What a difference two years make.

Just Bill

Two years ago my wife did our Christmas shopping as she had for 35+ years. We have 6 people to shop for and she got the gifts mixed up. No big deal, busy with work maybe just a brain fart. Not only did she do all the Christmas shopping but everything else as well. All I had to do was work, she spoiled me rotten doing everything that needed doing. Laundry, shopping, paying bills, housework, everything. Fast forward two years and I have taken over everything she used to do. Not everything right away but gradually. First thing was getting the bills caught up and straightened out. It isn't really that hard, besides 2 checks and 2 phone calls everything is autopay so it's pretty easy to keep up with. Actually the first thing was shopping because I was the designated driver once she got her diagnosis. By taking her car away I had to be her wheels. Cooking came next then laundry. She cannot use a coffee maker but she can remember how to operate the dishwasher. As long as she is able she can do that until she can't and I'll take that over too. I really didn't have a point to this long boring story but it is therapeutic for me to type my thoughts. I was sorting out the gifts and doing laundry last night and I just caught myself contemplating how much life has changed. My wife went from doing all this to a toddler I had to keep from messing with the gifts and get into the shower before bed. She is at the point where I have to remind her to shower. Once she is in the shower she is fine, the drama is getting her in to the shower. She used to take a shower every morning. Now if I don't nag it won't happen. She is convinced she just had a shower even though it was two days ago. I still consider myself lucky because of her independence in showering and toileting so far.

Dio

Bill, I completely get what you're feeling. I never did housework except cook, take turns hand-wash dishes and some light dusting. Now I have to shoulder everything. Even so, I'm okay with it. I'm just not okay with Mr. Hyde when he comes out. We're still on every other day cycle, so I should be thankful it's every other day, not every day that Mr. Hyde appears.

For me, it's what a difference two months make. On a daily basis, morning and night, I now must guide him, or convince him, rather, that he needs to brush his teeth, wash his face, and change into the clothing appropriate for day/night, etc. He'd resist doing the routine, claiming he'd already done it, and/or question why am I asking him to do these things again. Every morning, we go through "I should take a shower /shave... No, I don't need to shower/shave ... Didn't I already take a shower/shave?"  I even have to explain why I've chosen the specific undergarments and outfit. Sometimes it would take about an hour to get him ready for bed or to start the day. It's exhausting, not to mention having to deal with all the other symptoms dementia presents. Incontinence has just started for him, and I'm having a very difficult time convincing him to wear padded underwear or diaper, especially when we go out.

Just a couple months ago he would put clothing on that I've laid out for him without question and prepare for bed by himself. How things can change in such a short time. I tell myself that it's okay cuz he still can shower, shave and brush his teeth himself without assistance; so what if I have to "remind" him. But it is so very hard to watch them decline.

ghphotog

My life to a t. My wife is probably a year or two more advanced but finances were the first obvious sign something was wrong and it's been cascading ever since. All I had to worry about was working and my golf game. My wife took care of everything. I look back and realize how selfish I was leaving everything to her although she rarely complained. She'd ask me to go with her to the store but I had other things, excuses, as to why I couldn't that day. Now I regret not being more involved in her life and doing the things she likes instead of what I liked. Now I'm doing it all and would give anything to go back and redo those things. Any good news is she will never remember what a selfish SOB I was.

toolbeltexpert

That's my story as well. A slow change from being spoiled to taking over one thing and then another.  I was surprised our finances were more messed up. Some things like driving were not too bad since I did most of that anyway. Cooking, laundry and cleaning were another story, I let a lot just go dust built up everywhere, lucky for me my dw is deaf without her hearing aides, so every day I got up and vacuumed. 

This year I did all the Christmas gifts and just handed them out without her assistance. She has progressed past knowing. She didn't remember that yesterday was Christmas. 

Just Bill

Hey Dio, my wife had the Jekyll/Hyde thing going on and her Dr prescribed her memantine and zyprexa. No anger no psychotic episodes and more general cooperative sweetness. When her Jekyll/Hyde behavior comes back we upped her doses and she is back to pleasant. What she has been experiencing is phantom anxiety. Because I am now doing all her old tasks she still thinks she has to do it and starts looping everything she has to do. She will go through the whole list Oh shi* I have to do laundry, or shop, or pay bills or a lot of new imaginary responsibilities that exist in her new reality. I respond with you already did that remember ? We did it together I helped you. Since we have wood floors she loves to run around the house pushing the swiffer. She loves to clean the kitchen. She puts things away in a different place every time so I am used to it and I know most of her patterns to make things easier to find. She also fidgets shuffling papers and rearranging things thinking she is getting things done but she isn't. Often after a cleaning binge it's an easter egg hunt finding everything. She constantly is asking did we pay this or that bill, some real some imaginary and I say yes it's all taken care of you are retired and don't have to worry about that anymore. It's normal for me to set a half full coffee cup down and if I take my eyes off it for more than a few minutes it dumped and in the dishwasher. That is another thing she is obsessed with trying to make coffee. She can't but doesn't give up trying. It's a good thing coffee and the chocolate powder she puts in it is relatively cheap. Anyway I am using patience I never knew I had because I am used to all this so far. Thank you all for your responses. I feel I am in good company sharing this experience.

PookieBlue

 12/26/2022

Just Bill,

Sounds like many of us are in the same boat. I guess lucky for me I have handled the finances since DH and I were married 35 years ago. I had a career, meetings, some travel and a license to keep up with and DH a carpet cleaning business. He was sole proprietor so able to control his own hours, maybe 20 hours a week. This arrangement allowed him to be with his two young children every summer for 38 days. He did all the shopping and cooking and I helped as much as I could with his business and everything else except upkeep on the vehicles. As the years passed and the children became adults with their own families, DH began exhibiting unusual behavior. There were small troublesome things at first, then redundant questions, personality changes, and outbursts that I had to learn how to avoid the triggers. (ie Don’t talk about Alcohol use or selling vehicles and sport cars. Watch my tone when I respond to whatever, and try my darnedness to be patient. I’ve tried to keep our lives as ‘normal’ as I can. This has been difficult, and we all have our human frailties. Approximately 85% of everyone of my days is like rewinding ‘Barney’ for the 18th time. Can almost make you go stir crazy! Fast forward to today. My husband can most of the time find FoxNews with the audio voice control. He does this first thing in the morning. He makes the bed imperfectly and gets dressed, many times leaving his night T shirt on. He comes to the kitchen and I give him his meds and a light breakfast. A couple three days a week I cook him a more substantial breakfast. Plus dinners most evenings. He will sometimes hand wash the dishes which I will later place in the dishwasher. He walks out to get the paper. I worry about him missing the steps because his vision is limited and he is somewhat unsteady. There is no paper on Mondays, but I give him the weekly Epoch Times on that day. He basically reads mostly the headlines. When the local paper raised our rates again to about $3 a paper, they agreed to let me continue the previous rate when I said we would need to cancel our subscription.  On any given day, I am not sure if he thinks I am his sister or if I am his wife. I tell him if I am his sister, I need to get dressed with the door closed. We kind of joke about it, but a bit later when I am alone it makes my tears fall.  Most of the day when he isn’t napping, he doesn’t know this is our house, or that no one else lives with us. He still eats on his own, but I cut everything up for him. He can’t stay on task for anything, so I guide his every movement. We haven’t had too many meaningful conversations in several years. I take him everywhere with me because he will accidentally let the puppy escape if he’s left alone for even a short amount of time. He still converses with family, but you can tell it is difficult for him. Although, I have taken over everything, I am still grateful for what he continues to be able to do. I know that will change, and I try to prepare myself mentally. It’s been  almost 10 years. I believe we all have lives like this, and so many uncertainties for the future. Our stories are creating a bond with one another as we struggle with our personal challenges. I’m glad others share their experiences because there is always so much we can learn to help one another.

Blessings and comfort to all the spousal caregivers. 

Dio

Just Bill wrote:

Hey Dio, my wife had the Jekyll/Hyde thing going on and her Dr prescribed her memantine and zyprexa.

Thanks, Bill. Our psychiatrist wants to add memantine, but our neurologist doesn't agree at the moment...sigh. Neurologist is not convinced it's LBD just because some core symptoms are mild. His current official diagnosis is probable LBD and possible Atypical Alzheimer's. He wants to run more tests first. We have appointments for these tests in January. I guess we'll have to wait and see.

Sligo177

Bill,

So glad you expressed your thoughts.  It's hard to realize all that has changed for you, and the changes that will continue.  Just know that we care very much, and share many of the same experiences.  You are doing great.

RCT

Bill,

You have told my story….in 2019 I took over driving and finances (they were a mess) and now make all decisions and take care of everything. He doesn’t remember when he showered so now I have him on a 2 times a week schedule and so far no resistance. He used to shower daily. He is 80yo and not active so twice is working right now. I ,too, feel grateful that he toilets independently for now. It was overwhelming in 2019 ,but now I have it under control although at times it is stressful. It’s a full time job and i get tired. I do go to a local support group which is helpful. Gratefully i can still get away to practice my Tai Chi and go for walks. Anyway no point to my story either..it was just comforting to read about someone with a similar experience. 

Sprayberry

Your life sounds very similar to mine.  I have only been going through this for 5 years.  My husband's neurologist said in February that he is moderately severe.   He is still shaving, dressing himself, and eating on his own but very slow.  He paces around the house and shuffles papers thinking he is working.  I just let him do it.  I took over our finances about 2 years ago and it took some time because everything was in a mess.  He no longer can drive or be left alone so he goes everywhere with me.  It is very hard because I don't ever get a break.  I do plan on hiring part time help to come in when he gets worse to help me.  I will then once I get to know the person coming and feel comfortable will take a break from it all.  I have 2 puppies so I have to feel real safe with the person helping me because I don't want something to happen to by puppies.  They are my children and part of our family.  I have good days and bad because some days I am very emotional from angry to sad to everything else you can be.  I am 66 years old and cannot believe the retirement I have been dealt.  But I do pray often and read my Bible and put this in God's hands to help me get through.  I just never thought in a million years my husband who was so intelligent would end up with Alzeheimer's.  

  

Jude4037

My husband passed in February of ‘22’ but his journey was the same. Slowly taking over things he used to do but then he started falling and there were trips to the ER and short stays at the hospital because of brain bleeds. He got very angry and aggressive and in an attempt to try to get meds to calm him he was put on geriatric Psych ward nothing helped, more falls finally in a nursing facility and over medicated got Covid  and back to hospital put on hospice and came home for his last ten days. This is an ugly disease to say the least.His mother had suffered from Alzheimers also but remained sweet and docile but did not anyone. It affects people differently. I’m thinking maybe his falls contributed to the personality changed , because he was always a very gentle soft spoken man before.

Jeff86

Nothing long or boring about your post, Bill.  Sometimes we need to measure the distance we’ve traveled, acknowledge the losses, and refresh our gratitude.

My DW is more progressed, and needs help with all ADLs.  Before dementia, she could run the world (well, our world) with one hand tied behind her back.  I mark and grieve the losses, but in the midst of a lot of incoherence she is able to—and does—tell me she loves me.  This won’t last forever, but I feel blessed to have her say those words.

RCT

It sounds like your husband is a bit further along than mine but it is so comforting to hear your story..66 yo and this is our retirement!! Never dreamed my life would turn out this way. And ironically I used to be a facilitator for a memory enhancement group….all the participants had Alzheimer’s. Needless to say I left when my husband got diagnosed. I pray every day and work on gratitude and acceptance but dang the road seems so long!