Advice to caregivers from another viewpoint

Mary, I make it a priority to do things that feed my soul. I'm still Treasurer of my church, still web administrator & Board member of my professional society (though retired), play piano (which my husband likes, but can't 'cuz of a broken foot right now), gardening a lot - big back yard with perennial plantings & large vegetable garden (don't know how it is right now - haven't been past my bedroom for 2 1/2 weeks), cooking/baking, reading outside in the garden as much as I can. It is important, both for your soul & for what the future might bring.

This is definitely not what we planned for our retirement! I liken it to cancer when I speak with other; Lewy Body is robbing my husband of his brain & its functioning, but without the painful effects of cancer & cancer treatments.

Early on, Dennis had speech therapy about 8 months. It was effective then. But he has deteriorated so much since then (late 2020-mid-2021), that it wouldn't be effective now. The home health aide does jigsaw puzzles, plays matching games, organizes 50 years of photographs & plays dominoes with him as well as exercising him in our basement "gym". His neurologist & I call that "brain therapy".

Hang in there & know there are others living the same life you are. All we can do is the best we can. I started a journal about this horrible journey. But that went by the wayside in the last few months as he deteriorated more & more. Have started it back up again. I find it helpful to get my thoughts on paper. I'm not poetic at all, but I've started writing daily haikus too, but they went by the wayside as well. I'm going to sign off & write one now!

Thinking of you & all the others who share dementia caregiving.

Pauline (Lena)

Thank you Lena. I hope your foot 🦶 heels so you can get back to the garden and piano.
I actually have a full life and we are not at the stage of needing help but I can’t help focusing on our relationship w a ray of hope right now.
But I am learning life must go on for me even if we can’t share as much of it.
I’m in two book clubs and two writing groups, a women’s literary group, play Maj jong weekly and keep us both as social as possible.
Some things I put aside but need to take back. I’m actually going through a period of recovery in a way. The last few months have been exhausting.
Thank you for the insight on speech therapy- what the geriatrician said was that they would work on cognition. Anything that keeps the brain working.

Good for you Mary. I know how hard it is not to lose yourself in the caregiver role. One thing that helps me is to remember & remind my husband that the dementia diagnosis happened to us, not just him. Luckily, or not,my husband doesn't need physical help, just what they call stand-by assistance, so I need the aide or I will become housebound too. For now, life does go on for us. Keeping up our non-caregiver interests/activities will keep our separate life to go on, because unfortunately giving the prognosis for Lewy Body, more likely than not, life will have to go on only for me at some point.

The broken foot has forced me in that "period of recovery" you mentioned, as the last 8 months or so have been dramatic.

I'm in two dementia caregiver groups which help immensely.

FYI - Dennis' speech therapy was for cognition as well. But now, he's past the point where it would help again. As the Drs. tell us, it's the "progression of the disease", which is inexorable.

Take care.

Pauline (Lena)

Reason, logic, and common sense are no longer communication tools. Goofiness and silliness are very effective in both communication and keeping her in a good mood. I feel like I am a clown at a toddlers birthday party in order to communicate more often than not. No reasoning, no arguing, no criticizing just toddler party fun. It is better than feeling sorry for myself or being miserable that is for sure. I think goofiness and silliness is a stress relief valve for being normal in an abnormal situation.

So true, but also so difficult. I mess up all the time, but keep trying.

Pauline (Lena)

seems to work with my husband. 😊

I hope you all get better soon and keep your chin up! It is so hard to be a caregiver at times. I think my husband has Lewy body too and it’s super painful to see him keep drinking and hurting his brain daily. Humor is a great reminder and so is praying and turning to support groups. I’m thinking that a CCRC is a great idea for all of us. Have you all considered moving into one or do any of you already live in one? They sell you on fear, I sometimes think there’s a better and more empowering way to live still at home as independently for as long as possible. However, it seems there’s a catch 22 in that once you truly need meals, help and care, one might not qualify to move in to a CCRC? It’s a bit tricky. What do you all think? I love the idea of long term care in place, meals, social interactions daily, activities…but, loving in a small apartment doesn’t sound too fun. Oh well, everything seems to be a compromise as we are. Hang in there everyone! Sending healing ❤️‍🩹 hugs and love and prayers 🙏!

“Living in a small apartment “

@pianist3 My parents moved to a CCRC when they were in their 70’s. It worked so well for them!

I can deal with my husband's missteps, including forgetting or not doing things. The part I cannot deal well with is the almost constant verbal abuse, swearing at the cats (Which upsets me) and rudeness when we are out with friends. I know this is my life going forward, but getting Just In TIme relief is tough. Ideas?