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.

Joyful Heart · July 13

https://alzconnected.org/discussion/comment/247178#Comment_247178

Please, God, let me be grateful for the sound of my husband's voice today, for the lucid moments, for the love he constantly displays for me and anyone who will listen…. I'm dreading missing him in this way and I see it coming like a freight train. I cannot believe this is my life.

BPS · July 13

There are many things that I feel like I can't share with my adult kids too. That makes me feel like I am not being completely honest with them but I also feel like as a parent my responsibility is to protect them even though they are adults with their own kids. That makes me feel more distant from them, but telling them everything would do no good. This disease has made not only the relationship with my spouses hard it affects every relationship I have.

CMC62 · July 13

I agree completely, this is a very lonely road. I feel lucky to have an adult child nearby, but he is still in his 20's and in graduate school. I don't want him burdened with the full weight of what this disease is doing not just to his dad, but to me. I also have a step daughter nearby, and she is significantly older than our son. But she too has her own life. She stops over once a week to visit with her dad, and occasionally drives him to one of his activities that I have scheduled. But the day to day watching my husband slip away slowly is just me.

ruthierr1014 · July 13

Thank you for all these heartfelt discussions. I am new to this forum and new to caring for my DH with, we don’t know what yet. He was diagnosed with MCI the end of 2024. But this is progressing pretty aggressively. This pain of loneliness is so real. I feel like I’m grieving the death of my love, yet he’s still with me.

JulietteBee · July 14

https://alzconnected.org/discussion/comment/248003#Comment_248003

It is called "anticipatory grief" and it is very much real.💔

tonyac2 · July 14

I miss my DH too. Our granddaughter dropped her phone in the river while tubing this weekend. I told her she could have her G/Pa’s phone as a replacement as he doesn’t use it anymore. She came over with her dad (SIL) to pick it up and he reprogrammed it for her at our house. When he was done, he presented it to her and said, everything from G/Pa’s phone is erased and no one would ever know it was ever his. I thought sadly, that’s what I’m living with. Every day a piece of him is erased, wiped out and no one will remember it was ever him.

l7pla1w2 · July 14

https://alzconnected.org/discussion/comment/248042#Comment_248042

Ouch! I know the feeling. DW has been in MC for 3 months now. I look at the clothes in the closet, I look at her considerable collection of earrings, etc., and I think to myself, "She's never going to wear these again." It is sad.

Timmyd · July 14

https://alzconnected.org/discussion/comment/248068#Comment_248068

DW still lives at home, but having to see all the clothes and jewelry is difficult for me also. I try to keep it out of sight but that is hard with so much shared space in our house. I often wonder if it would be better if I only kept personal belongings that are of use now and will be of use in the future. Being absent all the constant reminders around the house of things that will never be used again might make it easier. I have gotten rid of a few things but there is such a long way to go.

CindyBum · July 14

I was just having coffee with my parents, who I moved out to live near me about two months ago. We were talking about the long drive to bring them to CA from Illinois and got to talking about the so-called "loneliest road in America", Route 50 through Nevada. I immediately thought, "Nope. The loneliest road is every one of us caregiving for our LOs with dementia."

RetiredTeacher · July 14

CindyBum, you are absolutely correct, caregiving a dementia spouse is the LONELIEST ROAD AND ONE THAT I CANT SEE THE END OF.

Cathy coconis · July 14

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

https://alzconnected.org/discussion/comment/247122#Comment_247122

https://alzconnected.org/discussion/comment/247131#Comment_247131

MARU:Where has my husband gone? Loss…

I posted the below…”I find myself asking…”in the caregiver section before realizing there was a caring for a spouse section. Then I found your post, and the many responses. I guess we are all feeling lonely, alone.

However, I did share this info and all that’s going on with my 32 year old daughter. At first it was hard for her to accept, not to mention that my husband behaves “better” in front of her. But now it seems that she is making an effort to spend more time with him, and takes him for me for a half day or so to give me a break. That’s not what we tell him of course. She just comes up with little things they can do. She is a daddy’s girl. This also gives her time to prepare for the future, which she knows from experience what it will look like. Maybe you should give your children some info. It may make you feel better.

Hugs

Cathy coconis Member Posts: 21

MemberJuly 13

Where has my husband gone? Loss…

I find myself asking that question often. He’s here physically, but he is not the man that he was when I married him. I feel so sad today. Yet it doesn’t bother him as much since he doesn’t even realize how much he’s changed.

he’s inside the grocery store while I’m waiting in the car because I just don’t have the patience to shop with him. He’s soo slow, wandering aimlessly, but really wants to still do some things. He’s safe because I’m watching the door where he comes out. I’ve taken over all else, it feels strange to remove him from most of his previous responsibilities, esp finances. He acts ok with it but sometimes just looks so lost. Sometimes we can joke about the situation but as our communication continues to break down, I have to just nod my head when I have no idea what he’s talking about. I just want to hear from other caregivers about this feeling of loss and sadness

jmiketully · July 14

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

I appreciate your putting this out there. Many of us are in a similar situation. My DW has recently become more withdrawn, less verbal. She has rediscovered books and is obsessive about them. It's good, really. She seems to find comfort with her books, although I'm certain that she does not "read" in the sense the rest of us understand reading. But it seems to give her comfort — although she is also much more withdrawn. This seems to be a new stage. I estimate she's in stage 4 or 5. It's difficult to witness the erosion of a loved one, is it not?

Goodlife2025 · July 15

My DW, age 49 and in stage 5, moving into stage 6. I cannot look at who she "used to be"; it is just so painful. Not just that she is withdrawn (so I am if being honest) but that erosion; occurring one day at a time is stealing her essence. We too try to find the humorous moments, and enjoy the simpler things of life. But you all know, some days are better/easier than others.

ilovemusic · July 15

I’ve heard it called “ambiguous grief” as we are grieving the loss of someone who is still living. 😢 It really hit me a few years back as like you said, no more real conversations and the shift from spouse to caregiver began. No one can really understand until they’re there.
Thank you all for being here ❤️

FredW · July 15

This is a lonely road. And this disease is horrible. That we all agree on.

I feel for all of who have taken on the primary caregiving role for a loved one. It takes strength and love.

Hugs to you all.

Biggles · July 16

https://alzconnected.org/discussion/comment/248042#Comment_248042

That is so sad, perhaps, as we often do, think to yourself the phone and all his information contacts friends and messages have done their job and served him well and now his granddaughter can continue her journey with the help of his phone. Hugs.

tonyac2 · July 16

https://alzconnected.org/discussion/comment/248207#Comment_248207

Thank you :)

Lonliness when caring for a spouse with ALZ/dementia

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