I stepped out of the room with the doctor to tell him my dad was diagnosed with dementia by a neurologist because he apparently didn’t read the letter I sent him. He told me I can go to social security office and apply for long term care so he can have a caregiver. I asked him what about him harassing my husband and accusing him of stealing? He said the caregiver can give him anxiety pills. So then we go back into the room and he gives him a memory test and he passes! He did so well. The doctor is probably thinking I’m the crazy one 😕. But I know it’s not just me. My husband definitely sees it too. I’m guessing he can never go into a care home if he refuses to go and he passes memory tests? Even though half the time he is accusing my husband of stealing, and he can’t reason well on anything. He forgets to take his pills, he forgets how long food has been in the fridge. I completely forgot to mention to the doctor that he’s still driving. But now that he passes the memory test maybe the doctor is not so concerned with his driving. Sure sometimes he drives ok, but half the time he drives he runs through red lights or goes 85 in a 55. I’m so upset. I already wrote to motor vehicle and they did nothing. I tried to take his keys, but he has spares. I am way to sick to deal with this and my seizures, but I know it’s my fault I’m the one who wanted him to live in our guest home. Of course I didn’t have seizures then, but I really had no idea what I was getting into.

It's not just dementia that qualifies an elder for long term care! If he needs help with ADLs, then he qualifies. But a doctor cannot "order" placement, that's not how it works.

If you stop propping him up, he'll see that he needs help and then maybe he'll be agreeable to Assisted Living. He can get pretty bad with dementia before they make him go into Memory Care.

My mother is 94 and did poorly on her MoCa test in 2016, but was fine to stay in AL until 2019 when she got sick, scored a 10 (down from 19) and also went into a wheelchair after 40x falls. Then she had to transfer to memory care. She will tell you there's nothing wrong with her, she was "put" there with "the morons" for no reason. Meanwhile, she has moderately advanced dementia. But she can Showtime the heck out of a situation and fool people left and right. Muscle memory lets her chitchat and b.s. with others .....the " hi how are you, don't you look lovely todays" are in good working order, to the point where I've had folks ask me why she's in Memory Care. Ugh.

She has days of lucidity and days where she talks gibberish. Days where she'll tell me what she read in the paper, honest to God, and days where she's riding the bus from Colorado to NYC to visit Papa whose been dead since 1943.

I made it clear to her that I would not be caring for her in home because I am not qualified to do so, and because it's just "not an option". She's a very difficult woman, to put it mildly, and at 63 with my own health issues, she'd wind up killing me. When my dad fell and broke his hip in 2014, the rehab would not release him back to independent living so that's when I was able to place both of them in Assisted Living. Dad passed in 2015 and my mother just continued living there.

If your father hurts himself like mine did, you may be able to get him placed in AL the way I did. Otherwise, have him hire paid help and withdraw from doing it yourself. Don't become a statistic!

I'm really sorry you're going thru this, it's so hard. I want to send you a virtual hug and scream I GET IT. Wishing you good luck and Godspeed as I know there's no easy answer to the whole mess you're faced with.
Helpful Answer (13)
Reply to lealonnie1
Martz06 Apr 17, 2021
It’s amazing isn’t it? One day they are fine the next day they aren’t? Thank you for the advice
I understand you completely. I decided to take my parents in 5 months ago, and became to familiar with their inconsistent behavior. My husband has been witness also. I had a conversation with their doctor questioning why they were on a certain medication, Quetiapine, he said because they have early onset dementia. They were never officially tested. Now, after living with them for 5 months, (in the same house), I'm starting to doubt they have anything wrong with them.
I'm thinking they do it for attention, they love drama, chaos, and maybe they are not as nice as I thought :) haha

I'm really sorry for your experience, I think that if he is making you ill, as hard as it will be and unfortunate for him, you might have to seriously consider distancing yourself as much as possible. You should not have to get ill . He had a full life. This is your life. I say this with compassion for you. I know you have compassion for him, he is your dad. This is tough.

"I do feel an in-depth conversation is greatly needed (not sure if it would help due to inability to reason well but it’s worth a shot). I know he gets angry with me and does not respect me as caregiver (since I’m the daughter and he’s the parent) but I was thinking I can contact higher ups in his place of worship and perhaps he would listen to and respect them (unless the dementia is too advanced)"

That is my father to a T. You can talk and talk, it's never going to change his perspective.
When is enough enough?? You need to ask yourself that. Maybe it helps to write down how much you do for him and have done. When is enough enough?
How much more are you willing to do or can do? How far are you willing to go? You have seizures since you have been taking care of him? I think you have gone too far.

Why haven't you given up yet? I'm seriously curious, not trying to judge just trying to understand, since I'm in the same boat.

I wish you wellbeing, happiness, peace and strength.
Helpful Answer (7)
Reply to shuffle
Martz06 Apr 16, 2021
Thank you. I do not feel I’m healthy enough to deal with this stress. I really wish a family member would take him, but not anyone wants to. I feel If I set him up in his own house or condo (if that were possible financially) it would just cause more worry because he’s living alone and I don’t feel he’s capable. Plus the guilt I would feel of kicking him out would probably be just as bad as the stress I’m dealing with now. I would be completely happy if a doctor would order him to go to a home, but unfortunately I hear you can’t force someone who is not willing to go
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“He told me I can go to social security office and apply for long term care so he can have a caregiver.” ?????? That doctor CLEARLY doesn’t understand how “social security” works!
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Reply to GAinPA

"I’m way too sick to deal with this and my seizures, but I know it’s my fault I’m the one who wanted him to live in our guest home. Of course I didn’t have seizures then, but I really had no idea what I was getting into."

I briefly skimmed your previous posts to get a sense of your situation.

You can't keep doing caregiving, unless you want to die before your father. Do you know that up to 40% of caregivers die before the elder w/dementia? JUST because Sister Dearest doesn't want him in a care home AND refuses to take him in, does NOT mean that you have to!

In one of your previous posts, you said the next time your father falls, that you will put him in a care home. Will you follow through with this?

PCPs often don't want to get too deep into their patients' lives. In my mother's case, her PCP dismissed my concerns over my mother's increasing anxiety, lack of reasoning skills, etc. My hypothesis? She knew that my mother didn't drive, she knew I was local, and so therefore assumed I was going to be my mother's caregiver. (And the doctor grew up in Nepal, where families took care of elders.) And then it got to the point where my mother refused to let me come back to the doctor's examining room. So I didn't even know what went on from that point on (although I was always right there for the ER and specialist visits).

My mother ended up being hospitalized for 17 days (this was pre-covid) for a gallbladder infection, then to rehab, then to a NH for long-term care. She'd been able to hide a LOT of her deficits for a long time, mostly because she was able to obsessively control her environment. One of her friends told me several times, "I hope I'm as sharp as your mother when I'm her age!" Yet I'd overheard conversations to this friend, and was surprised she'd said that. Once my mother was hospitalized, that seemed to tip my mother into obvious dementia. There were only a few days after that she seemed lucid.

I had been noticing issues with my mother for years. Even my brothers didn't notice for a while (they were all out-of-state). My mother did NOT live with me, she refused to hire any help (other than a cleaning service). She was having trouble climbing into and out of the bathtub (we installed grab bars, shower seat, handheld shower nozzle, non-slip rug, etc.). She had medical issues where she probably shouldn't have been living alone. I did NOT run over and be her personal hygiene attendant, as that was a line I drew and would not cross. I also got the POA brother to start paying for all the time I had to drive her around, be at the hospital when she had an infected gallbladder, then rehab, then NH, to the tune of $20/hour (the money was gifted to me, no taxes, since she would never qualify for Medicaid). My mother was verbally abusive to me. Since it was affecting my mental health, I found that getting paid made it just a job to me, and I was able to emotionally disentangle myself much more easily.

I'm sure many here would say I was a bad daughter because I wasn't willing to "put up, shut up, and offer it up," which is what most of society expects the daughters (in particular) to do.

So think about why you are willing to martyr yourself to the cause. Is there no way you can get your father out of your guest house? And is taking care of him causing you to lose money? Did you spend money on the guest house? Does he contribute to utilities, food?

What is his financial situation? Is he Medicaid-eligible?
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Reply to CTTN55
Martz06 Apr 15, 2021
I’m going to see if he can get assessed for long term care. But I’m afraid if he passes memory tests they won’t find him ready to go to a care home
Beware of the 10 minute (or less) little standard test that a doctor gives someone to make a determination on their mental state, I.e., dementia, Alzheimer’s, etc. Please do your self a favor and listen to Teepa Snow on YouTube as she gives many presentations on the 70 to 90 different types of dementia. (That’s right 70 to 90 is what she said.). She is a professional in this area and she has stated that the short test a doctor gives for the purpose of determining one’s state of “dementia” is no test at all and cannot determine one’s stage of dementia or dementia at all! Doctors are very uneducated when it comes to dementia.
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Reply to EldestdaughterM
disgustedtoo Apr 17, 2021
"Doctors are very uneducated when it comes to dementia." Too many are not informed enough, agreed. The problem with that test is it was intended for your primary care doc to get a baseline reading, and then with follow ups in future appts might be able to detect some changes. Then they should seek additional testing.

Otherwise, it is up to us to document (video is always best!) and advocate. I remember one forum member saying how her parents doc told them that dementia doesn't affect nice people, and they are nice people, so they don't have dementia!!! AUGH! Show me the door please and let me find someone called a doctor who HAS a brain and KNOWS how to use it!!!
In the UK these tests are useless because they test a) long term memory - which is the last thing that goes, short term is much more of a problem
and b) because memory doesn't = ability to reason.
So my mother keeps passing the same wretched tests because she can make a decision, but has absolutely no idea why she made it or what the consequences are. The only useful determinant of someone's metal abilities is a long meeting with specialists in elder memory issues and dementia. Drs simple question tests are a complete waste of time.
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Reply to TaylorUK
jacobsonbob Apr 17, 2021
Excellent point! There are different kinds of dementia, and such tests aren't relevant to all of them.
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Imho, this physician is so far out of touch in many ways. Social Security Administration does NOT provide long term care. A caregiver doesn't "give (him) anxiety pills." Your father's current physician could have given him "softball questions" for all intents and purposes. Please get a new physician STAT. He does not drive "okay." Disable the auto by any means possible before your father commits a vehicular crime.
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Reply to Llamalover47

Martz, I really feel for you as our boats are very similar. My mom lives 200 feet away, it may as well be a guesthouse. She too has vascular dementia, diagnosed after a neuro-psych eval by her neurologist. She too will "NEVER" go back there again. She also would NEVER consider moving to a AL MC as she plans to stay in her condo with me as her personal slave forever. And she can also showtime very well, especially with doctors. I could see my mom passing a memory test. It was the 6 hour neuro-psych eval that she could not fool. MRIs also back up the diagnosis.

So I really feel for you. Do you obsess about how to get out of this situation like I do? There seems to be no easy answer. In my state (FL) even with a diagnosis of dementia, and a report stating she should not live alone, and I have a DPoA, I still can not force her to move to ALF MC. A judge has to declare her incompetent before I can do anything.

BUT- what we can control is what we do. I'm pulling back more and more in an attempt to force my mom to accept some hired help (on her dime). Can you do that with your dad? Even a companion one day a week for 4 hours would be so beneficial for THEM, and it would take some pressure off of us.

If you are like me then you realize how truly difficult it is to have these conversations, but we must or our own health will get worse. I'm right there with you, so good luck and please post anything that works for you.
Helpful Answer (4)
Reply to ExhaustedPiper
Daughterof1930 Apr 15, 2021
EP, excellent idea about pulling back to force acceptance of help. My dad was adamant about having no one in his home. After one of his falls we told him he either had to move to assisted living or have help come in, and though we had no real power to force either by some miracle he believed us. His helper started at 4 hours a day, she had the skills and experience to win him over, and sooner than anyone could have dreamed they were friends. All this definitely took my backing off. I hope I won’t be so stubborn!
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It’s easy to put the cart before the horse. With good intentions, sometimes we try to implement changes on our parents too soon. It doesn’t sound like he’s that advanced so at this point I’d only be concerned about safety. Maybe unplug the oven & get him a toaster oven. Offer to take him on errands & appointments until eventually he just agrees to sell the car so he can make some money, save on taxes/insurance & gas. I’d be grateful if I were you because once it advances, there’s no denying it & that’s when he is really going to need your help.
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Reply to Kelkel

OMG, this happened to me. The doctor was annoyed with me! My husband got a 95!

But my husband was having memory issues. Two years later he was diagnosed with dementia.

He could have been on the correct meds all that time!

The problem is with the test. This is the same test that told us that our former president was in fine fettle. Remember that? He told us he'd gotten an A+. Well, this is the test he got an A+ on.

Hilarious, if it were not tragic.
Helpful Answer (4)
Reply to Salisbury
disgustedtoo Apr 17, 2021
Agreed. That minimal test is initially given to get a baseline. Follow up tests would potentially show changes. The problem is that test isn't "intensive" enough. It doesn't touch on all aspects of dementia. I almost laughed when they tried to give this to my mother. She was already in MC for at least 2 years at that time and had lost her hearing aid. She couldn't even complete it!

There are more comprehensive tests that delve deeper and assessments for other capabilities. The only real test my mother had was given as part of an assessment when I was hiring aides. The nurse and the test was paid for by Medicare and was much better. It was also done in her own place, so less "threatening" than a doc office. Mom was in the earlier stages at that point, but it confirmed what I already knew (good for bros to hear it from someone else, not me, the "know-it-all!")

Person, Man, Woman, Camera, TV - OH I'M A GENIUS!!! Where's my trophy?
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