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.
Since then, the places I checked showed it was "self-reporting" for dementia, which is a joke. Most people dementia won't even acknowledge to themselves they have an issue! None of her docs would even consider contacting the RMV. I did find something from 2010 where docs can report without the person knowing who reported them, to encourage more to report. Most don't want to get involved in that, which is understandable, but wrong!
Mom's was still in that 5 year renewal period when we took the car away. I didn't bother to get it revoked, as she had nothing to drive and wasn't able to figure out how to get another car. She whined and wheedled about it, but at some point would say the worst thing SHE did was give up her "wheels", like it was HER idea! Eventually even that stopped.
Decided to poke around more and found on the RMV site:
"Many older drivers are able to self-determine if they should drive based on their mental and physical ability. There is no age at which driving privileges are revoked, however if you are 65 or older, you have to renew your drivers license in person at an RMV Service Center to take an eye test. You can also present a vision screening certificate rather than take an eye test."
Apparently the age was recently changed to 65.
Another site, obviously not updated recently, states:
"Massachusetts License Renewal Rules for Older Drivers
Special rules apply to drivers who are 75 and older who seek to renew their licenses.
Time limits: Drivers age 75 and older must renew in person every five years."
I have not found anything disputing the 5 year renewal. Mom was upper 80s when we renewed hers and it was good for 5 years then.
IF your LO has other medical issues, it's possible they required every year, but in general, this doesn't appear to be the case... But, note in that first quote I posted, "self-determine" and the paragraph after that one says:
"You may have medical limitations that affect your driving, which you must self-report to the RMV when renewing your drivers license."
Seriously, very few of those with dementia are going to self-report!!!
And care-givers can't "give" medication to their clients.
That doctor is either just clueless or an idiot.
I helped him practise and we often fell about laughing.
Nobody was fooled by the rehearsals! The neurologist definitely out weighs the doctor and being able to count backwards one day, does not mean he would be able to the next.
Things become obvious over time. My advice is to take one step at a time and give yourself credit for what you have done and have tried to do. A lot of this is trial and error and adapting to change.
Good luck!
Use the information from the neurologist for getting help for your father. As for his driving. arrange with DMV about giving him the paper test and a behind the wheel test. Also give them documentation about his dementia as well as a letter of your observations of his driving abilities. Most DMV will do the right thing and deny him a driver's license. He can get a state ID through DMV, but be aware that your dad may see this as a driver's license.
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.
They can suggest it, speak forcefully about it.
They CAN declare a person incompetent to make their own decisions which can be a trigger for the state to step in.
Has Dad had a needs assessment by the local Area Agency on Aging?
"I’m guessing he can never go into a care home if he refuses to go and he passes memory tests?"
This passing of memory tests negating care home is NOT true, esp not that PCP office test. What is true is that POAs are insufficient to "force" someone to move. Our EC atty told me this when I mentioned mom refused to consider moving anywhere (in home aides attempt failed when she refused to let them in.) Basically, everyone has rights, even those with dementia. He suggested getting guardianship, but 1) the facility chosen wouldn't take committals and 2) I don't believe she would have been deemed incompetent "enough" to get the guardianship. Even staff in the MC unit told me they can't force any resident to do something they are refusing, including bathing, medication, medical appts, etc. They have to coax the person, hopefully getting them to think it's their idea!
What we had to do was come up ruse to make the move happen. We did NOT have any medical paperwork to facilitate the move to MC. NONE. The assessment the nurse did never went to the facility. No real doctor Dx at that point or even since, but clearly she wasn't safe to remain at home. It can take some doing to get creative enough to get the move done, but once in MC, they should be locked down, so he can't leave. since you have a guest home he is in, perhaps some major work, renovation or pest control requires you relocate while this is done? IF no fib or ruse can facilitate the move, then the next step would be guardianship. It takes time and costs money, but if it gets him moved, it will be worth it! If you have to resort to this, you can try to get another opinion, but the court WILL order testing - just check to be sure it isn't the useless test that's used. EC atty would be a must. I would highly recommend consult with EC atty AND find a way to move that car!
"I already wrote to motor vehicle and they did nothing."
and
"I tried to take his keys, but he has spares."
This is all too often an issue. Many docs won't get involved. Some DMVs have useless policy regarding this (MA = self-reporting dementia, seriously???) Please don't rely on either of these to resolve the driving issue. No matter who takes the license away, or how it is taken, for most this is NOT going to stop the driving!!!! When it was time to take mom's car, YB did all the talking and took the key. I was sure there was another, so I asked him to disable the car. Next day, she calls ME and accuses me of taking her key. Nope, don't have it. Day two, another nastier call demanding I get down there right now and fix whatever I did to her car. So, she HAD another key, she MANAGED to find it, and WOULD have driven the car! In both cases I could honestly say I didn't touch either one! I never bothered to cancel her license. We moved the car and then sold it. I just let the license expire - she had no means to find another car.
While pulling a battery cable can work for some, too often guys have worked on their cars and may figure this out. You've taken one set of keys. I would highly recommend using those keys to install either The Club or take it to get a kill switch installed. Moving the car to another location would be even better, using the excuse it needs work. If you can get it moved, and make sure your own car keys are secure ALL the time, that would stop the driving. You WILL have to put up with complaints, accusations, begging, pleading or whatever.
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.
A visit with a neuropsychologist could be the definitive answer, but it doesn't sound like your dad would agree to this. I do think a serious, caring conversation is in order. Prepare a list of observations you have witnessed. Then have a respectful conversation with him about your concerns, what you've noticed (“Dad, we need to talk about your driving”.). I know that this will be difficult. Are there other family members besides your husband who could also participate in this discussion? Don't suggest that he is a bad driver, but that age can affect his reaction time, these are the things you've noticed, and his safety is your main concern. Suggest alternative transportation means. Losing his driver's license is losing his independence. How will he get around? You may even want to express how your worrying about his health is affecting your own. Going thru red lights and speeding 30 miles over the speed limit can only result in a catastrophic outcome.
And by the way, do not fault yourself for having him move into the guest house. You did what you thought was right at the time.
https://www.dementiasociety.org/dementia-like-conditions
https://www.cbsnews.com/news/kris-kristofferson-misdiagnosed-alzheimers-has-lyme-disease
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.
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?
If there is a CT or MRI report, or a written summary, send those to your father's doctor. There are many, many different types of dementia with myriad effects, and your father's behavioural changes wouldn't necessarily show up on a cognitive test.
The assessment of mental capacity as it relates to a person's ability to make a given decision is complex and fluid - your father's mental state can fluctuate according to circumstances and according to how well he is that day. In addition to that, issues such as keeping his food fresh and remembering medication can become difficult through fatigue and apathy as well as plain dementia - he doesn't check the dates because it's a faff and he can't be bothered.
But none of this means he can never move into a care home. While it's true that your father (for now at least) decides where he wants to live, he can't decide to live in someone else's (yours) home with someone else's support if that someone else doesn't agree!
You know that your dad’s behavior is off. So does your husband. So keep moving forward on this. Press for more testing to be done.
As far as AL is concerned, I would just start talking them up and getting him to visit and be honest that you think it would be best if he wasn't living with you. My dad stayed through Covid but I always told him it was temporary because once Covid was over I wanted to travel and have more freedom and he needed a livin cook and housekeeper and carer. My dad is also a social guy so he was looking forward to meeting new people. He went willingly. I think he was bored of our quiet household!
Good luck!
The specialist has done much more extensive testing, I’m guessing? Much less easy to show-time his way through?
Maybe I’m not understanding the process?
I would go by what the neurologist says.