Feeling alienated

Care4Hubs · July 12

My husband was diagnosed with early Alzheimer’s in 2023. My guess he is in the moderate stage now.

We moved to another state in 2022. I thought it would be a good move for him, as there would be groups he could join and be active. We also wanted to be closer to our grandchildren. We have not seen the grandkids as often as I have hoped; and my husband did not get involved with anything in the community. He did play golf for about a year with a group of neighbors. They knew I could use a break. It was helpful. Then the guy who organized the outings, stopped asking him to play (no explanation given, other than “it was not on purpose.”) There was only one foursome playing, and I think the guy just started askng someone else to play. Then when one guy would ask my husband to play, he always had an excuse “My ankle hurts.” “My back hurts.” So I told the guy to stop asking.

My husband has no friends. In fact, at our other home, he didn’t have friends that he kept in touch with. So, nothing is different now, except that the Alzheimer’s has made it harder for us to have mutual friends — or for him to be in the company of other men so I can have a life.

I made friends with some ladies. I always looked forward to getting together with everyone. It was the life I always wanted. There were about 5 couples in the group. We would have dinner out and one couple organized a game night. My husband cannot play games — cards or otherwise— because he gets too frustrated and angry. I would help my husband to make it easier on him. But, there were times when my husband yelled because of his frustration. Everything changed about 4 months ago. Now couples get together without us (and without me).

We used to go on trips with the group, but I can no longer travel with my husband (other than to see family) because he gets so confused. So the community trips with the other couples are out. The last time we went on a trip with the people I used to call my friends, I went shopping with the ladies and my husband stayed with their husbands, playing cards at a coffee shop. My husband got frustrated (angry) because he couldn’t play (he gets confused). He called me and said he wasn’t doing well. We talked about it and I told him my fear was that I will be alienated because he gets so frustrated that I will not be included in the get-togethers with the other couples. I was right.

While I have a few ladies I golf with a few times a week, I don’t do anything socially with them outside of golf. They have their own couples group. The other times — evenings and weekends — I sit home with my husband. I do a little volunteer work one day per week. Come the weekend, though, I get depressed. I had hoped this move would be good for each of us. Up until recently, it was a good move for me, but not for “us.” Now, I am feeling it was not a good move all-around. I feel alienated and resentful… and alone….

Russinator · July 12

((HUGS))

Victoriaredux · July 12

Keeping a social couples group is difficult as one ages, couples split up, financial changes happen , caregiving topics pop up and "the group" may be superficial and not want to talk about them. That group may be their escape too. .

You've moved to a new area and your husband has a progressive fatal disease. Expecting the other guys in the circle to be understanding and be ,in part, his sitter is asking a lot of them for a newer resident.

Can you hire someone to golf or play cards at your husband's current level until he isn't interested or capable anymore. Maybe the person who watches him while you volunteer? With his confusion and sense of time he doesn't sound safe to be left alone.

Having a LO with dementia does narrow the world . That's a sad fact. Have you looked at places with AL and MC that have a lot of activities? Then he could stay with you in AL until he needs MC and you'd have activities in a more understanding setting .

From reading your posts I sense a lot of frustration that your husband no longer understands where to pee at the golf course, clothes handling , suitcase packing etc . Those are abilities that are behind him.

Your frustration level will be less if you accept this part of the disease and just work around it- by doing tasks yourself without any expectation that he will, , hiring helpers or , sadly, dropping those activities as a couple. The disease isn't either of your "faults" so getting stressed about it is not going to change the course.

You may want to talk to the social workers at the Alz Assoc helpline for ideas on how to handle how the disease is impacting his abilities and your relationship.

"The Alzheimer’s Association is here all day, every day for people facing
Alzheimer’s and other dementia through our free 24/7 Helpline
(800.272.3900). Talk to a dementia expert now and get confidential
emotional support, local resources, crisis assistance and information in
over 200 languages. It's ok if you don't know where to start. Just give
us a call and we'll guide you from there."

Ed's mom · July 12

A fellow mover, welcome. A few years ago I saw what was coming and insisted we sell our farm. We did and moved to a community on the coast. But LO was starting to argue and give years later we moved, the entire time I was being blamed, "we should never have sold our home". I have church and Thursday carved out for myself and will not totally give up either. Yes, couple friends are gone, can't blame them. Two close friends remain but we see less of them. I'm still new here but this has become my place to land. No explanations needed, good advice and people who have lived what we're living. I understand about the anger frustration and lack of logic, but I really want my original LO back.

dcare45 · July 12

We are over 6 years in our journey. We have lost all but 1 friend that stops around every few months. We have a small family and in person visits are rare. Texting or short phone calls mostly. If we do go somewhere DW wants to leave as soon as we get there and becomes agitated.

I believe that people don’t understand dementia or how to interact with someone that has it and that makes them uncomfortable. So they avoid it all together. In the end Dementia takes it all.

I know the frustration and resentment you’re feeling. I also know that I will be here for DW no matter the cost. She did not choose this but we are in it together.

Maru · July 12

We moved cross country in 2023, right before DH was diagnosed. At that point, i read everything about ALZ that I could find, so I was prepared for the upcoming isolation. Caretakers do not get to live "their best" life. The reality is that it isn't reasonable to expect others to adapt to your LO's behavior. Even I am uncomfortable being around people with ALZ that is pretty advanced, although that will change as DH becomes more advanced.

Often, around the middle stage, POD may not handle changes in routine and environment, so groups and any kind of travel is no longer part of our lives.

What you need to do is to plan outings for yourself with your friends. That is what we call self-care and all caretakers need self-care to maintain their sanity.

Ultimately, caretaking of a LO with dementia is a self-sacrificing act, best achieved when done with love. I feel your disappointment. Have yourself a good cry. Enjoy your LO when you can (yes, there are moment that will be good), cry when you need to and do what you need to do to take care of yourself.

Care4Hubs · July 12

https://alzconnected.org/discussion/comment/277182#Comment_277182

Thank you for your reply. Let me say that I never expected anyone to babysit my husband. I know I can’t expect my friends to do that, even as they have offered. Right now, my husband is able to take care if himself for a few hours. I know his personality, he would not like a stranger sitting with him. (Maybe it will be different if/when he doesn’t know what is going on. We cannot afford AL.

Most people would not know he had dementia, unless I told them. He can carry on a conversation with someone if they ask him a question. Sometimes he stumbles over his words. Mostly, he is quiet. His big thing is short-term memory, confusion, and frustration. He was always a Mr Macho. So there is that. He always found fault with people. He has said several times that he does not feel a connection to anyone here. Yet he was the same way at our other home. My friends are the ones who offered to take him to dinner or other places while I do something else. It is my husband who first said he would. Then declined.

There is another man in the group who has Alzheimer’s and frontal lobe dementia. He is in a more advanced stage. He still hangs out with the guys and they don’t mind.

So part of the problem is my husband’s personality before Alzheimer’s is figured into the picture. Nothing I can do about either….

Feeling alienated

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