Introductions: Are you caring for someone with dementia?

Good suggestions, Scott. I took up volunteering shortly after I retired, and long before my wife started having problems. I'm interested in local history, and am on the board of one house museum, volunteer at the Lincoln home, and am the chapter registrar and genealogist for the Sons of the American Revolution. I have also been in a book club for 10 years and am the secretary of our condo association's board. So, I keep pretty busy, but I have a hard time during the intervals when I'm not occupied with some kind of distraction. I become anxious and restless. One thing that might help is getting more exercise, but right now, I'm having some kind of problem with my right leg and don't want to initiate a walking program.

Thanks for your reply. You certainly stay busy!

Getting exercise is a real challenge for me, too.

I take online classes through SilverSneakers (included in my Medicare Advantage plan). But there are other options, including YouTube videos.

Good luck!

@ultrajko I understand exactly what you are saying about your wife not being seen by her primary doctor when she was in the hospital. Unfortunately, it’s one of the new ways in hospital care. Doctors, who are called hospitalists, are responsible for patients while they are in hospital. The primary doctor doesn’t see the patient, they are given a report/update by the hospitalist. Someone somewhere must think it works well, but it is difficult for the patient and family. I don’t know what the primary care doctors think of it, but. . . . .
I just want to give you a hug. I know you are trying to do the best you can against great odds and it’s extremely difficult. All I can say is to keep trying.
Edit: this seems to be a much better definition of a hospitalist:
https://www.yalemedicine.org/news/what-is-hospitalist#:~:text=A%20hospitalist%20is%20a%20physician,obstetrics%20and%20gynecology%2C%20or%20oncology.
The next time your wife is in hospital (hopefully never), find out when the hospitalists makes rounds, so you can meet them. Maybe express your concerns to them, concerns that you want the primary to know. It may really help!

Well aware of hospitalists as we visit the ER with her on a regular basis. My point was that her personal physician who alleges to be a friend did not have a moment for a courtesy call to me (she has my number) to see how her patient was doing and let me know the situation. The hospitalist is jogging between patients and did not have the time of day for me when I met him as he was releasing her. New medicine I'm sure is more efficient for the doctors and hospitals, but I was not even given information when we left the hospital this time that I would regard as more than "Google Gobbledygook". "What to eat"; "How to take your medications" yada yada---No one ever told me in detail what happened and how to prevent it from happening again--

Does Silver Sneakers give you a pretty good workout?

As much as I can take.

The classes are at different levels, Beginner, Intermediate, and Advanced. But of course no one is watching you, so you can be as energetic or lethargic as you like.

@ultrajko That all sounds like a very bad situation. You may wish to contact the Patient Representative at the hospital. Their job is to represent the patient when an issue comes up. After your meeting (virtual is possible), the rep can then go to the staff involved and talk to them. It’s all non-confrontational but lets the staff know they made a mistake. As a retired nurse and administrator, I know this process can be effective and anonymous.
Will you think about this?

72 year old spouse continues rapid dementia decline. I try to keep things as even keel and "normal" as possible. She has taken to sleeping 12-16 hours at a time; is this normal? I would ask the doctor, but they are much too busy to deal with dementia questions since there is no cure and thus no money to be made! She has finally declined to the point of not fighting me quite so hard on taking her medications, but her personal hygiene and laundry is starting to be a problem. Just looking for ideas to help her and salvage my now destroyed retirement!

@ultrajko Have you thought about changing to a geriatrician? I know you don’t want to change doctors, but seeing a geriatrician might be best for you and your wife. They are specialists in aging and would easily be able to discuss dementia. They might also know where you could find a part time nurse’s aide to help you.
I can sense that you are overwhelmed and stressed and having a caregiver for a few hours a week would allow you some time to take care of yourself.
What do you think?

Unfortunately, I am not on Medicare as I always worked for the State of Illinois and didn't accumulate enough credits in Social Security to qualify. Instead, I have the same health insurance I had when I was working, which is actually better than Medicare, because it's free (no insurance premiums) -- a perk that Illinois offers or used to offer to retirees with more than 20 years of service. I don't know if there are other programs that are similar to Silver Sneakers for seniors, but I can do an Internet search. I thought maybe I could get in under my wife's eligibility, but they won't let me.