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.
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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.
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.
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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?
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!!!
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.
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.
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.
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?