Advice to caregivers from another viewpoint - pt with dementia

Karla;
Thank you for taking the time to respond. As many times as you have likely typed those words, they are extremely helpful to us first time readers.

randyreg

Karla;
Thank you for taking the time to respond. As many times as you have likely typed those words, they are extremely helpful to us first time readers.

randyreg

@randyreg I remember reading an article from uchealth.org about first patient at uchealth that received lequembi new treatment.
I tried to attach the link from uchealth.org. For whatever reason, it's not copying, but I have a software problem on my computer where I had to purchase another PC today. So it's not doing a lot of things it should be. Goggle uchealth.org. It gave us hope.
Best, Karla

http://www.uchealth.org/today/first-patient-at-uchealth-receives-leqembi-new-treatment-for-alzheimers-disease

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)

@randyreg I've answered this a few times for others so not to be redundant but helpful since I saw your @randyreg post in two places re: infusions. My husband went on lequembe infusions August, 2025. Since then he's on his 20th or 21st infusion. The decision for us was easy. To do nothing wasn't acceptable; to do something to slow a progressive disease down, was paramount. We knew there were risks, with brain swelling, etc., but we also knew that he would be receiving periodic MRI's, after the 3rd, 5th, 7th, and I believe 10th infusion. So his therapy would be managed. I was told yesterday by the neurologist staff they don't have him do MRI's again, unless he is having headaches. He appears to be tolerating the infusions well. However, we are trying to eat cleaner, he takes naps if he's tired. We get out and walk to exercise, since we're both retired. And we try to keep things structured and calm in the house. I don't remember my husband's numbers when diagnosed but I do know the doctor said he was in the mild stages, a prime candidate for lequembe. I also know in going to the infusion center, both men and women, all ages from 60 and up are on infusion therapy. Do I notice any difference? He still has sequencing issues with his memory but I do notice he seems to be less forgetful in where his things are: wallet, backpack, keys, etc. We have a process where everything goes in the same place every day (or we hope!) We also have a follow up Guide program as part of the First Choice neurology infusion team in South Florida that calls and checks in with a nurse if we need any help. For now, we're hoping, his infusion therapy will make an impact on slowing down the amyloid plaque in his brain. Hope this helps. Best, Karla

KJ 48th, @randyreg On another site (I do seem to end up in different spots on this website...), I discussed some current information offered by Eisai. Title is Eisai Presents New Data on the Continued and Expanding Benefits of LEB Maintenance Treatment in Early Alzheimer's Disease at CTAD 2025. It gives "time savings" for those going from Mild (MCI) to Mild Alzheimer and also MCI to Moderate Alzheimer. It's easy to read format and is very encouraging for those of us "lucky enough" to be eligible for infusions (which, by the way, are on the way to becoming completely at home injections without having to wait the 18 months!!!Please, please keep abreast of all the innovative methods coming along for us.

@midnightwalker Thank you for this valuable post. I'm going to pull up the Eisai information you mention on LEB Maintenance treatment. I read your post to my husband last night who is now on his 22nd Lequembe infusion. To think we're on our way to home injections is a very encouraging breakthrough and provides hope to slow down or hopefully, one day, stop this dreaded disease. Your suggestion in keeping current on all the new innovative methods is a worthy trigger to continue to help each other on this site.
Best, Karla

@midnightwalker I agree wholeheartedly. Attitude is everything in any crisis we deal with. The challenge here is just reading about the progression of the disease, and how depending where the caregiver is, what's required to care for their loved ones. I talked to my husband and we agreed, that we would get help, and not do this alone. Every caregiver handles their given situation different. I'm optimistic too, why your note was so valuable to me, and spurred me into thinking, I need to do a better job of keeping current on what's taking place to find a cure or slow this disease down. PS, I went to culinary school in San Francisco, lingered in Hawaii with friends for over a month - boy was that enjoyable. We live in Jupiter Florida, on the east coast side now......having to tackle a move in a few months, after my remodel....So I'm hunkering down on that....and yes, keeping busy. Thanks for your note back. Very hopeful. Best, Karla