Changing role as spouse with husband in full-time care

Deborah CA · August 16

I am wrestling with how to be a spouse when my husband is in full-time care. He still recognizes me, though I know that one day he won't.

I feel like I am in an odd space between married and widowed. After caring for him 24/7, I have time now for exercise class, impromptu dinner with friends, shopping without rushing, and reading. In that way, I have an independent life.

I also spend time most days with my husband at his care home. We still hold hands, hug, and kiss most visits. But it's not the same as being together most of the time and sleeping in the same bed.

I'm confused. Of course, I am very sad and missing him.

What is your experience with this new role in marriage?

annie51 · August 17

Yes I understand that “odd space” as you call it. It’s a strange feeling, especially that first time you come home by yourself. Although while my DH was home, I felt less and less like his wife and more like his nurse, we still slept in the same bed and had little moments during the day of hugs, kisses, etc. I can’t give you any sage advice, other than to say it is just one more stage of the disease to get through. I tried my best to enjoy the bit of freedom I now had in the morning, then spent the afternoon with him at MC and tried to always make him feel loved like I did when he was home. Even though his time there was short (only 2-1/2 months before having a heart attack and passing), I did get more used to the new role after a while. For me the answer was to have a regular visit schedule and to use the free time to do things I enjoyed, keeping as busy as possible to keep my mind off the situation.
Sending hugs as you navigate through this.

sandwichone123 · August 17

It turns out to be more like life before Alzheimer's, when you would do things together (visiting and moving at his speed/understanding), and things apart like your own hobbies, household jobs that you had before Alz, meeting friends. It's just that now you're also doing the household jobs that had been his, and you're in that odd space.

A few weeks before my dh passed, a friend offered to introduce me to a (male) friend. That couldn't have been farther from my mind, and I was not interested. Several weeks after he passed, after over 3 years in MC, I found that meeting a male friend sounded suddenly attractive.

blacksparky · August 17

I am also as you describe in that odd place. My DW has been in MC for about 7 weeks now. I’m getting to do things now that I couldn’t do the past couple of years. It’s strange being on my own. My days go pretty good as I try to stay busy but the nights are where it hits me the hardest. Although the husband/wife relationship was over probably a year or so ago, I still loved the feeling of holding my DW in my arms each night as we got into bed. I miss that human contact. There isn’t anything describing caregiver stages but I’m thinking I would be in the later stages.

BPS · August 17

I am also in that odd space. When I need to fill out paperwork at a doctor or bank and it comes to the question of being married, single, or separated it hits me that I am really none of the above as related to the reason for the question. I am married but don't want to check that box because then I have to fill out all her information as if we live in the same house and share our lives. I am not single and we are separated but not legally. Like so many things with this disease nothing seems to fit.

Deborah CA · August 22

https://alzconnected.org/discussion/comment/280139#Comment_280139

Thank you. It's encouraging to know that it can get better over time.

Deborah CA · August 22

I hadn't even thought about forms and questions about being married. Another thing I am not prepared for. I appreciate that you mentioned this. I can think about how I will answer the question depending on the situation.

Deborah CA · August 22

The hard days for me are when I visit and he says he is ready to go whenever I am. His face and body language when I say he is not going with me breaks my heart.

I wish I knew how to leave visits without causing this sadness that both of us experience.

MsLadybug · August 22

My situation is different from yours - my DH has moderate dementia, and he is still home with me as his caregiver. He has progressed slowly, so I'm hoping he won't need MC for at least another year, who knows. But my role as spouse is definitely changing. The caregiving is at times frustrating, I can honestly say I get resentful sometimes. But then I tell myself I 100% signed up for this when we married, and for all the years of love he has given to me, I want to give him good care, and I want to enjoy as much quality time with him as possible before he no longer can. If I do that, I'm being a good wife. For his sake, I pretend that things are the same, and we carry on as we always have with our old routines of companionship, even though his abilities have diminished. But I know I'm putting on an act for him: I'm now his caregiver, not spouse, because where he used to be my 100% partner, he can't do much now except his basic ADLs. The honesty between us was always rock solid, but I have now started keeping things to myself or telling "little lies" to cope with his deficits. I don't consult him as much about decisions or life events. He has persecutory delusions, and he recently accused me of destroying some letters from his childhood (I didn't). So the husband I married is not the same, so I am also a different wife. Still a loving wife, but no longer in a functional marriage. It's hard, feeling little bits of loss a little bit at a time. One thing I am trying to remember, is that he always supported me in pursuing my own activities outside of our marriage. So I am telling myself that I deserve to have a life of my own, as I navigate this transition. When I get the opportunity to go out with friends, or spend my own time alone at home when he is daytime sleeping, I am allowing myself to let go of guilt and enjoy making my own life the way I want without him participating.

annie51 · August 22

https://alzconnected.org/discussion/comment/280565#Comment_280565

That is definitely a heartbreaker. I visited DH every day for 4 hours or so between lunch and dinner. I got in the habit of secretly leaving when they were sitting him down to dinner. Once I was out of his site he focused on eating and was fine the rest of the evening. A couple of times when they had trouble redirecting him to the dinner table, I said “I have to go to a doctor’s appointment. I’ll be back”. He forgot about my leaving right after that. I don’t know if something like that would work for you.

Dio · August 22

I grieved as if he was gone. At the time, I thought all was lost. After placing my DH in memory care, I had to learn to live by myself again, as if I am a widow, yet not a widow. Then he improved with the right combination of meds. So now I bounce back-n-forth between guilt and acceptance, ruminating over useless what-if's, dreading when the roller coaster dives again, hoping I won't die before he does. Sorry, I'm no help here.

tboard · August 23

https://alzconnected.org/discussion/76861/changing-role-as-spouse-with-husband-in-full-time-care

I am in the same stage. I cared for him at home and had to move him to memory care a few months ago. I visit him every day and spend a few hours with him. I like to think of it as mourning in a room for one. I miss him so but he is alive and no one understands what this is like. After a few years of not being able to leave the house without him or without finding someone to stay with him it took me awhile to get used to the idea that I can do as a please. I even went camping by myself because I can. I have never lived alone and am still learning the ropes. I am used to having to deal with all household issues as he hasn't been able to for a few years. I feel as though our friends and family are keeping their distance. I feel very much alone. I am trying to re-imagine retirement alone and after I spend much of the money we saved up on his care. Just know you are not alone.

Milo4455 · August 23

In this 'stage' myself and wish I had some encouraging words of wisdom to offer at making the transition 'easier'. It's been 7 months for us and nothing is 'easy'. Since you like reading, I just finished the book by Pauline Boss, Loving Someone Who Has Dementia. I found it a good read for this 'stage'. She writes: Accepting the idea of a less than perfect relationship is not equivalent to giving up. This type of acceptance is an active decision to recognize the reality of a relationship compromised by dementia. You eventually come to an awareness of things as they really are, imperfect and less than ideal, but the emphasis shifts to self-control, and with that, you retain the dignity of free will. It's not about giving up. It's about staying strong and in charge. Valuing a less than perfect relationship is your choice. To make this shift, stop fighting the ambiguity and acknowledge what you still have…

White Crane · August 23

I'm glad you started this thread, Deborah. My DH has been in MC for a little over 2 1/2 years and it has taken some time to get used to. The day he went to MC ( straight from the hospital ), was probably the worst day of my life. The grief was crushing and I cried for hours. Over time, I don't cry as much but the sadness is always just beneath the surface. I feel like I am living two lives; maybe that odd place you talked about. I am still married and yet I feel like a widow except my husband is still alive. It is indeed an odd place. Of course, life is easier now that I am not a hands on caregiver. I cared for my DH for about eight years at home but he exhibited symptoms for about seven years before that so my life has not been normal in a very long time. It has taken time to get used to the fact that I can come and go as I please…there is no one waiting at home for me. So I go about my life here without him and I also go about my life visiting him at MC. He still knows me but he doesn't know anything about my life when I'm not visiting him. It's sad.

tucson anne · August 26

I too am glad you started this thread. I placed my husband last week and it's been up and down. The day of placement went well and the caregivers said he was doing well. Since the first day, there have been very sad, confused days and less sad, confused days. I'm visiting around lunchtime, staying about 2 hours and tossing a ball back and forth or reading to him. I'm trying to judge the best time to visit—I worry that afternoons when he is of course more confused would be less good than lunch. I find that I can compartmentalize my thoughts before and after visiting, trying very hard not to think about him being sad, and regaining control of my life. So many projects I need to do around the house—they would keep me occupied for the next year. But I'm now tring to exercise again (none in the last year) and figure out what I will do with my time. And I try not to think about missing him, but inevitably something triggers a memory and I cry, for a bit— both for me and for him, and the life he is not living.

Changing role as spouse with husband in full-time care

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