Advice to caregivers from another viewpoint - pt with dementia

Omg I couldn’t cope with that. That will wear you down. I wish I had some advice

We are on track for Infusion Therapy for my wife's Dementia. Trying to obtain pro/con feedback regarding the therapy as well as making the decision whether to have it or not. Your feedback is welcome and important as we confront Dementia.

@marye2
To bad the cats can't talk back 😉

Thank you for your post. My mom has dementia and we are in the first year or so. Her short term memory is what I am noticing the most. She will call me several times a day and not remember talking to me. I just tell her that her short term memory is not that great and try and make a joke about it. You are correct in using humor. It definitely distracts and redirects her from the stress, I know that occurs. She will say, "I am just losing my mind." Humor is helpful, although it is painful to be losing her. Also, I try NOT to future trip and stay in the day. Thanks again for your post.

Thank you so much. I will defintiely look for the Dementia comedy and share with my husband who has dementia. Humor does help tremendously. Best wishes for you and your family.

randyreg So I just had my PET Scan Friday and waiting to get the news from my doctor that I can now get scheduled Leqembi infusions. I am guessing her score on the PET Scan is above 30 or so. Mine is 34.9. I do everything still--drive, cook, clean, play mah jongg and have lots of energy for 79. Do I need to get this infusion into my life for the rest of it? Don't know...got nothing else to support doing nothing so I'm going forward with it. The at-home injection is coming along pretty fast so maybe it will get approved to start earlier than the 18 month regimen now in place. I have been on 5mg Aricept but decided not to go on to 10mg. Keep in touch and good luck with your decision. It's a big one...

Thank you fo saying that. It can be funny sometimes. And it tells me that he and I are still connecting.

@anniebot Welcome to Mayo Clinic Connect! You’ve joined a wonderful group! I hope you’ll read the whole discussion and get lots of good information.
Does your husband have dementia and how is he doing?

@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