When it is time, is it her or me?

Kenginnyd

For starters I think we have a great love story since 1959. We've also been active physically, running, cycling and sailboat racing. Her physical health is excellent much better then a normal 82 year old.

We're probably 5 years into Alzheimer's. She is in a University health care loop, Neurology, Physician and ElderCare. There are no health issues yet with bathing, toilet etc. She has a "switch" where seemingly unrelated stress points will switch her from being very loving to all out rage where she says she hates me, wishes I was dead and wants me gone. I learned several years back to not respond to anything but remain calm. usually a smile and arms extended for a hug bring it to an end but as time goes on these dark periods last longer and pop up with no triggers.

I'm not sure where the threshold is that I cannot manage mentally or physically. I'm living with the "shell" the love of my life came in but it is empty. I miss adult conversation. Our adult kids are near and understand meaning they are not judgemental or full of "dad your should...." stuff.

so a daycare 3 days a week allows me to clean, laundry and keeping the house up I don't find this a load on me as we pretty well shared all household responsibilities before.

One day I get time with our son for coffee and a bagel.

Our home is single story with precautions taken, 16" toilets, grab bars, etc.

Because of our life style over decades, so far, my health is excellent. So I watch part of my life pass with no return or ability to share experiences. I suspect I'll know the threshold when I see it but I confess to looking forward to it with plenty of guilt. Once she is in a facility I'll have time to enjoy a bit of life. That is a movies, flying to see friends, a dinner out, going to athletic events with my son and grandson, taking my sailboat out, going on long motorcycle rides, the list of things gone for now is long.

Never big on therapy but I can see that in my future if my heart feels like I put her away for selfish reasons. On the other hand I can't help to feel like I am sacrificing a portion of my life in an endeavour that may not have much benefit for the person intended.

All our investment savings have been aimed at the possibility both of us could be drooling in rocking chairs and planned so those expenses are handled with out govt. assistance. That would be spending our kids inheritance and that is not a family issue. The kind of place she would be in is planned and careful.

Dio

Kenginnyd wrote:

Never big on therapy but I can see that in my future if my heart feels like I put her away for selfish reasons. On the other hand I can't help to feel like I am sacrificing a portion of my life in an endeavour that may not have much benefit for the person intended.

I am so feeling the same at the moment. My family and every one in my local support group are telling me it's time. Yet, there's a guilt gnawing at me whenever his lucidity returns even for just a brief moment. I am planning for his inevitable placement, but I can't shake off the guilt in spite of the rational. Also, without knowing how long his life will be, the concern of running out of both our retirement funds is very real. My physical therapist constantly reminds me that if I don't place him soon, I may not outlive him. Am I selfish in wanting to place him? Or do I trudge on until my mental and physical conditions are kaput?

Jgirl57

Those are the things I think about every single day.

As I have learned from others here, this is a mind boggling disease for

both caretaker and pwd. Glad you found this forum and others who 

have been on this path longer then me will have lots of help for you.

Beachfan

Kenginnyd wrote:

Because of our life style over decades, so far, my health is excellent. So I watch part of my life pass with no return or ability to share experiences. I suspect I'll know the threshold when I see it but I confess to looking forward to it with plenty of guilt. Once she is in a facility I'll have time to enjoy a bit of life. That is a movies, flying to see friends, a dinner out, going to athletic events with my son and grandson, taking my sailboat out, going on long motorcycle rides, the list of things gone for now is long.

For several years, I could feel an undercurrent of resentment building when I thought about all the things I was missing because of DH’s Alzheimer’s and my 24/7 caregiving duties.  I had done 2 years of intense research on MCF’s “just in case”, although it was my intent to care for DH at home. I decided to try a 30 day respite to see how DH might adjust and to give me a chance to see how the other half lived.  On the day we finalized the respite plans, my oldest son, in the parking lot outside the facility said, “Mom, when we drop Pop off on November 12, he needs to stay.  You need more than respite; he needs placement.”  DH no longer knew me, the kids, grandkids, where he was or what he was doing. That, and the kids’ support made the decision acceptable, if not easy.  

Selfish, maybe, but I will shoulder no guilt for getting some portion of my life back.  I can attend sporting events, concerts and plays for the grandkids.  I can go to our little beach house for weekends and summer stays; I can lunch with friends, exercise at the gym, sleep through the night and relax by the pool.  The list is endless.  If the situation were reversed, I would wish him “life”.  I wish you well; it’s a tough journey.  

Stuck in the middle

I think you have it well thought out.  You are giving up a portion of your life to give your wife a minimal benefit, if any.  If she does well at day care, she might actually be happier in memory care with a peer group than at home with just one person.

Have you considered five day per week day care, and/or hiring a housekeeper?  You need some time for yourself, and a weekly visit with your son isn't enough.

Whatever you decide to do, no guilt is warranted.  You didn't cause your wife's disease and you can't cure it.  None of this is your fault.

Sunnyside42

This disease is so cruel in the gut wrenching position it puts partners in.  My DH is 85. I am 80, and like you we are both strong and in good health because of our active lifestyle of hiking, skiing, biking etc.  It’s been only two years since he was diagnosed with Alzheimers, so it seems we are only embarking on this journey.  I belong to wonderful support group and my peers are in various stages, so I can see what lies ahead.  I see the struggles and guilt, but I also know that self care has to be first lest the caregiver go down with the ship. And I have seen this happen.  So, we need to acknowledge that we are doing and have done everything we can and there will be the day to make a decision to save ourselves so that we might continue to show up to visit our loved one, whether they know us or not.  Wishing you the best.

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saltom

DH is going on six weeks in out of home care.  He's finally settling in but would rather be home. I do see him nearly every day.  I know he is well cared for and safe.  Intellectually I, and my family and friends agree, it was the right decision to move him out of home.  Emotionally I still am a bit of a basket case and have moments of feeling selfish and guilty for my new freedom.  BUT, it was getting to a point where I was developing health issues which would have put a double burden on our daughter.  So, I do my best to tell the negative thoughts to get out of my life. Easier said than done. It's a developmental process for both DH and me that takes time. So, what ever your decision, trust your instincts.

SeaGal

I decided to place my husband in June of 2022 after taking care of him for about 5 years.  The tipping point for me was when he could do nothing for himself, couldn't be left alone, was becoming difficult to manage and was incontinent. He had me up 1-2 times a night every night. I was exhausted and totally stressed. I had health aides, but even with that help, I never really had the rest that I needed. We had moved to be closer to my daughter, and he had no idea that we had moved, so I knew he wouldn't know the difference if I placed him once he became acclimated to a new environment.  The guilt is incredible, but once you see that they are adjusted and content, that subsides a little.  He does know me and misses me, but I tell him I have to go to the store and I'll be back, which helps him with the separation.  I was told it is only a matter of time and placement will need to be considered, and the sooner the better. You don't want to have a crisis emerge and then not know where to turn. Since we have long term care insurance,  I researched a few places and forced myself to make the decision.  It was awful, but I knew it had to be done.  I visit him almost every day.  I miss him terribly, but I know I couldn't go on the way we were.  I missed the man I knew, even when he was home. I am trying to continue with my life, especially with the grandkids nearby, but Alzheimer's always looms over me.  It is a very tough journey, but two lives don't have to be totally destroyed.  

I would encourage you to read "My Two Elaines" by Martin Schreiber.  His wife had Alzheimer's for 20 years, and his observations and suggestions are wonderful.  Work with your local Alzheimer's association, too, they have fabulous resources.

Best of luck!

Paris20

Kenginnyd, I know how you feel. My husband and I were in a similar situation to yours regarding savings. I did my research on facilities within 25 miles so that I’d be “ready” when the time came to place my husband in the best place for him. However, the decision was taken away from me when DH had a stroke. He is permanently paralyzed on his right side. I cannot care for him at home anymore.

Of course, the AD is worsening. My husband doesn’t realize he has any problems at all, a gift for him. I came to realize quite a bit. As many here have said, I learned that I should have placed my husband sooner. I was neglecting my own health, mental and physical. I had no life. I felt guilty just thinking about the possibility of placement. Now I see that my husband cannot recall when I visit, if I visit, or how long I stay. At first I visited him every day and stayed for hours. I went home feeling awful. The rest of my day revolved around getting over the visit. Now I visit 3-4 times each week, staying for about an hour. DH is happy to see me and I am starting to feel human again. No more worries about abusive language, middle-of-the-night linen clean-ups, and being home bound. My husband is being well cared for and now so am I.

M1

Ken I'm late to the thread but also in a similar boat, in some ways.  Was forced to put my partner in memory care eleven months ago when she started not recognizing me and got aggressive.  I have some of my life back, but not much, frankly.  She has not adapted easily to the group setting (no surprise really given her former personality and interests), and while I am relieved of the day to day burdens, new ones have come with it, including sadness at the inabillity to spend time with her (she just begs to go home), and grief.  I get to spend a bit more time with my granddaughters, that is the biggest upside, but they are still quite young and not a lot of company yet.  I fantasize about a future life, too, but it still feels a long way off.  Hard to make new friends or start new undertakings.  Telling people your spouse is in memory care is a conversation-killer.

I hope you find your way and am glad your own health is holding.  None of these decisions is easy.  Mine is too, but I am fifteen years younger than my partner.  I knew this day might come when we fell in love thirty years ago.

Colt99

 To place or not place. As I search threads on this board this question comes up over and over through the years. I join Ken and many others in the current class facing this impossible question.  Familiar story – high school sweethearts, 52 years of marriage, first diagnosis in 2017, now well into stage 6.  DW is not the most difficult PWD to care for but does need assistance with all ADLs, plus the mood changes - it is exhausting.  DW is still well aware of place and people so a move won’t go unnoticed by her which  causes me the most anxiety of how she will adapt.

SeaGal mentioned the book “My Two Elaines” by Martin Schreiber. Good book. It brings up the concept of the pivot, “letting go of who a person once was and embracing who they are in the moment and who they will become.”  Intellectually I get it but am hung up emotionally.  I can’t imagine attending a family reunion across country while she is in a MC facility.

Dio

Victoria2020, thank you for the video link! It really helped to highlight a point we caregivers tend to forget: "Why are you more important than me?"

Beachfan

Colt99 wrote:

  Intellectually I get it but am hung up emotionally.  I can’t imagine attending a family reunion across country while she is in a MC facility.

My DH, late stage 6, is in a MCF since November, 2021.  My son and daughter-in-law called last evening to tell me they had purchased a plane ticket for me to fly from my home in PA to TX in late March for a 5 day stay with them and my two grandsons.  I am over the moon!  Prior to placement, I could barely get to the grocery store without dragging DH along (literally and figuratively), or making extensive plans to leave him behind.  I have some semblance of life back; he would want that for me.  Emotionally, I feel that I am now a better person in a better place.  Everyone reacts differently.  I repeat, I wish you well; it’s a tough journey.