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.

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BillyT2020, yes, someone can cover up dementia symptoms, but they may not know they are doing that. There have been some good comments made below, I like golden23's about educating yourself. Education is important for the caregiver. There are some excellent books on the subject. "The Dementia Caregiver", "The 36 Hour Day", and "Learning to speak Alzheimer's" are some of the best.

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.
Helpful Answer (1)

People are very good at covering dementia. She needs a thorough cognitive and physical exam and evaluation.
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Assisted living with the option of memory care would be good for her. She can start with assisted living and when she gets worse, can go to memory care. I would not suggest independent living because it already sounds like she needs help with preparing meals and that she's close to being ready for assisted living anyways. Shop around and make sure the place smells good and the residents are well taken care of. Check out the memory care too. Ask about how many caregivers per person. Sometimes assisted living looks great, but the memory care is not. Another option is caregivers at her home during the day to prepare food and help with meds. And, a group home setting is also nice for more individualized care and a homelike setting. And, yes, my mom had everyone fooled with the dementia. Like you said on the phone they sound great and nobody believed me, even my own brother. He fought me trying to help my mother. He's out of state and they're the worst because they don't see what's really happening and believe the person is okay and believe the one with dementia. Where your sister is is where my mom was 7 years ago and she is in memory care now. Good luck and God bless!
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BillyT, it would be helpful to know how far away you live from your sister and how old she is. Can someone "cover up"? Yes, both purposefully and not. My MIL lived 6 miles from us. We realized something was up when she'd tell each of her 3 sons a different version of the same story. We couldn't figure out "why would she do that?" because we saw no other signs that would cause concern. But I was running errands for her, bringing her groceries, making frozen meals for her. I'd call and ask how things were going (because we had a youngish family and worked full time running our own small business so couldn't always go for an in-person visit). She'd say fine, seem fine. Then one day when we took her on an outing, she almost fainted. When we went back to her house we looked in the fridge and found she had not eaten any of the food (fresh or prepared) -- some of it was even obviously going bad. No signs of food refuse in her garbage or sink, no dirty dishes, nothing. None of her meds seemed to be consumed. She wasn't remembering to eat. Then we took to calling her every day and reminding her to eat, then call back to ask what she ate that day, and she'd give us a detailed list. But when we went to check -- no signs of having eaten anything. Fast forward to a discussion with a social worker, there's a thing call "apparent competency". If you asked her general questions ("how are you? whatcha doing? etc) she can answer those. But once you started to ask her very specific questions about current things (Who's the president? What is today's date?) she couldn't answer them. We were blown away. She had pretty advanced short-term memory issues and so she could no longer live on her own. Not remembering to eat (or remember how to use the toaster or microwave) is a deal breaker. Also, many elderly are very aware that "something's wrong" but they don't know what. They are terrified of losing their grip or control over their lives (or their spouse's/partner's). This may be what's happening with your sister. If you get the chance to speak to her one-on-one, ask her some very specific, current questions that only have 1 correct answer and you can get a sense of where she's at in terms of memory. I hope this info helped. I wish you all the best as your work with your family to help your sister.
Helpful Answer (4)

Yep, Billy, people can play you. Whether it's legit, they really are hitting on all cylinders or they are faking it for a little bit--or sometimes they are on a medication that can help---it's hard.

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.
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Welcome, Billy. Have you read any books or articles on Alzheimer's?
Here are a couple of links which may be helpful.

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.
Helpful Answer (7)
BillyT2020 Jun 2020
Thanks, Golden23. I have looked at various resources and will continue to do so. I have POA health, but a different person has the financial. It's all so concerning and confusing. I appreciate your reply.
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