SO proud

i have been in a book club for the past 24 years and for the past 10 years we have had a summer family picnic at our house. we all pretend we are at a park and bring our paper plates, a cooler filled with a dish to pass, meat to grill and drinks. this year i was a little hesitant to host again yet i knew if i didn't i would not be able to attend if it was elsewhere due to leaving russ. things were looking ok until bob learned he would have to work sunday until 3pm. everyone arrives around 11am and bob and i usually spend sunday morning setting up tables, arranging the lawn chairs around our pool, putting out receptables for trash, recycleables, etc. needless to say i started to panic.

well, no need. both my boys were up by 8:30 am (a HUGE sacrifice for a 19 and 21 year old on a non work day). they had everything ready to go by 10:30. but their helping did not stop there. during the entire picnic (from 11-5) the boys sat inside with russ. they got him ready for lunch and kept him occupied the entire time. only once did mark come out with a panicked look and called me. i knew immediately what the look meant. lets just say, it would qualify for the post, "share your best poop story." mark stayed with me the whole time, reassuring grrr "you will be ok, nancy will have you feeling better in no time." it was so sweet.

after everyone had left, matt told bob and i he had won tickets at work to a lakefront festival in milwaukee. he offered to stay with russ so that bob and i could get out and enjoy ourselves. after discussion we took him up on his offer and had a great time. we arrived home around 11pm and russ was safely tucked into his bed sleeping soundly.

i can't tell you how proud i am of both my boys. all they did for me and russ yesterday they did without complaining. this may have only been 1 small day out of their lives but it meant so much to me. they will soon be leaving to go back to college in about 1 month. how i will miss them. not only for the huge help they have been this summer but for the wonderful young men they have become.

if you are reading this matt and mark, i want to publicly tell you how very much i love you both and how very proud i am of both of you. i know this isn't easy seeing your grrr deteriorate like he is but somewhere deep down he feels your love and concern for him and loves and appreciates it too!

connecting with family

today was a beautiful day outside so I took russ outside for lunch. i had hoped to be able to lounge in our pool for a while while russ ate but that was not to be. whether it had to do with him usually eating inside or just one of those days he was unable to process what to do so i had to feed him. after a while he seemed pretty alert so I decided to call both his brother and sister to say hi and see how they were doing. russ was able to say hi and say a few words to both. i put the phone on speaker so he could hear the conversation. periodically russ would smile and his eyes would light up as if something was said that rang a bell for him deep inside. it is something i need to remember to do more frequently, make contact with his family, his past. i was also very amazed and proud of myself. after both calls i checked my cell phone to see how long we had talked. 19min20sec to his brother/sister-in-law and 19min28sec to his sister and nephew. how’s that for not showing any favoritism!

emotional day

as soon as russ left for day care today i was in my car driving to illinois. this is where i grew up from the age of age 10 until i graduated from college. my best friend during that time had just lost her father and the funeral was this morning. he had had cardiac problems for the last 12 years but was able to live a basically normal life up until the last 6-12 months. unbeknownst to me he had also been diagnosed with dementia a few years ago. fortunately he was on AD drugs and was doing very well. it sounded to me as if he was still in the early stages of this disease. as i thought about what a wonderful, loving man he was, and how much his family would miss him, i was also happy for him. my heart goes out to my friend and her family yet i was also a little envious of them. here was a man and a family who are going to be spared the horrendous robbing of his mind and thus his life. he will not have to face the fear of not remembering his family who was so special to him. they will not have to face the slow goodbye that we AD caregivers face on a daily basis. i found myself questioning why russ has to be so physiclly healthy except for his AD. he has no cardiac or blood pressure problems, no renal or diabetic problems. his only issue has been his brain bleeds which the neurologist feels is related to the AD. i know we do not know why things happen the way they do, and it's easy to say what will be will be in God's time, not ours, yet i wish that God would see fit to end russ' suffering. i know part of this is selfishness on my part yet i know russ would agree if he knew or could express himself. sometimes acceptance is hard to come by.

goodnight sailor

my dad served in the navy during WWII. we have found, not surprisingly, that there are times he can’t understand what we want him to do. actually my 2 sons were the first to think to talk to him in language he might remember, ie, military lingo. when russ first stands up, bob will tell him to “wait until you get your sea legs under you.” or when we need him to turn, matt will tell grrr ”turn the boat”. if we are trying to get russ to walk up straight instead of hunched over i remind him to “stand at attention.” mark has been the one this summer who frequently helps me put russ to bed. every night mark will salute grrr once he is laying down and say “goodnight sailor, carry on.” frequently russ will salute him back and say the same. what precious memories these are becoming.

reflections on blogging

it has been a little over a week since i have started blogging and i thought it was a good time to reflect on that. i originally started this with the intention of recording my feelings, thoughts and some memories as my dad and i travel what appears to be the final lap of his journey with alzheimer's disease. while i still feel that is what i want to capture by writing this, others things have also come to realization.

i have found this to be extremely therapeutic for me. sometimes, although not always, just putting my feelings on paper makes me feel better about things. i have a new sense of urgency daily to want to sit down at the computer and start typing. i have also found myself thinking about things i would like to write about, memories of my dad i want to share.

i have received e-mails or phone calls from those i have given out my blog address to telling me how they have enjoyed reading my blog. whether it has been russ' hospice nurse, the regional services coordinator at the alzheimer's association, or friends and family i have appreciated you taking the time to read it. i do not write though for the compliments or positive reinforcment, i write because it helps me to express my feelings and thoughts about what i'm experiencing, both the good and the bad.

i have also really appreciated the comments on my posts from my "AD friends" but maybe so far, the most pleasant surprise is that i have met new friends on the internet who have discovered my blog and have responded. in turn i am now following their experiences and am gaining knowledge and insight into their journeys. even though we have never met and in all likelihood may never meet, i feel blessed that our paths have crossed and i look forward to traveling this difficult road together with my AD caregiver friends for you truly know what i'm going through and feeling. you know who you are and i thank you.

and last but certainly not least is my feeling that by blogging i somehow feel closer to both God and my mother. maybe she is looking over my shoulder giving me the encouragement and strength to continue every day. i know that God is and without that faith this would even be more difficult than it is.

lemonade anyone?

yesterday afternoon was a beautiful day. russ and i sat outside, listening for birds and train whistles (as a youth he worked at a railroad yard signaling trains). i offered him a glass of lemonade and he curtly told me “i’ll hold it. you always get it all over me.” i quickly said “ok” and apologized for my messiness in previous times. my son mark was standing near, heard my dad, and quickly turned away so russ wouldn’t see him laugh.

this morning as i was giving russ his scheduled liquid tylenol i was conscious of whether any would spill. it didn’t so i asked russ, how did i do? he looked at me and then replied, “you’re getting better.” i’ll have to let mark know when he gets home from work. he'll be happy to hear that!

long time friends

this morning bob and i took russ to meet his long time and best friends from college. the 2 couples got married within a week of each other and have remained close for 58+ years. over the years the 2 couples would travel to each others houses for food and good times, take trips together and celebrate their anniversaries together. we children even threw them a surprise 50th anniversary party together. pete and janet travel every summer to wisconsin and rent a place down the beach from my parents house for 5 weeks. pete and janet first discovered door county and our families have spent part of their summers up there for well over 45 years together. their children, especially tina, was like a cousin to me growing up. last summer was tough, as it was the first summer since my mom had died, but i was still able to take my dad back to "his home" to have him spend time with them.

this year will be different. russ will not be able to get up there, to spend time with pete and janet. such a change and difference in russ in the past year. last year russ and i were able to take daily beach walks of a mile or longer, join pete and janet for cocktail hours and comment on the beauty of door county. i could see the sadness in their faces as they tried to talk to him, and as i tried to explain to russ who they were. even more so as they watched bob and i get him in and out of the car into his transport chair, me ordering russ' breakfast, cutting up his food and feeding him his first few bites.

pete did a great job trying to reminisce with russ about people he might remember from college. russ shook his head yes, that he remembered, but did he really? i wonder but i don't think so.

this is such a cruel disease that robs one of precious memories and people. how i would give anything to have russ back, but i know that will never happen. i especially miss my mom today too.

thank goodness for the fire department!

right before noon today everyone was gone except for russ and me. i was attempting to get him out of his recliner and into the transport chair for lunch and i was aware that it wasn't going to happen. he went sliding down to the floor. after numerous attempts to get him up i realized it wan't going to happen without one of "my big strong guys." russ said he was comfortable on the floor (bless his heart), but i knew it could be several hours before anyone returned home.

i called the non-emergency fire department number and within 10 minutes they had russ up and in his chair ready for lunch. he thanked them for helping (without prompting i might add) but after they left he kept making this whirling noise with his mouth and moving his hands back and forth. after a while i finally figured out he was trying to tell me how fast he had thought they had been able to get him up. when i asked him if that was what he was trying to tell me he got big eyes, shook his head yes and said WOW.

wow is right, it was pretty amazing.

no big deal

an internet friend of my posted a thread yesterday titled no big deal. in her post she reflected about her life with her LO and related what was a big deal and what was no big deal. i thought a lot about russ and reflected myself.

here is my version of no big deal,

as his disease has progressed,
i now have to be russ' advocate, no big deal
i now have to dress russ, no big deal
i now have to wash up russ and brush his teeth, no big deal
i now have to prepare all his food and sometimes feed russ, no big deal
i now have to toilet russ, no big deal
i now have to transfer and assist russ walk, no big deal
i now have to give russ all of his meds, no big deal
i now have to sometimes decipher what russ is trying to say, no big deal
i now have to join russ in his reality or when he hallucinates, no big deal
i now have to try to calm russ down when he gets anxious, no big deal
i now have to put russ to bed and get him up in the morning, no big deal
i now have to say russ' prayers for him, no big deal

some days when i help russ with some of these activities, i may get a "thank you." - now that's a big deal.
most days though, russ is still able to say to me, "i love you too." and that's a REALLY big deal!!!

unk's letter to me.

What I Did On My Summer Vacation – By Unk

If you have been reading Nancy’s blog, you know that her mother, my sister, passed away unexpected in February of 2007. Gene’s husband had medium stages of Alzheimer’s. He had very little short-term memory, but would compensate with the tremendous social skills that he had developed over the course of his life. To a stranger that did not know him he would seem fine, but he was totally unable to live on his own. Thus in one fell swoop, my two nieces not only lost their mother, but had to take care of their father, who was slipping away. No time to reflect and grieve. They had to make all the necessary arrangements to bury their mother, close up the family home (a nice one on a lake), as well as move their father four hundred miles to one of their homes. They were fortunate in that they lived within 20 miles of each other. They each were married with children of their own. They had loving and successful husbands, and were in the process of raising wonderful children. They owned their own homes in nice areas. This was my assessment from a loving uncle two thousand miles away.

Because I lived so far away, I was not instrumental in their daily life, but would visit my sister and her family for a week every other year, as best I could. My sister was very strong on family, and loved to entertain. During my semi-annual visits, she would invite other members of the family to come up, so that we could all visit and re-connect. I had always envied my sister’s close-knit family. I think that one of the reasons that she and her husband bought and built a house on a lake was so that the family would come visit, which they did -- their children, grandchildren, brothers, cousins, and good friends. She really was the center pole of the family tent.

Like many of us, she and her husband did not plan well financially for their retirement. After she died, my nieces asked me to sort through their parent’s fiancés and see if I could make sense of it all. They were overwhelmed with the immediate tasks that an unexpected death requires. I was glad be of help, and threw myself into the task. I was able to flesh out a fairly comprehensive picture of their financial situation, which, while not bleak, required Russ move in with his children, and the house be either sold or rented to pay for the mortgage and upkeep.

I suppose that at this point I could have continued the relationship I had with my nieces, with a visit every other year or so. But I have my sister’s sense of duty and obligation to family, and now that she was gone, I felt it even stronger. I felt the need to pay back my sister, even more so after her death -- in 1983 I had open-heart surgery and my sister, without being asked, came out and took care of me. The timing was terrible, as it was right before Nancy’s wedding. It really meant a lot to me, and stayed with me all these years.

I had to do what I could to help my nieces, but was limited to emotional support and life coaching due to being so far away. I called them each every Sunday, not only to say hello and to check in with them, but to encourage them to think about future options. After all, no one survives old age, much less Alzheimer’s. I strongly believe you must have a plan in life for everything that you do. Taking on a task without a plan is like going to the grocery store without a list. You can do it, but you end up forgetting what you originally went to buy, and picking up things you don’t really need. In an effort to help them develop a long-term plan for taking care of Russ, I would enter into “what if” scenarios. After a while Nancy figured out that I was helping her create her own plan, rather than giving her a plan.

A year and a half passed, and I had an excuse to fly back and visit my two nieces. I told Nancy that while we were visiting, Dunk and I wanted to help take care of Russ and give her and family some respite. As Nancy said, I had some trepidation, hell, I was scared sh*tless! But, I am of the belief you can do anything you set your mind to. Of course that doesn’t make it easy.

What I found was that, as so often happens, the anticipation was much worse than the reality. Nancy has incorporated caring for Russ into the fabric of her life, as has her husband and her two boys. She made taking care of Russ quite easy. She broke his care down into a series of very manageable tasks. She had a four-page instruction packet with all the required information: schedule for meds, TV, music preferences, where the clean diapers are, how to clean Russ up, where the dirty diapers go, etc,. Not only did it make it possible for Dunk and I to care for Russ on our own, but when Nancy was there, we could still take some of the burden off her shoulders.

While taking care of Russ has been a big drain on the family’s time and energy, it is my impression that the overall effect on the family is beneficial. My experience was very rewarding, much more than I thought it would be. I didn’t think it would be rewarding at all, it was just something that I really wanted to do to help out Nancy and her family. I’m not sure I can explain why I found it rewarding, and I probably don’t need to, to those reading this post, but to me it was a totally unexpected result of my helping Russ and Nancy.

When I first arrived, I told my both nieces that in all likelihood, I probably would not make the trip back when Russ passes away. I’m 71, and like overripe tomatoes, I don’t travel well. When I told them of my decision, I felt some pangs of guilt. But that changed after I took care of Russ. In taking care of his every need, no matter how personal, I felt we made a very basic human connection, even if he didn’t know who I was. Because we were able to connect in that way, I no longer have any regrets about my decision. I was able to say goodbye to him, while he is still alive. Even though my intent was to help Nancy, which I did, I also helped Russ, and learned something about myself as well, and those were unanticipated, yet important benefits.

Well there you have it, my first attempt at blogging. I gotta tell all you AD bloggers, my hat is off to you -- not only for the caregiving, but for the blogging. Neither came easy for me.

Nancy, thank you so much for letting me hijack your blog. In case I haven’t said it enough, “You Done Good.” I love you. Unk

doctor's appointment

yesterday russ saw the neurologist at the va. he is extremely well known and respected in the area for his work with AD. russ and i spent almost an hour with him, discussing the many changes that have occurred in the last 6 months since he last saw him. russ has had multiple brain bleeds, thought to be what they call cerebral amyloid angiopathy (CAA), which is not uncommom in patients with AD. to make a long story short, a decision was made that it is an appropriate time to start weaning him from his AD drugs. over a long period of time some feel that the cumulative effects of these can cause weakness (which is significant in russ) as well as the fact that russ has declined so much that he is not able to do much for himself anymore. i will start by stopping one, wait a few weeks to see if there are any negative behavioral changes, then stop the other and see. we are even going to see if we can eventually wean him off the risperadol. his demeanor is so passive that that may no longer be needed as well. i am to call every other week with a status report and take him back in for a follow-up in 2 months. dr "A" was very happy to see that russ has already been admitted to hospice service.

how do i feel about this? so many thoughts were racing through my mind yesterday and last evening. as i sit and look at my dad, and see what his life is like now compared to even say 2 months ago, i know the decision is the right one. that is not to say i don't wish that things could be different, that we could still go for long walks, do errands together, laugh and have him tell me jokes like he use to. but if the drugs are no longer helping, than what is the use of struggling to get them down him, to complicate his life more than it already is and to possibly be adding to his weakness. i pray to God that this will be the right decision for him.

unk & dunk

i owe a lot to my uncle ("unk") for helping me to create my blog (and i must say we had fun doing it). many have told me that i should keep a journal to record my thoughts and experiences of this journey. i love reading the journals/blogs of friends i've met on the internet who are also traveling this same road and have gained SO much insight from them. my unk is my mom's only sibling and lives in california. over the years we did not have the opportunity to see each other often and would only talk maybe 2-3 times a year. since my mom's death he has been a wonderful source of strength and support. without fail he has called me every sunday since my mom died and has only missed maybe a handful of sundays in 17 months.

unk and dunk (dottie, his wife, my aunt) were here for the last week to visit, to make me laugh, reminisce, and to give me and bob some respite. unk admitted that he and dunk were a little nervous about staying with my dad (russ) but it was something they wanted to do. they did a fantastic job and i really think russ may have recognized unk at one point for a brief flash. i know my mom is very proud of her baby brother. thanks unk & dunk!!! i love you both.

our story

i was born on my dad's (russ) birthday and 2 days after my mom's birthday. what a special thing to be able to tell people that you share the same birthday with a parent. my dad used to always kid me and tell me "i planned it that way!" i grew up in a wonderful loving family with my mom, dad, and my older sister, sue. my mom and dad were married for 56 years until she died very quickly and unexpectedly from a ruptured aortic abdominal aneurysm in feb '06. russ was diagnosed with AD in early 2002, but as many others, looking back, he exhibited early signs for a few years prior. after my mom's death, it was very clear that russ could not live by himself. my sister and i moved him 3 hours from his home to my sister's house. he lived there 4 months and then split time between sue and i the next 3 months. realizing that stability was best for him vs. moving him back and forth, russ permanently moved in with me and my family in the fall of '06. my husband bob has been wonderful and supportive through all this as have matt & mark, our 2 college sons. they both have stepped up to take care of their "grrr" as well as being very insightful as to what is happening with him. even though i am a RN, nothing could have prepared me for the situation i found myself in. i have learned so much more from other caregivers than the health care profession.

what i have learned is that you live life one day at a time, one moment at a time. this is my family, my father, and i have chosen to do this. say that it is God's calling, or my destiny, but since my mother's death i have learned that even though life isn't always fair or easy, you learn to live with what you are dealt with. would i have chosen this path for myself or my family, absolutely not! but right now i can see myself living my life no other way and feel blessed that i have the honor and opportunity to help my dad walk down this path, "into the mist", to his final destination where he will once again be reunited with my mother. how long that will take, only God knows but i hope and pray that God will give me the strength so that i can stay by russ' side.

creating this blog

my wonderful crazy uncle (unk) from california is here visiting and to give me and my husband some well needed respite. i have asked him for some help in creating a blog so i can record memories of this journey that i am taking with my dad who has alzheimers.