Lonliness when caring for a spouse with ALZ/dementia

Maru · July 1

My DH is not quite in the middle stage of ALZ, and most days he is "normal", but he isn't really. His critical thinking has diminished in most everything except math. We used to have spirited discussions about matters of faith, politics and so on. Now, half the time he can't hold a discussion about a movie that we watching because he either didn't understand it or he can't remember what just happened. Even when he sounds as if he knows what he is talking about I'm not sure if he is making stuff up or not. Long story short…I'm living with this man, still a wonderful, kind, loving man but I feel like I am just a caretaker, not like someone who is in a very long comfortable relationship. I can't share this with our grown children. It would just make them feel bad and what can they do about it? I miss my husband, my life companion.

Lesley Nammar · July 1

I am in a similar situation. My DH makes up stories and indeed he thinks it’s true. I have been trying to to find him a companion for once a week visit. I haven’t had any luck finding a male. Besides he gets paranoid and suspicious about other people. Yes, our days of having our best friend and soul mate are gone, only memories. At least we have the memories. My DR neurologist told me I need to take better care of myself. Please let’s all take better care of ourselves so we don’t get sick and pass before our spouse.

trottingalong · July 1

https://alzconnected.org/discussion/73421/lonliness-when-caring-for-a-spouse-with-alz-dementia

I’m in the same boat as you. We can still laugh and he still has a quick wit, but I see even that slowly diminishing. It kind of creeps up on you and one day you realize the switch has been thrown from partner to caregiver. He has the tv on nonstop, but doesn’t know what he just watched. He cannot comprehend movies or tv shows, so he mostly watches history. But I see him watching the same thing over and over. I miss “him” and I miss having the life I used to have and wonder what I will be like and want once this is over.

CindyBum · July 1

This is definitely a lonely road. I miss my DW and what we had so dang much. Hugs.

Chris20cm · July 1

I know exactly what you mean. A friend has brought this up and we have talked about it a lot. The only thing more painful than watching a wife of 61 years fade away mentally, is the loneliness for the caregiver who experiences such terrible emotion of it all, with no apparent light at the end of the tunnel.

Stan2 · July 1

I find myself in a similar situation. DW seems to live in the moment. Our conversations these days are only about whether or not she is ready to eat. She does take care of her personal needs but has lost the ability to plan for anything, even just later in the day. The only thing she seems to care about is her plants and running the dishwasher. She is very good about those two things.

I attend an in person caregivers group and I count myself fortunate that she is not combative , argumentative or difficult to care for but the loneliness is about to get the best of me.

We have one adult child who lives nearby and visits almost daily but for only a few minutes at a time.

I have decided that nobody can truly understand this situation unless they have lived it. I just hope we can all come out the other side with our sanity.

Timmyd · July 1

https://alzconnected.org/discussion/73421/lonliness-when-caring-for-a-spouse-with-alz-dementia

In the early phases I was not eager to share information with friends and family. Eventually that became exhausting. The situation is now clearly obvious to anyone who interacts with DW. Being able to express and share our truth is now therapeutic. It has been strange the truth feels most comforting often when the situation is the worst. It feels empowering when I tell our situation to someone new and I do it with clear language, without a hint of shame, and my chin held high.

Cardenas1816 · July 1

I am so sorry you are going through this. I’m in the same boat with my DH who was diagnosed at a very young age g age with EOAD. The toughest part for me has been slowly losing my best friend. We had such fun together even just sitting at home talking.

I find that watching shows that he grew up with (Magnum PI and Cheers) make him happy. And he knows enough about them still that we are able to discuss the episodes after we watch them. I also find that smells bring him back to me temporarily. If I. Ale his favorite cookies he lights up and tells me about how much he loves having them. Or if I wash our bedspread in lavender scented wash he feels very calmed.

There is no winning in this battle. The best we can do is ease their way along and try not to lose ourselves. In the process.

annie51 · July 2

The loneliness is real. Flashes of our former loved one are so precious especially in the later stages. When DH does something to make me laugh the way he used to, I relish it. Those moments are more infrequent now. No more planning trips together, no more discussions about current events, no more real conversations. It is something very hard to understand for those who haven’t been through it.

Biggles · July 2

Welcome to this lonely journey. My DH has VD and Aphasia it used to be spirited conversations about politics, life, yachts, navigation, business (he was an architectural draftsman and our own business) he is sweet and still the love of my life but I have to keep reminding myself and looking into his eyes to find it. I use music, dancing (shuffling) to music in the kitchen, romantic soft songs during the morning shave and talking to anyone I can find, the tradesmen, the gardeners, the grocery delivery people and our puppy who is totally forgiving and oh so happy. Good luck I so understand this predicament and feel for you.

CindiEC · July 2

My husband went through this stage. Now he doesn’t speak at all. I miss the sound of his voice. I hate this disease.

Maru · July 2

https://alzconnected.org/discussion/comment/247156#Comment_247156

i hadn't made the connection, but i am now talking to anyone and everyone, just to have a conversation, however brief. DH and I do talk, but I am always guarding what I say and how I say it to protect him from anxiety. I don't want to make him question himself any more than he may still be doing. My heart aches for you.

Maru · July 2

I think it would be comforting to my DH to watch some of the old films or programs. Thanks for the idea. Maybe I can get away with listening to a book via ear buds. He wants us to watch TV together and I don't know that I can bear watching some of that stuff.

Chammer · July 2

@Maru I sometimes use ear buds to sit w DH while he is watching TV so I can either watch something else on my phone or iPad or listen to podcast or audio book. He does get irritated when he realizes I'm not invested in what he is watching. I let him know I am sitting w him and that counts.

Lonliness when caring for a spouse with ALZ/dementia

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