grief

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

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!

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

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.....

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!

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

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

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

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

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

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

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!

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

(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!

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 !"

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!