How do you handle the loneliness?
My husband was diagnosed with a rare brain disease that causes EOD. It's been 8 years and he's in the mid-stages of dementia; Still remembers me and people close to him, but his short term memory isn't good and he gets confused easily. He's also extremely paranoid and questions my every word and movement. Conversation is almost non-existent, outside of the accusations and questioning. I have a job, but no friends at work or elsewhere due to my husbands paranoia. It's been extremely lonely. How do you get through it?
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Wow. Sounds horrible. My husband has MCI and also watches and has a negative comment about everything I do. Most of what I do is help him, but he doesn't understand. I decided it was important for both of us for me to keep and expand friendships. I've been making an effort to accept invitations and reach out to people I like. It's hard because I'm normally a quiet type, but I know I need this. After a lunch or dinner or movie with friends, I feel energized for a while. It doesn't last, but at least it's for a while. I encourage you to do the same. I understand your husband is paranoid and that makes going out difficult. Can you reach out to friends via the internet? BTW: I'm glad you're here.
Please don't let guilt from this renewed friendship cause you to end it. To be able to get support is a very valuable thing, especially from a friend who is removed from the situation and can offer a fresh perspective.
Yes. I'm at least like the average American. For decades I thought dementia, like Alzheimer's, was all about memory like "They don't remember who you are." Not even close! In my personal experience it's really mostly about abnormal and degenerative behaviors. It's like the brain is disintegrating in a way.
At some point they need 24/7 care to watch over everything. Most of the caregivers I have seen and know personally are truly the greatest humanitarians. I used to think I was a good person. I don't even come close to their level! They are like angels.
Thank you. I appreciate that.
Hi @clarence29, welcome. Are you the main caregiver for your mom? Does she live with you? How are YOU doing?
8 years, made especially challenging by the paranoia. Did you check with the doctor re anti psychotic meds? Loneliness. I tried out a half dozen on-line support groups and have winnowed it down to two. One is the Phoenix Mayo clinic Caring for the Caregiver on Thurs afternoon. The other is also from Mayo in Phoenix. I have learned to meditate. My husband and I walk a few miles when the weather is nice. Would your husband do that, either with or without you? Btw, we were never walkers. Do you have a Memory Cafe where you live? It's a social opportunity for both the caregiver and the person with cognitive issues. I wish you continued strength.
Well said.
Could you tell me more about the Mayo Phoenix support groups?
What a cruel disease for both of you, and for your life being constricted at such a young age. My situation is nowhere near as dire as yours, but I sometimes feel like a prisoner in my own home. It's a treat to get out for a while, even if I'm accused of "meeting" someone when I come home. Find things that bring you pleasure and try not to get too isolated.
Today is not a good day. I just got the results from my husbands most recent MRI. He has an evolving subacute infarct - ie: a brain tissue death that is continuing to worsen. This road is very long....