Hello. I started a post, which grew to a lengthy letter and then started to become a book so I had to stop myself and regroup. Now, I'm going to try to just ask one question and go from there...
Question: Is it possible for someone who has been diagnosed with dementia to cover it up or to actually be "doing better" than they were six months ago when the diagnosis was confirmed?
Some background: Sister has had a few health scares the past couple of years. She was diagnosed w/ dementia two years ago and a second opinion confirmed it six months ago. She is physically feeling better and sounds good on the phone and says she's "back to normal". She says she's fine, which I guess she is in her reality. I even start to think "maybe she is fine" after talking to her on the phone a few times; however, I am reminded the diagnosis is true when I visit. My doubt that she is "back to normal" and doing fine is b/c there is a lack of food w/ nutritional value in the fridge, she eats very little when she makes herself meals, she doesn't take her meds on time, she appears to have difficulty when doing things around the house that require multiple steps to complete, and computer/financial activities confuse/overwhelm her. Plus, she has always been good at not letting on that things are not "wonderful". This may all be fine for her, but it is super concerning to me. Since the last health scare, she allowed us to hire a caregiver to come a few days/week. She was even open to moving to an IL/AL campus. However, she doesn't want to move now that she's feeling "better" and believes she is fine and nothing is wrong. I keep trying to get her to move to IL b/c I believe that she has dementia and am worried about her living alone. In addition, it would be helpful for her to be closer and get familar with new surroundings for whenever the dementia worsens.
I've been reading posts here for a few months and appreciate the supportive nature and experience folks share.
Thank you.
That said, has the cause of the dementia been diagnosed? Dementia is not a disease. It is a term to describe certain symptoms, some of which you describe about her behavior- meds management, financial problems, eating issues. Some dementia symptoms can be treated. Other symptoms, and unfortunately, most, are caused by progressive diseases like Alzheimer's. The cause of the dementia must be determined to know what you're dealing with.
I also agree that an ALF rather than independent living would be a better fit for your sis in light of her difficulties with daily activities.
I see definite signs of dementia in my Mother. But since I talk (well, used to) talk to/visit her much more frequently than any other sib, I was the only one who noticed. I will stay longer and talk more to her than any other sib--so they simply take their 5 minute visit and call it good.
I see signs of dementia and in the past have reported it to YB who is her primary CG and with whom she lives--he denies it all and says she 'playing games'. But I notice he has disconnected her oven/stove and I guess if she wants to cook he has to plug it back in. To me, that's a sign he doesn't trust her to turn off the stove.
YB has become very possessive of Mother and doesn't allow her many visitors (and since COVID 19, she has had NO visitors, zero. And he won't take her anywhere, even for a ride to get out of the house.)
You can't do much for someone who is losing their sense of reality. I just find that when mom gets angry or defensive, I leave. I can't HELP her, and my presence is a negative trigger.
Some people become kinder and sweeter as the dementia progresses, some become mean and nasty. There seems to be no hard and set rules about it.
You are a kind a loving brother to care and make inquiries as to how to handle this very frustrating personality change.
Here are a couple of links which may be helpful.
https://www.alz.org/
http://alzheimerssocietyofamerica.org/
The better informed you are about your sister's condition, the better you can care for her and yourself.
"Showtiming" ( putting on a good act) is common for dementia patients for short visits even to their doctors. Believing they are fine is not rare.
Do you have POA health and financial for your sister. It is important that these documents and others (e.g. will, dnr,) be drawn up while she is still able to do it. Those in early dementia usually are.
At some point she should have a needs assessment which will establish if she is safe living alone and what level of care she needs.
Your local agency for aging should be able to help point you in the right direction. Wanting her nearer you and moving sooner her rather than later makes sense to me.
Take care of you, in all this, Billy. Care giving is very stressful.