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Introductions: Are you caring for someone with dementia?
My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.
In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.
As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.
I wish everyone struggling with this disease and their caregivers and families strength and peace.
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Just brainstorming here...
Have you got an old hobby you had to set aside? Maybe you could pick it up again.
Join a book club? Cooking club? Are you a fan of a sports team? Collect anything?
What kind of volunteering do you do? Any possible social contacts through that?
Could you mentor someone?
You never know where it can lead. After having a stroke, I learned that people found my recovery story rather compelling.
In the past few months it has led to an interview on a national podcast (https://www.youtube.com/watch), a series of self-produced series of videos (https://www.youtube.com/@srlucado/videos), and even an invitation to speak at Texas Christian University (TCU).
And I'm just getting started.
Good luck!
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3 ReactionsDealing with a lot of stress and anxiety caregiving a 72 year old spouse with what I see as late middle stage dementia. Cannot get a doctor's diagnosis and my spouse refuses to let me accompany her to medical visits so I operate totally in the dark. It's incredibly lonesome except for my dog--I think they just put her on Rexulit but she is hiding it from me and now can't remember where she hid it. Evil disease
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2 Reactions@ultrajko Would it be possible for you to write a letter to her doctor and explain what goes on at home. Explain about her forgetfulness and misplacing medications. Not taking medications could be serious. Ask the doctor to tell your wife that it’s important for you to accompany her to appointments. He/she needs to explain/talk to you also.
Would this be worth a try?
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6 ReactionsWithout being rude, I think they have written it off as not very profitable. I have hand delivered detailed letters about her issues, begged them to help make sure she can't drive (I have hidden the keys now) and they know she has dementia. Yet, they hand her the meds, won't even give a short phone call to tell me how she is doing and act like the dementia diagnosis doesn't exist. Hard to put up with a husband needing information during the "magic 15 minutes every six months" that is our medical system!
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4 ReactionsNo, I can't switch her doctors! Her primary care physician was regarded as a personal friend until the dementia set in and the concern level plummeted! My spouse won't even consider using someone else and I can't get her Covid and flu shots at the drugstore; she is convinced that her doctor will take care of that which, of course, does not happen. I have tried to talk her into getting the shots at CVS but it just results in a rude response that her doctor takes care of that! She was hospitalized last week for high blood pressure and heart rate (likely due to refusing to take her meds) and I notified her PCP about the situation. Nothing, Nada, Zilch...not even a courtesy call to see how she was doing. I'm stuck with this one which just adds to the anxiety level!
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2 ReactionsGood 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.
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2 ReactionsThanks 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.
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!
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4 ReactionsWell 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--
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4 ReactionsDoes Silver Sneakers give you a pretty good workout?