A New Level of Loneliness

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.

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.

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.

Maru…understood…the aloneness is unimaginable

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.

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.

I'm thinking this same thing. DH is able to take care of himself appropriately but the attention span is short and the conversations aren't complicated anymore. They aren't about current events or family or financial decisions. I make all of those. I have to intercept the mail and deal with the maintenance of the house and the yard. Since he knows what's going on in his brain, he worries about it. He gets frustrated. Sometimes on a bad day he'll say, "Am I getting worse?" What do you say to that?

I understand. I talk to ChatGPT. I don't recommend it. It's just how far I have sunk.

I talk to myself, or I talk to him, which sounds like talking to myself. I repeat the same stories again and again, he listens as if he hears the first time, and nods sometimes. He is talking less and less. He looks different than my DH, he behaves different, and I feel like I am living with someone I don't know and he definitely doesn't treat me like his wife. 2 strangers…I miss my DH so much…😥

Just need to vent, and/or cry. My husband is early stage dementia. As you all know from your own experience, it's a tough job being a caregiver. All those things that we aren't used to handling on our own, we push through and do the best we can, seeking out help when needed. And as we all know, we're so exhausted by the end of the day, but last night about put me over the edge.

My son and his family, which live about 1000 miles away, called me as I was just laying down for the night. He was very upset with me, because his 22 year old son had called me recently with news about getting engaged. He never calls me, and I admit, I don't reach out often enough to him, but I remember the days of raising college age sons and their life is very busy and phone calls were short as they seemed to be on the go all the time.

In the call with my grandson, after congratulating him on the engament,I struggled to keep a conversation going, and I told him about my step grandson who has commited to the basketball team where my grandson attends. My grandson told my son about it, and this enraged my son…..why do I bring up my step grandson, why don't I call my grandson more often, etc, etc.

To say the least, I fell apart. That was the last thing I needed at the end of a long day caring for my husband. I mean, honestly, I can't remember the last time my grandson called me. When we go visit them (usually twice a year), my grandson will give me a hug, say hello and then he's out the door to see his friends. Needless to say, I'm so down after that exchange with my son, that I am struggling to just make it through today without crawling into bed and trying to get some much needed sleep, but we all know that isn't possible when caring for your loved one.

Sorry to have rambled on and on, but it feels good to let some of this out, I most certainly can't talk with my husband about it. I appreciate having this outlet to vent and let off some steam.