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!
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.
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.
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.
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.
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.
(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.
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.
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.
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.
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!!!
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.
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.
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.
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!
(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.
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?
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!
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 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.
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!
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!!!
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.
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........
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!
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.
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.
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.
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.
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.
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....
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!
(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.
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.
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!
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
this is a collection of some of my thoughts as i travel through life. some may be moving forward, as in reading a book, or, i may periodically reflect and turn back the pages in my life on some previous memories.