Mush

Biggles

My brain is turning to mush. Can anyone else relate to this? My DH not only has VD he also has APHASIA so we often live in silence. We have quite a few activities together walking, sailing, gardening etc but like everyone else it’s mostly 24/7 care, dressing, showering, food then household chores. Today we had a lovely friend drop in with lemons so I can make marmalade, toys and treats for our puppy and some homemade coconut rice pudding. She was totally engaging and involved with so many things, so animated in her conversation, so knowledgeable remembering all necessary organisations and peoples names etc and she is recovering from a brain injury! I felt totally inadequate, i’m down to remembering to organise pills, food, Dr’s appointments, home help if available, dealing with leery bodies, cutting toe nails, dressing me and DH as you all know the list goes on. I loved the visit of 4 hours but I was exhausted afterwards and the realisation that my brain really couldn’t keep up was disheartening quite depressing all I wanted was quiet again. This is my rave, I’d love some feedback.

Bridge4

Biggies, I definitely feel for you. We hear experts encourage us about the Big 4 healthy behaviors: diet, exercise, sleep and social interactions. It’s easier to measure and execute on the first three, even when we are isolated. Staying socially active is like using mental muscles, and unfortunately, it’s “use it or lose it”. We have a second home that has always been a great escape, but now I find that the lack of community support, volunteer opportunities and social interaction there makes me uncomfortable. She won’t leave the house unless it’s just the two of us, and we stopped having meaningful conversations a while ago. Coming home and re-engaging with significant social interactions is like taking a horse out of the barn and letting it run free again. Maybe your friend could be a regular visitor, or you can volunteer somewhere or join a class or club. Your mental muscles will appreciate it and you will feel stronger in no time.

JeriLynn66

Big hugs.

sfrsythe

I experience and understand your situation. Many hugs.

upstateAnn

your brain is working super hard caregiving so that makes sense. Do not berate yourself.

harshedbuzz

Your brain is doing the work of 2 people. It's hard.

I have a friend who sounds much like you describe. She's very outgoing, busy with all manner of charitable and political activities, her massive garden, hobbies and soon to be grandbabies. Sometimes she makes me feel like a slug.

l7pla1w2

I miss adult conversations about the sorts of topics your friend discussed, the kind DW and I used to have. You end up with a lot of conversations bottled up in your head, things you would have said, but you realize there's no point.

jehjeh

I get it. Mainly, I listen to my DH talk and I nod and say “uh huh” occasionally. Anything I say is either confusing to him, upsetting, or misunderstood. Have to be careful about tv because sometimes he believes what he is seeing is happening to us. I try to read but usually can’t get more than 10 minutes before he’s asking for my attention.

I used to be well informed, busy, and had a lot to contribute to a conversation. Now, seeing friends reminds me of how much I’ve lost. I’m sure I’m depressed and that just contributes to my disconnect. (It’s gotten so bad that I cried today when I had to cancel a mammogram because his caregiver was having car trouble and canceled. I was actually looking forward to this horrible test because it meant I would get to see people. :)

It helps to know we’re not alone, but basically we truly are all alone.

annie51

I can relate. The aphasia is so difficult because his answers to my comments or questions are totally unrelated and meaningless. I keep trying in vain because I can’t always keep things to myself. It’s heartbreaking and isolating. A friend came to visit and DH won’t let us have a conversation for 30 seconds before interrupting - I know he can’t follow our conversation but it’s still frustrating. I’m going to try a caregiver soon for a couple of hours but I’ll end up doing errands, making phone calls, touring MC’s, going to dr appts for me. I know it won’t be enough and will add on once we find someone we like so I can meet friends for coffee or go play pickleball again and have some real conversations.

Timmyd

There is currently no such thing as a real conversation in the presence of DW. Everything is just constantly interrupted by her nonsense gibberish. This includes phone calls. I have to schedule all my phone calls during companion care. I use the word "currently" because it was not like this before and I believe it will not be like this in the future. It is just a matter of how long it lasts, and what comes after this.

Carl46

Biggles, I didn't realize how tired I was until the years of 24/7 hands-on caretaking ended last month. I still manage the affairs of my wife in MC and I still visit frequently, but I am not constantly alert to her every movement. My brain is starting to recover, and I think yours will as well when this stage of your life is over.

It is no wonder your brain was fried after four hours of trying to keep up with a relatively unencumbered person. Your brain is exhausted, and you were "showtiming" the whole time she was there.

Biggles

https://alzconnected.org/discussion/comment/243664#Comment_243664

Thank you at least I have had a laugh. I rather see myself as a slug at the moment. ha ha

Biggles

It does help a lot to know we are not alone, but you are right we really are alone. I can walk around the house trying to do my thing but I have a shadow, I can't talk or interact with my DH very well and I can't really concentrate on whatever I want to do, so two zombies walking around the house together!! It's great to go out and walk along the beach or look at the yachts together but still alone. Its sad!! !! Thankyou for your understanding.

Biggles

Thank you annie the understanding we get from this site is invaluable. It's exactly as you say. I have just been looking into a carer situation and will try for a few hours a week again. I havn't had any success so far. I always wanted to play Pickleball all even suggested it to DH three years ago when he may have been able, but not now. Thank you for your comments.