A New Level of Loneliness

Maru · March 23

I see that I had a post last year about the loneliness of living with a spouse with AL. Of course, the disease has progressed. I'm guessing that he is more stage 4 than 3. Really, who can tell for sure.

We have a daughter who is not currently speaking to us as she works through some things. Exactly what things, she did not say. I was used to talking to her 3-4 times a week so this is very painful for me. I had told DH about several weeks ago and we have talked about it a couple of times, but yesterday when he asked how things were with X, I reminded him that she wasn't speaking to us. He had no memory of this and when I told him, there were no feelings other than surprise…no pain, no empathy/sympathy for my pain, nothing. That was when it really hit me: I am alone. For almost 67 years, we could talk about everything.

It is staggering, yes, shocking how fast things can change. For the past 2-3 months DH ha been perfectly "normal" other than forgetting words and confabulating about the past. All of sudden he can't remember a major rift in our close family, can't remember who the Vice President is, can't remember where important documents are.

Sorry for the long post. I've lost me closest friend and don't have anyone else to share this pain with.

jgreen · March 23

So very sorry, @Maru

Yes, this disease is so very heartbreaking. And it seems that other ‘events’ become more exaggerated when we are already exhausted and emotional. I hope things smooth out for you, even if just a wee bit.

Hugs 💝

trottingalong · March 23

My husband is in a similar place. His short term memory is shot. I think before I say anything these days. I never know how his response will be. He can still laugh and his wit is quick, it just doesn’t appear as often. He used to enjoy a good joke or a funny video, but now can’t follow anything. He barely leaves the couch, rarely gets fully dressed (stays in his robe) and watches YouTube. At least there he watches people building things or digging for treasures. But more and more he cannot figure out how to use the remotes. I miss the conversations. Today is his 82nd birthday. I’m 69. I’m making him his special cake he always loved, but he doesn’t remember he did. I’m sorry for all of us and thank goodness for this space.

tsulzy1 · March 23

My husband was diagnosed in 2021. He was 65. Prolly at mid stage 5 most days. We have a situation with our kid too, not talking to us, estranged. Its very hurtful on top of all else. Husband doesn't recall what is going on. Sad he is not even asking about the kid anymore. Very much heartbroken as well. Its a very lonely disease for sure.

Chance Rider · March 23

My husband, diagnosed last August and currently late 4 early 5, also has an estranged daughter. She quit talking with us about 26 years ago and has had no contact at her father. He never mentions her any more but I know he was hurt by her actions. Luckily his son is very much in the picture. My husband may soon forget who his daughter is.

Today I’m missing the person I could talk over financial matters with as well as discuss home improvements I’m having done to make our home safer for my husband. It’s tax prep day too.

I’m sorry for each of us going through this, but grateful for you all.

Groovy's Girl · March 24

I'm with you, @Maru. It's a very lonely time. My DH has an adult son who never stayed in touch with us. So not hearing from him is nothing new. Friends ask me all the time if his son "knows" about his dad's condition, but that would mean that he cared enough to ask so…no. The best I can offer is to keep making contact with those of us who can relate to your feelings. I forced myself to go to a support group and now I wish they had it more often. Talking to friends is okay, but I don't share all my feelings with them because they don't get it. "One day at a time" is very, very hard. Hope you find some peace today.

Maru · March 25

https://alzconnected.org/discussion/comment/268689#Comment_268689

ty, Groovy. You are right, friends can be sympathetic, but only a caretaker spouse can understand the depth of loneliness.

Ed's mom · April 10

This is my first time here and every post makes me cry because I have found people that understand my daily life. I thought I was the only one alone in a relationship. Thank you.

blacksparky · April 10

https://alzconnected.org/discussion/comment/270026#Comment_270026

So sorry that you have to be here but stay with all of us as we together suppprt each other during this horrible journey. ❤️

jfkoc · April 10

Maru…understood…the aloneness is unimaginable

Andi C · April 10

It is a lonely time, I miss the man I used to know. He's in the earlier stages, some days are good, others not so good. I wake up each morning waiting to find out how he's going to be that day. We had only started traveling, doing and seeing things we always wanted to see.

Sorry to sound so down, but nice to know I'm speaking to people who have "been there" and understand.

Sitemsek · April 10

I completely understand how you are feeling. More and more I find myself about to start telling my wife something and stopping myself because it will take too much effort and patience to answer all the questions she will come back with because she understood almost nothing of what I told her.

Peace be with you.

Barbie300 · 1:03AM

I’m in the same situation. It is very hard when everything is left to me to do, especially things I’ve never done before like tax preparation but I’ve found that it isn’t hard to learn. I also don’t get any support. In fact my daughter likes to call or come over and spend the whole time complaining about all her problems with no regard for our situation. I don’t know how much of this I should allow since she constantly dumps all her problems on us and expects us to bale her out. My DH is at the stage that he barely comprehends and never makes a comment on what is being discussed.

Jeff H · 1:39AM

https://alzconnected.org/discussion/comment/270037#Comment_270037

I feel for you, I really do. I too am in the same situation. I miss the wife I married. Really bad. I weep up at times just thinking about what could have been. "I wake up each morning waiting to find out how he's going to be that day." Yes, that's me also. some days are good, others are not so good. "We had only started traveling, doing and seeing things we always wanted to see." Yes, again, same here. I feel robbed of our retirement years. It's a cruel disease for both the patient and the caregiver. The caregiver carries the brunt of the problems. This is a great support group. Keep posting.

Andi C · 1:56AM

https://alzconnected.org/discussion/comment/270062#Comment_270062

Oh wow, I can really commiserate with you about your daughter. My husband's daughter from his first marriage just turned 42, has been incarcerated off and on for the past several years, believes her "Daddy" as she calls him, owes her everything. She has stolen from him by stealing his credit card twice and as far as I am concerned, she is nothing but toxic. When and if she wants to visit him, it will be while I am sitting right next to my husband in case I need to intervene in the conversation, the time she may stay will be very limited and if she asks for one penny I will escort her out. Taking care of my husband takes all my time and energy and I refuse to waste what little energy I have left each day on her.

A New Level of Loneliness

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