Looking for hope

2 Young

 But not the kind you might think. When I first started reading posts on this forum I would do searches to try to find anything that would indicate that DH, early stage 7, was nearing the end of his journey. Unlike many on this forum I look forward to the day when I am alone / have my freedom. It might sound unkind and I’m sure there will be moments of great sadness but the day DH gets placed I will feel a huge sense of freedom. I’m ready to get on with my life. At 59, after 40 years of marriage (34 if you subtract the amount of time there hasn’t been an actual spousal relationship) I cannot see sacrificing whatever good years I have left. 

I’ve been his full time caregiver for six years. He recognizes me, in fact obsesses over me, though sometimes calls me the wrong name, as well as calling many other people by my name. He’s a dear man, you couldn’t ask for anyone sweeter. I feel nothing for him but compassion and pity. Any feelings of romantic love are long gone. 

I often feel resentment that I have to be here. Then I think about the thirty some years that he did everything he could to try to make my life good. I feel I owe it to him to do that for him now. But for how long? When I read the sub stages of 7 and how long each one can potentially last I am filled with despair. My understanding though is that younger onset takes a shorter course. 

Joe C.

2 Young, I totally understand your feelings! My DW is mid stage 6 and although I am committed to giving her the best life I can for as long as I can, I also look forward to the day I am not a full time caregiver. At 67 and in good health, I want to resume an active lifestyle, travel, meet new friends and possibly find a new relationship. 

I had 32 great years with DW and would do it all over again even if I knew the ultimate outcome. Like you the last 4 years have been a completely different story, I still love DW but today it is the love of a parent for a child not that of a husband for a wife. I don’t think your thoughts and feeling are unkind at all, I think most if not all of us have hopes & dreams for a more “normal” lifestyle.

2 Young

I sometimes feel like a monster for wishing for that, including thoughts of another relationship. I feel better knowing that I’m not the only one who feels this way. My son often asks me, when discussing when to place DH, “Mom, what do you think Dad would do if the situation were reversed?” I’m not sure. Unfortunately we never discussed such matters before he got sick. But I do know that I would not want him to suffer through caring for me the way I am caring for him. And I’m pretty sure he wouldn’t want me to either.

French

You are not alone. 

Not in a good mood as we begin our 3rd lockdown, so I won’t write long.  

I totally understand you and I am sure I won’t be able to do give care 6 years as you already have done. 3 years and I am already filled with despair. As you, I think he doesn’t deserve that I let him. He was a very good man. He still is, even if he is no more the man I loved. 

2 Young

I’m sorry you’re in another lockdown, French. That’s rough. Getting out and about is one of the few things that saves my sanity. Hopefully it will be short lived. Never thought I could or would have to do it for six years. Probably won’t last another year as caregiver.

Ed1937

2 Young wrote:

I sometimes feel like a monster for wishing for that, including thoughts of another relationship

It is only human to crave a meaningful relationship, and you can find several threads on this site where others have brought this up in one way or another.

Jeff86

I am frequently impressed by the bravery of posters on this site.

Of course, being a caregiver is, itself, an act of bravery, given how devastating this disease is.  But it’s also an act of bravery to face, and articulate, uncomfortable or politically incorrect feelings and points of view.

I’m fully sympathetic to your perspective, 2 Young.  Six years is a long stretch of caregiving, and of course the end is not in sight.  Notwithstanding the many good years you may have had with your DH, this disease hit you both at a young age when you might have thought there would be a lot more good times ahead.  

I’m about where Joe is.  My DW is late stage six.  She was a wonderful person whom I miss terribly, but she is no longer who she was, and she is my DW de jure but not de facto.  I am committed to giving her the best quality of life possible (I know she would do that for me if the situation were reversed) but that’s a very qualified statement.  She is almost always loving and sweet (though not so easy when anxiety kicks up) but she is tremendously dependent and our relationship is now filial rather than spousal.

As for the future, I feel conflicted.  We are more than four years into this journey.  I’m 63 and I’d like to think that this isn’t my last rodeo, that there is the possibility of life after AD for me.  I dread the thought of my DW suffering through the ravages of stage seven—and watching that occur.  But, truthfully, it also makes me squeamish to think about (or hope for) a more rapid progression.

Thank you 2 Young for raising a challenging issue.

Potsie

Dear 2 Young,

I feel so much of what you are feeling. I feel like I can't share those things with anyone. My kids would not accept it. DH's family wouldn't get it or accept it. I feel so alone most of the time with all the thoughts and feelings that surface. My best friend is unable to communicate because of his dementia. How do we keep going day in and day out? I miss the conversation, the romance and everything else that we shared. I feel absolutely stuck. DH is in a MC facility because he is too heavy for me to lift or even turn. I visit him everyday and love him very much. It doesn't make it any easier.  It seems like it will never end. I am sorry for you and for everyone.

M1

I too share these feelings and think it's perfectly understandable that we all wish for an end to the suffering on all sides, both for our loved ones and ourselves. With our age difference (I'm 15 years younger) and the fact that we've faced a lymphoma diagnosis since 2012, my partner and I actually had a lot of conversations about the future in her pre-dementia days. I know she has always encouraged me to plan ahead and has expressed the hope that I might have another relationship in the future-again, we both proceed on the assumption that I will outlive her.  I still find another relationship kind of hard to conceptualize, but I do try to imagine what a post-caregiving life might look like for me, and I do hope that she doesn't suffer a terrible and prolonged decline.

Stuck in the middle

2 Young, it is completely understandable that you want an intimate relationship.  If you were a person who didn't value intimacy, you wouldn't have married and wouldn't be in the situation in which you find yourself.  

I don't necessarily mean sex when I say "intimacy" BTW.  

My own wife has late onset AD and is declining very slowly, and I'm as old as she is (74), so I don't give a lot of thought to what comes next after caregiving.  If I were your age, and in your situation, I am sure that I would.

2 Young

Potsie, I just don’t get how it doesn’t make it any easier to have the care burden lifted. I’ve read that from other posters too. I mean no disrespect. Maybe it depends on the situation but I’m pretty sure it’s going to be easier at least in that since once I have placed him.

2 Young

Such great perspectives from everyone. Thank you. I believe I will search for more threads on the subject. And just in case I don’t find what I’m looking for I’ll mention some more thoughts here. If our relationship isn’t spousal anymore would it be infidelity to start another relationship? I know I’m the only one that can truly answer that for myself but any thoughts are welcome. Thinking ahead to when I have placed him, I’m concerned that my new found freedom might encourage me to start something.

French

Another relationship ? Why not... 

But for more than one year now, this virus has locked us at home with very little opportunity to meet someone. This helps me to think I don’t really loose time. 

I would be free I wouldn’t be able to go to pub, restaurant, concert, holidays ... everything is closed. Even at my work , no coffee break, no meeting, no conference... but at home for zoom meeting ! 

And now we are not allowed to go farther than 10 km. 

Difficult to date in such conditions !!!!!

Crushed

I'm 70 and have been on this road almost 11 years.   It has been three years since DW had the slightest idea who I was.  Do I feel "entitled" to form relationships?   Sure . My marital parner is gone. She has left. I make sure she gets the best possible care but I do not "stuff" the marital relationship and put in the living room like Roy Rodgers and Trigger.  

That being said; I was married to Wonder Woman in 1975.  DW was a genius in her field  who was a warm, loving, funny, thoughtful, companion and mother.   She is also as lovely as ever. 

Ok so she could not cook a lick, was an introvert, had no fun at parties and relied on my meager housekeeping skills.   She could sweat pipe better than I could and built computers from the ground up.  But she loved me with an intensity that I cannot forget.

I have found a handful of extremely intelligent women (my age) who make pleasant intelligent conversation and now with vaccination we can do outdoor dinners. but "I have been to the mountaintop" and I know what a treasure I had and I have not seen anything close.

CStrope

I feel so many of these same things.  I'm 58, DH is 66.  The past several years, pre diagnosis, have been hell in our household.  Now I know why, but that doesn't make it any easier.  He has been such a jerk to me, and it is hard to not have hard feelings because of it.  We have been married almost 35 years, and I wonder if this is it for me.  Will my caretaking duties go on so long that I'll be to old to have another chance at a relationship?  Will I have any friends left to do things with once this horrible journey is complete.  COVID forced me to have to work from home, and now with DH diagnosis, I will work from home permanently.  So I've also lost my work associations and any chance of meeting people through my job.  In some ways I've lost my desire and/or ability to be social in any way. This isn't me, so who will I be when it's over?

banpaeng

I to will be glad when this is over.  I have been married for 48 years and remember full well when that relationship was over.  It was Dec. 11, 2020.  Not real sure why that day but wife was lights on, nobody home.

I am not sure I can take another relationship when this ends.  I used to think maybe I could, but not sure now.  I like all of you guys and gals, have had to sit and watch this C__P take my wife.  We are busting down the door to Stage 6, that means the best is yet to come.  LOL.  But back on point, I do not want to do this again.  I can't do this again.  That means no more relationships.  I am physically and emotionally a wreck.  I DO not like the way I feel.

John_inFlorida

At least you can express your feelings in a place that isn't judgmental.

Tucsonbirder

Hello! This is my first post/response but I  have been reading these messages for a long time.  I am 70 and my DH is 84, in moderate stage of Alzheimers.  He was diagnosed 6 years ago, but showed symptoms for at least 3 years before that.  He's been at home, with increasing hours of home health aides.  This would have been manageable, except I had become increasing resentful of how much of my life was eroding away, even with the help.  I felt I was too young and healthy to give up what might be my last good decade for travel, adventure, etc.  Our marriage had many problems, and as Alzheimer's set in, like many of you, it just became a caregiving one, not a partnership in any way.  He often told me to place him when I had had enough and he would go.  He wanted me to live my life, not give it up to take care of him.  I just placed him in assisted living/memory care on April 1.   It is going reasonably well, though he was angry and very upset the first few days.  He likes it there, though he still asks when he is coming home.  I was moved to respond to your post because I am definitely open to new relationships.  I do not want to wait until he is gone, for who knows how long that will be, and I believe I have given at least 10 years to his care, and need to know that there is more to my life than that.  I'm not actively seeking it out, but would definitely be open to it.  Meanwhile, I am committed to helping him adjust to his new "home", I visit and spend time with him, which is now more enjoyable since I do not do the caregiving.  I feel guilt at times, but I also know that it is better for him to be where people are pleasant and attentive to him, not at home where I was just resenting him.  I realize this all sounds a bit cold and harsh, and I am grappling with the "selfishness" of it, but I am also trying to accept that I took very good care of him for a long time, and am still doing that, although in a different way.

Rescue mom

About other relationships.....I’ve known several people whose spouse was in a facility, bed bound, totally unaware of themselves, others or the world around them. Almost vegetative. The healthy spouses—who made sure the LO was well-cared for—openly had “relationships” with others. Everybody knew what has happening, and not a single critical word was ever heard by me. Instead, others were happy the LO could have a life, under the circumstances. I don’t consider it infidelity because the “person” with dementia is gone. There may be a body, but the “person” we loved is not there. I don’t think I would do it myself, though, just because I’m too afraid it might happen again, and my life would be gone a second time, subsumed in caregiving duty. But if it works for others, good for them.

lsh42

I have been taking care of my DH now for almost 12 years. Of  course the beginning was much easier than it is now. He is 73 and I am 62 still working over 40 hours a week (out of the home).

We were married in June of 2009. Signs began 6 months after we married. I was a caregiver for my first husband at age 26 until he died in 2007. He was shot and paralyzed in the line of duty.

Met my present husband and now I am a caregiver again. Like many of you I no longer love him as my husband. He is in late stage 6. Incontinent with urine and bowel. I have to feed him now starting about 2 weeks ago. He has no idea who I am. He has not known me for about 2 years. 

Every night I pray he goes to sleep and does not wake up. I told one of my co-workers and the face she gave me was angry. Outsiders do not understand.  I am very tired and never want to be a caregiver again. I miss companionship. I miss my friends. I miss someone actually loving me.

Will I date again? Yes. Will I marry again? NO! Unless he lives somewhere else and sends me money. LOL

I have been grieving for years now.

I just want this to be over.

Tucsonbirder

Hello. This is my first post/response but I've been reading this board for several years. I can relate totally to what 2 Young and others are saying.  I am 70 and my DH is 84, with moderate Alzheimer's.  He was diagnosed about 6 yrs ago, with symptoms apparent to me several years before that.  Up until April 1, he was at home, with in-home aides, eventually nearly full time.  He was/is still pretty high functioning and I kept delaying a decision about placing him because I thought he wasn't "ready".  But the last two years have worn me out.  Not so much because care demands were so high, because with help, it was honestly pretty manageable.  But my life was getting so contracted, so restricted, so uninteresting that I was disappearing into the same hole, and I just couldn't let that happen to myself.  As everyone has said, there was no real relationship anymore, and you crave a mutuality in a relationship, the companionship of a functioning person.  Our marriage was OK, but had many problems through the years. I eventually lost romantic feelings for him, but felt the obligation to care for him.  When COVID hit, I again deferred placement because he'd be in quarantine with no visitors and I couldn't do that.  But now we're fully vaccinated and restrictions are relaxed, I found a fabulous place and didn't want to lose it, so I placed him.  During all the years leading to this, he often said that once I had enough of taking care him, to find a good place and he would go.  He said he didn't want me sacrificing my relative youth and good health and I should live my life.  I know it was the right decision for me, but it's very hard on him.  I am very open to another relationship--for companionship and intimacy.  It doesn't feel like disloyalty.  I have provided him nearly a decade of care at home, and I'm still caring for him, but in a different way.  It is very hard, and sad, but I feel hope for my future.  I hope there is inner peace for us all in whatever we decide to do.  There is no one answer and we all must find out own way.  I really do like the support that is available here.  I know I need it now!

2 Young

Hello Tucsonbirder, welcome to the forum. It’s great that you are feeling hope for your future. I am still rather conflicted about placing DH but it’s helpful to hear your story.

Tucsonbirder

2 Young, thank you for your welcome and response.  It's not to say I don't feel conflicted, but I am working hard to remind myself how desperate I was feeling when he was home.  I don't feel that anymore.  Yes, it is very hard to see and hear his distress at times for placement, but other times, he is relaxed and happy there.  I believe that will continue to get better--not a straight line, but the general direction will improve, and I know that I made the right decision for me/us.   It's hard.  I totally understand your conflict.

eaglemom

What a brutally open and honest thread. Thank you everyone for your contribution's. 

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