or so i'm told). these phone interviews continue to amaze me. i understand it may streamline things on their end, but what happened to the face to face talk, gut feeling impressions? although, the thought of being able to do this in my jammies is right up my alley, especially if i find it is not what i'm looking for. after i finish with that, i will call the other place and see what the status of the new position is. i'm hoping that soon i will have a clear sign of what is meant for me.

i talked to pastor dave last week. as i have blogged before patience has never been a strong suit for me. he assured me that the Spirit works in ways we do not always understand so hang in there. still, this patience thing is beginning to wear thin....

i hope everyone remembered to say "rabbit rabbit" yesterday!

visitations / funerals

2008-01-30T22:53:00.000-06:00

a friend of mine from my book club lost her mother early monday morning. she had not been in the best of health and vicki said they used to say her mom had 9 lives as numerous times in the past they thought she would not pull through only to rebound and enjoy life some more. this past weekend, that was not to be the case.

visitation was this afternoon/evening. i wanted to go yet must admit i had some reservations. this was the first visitation i would attend since russ died. what i think affected me as much was the memory of my mom's death. in a little over 2 weeks it will be 2 years since she died. today was also bitterly cold, -30+ wind chill. schools were closed due to the cold. this was also the exact weather when my mom died. i remember some relatives and close friends were unable to make her funeral due to the cold weather. i had not been outside all day and the thought of it was not appealing for many reasons.

i drove with bob and 3 other gals from my book club. strength in numbers definitely holds true. we stayed for part of the visitation but i knew i was not ready to stay for the funeral service. i think everyone understood but to be honest, if they didn't, too bad.

when we got home, i decided it was a good night for chili. that also triggered memories. i remembered how my mom always cooked chili in the winter about once a week and how it always tasted so good, especially on cold nights. well, tonight would definitely qualify as a good chili night. i also remembered how last year we only had chili once. as much as russ loved chili, it went right through him, so bob and i decided, it wasn't worth it. well, life changes and goes on whether we want it to or not. and days like this are hard but we also learn how important it is to take those baby steps. i'm proud of myself for making it through the day. one day at a time.....

cold, snow, bitter cold, more snow

2008-01-25T10:21:00.000-06:00

this has been a different winter so far. yet when i stop to think about it, it really reminds me of the winters when i was growing up. back then we would get much more snow than we have gotten say the past 10-20 years or so. the same with the cold. we have really been spoiled the past few years, we have avoided that bitter cold we have recently experienced.

traditionally when it gets really cold, single digits or below, it is too cold to snow. the same has been true this year yet we have experienced both. it seems the weather warms up for a day or two, we get the snow and then, it returns to the sub zero weather.

we have already reached close to our season snowfall this year and we are really only 6-8 weeks into true winter in wisconsin. we typically get snow into april and on rare occasions may. moving here from illinois i noticed the biggest difference is that wisconsin has little to no spring. we tend to go right from winter to summer.

where am i going with this thought? i have been reminded a lot lately of what my oldest son matt asked me this past summer. we were sitting around and he asked, "mom, do you think grrr will make it through the winter?" matt didn't as he thought the snow and especially the cold would get the better of him. as i think about the winter we have had thus far, i know matt was right.

russ used to love the season's changing and for the most part winter, cold never seemed to get the better of him. his last 6 months of life he was forever cold. it could have been 80+ degrees out and he would have said he was cold and wanted a sweater on. even last winter, and we had a really mild winter, he was forever cold. it would be nothing for him to wear long underwear, a turtleneck, a wool shirt and then a fleece jacket - inside!

our upstairs stays warm in the winter but our ground level, the family room, and sun room, which became his bedroom and living quarters the last 4 months of his life once he could no longer do stairs, gets pretty chili in the winter. the sun room (his bedroom) has windows from floor to ceiling on 2 sides. it made a wonderful room for russ to be in, in nice weather with the view and all, but it has been pretty darn cold lately when we get our cold snaps.

matt was right, i don't know how he would have survived. as much as i miss him, i know he is warm right now in God's loving arms and enjoying the snow from afar. keep warm everyone! early next week, we may get up to close to 40 degrees. i can guarantee you that people in wisconsin will be wearing shorts!!!!!

empty feeling

2008-01-20T22:27:00.000-06:00

the boys both went back to school today - the house seems lonely already.

the packers lost - too many missed opportunities, mistakes and not enough offense.

really cold here(below zero) - plus i have 4-7" of snow to look forward to tomorrow.

it was 4 months ago today that russ died......

patience

2008-01-18T19:04:00.000-06:00

my meeting went as well as i think i could have hoped for today. the director of the oncology program was very kind, informative and honest. she explained that this new job has been in the works since june as the oncology program has been growing. we seemed to get along well, discussing physicians who we both knew and worked with 20 years ago, and shared ideas and philosophies about managing staff and patient care. i was asked some tough questions but i think i handled and answered them well. she gave me a few indications that she was interested in me and hopes to have something in writing to share with me by the end of the month.

i respected her honesty so even though i will continue to pursue other options i will also hang tight until the end of the month. patience is something that is not always easy to practice but once again it is something i will try to do.

an unexpected highlight happened as we were talking in the open cafe like area. one of my neighbor's walked by and asked me if i worked there. i stated no but i was finding out about some job opportunities. my neighbor looked at who i was meeting with and said, "oh nancy's great, you should hire her!" i hope it didn't look like this was a set-up! LOL.

things starting to look up?

2008-01-16T16:37:00.000-06:00

(another picture taken from our yard with all our snowfall)

i had my telephone interview yesterday. HR called me at 9am and when i hung up my phone said 10min 55sec. HR basically reviewed my resume with me, confirming dates and job responsibilities. After that was completed HR asked me to define my definition of customer service and give an example of how i have given good customer service. pretty quick and harmless. still not sure why it couldn't have been done on monday. oh well......

this morning i e-mailed the nurse who runs the cancer program to see if she could shed more light on this new position that is being developed. she e-mailed me back 5 minutes later and stated she had already contacted HR to set up a time for me to come in to discuss this new position. YEAH!! maybe there is some hope afterall.

i will meet with her on friday morning. hopefully i'll have a better feel after that what the position will be and if it might be a good fit for us both.

2 nights ago i had my book club. it was my turn to host it. i actually had fun getting ready and thinking about what food to serve, etc. one of the gals even commented to me that i was starting to look like my old self again. as much as i hated hearing that maybe i have looked like sh-t the past few months, it was nice to hear a compliment.

on a final note, it's my sister's birthday today. happy birthday sue! i'm sure gene and russ are singing to you today.

frustration with the job search

2008-01-14T14:46:00.000-06:00

i had felt really good 2 weeks ago about getting out resumes. it had been a new year's resolution to get out my resume early and get on with my life. there were a handful of jobs i applied for, some of which i felt qualified for, others just seemed might be a nice change to try. the nice thing with nursing is there is so many opportunities out there and so many jobs.

there is even this one job that lately i have felt good about, it would be helping oncology patients. that is what i did many years ago and has always been a passion of mine. my mom's mom died of breast cancer when i was in nursing school and i know that she is what lead me down that path. even with bob's and my business we have always had a few oncology patients so i have been able to keep my hand in oncology.

it has been over 20 years since i have applied for a job though. last thursday someone from HR called for me, unfortunately i wasn't home, and left a message stating he wanted to set up a telephone interview with me. we played phone tag thursday afternoon and friday. he called me this morning stating he wanted to set up a time for this phone interview and asked when i would be available. i asked how long it would take and he said 10 min. he said it was to make sure i was qualified for the position and to answer any questions i might have about it. i said i was available now, or tomorrow morning, etc. he suggested he call back at 9am tomorrow.

i was polite but after i hung up i thought, what the heck?!? why not just do it then? i had the time, and obviously he called me, so he had time. how long was it going to take to see that having more than 20 years of oncology experience i was more than qualified? i just don't get it. IF i qualify after tomorrow, then i will have to go and meet with someone in HR, and then if they like me, i will finally get to talk to someone that i will work with and really get down to the job stuff.

i realize that HR serves a purpose but i also think that there is a lot of layers involved to just make things more difficult than they need to be.

from people i have talked to this is pretty standard for at least health care positions in the milwaukeee area. no wonder there is a nursing and other health care professional shortage! boy was i ever out of touch to think that you could apply for a job and have something a week or two later. with bob and i having our own small business we were able to do that and it seemed to work. if i saw a resume i liked, i called them, talked a bit with them, and then set up a time for them to come in and really see what it would be all about.

at this pace, it could be march before i start working. i had no idea this is what i was up against. to make matters worse, the guy from HR said they are tweaking the job description from what had been posted but when i asked how it might differ, he didn't have the new one in front of him yet. AWWWWWWWWWGH.

guess i'll head back to the want ads and drawing board. as much as this job looked promising, bills will never get paid waiting on it.

on a better note, we have again had snow so we are back to our winter wonderland. AND the packers won on saturday. with the cowboys losing yesterday, the final NFC game will be played in green bay on sunday. Go pack go!!!!

tornadoes in january?

2008-01-09T10:22:00.000-06:00

2 evenings ago, south eastern wisconsin experienced multiple tornadoes. now if it were spring or summer it would be quite normal but in january? there has only been 1 other tornado reported in january in the state of wisconsin since the national weather service started keeping records in the late 1800's and that was in 1962. it is also not common to see 70 degree weather in wisconsin in january.

fortunately there were no deaths but over 30 homes were leveled around the racine and kenosha counties (just north of the wisconsin/illinois state line and about 30 miles from our house).

we had high winds at our home and what appeared to sound like a severe thunderstorm with the heavy driving rain. i can remember having occasional thunderstorms during winter months and it always feels so weird to hear them in the winter. fortunately no trees or other structures were damaged but our winter wonderland of snow is now gone.

cleaning up and starting over

2008-01-07T10:42:00.000-06:00

yesterday, and for the most part saturday as well, was spent putting all my Christmas decorations away. the tree is down, and all the reminders of Christmas 2007 and past Christmases. I always marvel how much bigger and more open my house looks after it is all back the way it normally is. funny thing though, after a few months i don't look at it like that anymore.

now i have more time to dedicate to finding a job. 2 more resume's were sent out last night. now it's just a waiting game to see what will transpire and where i will end up. at least it's given me something to focus on which is good.

the boys are still home for 2 more weeks. the last time they left for school it was the time that russ died, creating a new life for me. this time when they leave i will hopefully be getting ready to start a new phase in my life again. time will tell....

happy new year!

2008-01-01T20:12:00.001-06:00

2008 is upon us. how glad i am that 2007 (and 2006 for that matter) is behind me. there were many struggles for me in 2007 both with russ and personal so i'm hoping that as lori said, 2008 will be "my year" as well. i not sure it could get much worse.

today i have been updating my resume and applying on line for jobs. i needed to take a few months off after russ died to start to make my way back to the "real" world before i started looking for a job. i know i'm not really back yet but with 2 boys in college and neither bob nor i bringing in a paycheck, 1 of us needs to get back to work.

bob continues to pursue new paths and i continue to fully support him in this quest. we both know he could find a job in a flash (he is a pharmacist by nature) but i hate for him to just take something that he doesn't want because then he will not have the time to continue to network and look. i figure if i get something now, by the time he finds something if i don't like what i'm doing, i can quit and look for something else.

what do i hope for in 2008? joanne posted a few days ago and really got me to thinking. to be honest, i still haven't fully figured it out but here are some thoughts. i hope for a peaceful year, a calm year, a year without the stresses and pressures i have felt for so long. i know that won't always be possible yet i hope for more good times than bad.

i hope for love and understanding as well. this journey that i traveled on at times made me have many negative feelings about myself and others. i want to be able to put all that behind me and start to build on positive relationships as negative ones only bring me down. life is too short and no one is perfect so i need to try to be more tolerant.

i want to laugh more. too many tears were shed this past year, enough to last a long time. laughter soothes the soul so i will try to take life less seriously and laugh. i use to laugh a lot. i know i haven't laughed near enough these past 2 years. and i hope for joy and happiness for not only myself but for all my blogger friends and family.

for those of you still caregiving, i pray and hope for easy days, for i know that the road you are traveling will not get better. cherish those lucid times and remember to take long deep breaths along the way. don't forget the importance of touch with your loved one and tell them you love them. we all know how scared they must be.

for you caregivers no longer caring, i hope 2008 is also a year to find and rediscover yourself. take time if you can for just you. indulge yourself as you never had time to do before. you were all so unselfish with your time, now it's time for you.

i have to have faith and believe that God has a plan for each one of us. i hope both bob and i will find what we are looking for career wise and that both matt and mark will continue to make smart choices as they continue to grow into young men.

God bless us all!

lambeau field, brett favre, dream come true

2007-12-30T20:54:00.000-06:00

if you live in the state of wisconsin, you know on sundays in the fall (and hopefully early winter), life revolves around the green bay packers. we have been fortunate to have a truly incredible quarterback to watch for the last 16 years in brett favre. not that packermania has ever really faded, but with brett, it certainly has stayed strong.

the packers are the only team in the NFL that is not privately owned, but owned by the public. about 8 years ago, they sold stock to purchase shares to the packers to raise money to help expand and update lambeau field. i bought 1 share (for $100/share) for each of the boys for a Christmas present and framed their share for them. it will never increase in it's monetary value but they can proudly say that they own a piece of the packers. they now receive mail about upcoming stockholders meetings that they could technically attend.

to go and see a game at lambeau field is truly not something everyone can just do. season ticket holders specifically state in their wills who their season tickets shall go to and there have been people who place their children on the waiting list for season tickets, only to have them die at an old age and never make it up the list to get them. unless you work for a company that has season tickets or know someone who may be willing to sell you one of their game tickets, many people who live in wisconsin never have the opportunity to go and see a packer game played on lambeau field.

well today, i went to my first ever packer game AND at lambeau field! my brother-in-law got 2 tickets from someone he works with and told my sister she should take me. WOW. we arrived at lambeau about 2 hours before gametime and watched the warm-ups. it is such a mystique just to be inside lambeau field on game day. i have visited it before but obviously never on a game day.

the only down side to today was our tickets were inside the stadium behind glass. we had a great view of the field and obviously stayed warm but missed out on some of the real hootin' and hollerin' that you can only experience sitting outside in the 30 degree weather in late december (actually pretty nice weather for this time of year). i must say i was more than a little warm as i thought we would be sitting outside and i could only peel off so many layers and still have a place to sit and remain decent.

thanks sue for the invite, i had a great time. i can finally say i have seen the packers play at lambeau field, and brett favre too!

p.s. happy birthday unk, hope you had a nice day and dinner with your family!

Christmas is over

2007-12-28T09:47:00.000-06:00

i made it through the season with only a few minor bumps along the way. i really think for me, the anticipation of dreading this time, was almost as bad as the loneliness and hurt that i felt. we tried as a family to respect some of our old and long standing traditions as well as start some new ones, or at least vary them for this year.

Christmas Eve evening after we went to church we drove to look at Christmas lights, rented a movie and then came home to watch it and have a drink or two. this is what i anticipated to be the hardest as Christmas Eve had always been the 4 of us and my parents. instead of the usual nice dinner i always prepared, we made homemade pizza and all shared in making this. when the boys were young we used to do this quite often and had always had fun. somehow over the years we got away from this so it brought back good memories for all of us. it actually turned out quite tasty as well.

Christmas morning was laid back and quiet, just the 4 of us. in the afternoon my sister and her family came over and we opened up all the stockings that my mom had knitted for each and every one of us over the years. my sister's and mine have somewhat yellowed over the years as they are both well over 50 years old but otherwise still look great. we shed a few tears as we remembered earlier Christmases but after dinner we played Wii, which one of my niece's brought over, and had a really good time, especially with the bowling.

last night ended our Christmas celebrating as we went over to russ' niece and her family. we have been getting together with our families as we are the 3 families who moved away from galesburg, il., where russ and his siblings and their families all grew up to the milwaukee area.

i must say i am glad that Christmas is over now. i thought a lot about all my blogger friends, those that were grieving this year as well as those that are still in the throws of caregiving, wondering if this would be their last Christmas with their loved one. we never know what the future holds so we need to try to cherish each moment we can with our loved ones.

for cinn, i am especially thinking of you today. her mother finally passed away peacefully yesterday morning. i am glad your mom is free of this disease but ache for the sorrow you must be feeling. you did a wonderful job with your mom and i know she is very proud of you.

Christmas blessings

2007-12-24T22:19:00.000-06:00

i just wanted to wish a very Merry Christmas to all who read my blog. my blogger friends have meant so much to me over these past few months and have gotten me through some very difficult times. i will continue to check in with all of you and post again in a few days. i will be thinking of all of you and wish you peace.

3 months

2007-12-20T23:03:00.000-06:00

today was 3 months since russ died. it was also a thursday. except for the fact that i was wide awake well before 5 am, like lori, my day went well and i am OK with it.

2 nights ago "an affair to remember" was on with cary grant and deborah kerr. it was a remake of the 1939 movie "love affair". this was a favorite movie of my mom and mine. i can't tell you how many times we would watch it together and cry. it didn't start until 11 pm and i debated watching it as i wondered if it would be too emotional to see it without her. i also wondered if i would be able to stay up until 1:45 am when it would be over. i decided to watch it alone, stayed awake for the entire movie and found it very comforting. i didn't cry except at the end and smiled many times throughout the movie as some of my mom's favorite parts would come up.

i kinda feel it was her way of telling me that both she and my dad are ok. they have reconnected in heaven just like cary grant and deborah kerr did at the end of the movie. call me sappy, a romanticist and sentimental, but i really felt her presence while i watched it.

yesterday i stopped at church and spoke to pastor dave about me feeling so down last week and the anticipation of Christmas without my parents. we had a good discussion about not rushing these feelings and that it was good to let them out. i then sat in church by myself and prayed for strength to get through this next week.

like lori said, i'm just grateful that today i was ok. i pray for the same for you tomorrow terry.

it's beginning to look a lot like Christmas

2007-12-18T10:13:00.000-06:00

i'm feeling much better today and actually had a pretty good weekend. we have had SO much snow so far, over 23". last saturday we had another 5". initially they were predicting 1-3". i have hated going out shopping this year more than others but when i saw the weather report i suggested to bob that we venture out. as long as we took the roads cautiously, and went a good 10-15mph slower than the speed limit, they were fine.

it was a great idea on my part, (if i do say so myself) because the stores were virtually empty. we are downsizing this year for presents to begin with so it also made it easier. for one, it will be difficult Christmas and two, with both of us currently unemployed for the most part and 2 in college, need i say more?

i can't believe that with the exception of cleaning my house, i'm ready for Christmas, or as ready as i plan on being. usually i'm scrambling around at the 11th hour. i have to admit, it feels good, and good to feel positive for a change.

hard few days

2007-12-14T14:47:00.000-06:00

the last 3 days have been really hard for me. i have cried more in these 3 days than since russ died. there have been some highlights; taking with a cousin, visiting my old next door neighbor (a yearly Christmas ritual since moving out in the boonies 10 years ago), talking with janine on the phone (russ' hospice nurse), and even getting a few things accomplished around the house. BUT, overwhelmingly, i just can't seem to get past this emotional low and crying. i think i know what it is, and it can't be prevented.

a year ago this time, it was the first Christmas without my mom but i had too many distractions with caring for russ so i repressed all the feelings of grief as i didn't have time to deal with them. this year, there is nothing to occupy or distract me so i have plenty of time to think and thus i feel the floodgates are really starting to open up. the numbness is wearing off and i am finally beginning to grieve for both my mom and russ.

with what cinn is going through right now, it is bringing back a whole flood of emotions with russ at the end. i feel for her so much as i can't imagine having to experience this so close to the holiday. no time is good but this has to be the ultimate pits.

gosh i miss both my parents....

i also wish this pain would go away...

trying hard

2007-12-12T10:12:00.000-06:00

(photo taken off internet, not really our cookies)

the last week or so has been difficult for me in wondering what i should post about mainly because i don't' really know what i'm feeling. i can really relate to how chris needed some time off.

i have been going through the motions and trying to get myself into the Christmas spirit, mainly because i know my mom would want me to, especially for my boys. i have started decorating around the house and have some Christmas cards to send out. some presents have been bought, for bob's young niece's and nephews, but nothing for my immediate family. of course it would help if my boys gave me some ideas...

yesterday i went over to my sister's house to bake some Christmas cookies with her and my niece. they had invitited me last year but i couldn't with russ. this year i wasn't sure i was really into it but decided to go as i didn't have a good excuse not to.

the first hour or so i felt like i was just going through the motions and being pleasant because that is what i was brought up to be. i have to admit though that as the day wore on, it was fun. my niece can be a space cadet at times (even though she is very intelligent, i think at times they go hand in hand) so i know she helped to lighten up the day.

we ended up making 7 different types over about 9 hours. the last we made, the cut outs with frosting, had to be the most fun. maybe we were overly tired, or because neither kristen or i felt we were as creative as my sister who is a pre-school teacher and has frosted many a sugar cookie, but i have to admit i ended up having fun.

i guess it showed me that at times i have to force myself to do things. yes i could have just as easily sat home and did nothing and i would have enjoyed that as well but i didn't. i think my mom would have been proud of me for going over and spending time with my sister and niece.

what makes a caregiver?

2007-12-04T10:25:00.000-06:00

the other day i had to stop at someone's house to drop something off and we got to talking. she was asking me about how things were at the end with russ. i didn't even go into half the details of his struggles and i could tell i gave her more information than what she wanted.

both of her parents are still alive but are not in good health and live a few hours away. she was stating how she was fearful of what the future held for them as they didn't have any financial resources for assisted living or nursing homes and she knew that she didn't have the patience or desire (i guess for a better word) to do what i did.

how many times as a caregiver i heard "i don't know how you do what you do", "you must be such a saint." at the time i never really thought about it as most of my blogger friends don't. we just did what needed to be done.

the other comment that probably infuriated me more than any other i heard over the course of my caregiving was "since you are a nurse, it must be easier for you." "you are better trained at dealing with this than i would be." nothing could be further from the truth. so many times i wanted to scream back and say, "being a nurse makes no difference, it is still just as hard for me to watch russ slip away, i am his daughter first and foremost."

i would frequently tell people that at the time, i was the only one that was a nurse of my blogger friends and i would get a shocked look. "you're kidding?!" "i could never do it, i don't know how they do."

there is not a real point to this post except to vent some of my frustrations at some of the lame excuses i hear from people. i realize that there are definitely instances where the situation won't allow family members to care for their loved ones but overall i feel our society is becoming too selfish. the love and responsibility for family is not what is used to be or should be. there are too many people out there that are not willing to give up a little of their life for a while to love and comfort and try to make their loved ones life, those that cared and loved them, a little better.

family can be advocates, caregivers and support even from a distance but how many of us have not even seen that. so many feel "i have my own life now, it's not my responsibility and let someone else deal with that." that is the epitome of selfishness in my opinion.

baby steps

2007-11-30T08:43:00.000-06:00

2 days ago i finally started to tackle making russ' bedroom back into an office/guest room. in actuality he had not been in there or able to sleep up there since last may. his ambulation became so difficult from the AD that he could no longer do stairs. yet the majority of his clothes and other few belongings were still there as i didn't have room downstairs where he spent all of his time.

our computer used to be in the guest room but was moved out when he came to live with us. somehow sitting down at the computer when he wanted to go to bed didn't seem fair to him. besides i also didn't want someone leaning over me and breathing down my neck as he would have done, especially early on.

tuesday evening the computer went back upstairs from our living room and yesterday my sister came over and we went through most of russ' clothes. did any of the men in our lives want any, which pants would i take to day care for backup use for them, and which would go to goodwill? we are going to have a stuffed animal (teddy bear) made for both of us and the 5 grandkids with russ' shirts so we had to pick out what shirts we wanted for those. the hospice i used for russ will make them for us as part of their services. my understanding is that their volunteers make them. i picked the shirt that russ is wearing in the picture on my blog. it was interesting to see what each of my boys picked. i had them look through his shirts when they were home over thanksgiving.

there were definitely moments when tears were shed as we looked through his belongings, triggering memories but i am glad we were able to get through a good chunk of his things. selfishly, i am also glad to have more space in my living room again. there are still some items i'm not sure what to do with but i'm hoping in time it will make sense to me.

thanksgiving letdown

2007-11-27T08:46:00.001-06:00

yesterday was a tough day for me. i had no energy to do things and for the most part didn't. both boys are back at school and the house is again pretty much empty. bob thought he had a lead for a new job but it didn't pan out. i sat around for most of the day either struggling to read my next book club book but also cried and prayed a lot.

fortunately bob came home and said he might have another possible lead. he knows he can always go get a job at either a hospital or retail store but after owning your own business for 18 years, that is not his desire. he wants to branch out more and maybe do some consulting for some type of outpatient health care operations. i totally agree and support him in this decision.

we watched dancing with the stars last night and had a quiet evening. this morning i awoke feeling much more refreshed and more positive. i know there will continue to be little bumps in the road ahead, i guess i just needed a little pity party yesterday. today is a new day and i'm ready for it with a new attitude.

happy birthday matt!

2007-11-24T19:26:00.000-06:00

(matt dressed up at thanksgiving this year)

today matt turned 22. unfortunately he is not at home to celebrate with us. he left yesterday with his girlfriend's family to go deer hunting in northern wisconsin.

he has never gone deer hunting but it is always something he has talked about. this summer he took the hunter's safety class and is using the rifle that was bob's dad. bob used to always hunt with his dad until matt was born. i'll never forget what my father-in-law told me when matt was born. "you couldn't have made me prouder than to give me my first grandson but you couldn't have picked a worse time to have him, in the middle of deer hunting season." i think bob was secretly glad as he mainly hunted with his father to spend time with him. over the years the attraction was no longer there for bob so staying home to celebrate matt's birthday was a good excuse. bob also said i wasn't real keen on the whole idea. but it is definitely popular if you live in wisconsin. unless matt gets one tomorrow morning he will be unsuccessful his first year.

i don't know where all the years have gone. certainly i'm not THAT much older than when i had matt. matt has always been an easy going kid. even at a young age, he slept through the night (8 hours) at 4 weeks and by 8 weeks he was sleeping 12 hours. i remember bob used to ask me to keep him awake so he could see him in the evening.

matt was my climber though. when i was pregnant with mark i had to put up gates to keep him out of the kitchen. as i had really bad morning sickness for a few months i spent a lot of time on the couch. if i didn't block off the kitchen matt (at about 17 months) would push chairs over to the counter, climb up on the chairs, then the counter tops and then try to climb up and into the kitchen cabinets. you can imagine my panic the first time i saw him doing this!

this is the first birthday he has not been with us and it seems so different. i'm sure he is just fine with it and so are bob and mark, it's just a mom thing. we will celebrate tomorrow when he gets home and before he takes off for school.

you have continued to be a real joy and blessing to raise and be around matt. i'm so proud of the young man you have turned into. i hope you have a happy birthday. i love you mitts!!!

thankful blessings

2007-11-23T20:06:00.000-06:00

overall, yesterday went very well. i think the total count was an even 60. it worked out so well celebrating thanksgiving in the church. the kitchen was huge and had everything we needed. i arrived at 7:30am with my cousin to unlock the church. other cousins arrived shortly thereafter and by 8:15 we had 3 turkeys and 2 turkey breasts in either the ovens or nesco roasters. not long after the potatoes and dressing were made, along with other hot dishes and the salads. there were at least 8-10 of us in the kitchen and nobody bumped into one another. only the deserts had to be made ahead of time. with the multiple ovens things could be prepared that morning eliminating a lot of work that preciously had been done the day before. also the table and chairs were already set up so no moving of furniture and hauling of the table and chairs back and forth.

the rest of the clan started dribbling in around 10:30 and we all were ready to eat at 12:15.

another new tradition we started this year was started by the husband of russ' great niece who was married 2 days after russ died. jordon is the associate pastor and youth minister at the church. he asked us all to make a big circle before we ate and hold hands. he said a brief opening prayer and stated we would go around the circle and if we wanted to we could state what we were thankful for. i would say only about 10-12 of us did, but those who did, spoke so meaningful from the heart. common threads were thankfulness for the food and family present, health, new lives and of course for those that are no longer with us. another was also for remembering family traditions yet realizing that new ones needed to be started.

(russ' sister, brother, and sister-in-law)

i was not able to speak at all as the tears were streaming down my face. they were not only sad tears though for missing both my parents. some were also thankful tears for being able to be with russ' family as it somehow made me feel closer to him. russ and my mom so loved and looked forward to spending thanksgiving in galesburg with his family so i know he would have been pleased and proud that we continued to go and spend it with family.

most years we also have a theme and this year was no different. we were asked to dress up as a title of a song and people had to guess. bob wore a mask on the back of his head (2 faces have i), matt dressed up like elvis did for jailhouse rock, mark dressed in all black with a paint brush (paint it black) and i just went as myself (nancy with the laughing face - russ and i danced to it at my wedding). other good ones were "material girl", "deck the halls", "leader of the pack(ers)".

we were also able to watch the packers win by watching a delayed tape of the game on a projection screen. everyone was told not to check text messages or let on if they knew the results.

now if i can only get through christmas as easily. i'm not convinced i will as i think that will be tougher. it was my mom's favorite holiday and the group is much smaller and intimate. christmas eve was spent just with my my parents and christmas day we always get together with my sister and her family as well as my parents. there will only be 10 of us on christmas vs. the 60. guess i'm going to have to talk to my niece kristen (and greg) about adding to those numbers! LOL.

happy thanksgiving

2007-11-20T22:54:00.000-06:00

tomorrow we will be leaving to go to galesburg, il for thanksgiving. it is where russ was born and raised and most of my relatives on russ' side still live.

ever since i can remember we have gone to galesburg for thanksgiving. initially my grandma used to cook the dinner. after she died, russ' older sister had the dinner. she is now 86 and about 10 years ago, the torch was passed to my cousins who live in town. the meal has been at either of 2 cousin's home's, depending upon who won (or lost) the coin toss.

this year we are anticipating over 60! as the numbers increase it is becoming more difficult to seat us all at one house, even with moving out all the living room furniture and filling it with tables from the church. each of us are assigned a dish to bring so the person hosting only does the turkey(s) and potatoes. all those living in town bring the rest of the hot dishes. this year we are going to gather at the church in town where my dad and his siblings grew up and many of my cousins were baptized if not married.

the church has a huge kitchen with multiple ovens. the chairs and tables are already there. there will be the nursery for those really young ones (4th generation) and the youth room (for the 3rd generation). the thing they are still working on is how to get a big screen TV there so we can watch the packers beat detroit!

hopefully it will work out just great. i would hate to see this tradition come to an end mainly because of the numbers.

it will be a bittersweet reunion but one i am looking forward to. it was 2 months ago today that russ died. i felt a little out of it all day but got through it. i stopped at the in-patient unit and had a nice visit with marlene and glenda - 2 of the nurses that took care of russ. i also left a voice message for his home hospice nurse janine and hope to get together with her after thanksgiving.

even though there has been so much grief and sadness in my life, i still believe i have much to be thankful for. i know russ is no longer suffering and is whole again with my mom. as much as i miss them both i cherish the wonderful memories i have and all of the extended family i will be surrounded by on thanksgiving. God is good.

to all of my "other" extended family, i wish you peace on thanksgiving and pray you have a good day.

for stef

2007-11-15T16:45:00.001-06:00

stef lost her dear nonna last evening after a long battle with alzheimer's. stef had to be closer than most people i have ever known to her grandmother. nonna helped raise stef and was there every step of stef's life. she was there to hold stef, hug stef and give her words of wisdom and encouragement along each and every stage in stef's life.

i am actually envious of the relationship stef had with her nonna. i was especially close to one of my grandmother's growing up, yet nothing to the extent that stef has described.

stef is a wonderful young woman with insight and tenderness and wisdom well beyond her tender young age of 20. i'm sure some of it is just her nature but a lot of that must be due to the influence and close relationship she had with her nonna.

i know the days, weeks, months and even years ahead will be tough for you stef to face without your nonna physically there. but nonna will always be with you in your heart stef. you will always have those precious memories and lessons that nonna taught you to pass on to your children and grandchildren some day.

you see stef, nonna is not really gone. she lives within you and your beautiful soul. as nonna taught you, hold your head up high and do not be afraid. your nonna is with you with every step you take and every breath you breathe. she is so proud of you and loves you as much as you love her.

may God hold you close as you grieve for your nonna. thank you for sharing your nonna with me and teaching all of us the meaning of unconditional love.

a nice weekend

2007-11-11T22:51:00.000-06:00

besides the weather being fairly nice and warm, it was a pretty good weekend. on friday i met and spent the day with my best friend from college. she lives in the chicago area so we drove and met 1/2way. we did a little shopping but mostly sat in one of our cars and talked and took an exceptional long lunch so that we could talk as well. linda is a minister and helped marry bob and i. she has been such a strength to me over the years as we have shared our lives with one another. we have been there for each other through good times and bad. there is a third friend ann, but unfortunately she lives in dallas so we don't get to see her as often. both ann and linda did come up for russ' funeral which was so special.

we talked a lot about how i was doing since russ has died. linda's mom lived with her for about 5 years before she died 10 years ago of cancer so she was also a caregiver and knew first hand some of the feelings i have. she was especially glad that i have continued to blog and keep up with all my fellow bloggers on a daily basis. she also was able to give me some specific psalms to read that she felt would be helpful and comforting. but most importantly she gave me the reassurance that God is with me and will continue to help me get through my grief.

saturday bob and i went to madison to see mark. he has been struggling somewhat this year so it was nice to go and just hang out with him. matt came too so that made it extra nice, we watched wisconsin beat michigan in football on tv, went out to eat and then went and watched the wisconin hockey team play north dakota. unfortunately they lost but it was a fun game to watch.

today has just been a lazy day. the packers played and beat minnesota (sorry robyn), and continue to amaze everyone how well they are playing this season. brett favre is just so much fun to watch. congrats to betsy and joanne as the steelers won today too!

i also wanted to take this time to express my appreciation to all veterans, both past and present who have served our country to protect us and our freedoms. lori, terry and janine i mean you in addition to terry's dad, betsy's and chris's dad, and of course russ. for those of you i have forgotten, thank you as well!

moving in the right direction

2007-11-08T19:29:00.000-06:00

(we picked this thank you card as it looks so much like the beach in door county in front of my parents place that russ so loved to walk)

chris' post inspired me to finally stop procrastinating and sit down today to write those thank you notes to people who had done something special for us after russ died like sending food, flowers or donations. it has been 7 weeks since russ died and i know they are long overdue yet the thought of sitting down and writing them just exhausted me. it was definitely something i was dreading.

my sister and i had split the list and i knew she finished her's early last week so that was also a motivator.

it wasn't busy at work today so i stayed at home. i set up a tray on my lap with the list and note cards and it took several hours but i finished. i had a few shows i had taped on tv so i half-watched and half-listened to them as i wrote the cards out.

to be honest some of the notes were pretty standard thank you's but there were also quite a few that i wanted to write something more personal. those were the ones that i really had been putting off. i think the fear of it becoming too emotional was why i was procrastinating. but once i started i got into a rhythm so i kept plodding along and got through them all with only a few tears.

i must say it is a good feeling to be done. my mom had always been a stickler for writing thank you notes so i didn't want to disappoint her. another major hurdle done, now on to the next, what ever that might be.

i'm tired

2007-11-06T23:23:00.000-06:00

the last week has been spent clearing and sorting out medical supplies and records, office supplies, furniture and anything else you can pretty well think of.

i mentioned a few weeks ago that in addition to adjusting to life without russ, bob's and mine business will be closing. we downsized once early this spring when the boys were home but i finally persuaded bob it was time to do it again. the rent we have been paying for the basement space below our office was much too expensive for just a storage area compared to renting a storage unit.

after 18 years in business, we have accumulated a lot of stuff! it doesn't help that both bob and i are pack rats. we also have to store all patient records as well as financial records for 7 years before they can be confidentially shredded. we have made numerous trips to the dump and the recycling center. i have also become quite proficient at posting things on craig's list and have been very pleased and somewhat surprised to learn that what is one's garbage can be another's treasure (and be willing to pay for it to take it off your hands!)

last thursday "2 men and a truck" arrived early in the morning to load up the big and heavy stuff and transport it to the storage unit. in about 3 hours they were finished and about 3 days later bob and i were finished clearing out the basement and transporting the rest of the smaller stuff over.

bob has kidded me that it has been good physical exercise to distract me from thinking about all that has happened. i have been mentioning to him that i needed a distraction, but i'm glad we're done with this. i'd like to think i can think of something more exciting to occupy my mind and time. now i just have to wonder where all the rest of the stuff will go when we close down for good. our 10x24' locker is pretty full....

here's hoping for some restful nights sleep. i just wonder where i put my ben gay?

for betsy

2007-11-04T07:18:00.000-06:00

2 days ago betsy's mom passed away peacefully in her sleep. i met betsy a few month's ago through our blogs and have always felt a connection to her. it seems hard to realize it was only relatively a short time ago. our lives were fairly similar. her dad passed away in december of 2005 suddenly and unexpectedly. her mother had AD and was unable to live by herself so betsy moved her in with her and her family. betsy has 2 children (a daughter in college and planning a wedding and a very active high school son) and a wonderfully supportive husband. she also has 1 sibling. betsy also attempted to try to work out of her home for the business she and her husband own. she became a 24/7 caregiver. some days were easier than others but most were frustrating as she watched the mother she knew and loved loose a little more of herself every day and betsy was helpless to do anything about it. yet betsy hung in there and loved and cared for and supported her mother.

there must be many conflicting emotions running through betsy's mind and heart. to loose both parents in a relatively short time frame is extremely difficult yet she had already lost her mom some time ago for the most part. i know she takes comfort in knowing that her mom is now whole again and with her dad. betsy, you will have difficult days ahead of you as you now have time to grieve the loss of both of your parents. take your time, be gentle with yourself, and take baby steps in doing so. these have been the words of advice given to me by yourself and others. now it is your turn to listen and try the same.

please know i am here for you as are many of the other friends you have met and made on the internet. it is hard to comprehend that the first 3 real blogging friends i made back in the summer, lori, flinty and betsy; we have all lost our LO's to AD. i have met many more along the way who have also suffered losses and will continue to be here for those still caring for their LO's. we are family.

may God watch over you and your family betsy as you endure the next few days, weeks and months adjusting to your new life. please know every time i see an angel ornament i will think of your mother. God bless us all.

on a happy note, my niece kimi, who did a wonderful job reading all our personal memories at russ' funeral is celebrating a special day today. happy birthday kimi and cheer those packers on to a victory! have a great day today and always. i love you!

rabbit rabbit

2007-11-01T19:21:00.000-05:00

i am a superstitious person and i think most people who really know me would agree. i always have been. i guess i inherited that from my mom, who inherited it from her mom. there are definite things and rituals i must do.

today is the first of the month and so i said "rabbit rabbit" this morning. don't ask me where this originated from as i'm not really sure. someone in high school once told me that one is suppose to say rabbit rabbit the first thing every morning of a new month. if you do you will have good luck for the month. so.... every month i do and make sure bob and the boys do as well. now that the boys are in college, i text them to remind them.

i have many other superstitions that i follow. being of german descent, pork and sauerkraut must be eaten on new year's day along with burning a bayberry candle to bring good luck for the new year.

being that i was born in october and so was my mom, opals are our birthstone. all of her opals were automatically passed down to me in that it is bad luck to wear opals if it is not your birthstone. if i see people wearing them i will ask them if they were born in october. if they say no, i bite my tongue but secretly think to myself that they have no business wearing them and say a silent prayer that they will not have bad luck.

some other silly things i do that were instilled in me are, never put new shoes on a table, never cross someone on the stairs in a home, always lift your feet going over railroad tracks (i have become very talented doing this while driving). i also will not fall asleep in a car with my feet on the ground for fear we might cross some tracks.

these are just a few. many people have told me how weird i am or give me strange looks as i describe this fetish i have. one of these days i plan to look into the origins of some of my specific superstitions. but now a part of me just likes remembering to do these things as it continues to remind me of my mom.

so rabbit rabbit everyone! it's not to late to start!!

grief

2007-10-31T09:01:00.000-05:00

grief is so different and individualized. i remember after graduating from nursing school i was fortunate enough to hear Elizabeth Kubler-Ross speak twice. it was shortly after she had done all her research on death and dying and had identified the 5 stages a person may go through when facing death. denial, anger, bargaining, depression, acceptance. she was fascinating to listen to and was so pertinent to my oncology nursing practice.

i have thought many times since russ died how the ones left behind also go through stages of grief. depending upon the circumstances of the death, sudden, drawn out, suicide, etc. there are many emotions that are apparent as well. for me i think i am finally dealing with my mom's death along with russ'.

i had mentioned over the summer that i am in a book club. last night was my big night, i was presenting research material and leading the discussion on the book i had picked. i have always loved to read yet since russ has died i have no real desire and when i attempt to read i can't focus and have no comprehension of what i've read. even something as simple as reading the morning newspaper has become an effort. needless to say it was an real struggle to finish the book and an effort to prepare for last night.

fortunately every one in the group was understanding and they are very opinionated and so the discussion pretty much led itself with me offering a few tidbits every so often.

i know in my heart this is my grief expressing itself. i will be patient and not push things. i am sure my desire and love for reading will come back to me in time. AND thanks terry for your insight into last night's discussion. we read john's grishom's "an innocent man" which took place in OK, not far from moore so i tapped into terry for his wealth of knowledge and insight.

wonderful keepsakes

2007-10-26T09:27:00.000-05:00

about 2 weeks ago i received a DVD in the mail from unk entitled "2 trips, 2 funerals." it took me about a week to get up the courage to sit down and watch it. how glad i am that i finally did. on it contained pictures and short video clips of both my mom's and dad's funeral.

i remember unk having his camera and taking pictures at both of the funerals but had no idea the extent. here is a wonderful memory of 2 very painful times in my life yet i find it comforting as well. he captured so many things, the preparation for the funerals, people gathering at my parents home after both funerals, pictures of the funeral home, the church and the weather for each. he was even able to record the playing of taps at russ' funeral.

he did a wonderful job and i will always cherish it. thanks unk. i love ya!

happy birthday bob!

2007-10-23T18:36:00.000-05:00

well, we are at the end of our october family birthdays. dare i say, the best was saved for last? i know bob would kid me and say that.

you never really know what you are going to get when you marry someone. i will be honest and say there have been a few hard times during our almost 25 year marriage but what marriage doesn't have trying times? overall it has been good, very, very good.

i think the last 2 years have really shown me what a wonderful caring man i was lucky enough to find and marry. i know that bob truly loves and cares for me, unconditionally. he has proven to me that when we took our vows he meant it when he said through good times and bad. i know it would have been extremely difficult for me to care for russ without the love and understanding of my husband. there were numerous times i would ask him, "are you ok with this?" or "are you sure we can do this?" never once did he pause or hesitate, it was always "absolutely, we're doing fine, it's not that bad." and he really felt that way.

i remember only 2 months before my mom died, both gene & russ were down visiting for christmas. gene was having a rough night as russ had had a bad day. without prior knowledge or discussions bob told my mom that we would always be here to help her with russ, that she shouldn't worry, we would do whatever it took to keep him safe and support her. she started crying as i know she was deeply touched by what he said. i was crying as well.

bob always stepped right up to whatever was thrown at him. whether it was russ thinking bob was the maintenance man, someone new to meet (almost on a daily basis) or frequently just "that guy" he was always there for russ. during the periods when russ was up MULTIPLE times during the night, bob would alternate getting up with me at bob's insistence. he never seemed to be rattled by the numerous repetitive questioning or russ needing help getting dressed or walking. as for cleaning up messes (you know the kind i mean), he never hesitated, and usually without gloves. now if that's not true love!

i remember always kidding my mom that russ always put her on a pedestal and would do whatever she asked, she was "the queen." well, i'm beginning to think i know just how she felt.

happy birthday bob. thank you for all your love and support. i love you!!!

have faith

2007-10-22T20:49:00.001-05:00

the senior pastor at our church is retiring at the end of the month and yesterday was his last day to preach. he has been here 25 years and it was very emotional for him as well as the congregation. his sermon was taken from luke 18 1-8. he talked about never giving up hope and being persistent in prayer. even though God knows what we will be praying we still need to pray and have faith.

i learned this lesson while caring for russ. i prayed daily and multiple times at that. God did hear my prayers, and they were answered, in His time.

i continue to pray that God helps all my caregiver friends deal with whatever struggles they are facing. AD is a horrific disease and one that presents new challenges each day. i also pray that God will continue to give me the strength to get up each day and face the day with optimism and faith. God bless us all.

one month ago.....

2007-10-20T14:20:00.000-05:00

today is the first month anniversary since russ died. even though i still have my days where i feel numb and have no energy (like i'm in a fog myself) i do think i've made great strides. this past week i have done more than i think the other 3 weeks combined. i took to heart lori's posting about feeling sorry for myself and time to get off the pity potty. as difficult as it is some days, i think it helped, so thank you lori!

i had two insightful conversations as well this past week. i know it was something i already knew but needed to hear it from someone else. for so long my life had been centered around helping others and caring. with my nursing background i think that came natural for me but more so it was the role model my mother showed me. she was not a nurse yet she cared for many over the course of her life. first her grandfather (my great grandfather) lived with us when i was in junior high school. next her mother (my nana) lived with us as she battled breast cancer. she even went out to california before my wedding to take care of unk after he had open heart surgery as he was between wives and had no health insurance. she was always there to lend a helping hand if new babies were born or people were sick. and of course, the last but certainly not least was the example of her caring for russ.

i have always admired and looked up to my mother and wanted to be just like her. as a really young girl people would ask me what i wanted to be when i grew up and i would look at her and say, "a mommy, just like mine." it seemed the natural thing to do and what i wanted to do for russ, maybe to pay back my mom for what she did her whole life and to make her proud. i am so glad i did, i have no regrets. it wasn't easy as we AD caregivers know but... now though my life feels empty, the boys are off at school and russ is no longer here. what is the purpose of my life? yes i can pretend to take care of bob but he has always been my rock, my strength. as russ deteriorated, i worked less and less outside the home.

bob's and my business is in the process of closing down. with all the changes in medicare reimbursement and medicare D, it is no longer profitable. this is another chapter in our lives that is changing. so until that is final, there is enough to do before i can look for a new path and dream to follow.

i have spoken with a friend from my support group that has no family in town and have offered my assistance to her when she feels at wits end. i say that as i know she will not take me up on my offer just as an excuse to get out. i know that as i've been there myself.

so for now i will concentrate on getting back to a productive life. i say that vs. normal because i will have to begin over the next few months to define what normal is for me. in the meantime, i will still have to deal with all the paper work yet to be resolved with russ' death. in time, in time........

happy birthday mark!

2007-10-17T14:30:00.000-05:00

today is mark's (my youngest son's) birthday. he is 20. where has the time gone? i can't believe how fast they grow up. i still remember all too well how he used to run outside in his diaper to pick raspberries off the bushes in our backyard. or how he never liked to go to bed; he was always afraid he would miss something. most nights when bob and i got ready to go to bed we would find mark sound asleep on the upstairs landing. mark would climb out of his bed, but he didn't want us to know he had gotten out, so he wouldn't venture any further than the landing. most nights we heard him as it got to be a nightly ritual. or even from the age of about 3 he would get up and turn on sports center. he would later turn on sesame street but only after he had caught up on all the previous days activities.

mark has a pretty hectic class schedule on wednesdays so bob and i got up early and drove to madison to take him out for breakfast. even though it was short it was good to see him. i worry about him as i'm sure all moms do. he was close to russ and i wonder how much russ' death is affecting him. i know he has been struggling with some classes and they only advice i could give him is what others have told me. "give yourself time and take it one day at a time." hopefully he knows we are here for him.

i love you little buddy and hope you have a wonderful day. you're the best and i'm very proud of you!

for chris

2007-10-16T08:44:00.001-05:00

i learned last night that a blogging friend lost her dad yesterday after about a 2 week struggle from a fall resulting in a subdural hematoma. that would be hard enough but about 2 months ago chris lost her mom to AD. what a terrible thing for anyone to have to experience. i know the loss i feel in losing both gene & russ in a little over a year and a half but 2 months time, that is unimaginable.

please say a prayer for chris and keep her and her family in your thoughts and prayers. she always felt whenever she saw butterflies it was her mom surrounding her with her love. as hard as it is to accept, she now has 2 butterflies to remind her of their love for her. they are together again, where they belong.

God bless you chris and hold you close during this very difficult time.

relaxing weekend

2007-10-15T18:33:00.000-05:00

bob and i had a wonderful relaxing weekend, just way too short. we had hoped to leave early friday afternoon to go up north but did not get away until 6pm. upon arriving at 10:30pm, i quickly made a pan of gooey brownies for our birthday treat. nothing tastes better than warm brownies ala mode! we did sing our "happy birthday to us" song before inhaling the warm delicacy.

saturday morning we woke up to a beautiful sunrise over lake michigan. after breakfast we took in recyclables as it was "recyclable saturday", the second and fourth saturday of every month. that was a ritual russ used to enjoy when he was still able to drive. on our way home we stopped at the cemetery. i removed the summer flowers and planted another mum plant next to russ' grave. friends had planted one for gene in august and it survived the drought and is quite large and beautiful now. bob and i even laughed about his adventure before the burial and hoped that gene and russ were still giggling about it as well.

we then took a long beach walk. for october, lake michigan was surprisingly warm. i had no desire to take a dip but my toes didn't freeze when i put them in. the lake itself was as clear and clean as i can ever remember it. with the drought this summer, the beach was as big as i can recall and large pieces of limestone were exposed beneath the water that are usually covered with sand.

after our walk, i packed a picnic lunch and off we went to go enjoy the fall color. this is something both my parents loved to do and something i guess i inherited. we were pleasantly surprised that even with no rain this summer the leaves were beautiful. the pictures above were taken this past weekend. we found a quiet area to enjoy our lunch and admire the peaceful beauty of the area.

saturday evening we enjoyed dinner with some friends of ours who were up for the weekend as well.

sunday we did things around the house in the morning. cut the grass one last time, raked and blew leaves, set up mouse traps, took down the flag. i wanted to make sure everything was done before the packers played at noon. after the game we finished tiding up and then left. we stopped at the cemetery one last time.

i really hated to leave but work again called us back sooner than we had hoped. i just love it up there. we both do. bob grew up about 45 minutes from there and i really feel our mutual love for that area is what initially attracted us to each other. we hope when we retire one day to be able to call door county home. i have to admit that as hard as it was to leave it was a little easier knowing that both of my parents are now there together. i am no longer leaving my mom by herself. russ is by her side where he belongs.

death certificate

2007-10-12T14:56:00.000-05:00

russ' death certificate arrived in the mail today from the funeral home. it took over 3 weeks to receive it. i think part of the reason was that he died at my home and the funeral director handling his burial was 3+ hours away. a different funeral home is listed on the death certificate, it was the one that picked up his body until the other one could drive down to get it. the process at the time went very smoothly actually but i think it may have been what caused the delay, having to pass through many hands.

it seems very strange to me to actually read the piece of paper that states russ is gone. it somehow makes it more permanent. the only thing i feel good about is the reason that was listed on the certificate. it states "end stage dementia" (interval between onset and death - "years"). it is the truth. there were no secondary causes or contributing factors listed, just end stage dementia. that is what happened, plain and simple. AD robbed russ of his precious life, end of story.

weekend getaway

2007-10-12T10:48:00.000-05:00

today bob and i will be leaving for the weekend to go up to door county, to my parents home. last weekend we did not go up to honor of all our birthdays as it was the alzheimer's walk. bob, my sister and i walked in russ' memory. it was 88 degrees with about 90% humidity, extremely atypical for a october day in wisconsin but we did it. i was a little worried as i was walking on a sprained ankle but managed the 4 miles just fine. we had looked and hoped to walk with the hospice group but never did find them. sue had heard there were to be between 5-6 thousand participating in the walk.

this weekend the temperature will be much different. the highs should only be in the 50's but it will seem more like a typical autumn day. we don't have any plans at this point, will just take it as it comes. i'm sure we will drive around looking at the color, take a beach walk and visit the cemetery. i'm also planning on having a small cake to light with candles so we can sing "happy belated birthday to us." i think they would both like that.

3 weeks

2007-10-11T08:25:00.001-05:00

it has been 3 weeks since russ died. it sure doesn't seem that long. many of my days have been spent doing what needs to be done and not much more. hopefully i will soon feel more energized to get out more and just be motivated to do things.

lynne, a hospice nurse called last night to check in on me and see how i was doing. it was so sweet of her to call and we had a really nice talk. i was explaining how the house seemed so empty. not only was russ not here but both boys are off at school. in such a short time my home went from 5 down to 2.

she pointed out to me that janine no longer makes her routine visits nor does victoria, the hospice aid or joann, the home health aid i had coming in some evenings. i am not seeing the drivers who use to pick russ up for day care or talking with the staff at daycare either. with russ' death, all those people i had come to know and rely on and communicated with on a regular basis are now gone as well. i'm sure they still think about russ and me, as i think about them, but we have lost that need for personal contact.

the one thing i know is there are still my blogging friends. even though i may not be posting daily like i use to, i still read all of your blogs daily. i continue to take comfort in knowing you are all there and you still check in with me as well.

this is an unique journey we AD caregivers travel. i truly believe it binds us forever and unless one has experienced it or walked the same journey people just can't understand. so i thank all of you for being my friend and i look forward to keeping up with you as we continue to walk this AD journey, whether it be still in the present or after our LO's have ended their journey. ours lives will continue and i hope we will continue to share them with one another for a long, long time.

waiting

2007-10-08T17:55:00.000-05:00

i havn't posted in a few days because as lori said in her post today, i don't know what to say. i feel like my life is in a holding pattern, waiting for the light to change. when it is green, i feel like i am going through the motions yet feeling numb, and still on autopilot, doing what seems natural and comfortable to me. yet at the end of the day, you ask me what i did or what conversations i may have had, and i couldn't really tell you. most of the time i feel like i'm in between the yellow and red light. my life is moving cautiously or at a standstill. i have no motivation or energy. i still feel so tired and exhausted all the time.

then i feel somewhat guilty. i know in the whole scheme of things the time since my mom died (19 months ago) and russ was moved down here is small. i think of how much longer friends like lori or flinty had to live life experiencing AD on a day to day basis compared to me. then i wonder if i should be getting on with things like they seem to be, yet i'm not.

i know everyone is different and adjusts to life and situations differently, but i wish someone could tell me when will i snap out of my own fog? when will my life return to what i once knew it to be? or will it ever? i'm not looking for sympathy, just thinking out loud....

happy birthday russ!

2007-10-05T07:01:00.001-05:00

as i said 2 days ago, this is a really tough time for me. and today is really difficult. i have so many mixed emotions right now. i wish russ were here to celebrate his birthday with me yet i know he is in a better place, and actually able to realize it is his birthday. and he is with my mom.

october birthdays have always been special in my family. besides my mom and dad's, mine is also in october. when i was growing up and my sister used to get mad at me she would tell me that i wasn't part of the family since i had blond hair and the others had dark hair. i used to then tell her that she wasn't special because her birthday wasn't in october like the rest of our family. but i still have 3 october birthdays to celebrate, mark's is the 17th and bob's is the 24th.

i have SO many fond memories of the 6 of us celebrating our birthdays together. russ and i would always try to see who could be the first one to call each other on our birthdays. for a while it got a little ridiculous as to the hour we were getting up just to outdo the other. yet it was something we always looked forward to.

i got through my mom's birthday just as i'm sure i will get through russ' today. oh, did i mention it's also my birthday today? i was blessed to have been born on his birthday. it will be something i will cherish forever. happy birthday russ. i love you!

2 weeks ago

2007-10-04T10:48:00.000-05:00

(taken last fall on one of russ' and mine many drives to enjoy the fall color)

it has only been 2 weeks since russ died. a part of me seems like it was yesterday yet another feels like it was much longer. i am doing ok. this is a hard time for me, not just with remembering everything but because there are many october birthdays in my family that bring back a flood of memories. i hope in time they will only bring smiles.

as i reflect on 2 weeks ago i am still so thankful that janine took control and offered to send in the continuous care nurses. russ' last 23 hours were difficult to watch. with his increase in pulse and respirations i am not sure how long i could have held it together by myself for russ, my sister, and myself and constantly watch the clock to record times to give the meds, how russ was responding and still be there comforting russ.

by having janine, lynne, rita, lois and pat there i was able to be a daughter as i wanted to be. they were behind the scenes, doing the nursing part and i was able to just sit there and hold russ' hand and do the daughter part.

janine and lynne (from the inpatient unit and only lives 10 minutes from me) both helped to cover until the first "official" nurse arrived at midnight. i had met rita at the in-patient unit where she usually works nights if there is not a need for continuous care. she has been doing this about 8 years i think. it was a comfort to see a familiar face. she would talk with me if i felt like talking or otherwise she just sat there and monitored and handled the situation. she said she never had seen someone who didn't respond to all the meds russ had been given throughout the night. she called him an anomaly. i always knew russ was one of a kind.

the next nurse to come was lois. i had heard glowing reports from janine, rita and especially lynne. lynne said lois trained her for continuous care and was the best. she didn't disappoint me. she has been with vitas continuous care about 4 years i think. she was so calming and quiet in doing what needed to be done. during the time she was there (8am-4pm) she bathed russ twice (he had a temp of 104), changed his bed and was just so tender with him, that's how i would best describe it. she encouraged sue and i to go upstairs to the kitchen for awhile to eat. i know it was her way of seeing if russ wanted to die without us present but i thank her for her kindness in the way she handled it. the thing that impressed me most about lois was how she was able to single-handedly turn and reposition russ by herself. remember that russ was not a small man and lois is not a large woman, yet she was able to scoop him up gingerly and turn him. she looked like she was gently picking up and turning a sleeping infant, being oh so careful not to wake him. lois made sure russ was positioned just right, that he was as comfortable as was humanly possible. i was sad to see lois go. i think russ was too.

pat arrived next and within the hour of lois leaving, russ was gone. pat pronounced him dead, made the necessary phone calls and the funeral home came and left within about 90 minutes of that time.

hospice was truly a wonderful experience and support system for russ and especially me. i will forever be indebted to all of them for all their loving care that they gave to us both. as it has been said before, they are truly God's angels. thank you all.

happy birthday gene!

2007-10-03T09:51:00.001-05:00

today is a bittersweet day. my mom would have been 81, she died 19 months ago at 79. i miss her terribly and wonder if the grieving process will be worse now that russ is gone, because i have more time to dwell on it and think about it.

yet i know she lived a wonderful and full life. she was the best mom. always giving of herself, always smiling. i hardly ever heard her speak an ill word about others. but most of all, she did not have to experience the downward spiral that russ took. she would have wanted to care for him at home til the end yet i'm not sure she could have physically done it. she was only 5'2" and russ was 5'11". when she passed russ was maybe only early stage 5 and it was tearing her up to see him that way. she was spared of not having to witness the love of her life not remembering her. i believe as betsy does that it was the 24/7 caregiving that really took her life yet i also thank God that He did.

last year was hard for me on her birthday, it was the first without her, and russ no longer remembered who she was so i did not speak to him of her on her birthday. that was really hard for me. it almost felt like i was ignoring her or denying her existence. this year i have mixed feelings. i still miss her very much but am picturing that she and russ have much to celebrate together this year. they loved to go out to eat, so i imagine they have already gone out for breakfast and are deciding what they will do for dinner. today i will be able to and plan to celebrate your life.

happy birthday gene. i love you!

You Done Good !"

2007-10-02T08:44:00.000-05:00

it seems hard to believe the visitations and services were less than 1 week ago. a part of me feels like it all happened so long ago. last thursday the church where bob and i belong served as a wonderful backdrop for friends and family to come and pay their respects. many came; russ' family from galesburg, il., cousins of my mom's from pittsburgh, pa., friends of my sister's and mine, hospice staff, (3 inpatient nurses maggie,lynne and marlene, as well as janine), as well as friends of russ' from the chicago area. pastor dave did a wonderful job with the service, especially the homily. many commented later that they had never heard a pastor make the homily so personal for the family. somehow i am not surprised by this, he is that kind of man. he is the man that spent 9+ hours at russ' bedside his last 24 hours. i will be forever grateful to pastor dave.

there was a part for remembrances. 2 of my dad's friends that had carpooled with him during his tenure at sears got up and spoke. they had wonderful stories that showed the funny and lighthearted side of my dad. i remember them well as they were the 2 friends that sat with my mom and i over 20 years ago when russ had his bladder cancer surgery. they were a comfort to me then as they were at his visitation.

my niece kimi did a tremendous job in reading a poem she had written as well as reading the memories from the family. she showed such strength in being able to get through it without breaking down. russ would have been proud of her.

saturday in door county we had another visitation for all the friends that my mom and dad had over the past 30 years of living up there. prior to going to the visitation bob, the grandkids and myself stopped at the cemetery to see the site and talk to my mom. bob had just finished telling the kids not to stand too close as the ground was mostly sand when it gave way and down bob went into the 6' hole. we initially didn't know whether to laugh or cry but bob was ok, although no one offered to help him out for fear of falling in as well. i was thankful for all his years as a rodeo rider (he rode the bulls) so that he knew how to fall without hurting himself too seriously. we will have many years of good laughs from that. i'm sure my mom was giggling to herself on that one!

the same minister that did the service for my mom did the graveside committal service for russ. it was somehow fitting that pastor ken do both committal services for my parents. taps was played at the cemetery and russ was sent off with full military honors. it was beautiful. afterwards everyone came back to my parents home for some food, drink and remembrances.

for as long as i can remember russ had a trademark. jim woulf, a long time friend through work had given him a "you done good" sticker and russ adopted it and it then became russ' trademark. he would hand these out whenever someone did something worth remembering. it could have been as simple as being a good waitress, or to his grandkids when they were in a concert, won a sporting event, or did well in school. it was amazing to see how many hands were raised when kimi asked how many people russ had given you done good stickers to. many people across the world have received you done good stickers.

well russ, you made such a positive and loving impact on so many lives while you were on earth. i know in my heart that you deserve the biggest "you done good" sticker yourself!

back home

2007-09-30T17:38:00.000-05:00

i just wanted to let everyone know that i am now home again. both visitations went well, so many kind people with nice things to say. the memorial service was so special, pastor dave did a great job. i am (not surprisingly) exhausted, both physically and mentally so i am just going to veg out tonight. i will try to post tomorrow after i get unk & dunk off to the airport. i'm doing ok though.

we're ready

2007-09-27T12:46:00.000-05:00

i think we're ready for the visitation and memorial service later today. my nieces completed the dvd picture slide show which i will be anxious to see. we selected things to put out of special significance and all wrote of few lines remembering russ which my niece kimi will read. i made of board showing all the wonderful GLO cards russ received with a picture of his quilt square that i made.

unk & dunk (my aunt & uncle) arrived safely and are currently on their way to pick mark up from school. matt should be arriving home in about an hour or so, bob is out running errands. this quiet time allows me time to blog!

a very special surprise was seeing my 2 best friends from college last night. linda (mez) is a methodist minister and has to do a funeral tonight in her church so she and ann (from dallas) drove up to see me last evening. ann flew into chicago and mez picked her up. mez will drop ann off in an hour or so and drive back. ann will stay for the visitation and get a ride back to mez's from my best friend from high school.

i feel so blessed to had made such wonderful friends over the years. 30+ years of friendships. wow.

prepartaions

2007-09-25T08:17:00.000-05:00

the last day or 2 have been busy with preparations for the funeral. i know this is something that needs to be done and i do want it nice yet a part of me just wants it all over.

i am thankful my sister is helping with all of this, or maybe i should say that i am helping her with all the preparations. so many phone calls needs to be made; family, friends (of both my dad's and mine), former co-workers of my dad. then there are all the calls to the funeral home, doctor's offices, VA office, daycare, etc. everyone wants to send their condolences and hear about how it was, especially at the end. a part of me is now feeling that i can just about push the play button and just let the canned recording play. that may sound cold but i feel at times like i'm on autopilot.

yesterday sue and i also met with my pastor to plan the memorial service. it will be similar to the one for my mom. i have a few ideas but again i am deferring a lot to sue. i guess a part of me feels i did what i really wanted to do in terms of keeping russ at home for the majority of this illness, and getting russ home at the end so he could die at home, that now there is a letdown and it doesn't matter as much. i am more than happy for sue to step in.

because of how we are handling it, having 2 visitations in 2 different towns, it will be longer than my mom's or most traditional visitations/funerals. yet i think we made the right choice to do it this way. russ' family and old co-workers/friends live closer to me and will not have to drive as far with the first visitation. but they had vacationed up in door county for over 40 years and lived there for over 20 so we need to have one up there as well, where he will be buried.

my nieces are compiling photos to display on boards as well as have a dvd slide show playing. they did a wonderful job on this for my mom so i will spend some time today looking for old photos to include. whatever i come up with fine, i'm not worried as i don't think i had time with my mom's to look for any at all and it was a wonderful tribute to her. we all do our parts.

unk and dunk arrive tomorrow and then the boys come home thursday in time for the visitation. the fall colors are starting to turn. i think it should make for a very beautiful setting up north. fall is my favorite time of the year and i know russ loved to watch all the leaves turn colors as well.

happy times

2007-09-23T19:29:00.000-05:00

yesterday russ' great niece was married. originally i was to go with my boys and bob would stay home with russ. as russ was declining bob was going to go with the boys and i would stay home with russ. as it turned out we were all able to see the wedding. me with bob and the boys and russ with my mom in heaven. lindsey and russ always had a kidding relationship. when lindsey was really young, russ used to tell her that he could fly. she bought it hook, line and sinker. when she asked him to fly, he would always tell her that his wing was hurt or broken, and maybe he would show her later.

yesterday i told lindsey that not only did uncle russ see her get married but he was able to fly around, that both his mind and wings were healed. we both smiled and hugged.

it was good to see russ' family yesterday. as flinty has posted, most were worried about me and how i was doing. i was and am doing fine. probably the biggest thing was i kept looking at my watch, as if it was time to go home, as if joann would be off duty soon and i needed to get back. i think that will continue to be the biggest adjustment, learning that i don't have to rush home, that i can again have a life of my own, whatever that may be.

for those of you interested here is the site for russ' obituary online.
http://www.huehnsfuneralhome.com/index.cfm

surreal week

2007-09-21T23:26:00.000-05:00

i just now learned that a friend of mine just lost his father a few hours ago from alzheimer's. it almost doesn't seem possible. within a 5 day period 3 of our LO's are gone; helen, russ and now flinty's dad. they had all traveled a tough road, yet fought hard til the end. fortunately for all three it was a peaceful ending to a wonderful new beginning in Heaven. they are all now free of the disease that robbed them of their memories. we will continue to keep them in our hearts as we learn to start a new life, without them. i think i can speak for lori and flinty that our lives have forever been changed by this journey we traveled with our loved ones. but through it all we have become stronger, and more faithful.

my heart goes out tonight to both lori and especially flinty. i know i will forever feel connected to you both as i know this week will be forever etched in my mind. may God give us each the strength we need to adjust to life without helen, russ and flinty's dad. i hope they are together looking down on us praying for the same.

russ is at peace and with God

2007-09-20T20:32:00.000-05:00

at about 5pm today russ left all his pain and suffering behind and was healed. he joined my mom in heaven. what a joyous occasion that must have been.

russ continued to struggle for almost 24 hours with his breathing and very rapid heart rate. it wasn't until 4pm that his respirations were below 40. then they began to drop slowly but steadily. as it was approaching 5pm, his face became very blue, not just his lips. his breathing was peaceful and non-labored. my sister, brother-in-law, niece, bob and i were sitting around russ. sue and i each held one of russ' hands. we witnessed as he took his last few breaths, each slower than the previous. then he stopped.

it was a peaceful death, a painless death. he was able to die at home with family present. and now he is free of this dreaded disease we call alzheimer's. i am at peace with this. sure i cried and will shed more tears, but shortly afterwards i looked towards heaven and said, "thank you God".

i will miss russ terribly but i have been missing the russ i knew for quite a while. i am thankful he is at peace now and rejoined with my mom. i am also glad he has met lori's helen.

the end is near

2007-09-20T04:55:00.001-05:00

how a day can change in a course of a minute. russ slept on and off most of the afternoon. i sat by him and i talked lots to him, reminiscing, and thanking him for such great memories.

at 5:30pm joann arrived and we went to reposition him. immediately he turned dusky blue and his respirations went up to 60/min. i immediately called janine and she had me give him some ativan until she could order and have some morphine delivered. she had ordered all that in the morning but it will not be here until around noon on thursday.

to make a long story short, russ is now on continuous care and has been getting either the ativan and or morphine as often as ordered. this means he is getting something at least once every hour to try to relieve this. it is unclear what is going on but janine and i suspect something went wrong with his circulatory system. his extremities are cold and blue and his legs are mottled.

his respirations have been between 48-60, temp over 104, pulse between 108-160 and has no blood pressure for 11 hours. in 1/2 hour this will have gone on for 12 hours! i don't know how much more his body can take.

janine came over after our phone call and stayed until lynne arrived from the in patient unit to bridge the gap until the continuous care nurse arrived. our pastor was here from 10-2 and decided to go get some rest. he will return in the am. what a blessing it was to have him here. i pray for this to end soon. please God, end this for russ' sake, he has suffered enough.

welcome back janine!

2007-09-19T13:43:00.000-05:00

i am feeling much better about things. janine was here almost 2 hours this morning and i think we're at least on the right track.

russ slept soundly until about 5:30am when he started sounding very congested again. by the time janine arrived he had not been able to cough at all to clear it. she applied a third scopolomine patch to help decrease the secretions. it will take about 8 hours to kick in so in the mean time we will give russ atropine 2 drops every 2 hours to also help decrease the secretions causing the throat and pulmonary congestion. what is already there he will have to cough up or evaporate.

we also talked about what i may or may not see and what possibly to expect. even though she is very honest about it she explains things in such a soft and caring way that makes it easier to hear. i had been telling bob i wanted him present because lately even though i'm a RN, when it hits so personally, 2 sets of ears are better than one. bob continues to be my rock and sounding board.

janine then had suggestions about positioning him and putting pillows under the mattress at the foot of the bed to elevate it and take pressure off the knees and feet. it made sense yet i'm not sure i would have thought of it.

victoria, russ' aide arrived before lunch and stated she already had russ on for the 5days/week now. amazing how a simple phone call can help. i helped her bathe and shampoo and shave russ. he really looks and smells good now. he was able to cough hard a few times so i think he cleared some of the congestion out. he has been dozing all morning but looks very comfortable. now that he is all cleaned up, he looks as if nothing is wrong with him, so peaceful. i pray that as his final journey comes to an end we can keep him that way. with janine, victoria, joann (his home health aide that helps me late afternoons or evenings) and most of all God, i'm beginning to have a good feeling that we can.

adjusting to home.

2007-09-18T15:39:00.000-05:00

this morning i noticed that russ seemed much more congested. he attempted to cough and clear his throat but just had such a difficult time doing that. after about 3 hours he finally succeeded. boy does one feel helpless at that point. i wanted to cough it up for him.

after that he was pretty alert, at least compared to yesterday. the ambulance ride was really hard on him but fortunately with short term memory loss i don't think he has any further recollection of it today. around 11:30 he started licking his lips. i asked he he was thirsty, no response. i asked if he was hungry for dessert (he has always had a sweet tooth) and his eyes grew wide and his mouth opened up. he ate about 3 spoonfuls of peach cobbler, plums with apples (all baby food) and about 5 spoonfuls of thick-it water. i think he enjoyed it but afterwards he slept for about 3 hours. how sad is that to realize that he used up that much energy and strength to eat so little?

lynne, a nurse from the hospice in-patient unit stopped by to see him and help me reposition him. i tell you those nurses are so thoughtful and wonderful. i sure hope they realize that, and what wonderful gifts they give to their patients and their families.

unfortunately janine will not be back until tomorrow. the aide also didn't show, not because she didn't want to but because someone didn't enter the request for 5 days in the computer. i was just told that "janine can do that when she gets back".... oh well, thank goodness she WILL be back tomorrow! a nurse came by late afternoon to check on russ. she suggested that i put a second scope patch on to try to decrease the secretions in russ' throat. she also suggested i use a tylenol suppository before bedtime as he felt warm even though he did not have a fever. i did both. i will try whatever to keep him comfortable. what i really wanted and needed from her was to make sure russ has enough pain patches on hand. i only have 1 left that will go on tomorrow. she will order more.

janine called when she got home. she had heard about the no tuck-in visit. she felt bad but it's not her fault. someone else should have followed-up on that. she was also going to leave a voice message for the office scheduler for victoria to come 5 days. seems like that could have been put in place today if janine could do it from home when she technically wasn't working yet. oh well, don't sweat the small things i guess. like i said as long as russ is comfortable and safe, that's my main concern.

i have thought about lori a lot today. i pray she is doing ok.

home sweet home

2007-09-17T19:45:00.000-05:00

the ambulance arrived at the hospice unit promptly at 10am. for whatever reason they were in a big hurry to get out of there as i could tell they were getting impatient with me as i was saying goodbye to the staff. it was an emotional time for me. as much as i wanted russ to come home they have been so wonderful not only to russ but to me and my family as well. they are truly God's angels on earth. thank you all!!

the ride home went ok but i could tell russ was somewhat stressed out. he kinda had that panicked look during parts of the ride. it was of course bumpy but it didn't matter. i swear the ambulance driver was going over 80mph part of the time. i thought to myself, what's the rush, russ is going home to die, this isn't a life and death situation, at least not yet! i was so glad to be there with him. we squeezed each others hands the whole way home.

russ has slept basically the whole time since he's been home. i even fell asleep for about 20 minutes in the recliner next to him earlier. once again though he seems comfortable and peaceful. i feel so blessed for that and pray it continues for him. he is now wearing a fentanyl pain patch to hopefully keep any pain he might experience in check.

my sister and brother-in-law came over for dinner. my good high school friend had dinner delivered tonight - it was a real treat and so thoughtful. it's amazing what you can order from out of state. thanks again mooch!

as much as i miss the staff i am SO happy and relieved to have russ at home. i feel at peace, this is where he belongs. i didn't get my tuck-in visit or call from vitas but that's just as well. i can always call them if something comes up. janine should be back in town tomorrow so i anticipate she will call.

on a sad note, my dear friend lori, lost her friend helen today from alzheimer's. my heart is very heavy tonight for lori, yet glad to know helen is out of pain. she died a few hours after russ came home. my prayers are for lori tonight.

i agree lori, this isn't life

2007-09-16T00:30:00.000-05:00

lori, a very good friend of mine from the board titled her blog today, "this isn't life." i could so identify with her post. today russ actually had a very good morning, relatively speaking. he was able to track people and i actually think he recognized my face and voice unlike the last few days. i told him i loved him and he attempted to move his lips to reply what he used to say, "i love you too." but was unfortunately unable. i told him that he was going to get to come home with me in 2 days and he smiled. he slept all afternoon, but peacefully.

russ had 3 BM's yesterday and 1 this morning. i have been talking to the nurses trying to decide what is the best course of action for medication once he comes home. i don't want him constipated yet i don't think he needs to be having that many stools when his intake is next to nothing.

my 2 nieces arrived this afternoon but he slept through most of their visit. i tried to wash his face to arouse him but no luck. in the evening he seemed to awaken and the nurses tried to get some medicine down him but he gaged, coughed and possibly aspirated some of it. they said he looked panicked. the nurses decided then that enough is enough. it is time to stop all oral intake. he can virtually not swallow anymore. tomorrow hopefully the doctor will order a pain patch for any discomfort. once again, all my questions and concerns about how to handle the bowel meds at home have all now been answered.

russ be will coming home with me monday morning. i will do everything possible to keep him comfortable and pain free. nothing else will be attempted. as lori said this isn't life and i know russ would agree. maybe helen and russ can cross the gates into heaven together, free of this disease. if not and helen goes first i hope she will be calling hello, hello, to welcome russ Home.

getting ready to come home

2007-09-14T22:53:00.000-05:00

today russ slept most of the day. he seemed uncomfortable as well. he did have 2 BM's, rather loose but seemed like he was having a lot of gas. his stomach is still distended and we know the ileus is still present. one of the nurses said it seems to be filled with a lot of air. not sure what is causing this or what to do, maybe nothing. he hardly ate or drank today. the catheter was put in and he didn't seem to mind at all. i'm glad as hopefully it will help prevent skin breakdown from the concentrated urine as well as be easier for me.

i spent a lot of the day calling russ' relatives to give them updates. i also started making phone calls for a little additional help when he comes home on monday am. i found out that russ' hospice home aide will be able to come 5days/week vs. 1. - yeah!!! i'm not sure how aften his nurse janine will come. she is on vacation so i will have to wait until she gets back in town to ask her. the aide who was coming a few evenings a week is really flexible. she really loves helping with russ and i like her as well. i think we agreed that we will hire her more independently. that way i can be more creative and flexible when she is here. with russ sleeping so much, the main thing i need is help with repositioning if i am alone. she lives relatively close by and i will have to pay less this way (not going through the agency) and she will make more. i know it's not the way i'm suppose to go about it, but let's face it, it's a win win for us both.

a decision was made

2007-09-13T12:17:00.000-05:00

earlier this week as well as yesterday, hospice gave me the impression that russ would be staying here until the end. they questioned the transfer to go back home, how difficult it might be on him, would he know he was home, etc. i really struggled with that. i have always thought and wanted russ to die in my home with me by his side. i kept thinking, was i being selfish wanting to take him home?

this morning the staff had their weekly conferences and felt that russ is now stable from the ileus, what he was admitted for, and it would be difficult to justify to medicare his continued stay. the scopolomine patch seems to be working well as he is not near as congested this am and has no fever. i was then told they needed to discuss discharge plans with me.

how relieved i was! i would no longer have to make that decision, it was being made for me and one i feel very comfortable with.

i know it will be difficult yet i feel comfortable with it. hospice is helping me to look into additional help as russ is about 200# dead weight. (pardon the expression). he will come home with oxygen and a foley. hopefully the foley will help prevent skin breakdown.

resources are not plentiful for russ but he should have more than enough for the time he has left.

he is sleeping at least 20/24, hardly eating at all and his color and circulation does not appear to be good.

i thank God for answering my prayers on this.

hard decisions

2007-09-12T09:25:00.000-05:00

i came in this morning to learn that russ had a temp of 100.6 axillary. (really 101.6). when the MD made rounds he said he can hear congestion in his left upper lobe. he wanted to get a chest x-ray and start antibiotics. i again struggled with this. to make a long story short, he will not get the x-ray or the antibiotics. he will instead start a scopolamine patch to try to decrease the secretions.

russ seems comfortable and not in pain. i had a long talk with one of the nurses. she said last evening he had a tough time. when they got him back in bed after being up for a couple of hours, his mouth and lips were dusky in color, his breathing has become what they call "purse like", very rapid and shallow, and his lower extremities were mottled.

i really feel things are starting to shut down. he is usually arousable but will sleep if not up.

this is so hard. i want him to be comfortable yet i am choosing no aggresive treatments for him. i do think this is what he would want. he has deteriorated so much since he has been here.

on a positive note, his bowels seemed to be working yesterday.

please say a prayer that russ remains comfortable. thank you.

september 11th

2007-09-11T16:47:00.000-05:00

so many people will always remember what they were doing exactly 6 years ago today. to me it's kinda like when JFK was assassinated. when something so horrific happens in your life, you tend to freeze that moment and those feeling in your mind forever.

so many others, flinty, stef and bigsky girl have already posted on this topic and have done a great job. i think the other thing that i will always remember about 9/11 is that a few weeks later i was up visiting my parents for the weekend. my aunt and uncle were there. my uncle had served in the navy during WWII like my dad did. i remember asking the 4 of them how 9/11 compared to the bombing at pearl harbor.

my uncle immediately spoke up and described his feelings as did my mom and dad's sister. i was surprised that my dad just sat there and said nothing. i found that really odd. i wondered at the time if it was because he was reminiscing and remembering events from WWII.

in january of 2002 russ was officially diagnosed with AD. i have often wondered now if at the dinner table that night he just couldn't remember what the other 3 were talking about, that he had no recollection of 9/11. i think that may be the case because he has never really talked much about the event as others do. maybe it's just as well. living through one event like that was more than enough for most.

my heart goes out today to all those victims of 9/11, their families and the heroes that stepped up that day to save lives.

as an update on russ, today is not a good day. the doctor made rounds this morning and said the bowel sounds were not good. he felt the ileus was rearing up and his stomach was very distended again. he did however have some stool, but liquidy. and this morning russ sounded somewhat rattly, especially when he coughed.

AND to add one more thing to my quiet, calm life, bob's mom fell last pm and spent the night in the ER. she has a silver dollar sized egg on her head. fortunately the CT scan was negative. bob and i may drive up to see her tomorrow around lunch time after i check in on russ. i wish she lived closer. it is about a 2hr 45min drive. at least bob's brother and family are only about 3 minutes away.

a year ago

2007-09-10T23:02:00.000-05:00

it has been a little over a year since russ came to live permanently with me. it has been over 18 months since my mom died. as i stated in an earlier post russ initially lived with my sister. last summer my sister needed a break so we tried splitting the time up so that we could share the responsibilities more. it was clear that that was not a wise option for russ so right after labor day russ moved in with me.

there have been SO many changes in that year. a year ago russ was able to take daily walks of at least a mile, still feed himself, still dress himself, still toilet himself with NO incidences of incontinence, still shower himself. he was able to help contribute with minimal household chores; setting the table, loading the dishwasher, vacuuming. we were able to have some decent and productive conversations, some days pretty coherent as well. during this time i would talk to him a lot about his past and youth trying to learn as much about that part of his life as i could and as he could remember.

when i think back to a year ago i still can't believe all the changes. if anyone would have told me that he would have declined this fast in 1 year i would not have believed it. he is now someone who cannot feed, dress, toilet, or bathe himself. he also can speak very few words and take very few steps on good days.

although there are many negatives i have to look at the positives that have come from from this downward spiral as well. russ now sleeps through the night. he used to be up a minimum of 3-4x/night wandering the hallway so at least my sleep is a little better most nights. the repetitive questioning has stopped. i am no longer asked at least 10x/day where his car is, even though he hasn't driven in well over 3 years. and i no longer have a shadow. i am able to walk across the room, into another without feeling russ' breath on my face. and probably best of all, i can go to the bathroom without having someone join me.

would i trade today for a year ago? that is a tough one to answer. if i could keep him where he was with no decline i probably would. but i know too well what happens next, and that is not a good thing.

taking a personal day

2007-09-09T20:49:00.000-05:00

(matt 21, mark 19)

throughtout the 17 years that bob and i ran our business we afforded our employees a personal day to use at their discretion every calendar quarter. after 1 full year of caring for russ full time, i decided to use a personal day.

the boys left for college about 10 days ago in the midst of russ developing his ileus. mark actually left the day russ started showing symptoms but i was able to take him to madison and help him settle in before realizing what was going on. i was to drive down with matt the following day to help him clean and move a car full of things in. that never happened. bob and matt managed to drive down for a brief time with a car load but came right back. matt then delayed going for good for 1 day until he saw what was happening with russ. i felt matt was short changed in this process.

since russ had a stable day yesterday, bob and i got up early and went to church. afterwards we drove to madison (1hour) to see mark for a couple hours and take him out for lunch.

we then left and drove 50 minutes to whitewater to see matt in his apartment. his bathroom needed some major cleaning so bob tackled the shower and i worked on the bathroom sink and tile counter. i also cleaned and oiled all his cabinets. major improvement if i do say so myself. we took matt out to dinner and then drove the 50 minute drive home.

it was such a nice relaxing day and i feel much better for having done it. i needed to know that they were both doing ok and that i tried to help to get their apartments in shape for them, especially matt. it is amazing the appearance of some apartments in college towns and what some landlords can get away with knowing they are renting to students.

both my boys are such good neat guys and i hope that their year in school is a good and fun one. they were such a great help to me with russ over the summer and matt all last school year. but now is time for them to fully experience college and all it has to offer. i wish the same for my friend stef as well.

on the way home i called the in-patient unit and they said russ had a BM this morning after a suppository and was up most of the morning. he did very well but had slept basically all afternoon and didn't eat dinner. what i am most amazed at was that he slept through the exciting packers game! in wisconsin, the green bay packers are a huge deal. maybe that's why there was virtually no traffic on the roads between 12 and 3:30! russ did fine without me today so it was a well spent personal day all around.

status quo

2007-09-08T22:26:00.000-05:00

no real change in russ today. he was up for about 2 hours at lunch time and again for about an hour at dinnertime. his appetite wasn't as good today, basically only wanting to eat sweets. he also seemed more withdrawn, just wanting to sleep or keep his eyes closed when up. he has had no further results since his BM on thursday. the doctor today said he has normal bowel sounds but also tinkling bowel sounds indicating that the ileus is still present. i'm not really worried yet, but i wonder if the AD can cause one's mind to shut down so to speak, so that they forget how to push and have a bowel movement? russ has been on a daily stool softener and laxative since wednesday and so far only able to have results with an enema.

fatigue

2007-09-08T09:06:00.000-05:00

yesterday russ had a ok day but was tired. i guess he was entitled after his "big ordeal the evening before." he slept through breakfast and through most of his bath that the aide gave him at 11:00. we then got him up inot the wheelchair. at noon his lunch arrived and considering he has eaten next to nothing the past week, he ate a very good lunch. i kept him up in the wheelchair until 3pm. my niece arrived and took him for a stroll and he sat at the nurses station.

during that time i ran out to bring back the staff a little something. they had an emotional morning as they lost a young woman who had been on hospice for over a year. plus the unit has been busy so they have been short staffed. i brought back items from body works that would hopefully make them feel good and pampered. russ did a pretty good job holding the card and bag for them. he got lots of kisses from the staff (especially glenda)which of course he loved!

i asked russ at 3 if he was tired and a loud, emphatic "yes" resounded. back to bed he went and he did not stir much after that. he ate very little for dinner so i am thankful for the lunch he ate.

i as well came home exhausted. bob knew i was tired when i said i was going to bed and it was well before 10pm. he asked me if i blogged and i told him i was too tired. i really think the emotional stress of last week got to me and yesterday seeing that i was able to keep him up for awhile and eat and he did pretty well, the fatigue factor took over. i slept like a rock for most of the night and woke up refreshed and ready to tackle whatever faces me today.

i called the unit and russ slept soundly. glenda is there again today and lynne will be coming on for pm's. what more could russ want! he'll have all the kisses any man could ask for.

results!!!

2007-09-06T21:51:00.000-05:00

it was a very long day (again) but at least there were some results! the second x-ray still showed a "mild ileus" in the small bowel with gas and stool in the large intestine(i will have to ask the doctor in the am how that differs from a "partial ileus" which the first x-ray showed). a fleets enema was given at 7pm and about 1 hour later there was a LARGE result. what a welcome sight.

now over the next day or two we will have to see if with all the stool softeners, etc. russ is able to produce on his own. even though his results after the enema were great i have to wonder how much of that was still residual just from the large colon and if any of it was from above the ileus in the small bowel. he had gone basically 10 days without a significant BM!

for tonight though i am too tired to think about it. russ slept through basically the entire procedure and clean-up. i guess you could say he was just "pooped out." i feel the same way!

thanks for all your prayers and support. you guys continue to amaze and uplift me!

good morning

2007-09-06T07:53:00.000-05:00

i walked into mark's room late last night and was reminded of a poster i gave him a few years ago. it say's

GOOD MORNING!
THIS IS GOD,

I will be handling all your problems today.
I will not need your help,
So, relax and have a great day!

(author unknown)

i pray we all have a great day as well!

rollercoaster ride

2007-09-05T21:20:00.000-05:00

i really feel like i'm on a rollercoaster ride this past week. when i arrived at the hospice unit this morning russ was sleeping and i was told he had had no BM during the night but slept well. (i later learned he did have a small BM during the night but definitely not enough considering what i imagine must still be up there).i noticed he did not have his oxygen on and the nurse told me that last evening they had him out by the nurses station and he didn't seem to need it so they kept it off. a good sign right?

well russ slept most of the morning and just didn't look good to me. when i could get him to open his eyes, he just stared right through me. i'm not sure he even recognized my voice. his cognitive level has definitely deteriorated.

i had a good honest talk with his home hospice nurse janine today. she stopped to see him at the unit and could hardly arouse him and when he did wake, he had the same blank stare. she got me to start thinking about when he comes home, he will still be appropriate for day care? is it really good or fair to russ if he is sleeping almost 24/7? she also asked me if i thought russ would ever ask for food or drink the way he was now, or if he would just sleep? did i really want to try to encourage and force feed him? these are some hard questions i need to start thinking about. it was a good talk and one i will have to ponder how russ would answer them. for now i will take it one day at a time and just worry about him pooping so he can get home.

the doctor made rounds and decided to start him on a bowel regimen since he really hasn't started to move things on his own. he was given a suppository at noon but as of 9pm no results.

russ ate some scrambled eggs for breakfast but refused lunch and ate only a few bites of melon for dinner.

late afternoon russ woke up and was fairly awake again. we listened to music and he would perk up when he heard the saxophones playing. he feet were also tapping to the beat. a total different person. my sister arrived in the evening with my niece and he even ate quite a few bites of a pasta salad she brought.

i was able to get him to walk twice again today. bob stopped by late afternoon and we got him to walk and this evening my sister, niece and i got him up. he was even smiling when sue and kristen were there. when we put him to bed after his evening walk, the nurse pointed out that his knees were mottled and cold. this is frequently seen when the cardiovascular system is compromised and the bodily systems start to shut down. his heart has never been an issue for russ but then again.......this is usually a sign one see's when the end is getting near. his lips and mouth appeared blue, so the oxygen went back on.

this rollercoaster ride is showing such drastic dips and turns. i wonder when will it end and coast for awhile or will it come suddenly to a halt? only God knows the answer to that. i pray for strength for me and peace for russ.

waiting, over analyzing, patience

2007-09-04T17:54:00.000-05:00

today has been a very hard day for me. sometimes i wish i weren't a nurse because i think i read and analyze things more than they need to be. russ kept his lunch and dinner down yesterday which is great. his appetite has drastically decreased since before his ileus. i wonder is it because he hadn't eaten for 3 days (most likely), is it because he still has a partial ileus (possibly) or is it because he did have another bleed and the disease has just progressed so that he can't process eating as well(possible as well).

there have been no real BM's since eating but it is only been 24 hours so i need to be patient. this morning after breakfast he was very cool & clammy like he was prior to the transfer to the hospice unit. i wonder if it is because the day was starting to heat up and i needed to turn the room air conditioner on (most likely) or because the block in his small bowel is still there (possibly)?

after breakfast he started hiccuping and could not stop for about 20 minutes. the same thing happened after dinner last night and lunch today. i know that if the blockage is still there, his enlarging stomach will put pressure on his diaphragm which will cause the hiccuping. is that the reason (quite possibly)or is he swallowing air after not eating for so many days (possibly), or is it coincidental? (?) his stomach still appears fairly soft and he still only looks 7 months pregnant instead of 9.

he was very sleepy today after breakfast and all he wanted to do was sleep but i knew i needed to get him up to walk. today it took me and an aide i bet 15 minutes to get him up, unlike the previous days before he started the solid foods again. was this due to him being uncomfortable in his gut (possibly), tired from the eating and walking the previous day(quite possibly) or just "one of those AD days?"(very possible).

i am not very good at always being patient. i need to put my faith in God's hand and pray that He will take care of things. this is hard for me as i like to be in control. with this disease, there are so many unknowns that we know this is not possible. so many have posted, myself included, about the uncertainly of this disease. yet that doesn't make it any easier to accept it.

i guess i still have a lot of work to do on that. i hope to get some sleep tonight and save some analyzing for tomorrow.

solid foods

2007-09-03T21:43:00.000-05:00

russ slept well pretty last night. i did too as i decided to go home yet i woke up a few times thinking i heard something on the baby monitor. then i would realize i couldn't have and would wonder how russ was.

yesterday was only liquids for russ. today the doctor came in and said he definitely heard more bowel sounds and wanted to try russ on solid foods. for lunch he had a few bites of hamburger, baked beans, cole slaw and watermelon. for dinner he had a little vegetable beef soup, and a few bites of a ham sandwich. and of course some ice cream, russ loves his ice cream. we will see tomorrow if he is able to keep it down but more importantly if he is able to pass it through, ie poop. i never thought i would be so glad to see someone poop.

i talked to one of the hospice nurses and she said they recently lost someone due to a bowel obstruction and agreed it is a very painful way to go.

russ was able to walk again today so that was good. i want to try to do everything i can to get that peristaltic action going again. he wasn't as alert as yesterday but that could just be the day.

i hope things continue to keep moving in the right direction (no pun intended!). i look forward to getting him back home, where i can use my own bathroom, my own kitchen to heat food up for myself, watch my own tv, and most importantly my own computer to check in more frequently with all my friends blogs. i really miss that connection. i feel i have so much catching up to do. too bad i can't ask to move the hospice computer into russ' room, it sure would make my life easier!