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I would go to the Office on Aging and a social worker and discuss this situation with them. I do know people sometimes can appear perfectly normal and they really are not. I would have the neurologist write a letter of details directly to your doctor. If need be, get another doctor involved. And as to the car, have someone secretly do something to the car to "disable" it. And find ways to hide and take the keys away. You must take care of yourself and your own doctor has to help you with this situation. BAD, BAD mistake taking someone like this into your home. Now you have to figure out what to do to get him out of your home or get caretaker to tend to him. Please seek some professional help as to what to do to protect yourself first.
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Riley2166 Apr 2021
And in the meantime, document every incident with time, date, place, etc. and if possible have some witnesses seeing this too.
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People with Alzheimer’s Disease/Dementia have periods of lucidity. The doctor or neurologist should have told you this fact. Now that you know your problem as documented in your post. What do you want to do about it? Who has POA? If not, I would get it done as soon as possible without it you will be powerless. I am not sure why you are mixing social security with long term care (social security provides income, not long term care.) Maybe you mean Medicare and/or Medicaid, unless there is LTC insurance policy. You need to meet with a social worker and/or elder lawyer to review your options with your father’s situation.
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disgustedtoo Apr 2021
"...not sure why you are mixing social security with long term care..." I just posted a comment on this, because I missed it or glossed over it the first time through... It was the DOCTOR who said that crap, not OP. He also said the care-giver can give her dad medication, which is ALSO crap. CNAs cannot dispense medications.
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Juse let him live his life.

If he's still driving then you should step back and let him do what he wants in his own Guest house even tho it may not be what you want him to do.

Sad getting old and even sadder when having to go into a Nursing Home where they are understaffed and your loved ones gets over medicated.

Prayers
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Frances73 Apr 2021
How many people have to die or be injured by this man before someone stops him from driving?
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You need to find another doctor to help you. We had same issues. Changed doctors and making strides with getting help needed for my mom.
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Is your father more lucid in the morning And gets worse as the day goes on. My father had alzheimer's but he was more lucid in the morning. If you need doctors to see his memory is nnoot the best then make appointment in the late afternoon.
We never know what we are getting into not the stress we will have unless you have been there. Hire a home care to come in for a few hours each afternoon. This will give you the better relationship for when he is at his best. And a rest ful time in the afternoon.
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My Mom was well into her Alzheimer's disease, but when I would take her to the doctor's office, she seemed to have the ability to act relatively normal. When the home health nurse would visit the house, she would be so sweet and cordial that you would think that she didn't have anything wrong with her. But as soon as the caregiver would leave, she went right back to her Alzheimer's mannerisms and I called it 'hostess'.
It blew me away. It's like she knew what she was doing, was she playing me for a fool? What I did was get some video of her misbehaving, just in case the doctor had any question to what I was indicating.
I do not know if your seizures are caused by your caring for your Dad or not, but a high number of caregivers die before the person they care for does and if you have any underlying issues they will become exacerbated and you need to take care of your self or you'll never be able to care for anyone else. Good Luck
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My mother in law is competely okay in front of her doctor but at home it is a different story.I do not know how they can do that or if it is just human nature to be at your best in front of authority. My mom used to do the same thing.She no longer recognized me but when in front of her doctor could act normal. We disabled her car because we did not want her to be a danger to anyone . You need to get him in a facility it sounds like you need the break.
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Your Dr. doesn't think you are the crazy one! The doctors in-office screening test is easy to pass and is not definitive for Alzheimer's (or other dementia). Many older adults with MCI (a mild cognitive disorder common among the elderly) can pass it easily. Can you return to the neurologist for more information and/or help with the dementia diagnosis?
Some of the problems you mention are those frequently encountered by elderly people and are not necessarily signs of disease. It's not uncommon for older people to forget how long something has been in the fridge until it has actually molded! (You might help him label items with dates). And it's not necessarily a sign of dementia to forget medications. Have you tried helping him set up a "medi-minder" with 7 daily compartments for meds often marked AM and PM? That's no guarantee he won't forget, but it may help. Elderly people (not necessarily dementia patients) sometime misplace items, and in their frustration, assume someone must have taken them. This, too, is not uncommon.

The driving difficulties are more serious and should be addressed. You are only asking for trouble, however, if you try to take his car keys! Anyway, as you said, he has extras. Telling him he should stop driving (and give up his independence) will likewise meet with resistance.
You must talk to him about what you have observed and your concern about the dangers e.g. running red lights, exceeding speed limits. It's a safety issue. How will he explain this to police when stopped? He could lose his license. Worse, someone could be injured...or killed. Could he stop in time if a child should run out into the street?
Research other means of transportation he could use such as a bus or community transport for elderly or disabled, and suggest these or help set them up. If possible, offer to drive him to shopping or appointments (within reason, of course). You probably already do this. Just try to offer him some alternatives to driving everywhere instead of just demanding he not drive.

You were kind enough to offer him your guest house. And sadly you didn't know you would be having such health problems of your own...nor the difficult behaviors he's experiencing. It's a tough situation. Not at all easy. If dad truly has dementia it may not be long until he needs in-patient care. But, in the meantime, do what you can to help him stay safe without antagonizing him. The last thing you need is an angry, uncooperative and confused father resisting everything you try to do to help him.
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I’m so sorry you’re going through this. As people age their long term memory gets very keen. It’s the short term. Dementia is different for everyone. The last year of her life it was bad. And at 90 she insisted on driving. There is a dept of the DMV that deals with aging drivers. Search “Senior Drivers” with DMV and your state. They will send him a notice of his license being suspended. Anonymously. Like someone saw him driving erratically and sent in a complaint.
As for the accusations of stealing... learn to let roll off and ignore it. Your reaction to it keeps him motivated to keep on.
You are a blessing for him and don’t be shy reminding him of it. And get a caregiver ASAP.
with love and light and strong energy, Sabrina
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Lisah13 is correct. You need to take your dad to another doctor for a Second Opinion. In my case, my mom had been friends with & going to her doctor for years, so that doctor believed mom when she told him that her kids were trying to put her in a Nursing Home (not true, we were encouraging the next step of Assisted Living in spite of her worsening dementia). So her doctor friend would give her questions about her childhood for her cognitive test -- nothing more recent -- so he knew she would pass. He never asked her to draw a picture of a clock with the hands pointing to 2 p.m. or about what she had for breakfast that morning, or to remember 3 items he would tell her and after 10 minutes of other conversation, ask her what the 3 items were. THAT's a real cognitive test, but he would not do that. However, the 2nd opinion doctor did, and he was very helpful in letting us know how advanced her dementia was and even told her not to drive anymore. He told her that if she could go to the next big town and pass the Safe-Driver's Test, then she could drive again. She knew she could not pass, so never asked to go. She still would try to drive even though she was dangerous, so we put the Parking Brake on and she did not have the strength to release it, and when, at first, she managed to get into the driver's seat, she did not realize that was the problem. She would tell me "There's something wrong with the car; it won't back up." I'd tell her, "I'll get it checked out," but I would always be too busy to "get it checked out." :-) Later my brothers & I also parked the car so the driver's side door was along the edge of the driveway & whoever got in to drive it would have to walk on the grass to get in. She was not able, with her walker, to walk on the grass and was afraid to try. A couple times I watched her through the window and she got discouraged and came back into the house. However, if your dad is strong still, you'll probably have to disable the car (loosen or undo the battery cables or something).
If your dad is able to go to a Dining Room, you should look into an Assisted Living place for him where they do Meds management & his laundry & has social activities. I will tell you that if you can find a more personalized Assisted Living facility that has a good CNA to patient ratio, that would be a lot better. Also, if your dad served in the military during a war, you can take to him to the Local VA Rep Office and apply for Aid & Attendance Benefits (NOT Disability, but Aid & Attendance Benefits) to help pay for caregivers in the home or for the CNA's at a facility. In addition, you can go to the local VA Medical Center & speak to their VA Social Worker, she can advise you on options too. Best wishes, dear one. Take care of YOURSELF FIRST.
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disgustedtoo Apr 2021
What an idiot that doc was. Most won't get involved in the car/license issue, but to circumvent the testing, so she appears to be fine? He's lucky her driving didn't impact him or his family.

That test is okay, sometimes. In the earlier stages, too many can pass that. It doesn't test ALL functions, and if they can still do those things the test is for, they can "pass", but still be a hazard to themselves or others!
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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.  I asked him what about him harassing my husband and accusing him of stealing? He said the caregiver can give him anxiety pills."

First pass through, I missed the doc suggestions here...
SS office to get LTC and caregiver? This doc is OUT OF TOUCH. SS does NOT provide anything for LTC (nor does Medicare) or a care-giver. Care-giver can give him pills? NOPE. Most assistance hired are CNAs and they are NOT allowed to give medication. Stick to doctors who have experience with dementia. This clown is okay, maybe, for regular PCP stuff, but clearly NOT dementia.

In your reply about court testing not finding memory issues - they would hire specialists to test, not a PCP and it would likely be much more intensive testing. The problem with dementia is they CAN often appear normal, for short periods of time, such as a doc visit, friends or family who rarely visit and don't stay long, etc. As it progresses, they are less able to cover these short times periods, but a REAL test isn't going to be that stupid 10 minute one they do in the doc office.

Don't be so sure about some ruse working. If you say you need to do renovations or get pest control treatment done, maybe. Maybe leaving some dead bugs around or something - I do know some pest treatments require being out of the house for a few days. I had one suggestion to get mom to "temporarily" move (of course it wouldn't be temporary), but injuring her leg and needing to be seen and treated for the infection got my YB to make up a letter from a phony hospital service. She was NOT happy, felt they should help others who need help and leave her alone, but she went with the two brothers to the MC facility. If you make up a letter from a pest place, detailing what needs to be done, including temp move, maybe? Never say never...
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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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Perhaps I know how you feel! I’m sending you hugs and prayers, because it isn’t easy to make a decision to change your caregiving role — especially when you believe you should continue providing for a loved one completely.

My husband’s neuropsych eval in Sept indicated he was in much better shape mentally than he really was. We were together 24/7. My documentation, emails, photos, videos, texts, etc., during the 6 month period June-Nov — and my sharing all of that with his professional healthcare providers plus close family and friends during that time — was my way of coping. Plus, it helped me and others observe objectively that the neuropsych results were somewhat insignificant.

When he needed ER and hospitalization in Dec for his many other irreversible conditions, added to his mobility disorder, I knew he required a level of care that we could no longer provide at home. He almost died twice after that, with upper respiratory infections and complications. He has been in 6 facilities during the 5 months which included his December hospital stay. Two of those have been long-term stay, skilled nursing facilities.

You cannot sacrifice your own health and well-being for the purpose of being someone else’s caregiver. When you realize that is exactly what you are doing, it’s much easier to resolve to change your situation. In fact, you continue as the caregiver, to monitor his care wherever he is, and that can be very taxing if the patient is very demanding and frustrated.

I hope you will take care of yourself and your husband, which is what you and he deserve and need. You have a life with plenty of your own challenges, outside of your caregiving role.
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Hi Martz06 I can so relate to your post. We had almost the exact situation except that my FIL had not been diagnosed. My FIL’s doctor believed his lies & thought we were financially abusing him. My FIL is quite charismatic and tells a good story. He was able to hide his confusion for a long time but we saw the results of it. We went to a second doctor (without my FIL) with 5 pages of incidents revealing the cognitive disabilities. This second doctor said my notes were “gold” and as carers we could do something. He advised us to go to the mental health service (this is in Australia). They assessed dad and then booked him an appointment with a psychiatrist. Based on the results they them advised he be sent to a specialist aged care unit to get an assessment. 3 weeks later he was assessed as having vascular dementia with frontal temporal damage. Once the assessment was done they recommended he no longer drive and POA and POG kicked in. When are now able to care for him properly. With us he is often aggressive, regularly accuses us of stealing and lying to him. He had 8 speeding fines in 2 years & wouldn’t pay the fines. He kept running out of money because he was spending so much on lotto! My suggestion is document the incidents and talk to another doctor, one who is experienced with dealing with the elderly. Get a referral to a mental health agency and hopefully you’ll get the authority to care for him properly. We now have level 4 care and things are much better. We are now waiting on a place in an aged care facility. I hope my experience helps you in some way.
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So sorry you are going through this. But the first thing you need is a new primary care physician for your father!
Social Security does not do anything with long-term care. It is purely a health insurance. Document all of your father's eccentricities and then find a new geriatric primary care physician for him send them the notes first and then make an appointment for your dad let's see if a second position comes up as far off base as the first.
Should your father be diagnosed as needing placement in a long-term care facility, if he is a veteran check out veterans benefits. If he needs assistance in paying for his care you would have to apply for Medicaid. Medicaid is handled differently in each state so you might want to check with your Office on Aging as well as your Medicaid office in the state of your father's residence. Sending you and your husband hugs and good wishes on this difficult Journey.
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The first thing you should realize is at that age most seniors don't survive an automobile accident. Our Dr was quite specific on this issue. It's hard to get it through to them and they really get depressed after losing their mobility. They feel robbed of their freedom but robbed of freedom is better than loss of life. Find the statistics and show him how harmful it could be for others and himself.
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Don't take the keys. Disable the car and put a note under the hood (if he is not the type to look under hood) that says, make excuses not to repair because dad has memory issues.

Some folks can become clear as a bell in front of medical staff. Who knows how they do it, but you know there's a problem. Motor vehicles will not remove a license when a dr doesn't document the medical reason. Otherwise, they would be able to take a license any time someone complained about another's driving.
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update: this pcp doctor is incredible. He called and left a message. Said my father does not have dementia because he passed his test he gave him (even though the neurologist 2 years ago says he does with more extensive testing). He said any messages or letters from now on will be passed to the patient to read. Unless I truly feel my father is in danger then he will have to call adult protection services (there is no need for that I am poa). Does any of this make sense?? I called area on aging today and asked him to be assessed. I hope I can get some help there.
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BarbBrooklyn Apr 2021
I think I would be in touch with the neurologist and ask for her/him to be in touch with the PCP.
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Another update: Area on agency says I can hire a caregiver but if he has to let them in (he’s already refused). They are telling me they do not give assessments, his doctor would do that. His pcp is not willing to help. He refuses to go to a specialist because he remembers they diagnosed him with dementia. So I asked when is it time to call adult protection services? She said when he’s in danger to himself. She didn’t seem to think forgetting meds would constitute a danger. So what am I left with? Wait until a fall lands him in the hospital and tell him he will have to go to assisted living at that time and arrange it for him since I am poa?
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That Doc is NUTS! those suggestions that SSA would cover long-term care, or caregiver can just give anti anxiety drugs to the elder, etc., are FICTION.
Find a better PCP! Get other opinions.
If a Neurologist pronounced the elder incompetent, have them confirm that to the PCP, so both have that info.
But otherwise..

An elder taking breaks during the evaluation might be key, sometimes.
IF the elder being evaluated is good at keeping up appearances for a time length, you MIGHT need to do some creative documentation...like taking covert videos using your cellphone, or, a webcam.
Or, keeping a DAILY diary of things he cannot do anymore, writing down each thing. A diary or calendar with notes written on it, counts as evidence in a court--so it should help track how often and how bad the brain glitches are.
My mom totally fooled hospital staff for 2 days when she was in an acute hospital, and, she totally fooled 2 social workers who came to our house to evaluate her, for TWO hours [she took a few "potty breaks", but more so they couldn't see her losing it].
She was able to "take a small break and regroup her thoughts", to keep appearing that she was just fine, mentally...but to look at how she handled [didn't] her affairs, or her room, or anything else, was a giveaway.
And, she refused to allow them to see her room--if they had, they'd clearly see she is not handling her stuff very well at all.

If those doing an evaluation cannot see the episodes, you must have some kind of evidence that documents those glitches, so you can show them.

Someone does not need to have total dementia, to be unsafe living alone [mom spilled oil down under the electric stovetop, which caused a stove fire, for instance; because she did that, and also melted a pan, and often left burners going unattended--unsafe!]
Or they might be a fall-risk.
Or, they cannot handle managing their own financial and daily matters [need examples of why they cannot manage--like bills got lost, desk piled with unopened mail and bills, utilities get cut for non-payment, insurance lost for non-payment, belongings piled in jumbles everywhere or filth everywhere, etc.]

Docs cannot pronounce someone incompetent, without evidence they can see or understand...and really hate doing it anyway.
They cannot simply take someones general report of it...they need to see it. So most try to weasel out of pronouncing on people unless evidence is strong to support it.
One relative got pronounced incompetent by her neurologist, but her PCP did not pronounce....so 2 of her kids USED that to manipulate how she was treated, and, what legal actions they could take to manipulate her estate....it got ugly, and as never resolved properly....SO...be sure that if ONE doc pronounces, that their other Docs also know it, so all are on the same page....Unless one is intent on doing questionable things regarding the elder and their estate.
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marymary2
on Apr 19, 2021 wrote:

"I don't know what that test is, but my mother was asked: do you know where you are and what year is it. She passed."

That is NOT a test. If her doctor thinks this is sufficient, she needs a new doctor!

Even the test generally given by your PCP isn't enough. It creates a baseline the first time, and can identify changes over time, but it doesn't identify all deficits or needs. The one our doctor used requires a lot more than 'where you at' and 'when you at'. For instance, draw a clock, with hands showing a given time they state, words to memorize and then later repeat, and MORE, but NOT nearly enough. Knowing you're at home and it's Tuesday in 2021 doesn't cook dinner, doesn't pay your bills, doesn't help you know whether or not you took your meds today, doesn't help you operate the phone or the remote, doesn't help you to know that you've repeated the same question or statement 10 times in the last few minutes, or identify people you should know!

The test the nurse from aide agency gave mom was much more involved (done in her condo and paid for by Medicare, both the nurse and the test were covered.) It was designed to identify deficits AND assess needs.

The comment I posted that included "Person, Man, Woman, Camera, TV - OH I'M A GENIUS!!! Where's my trophy?" was making fun of #45. Those were the words he had to repeat later. HE thinks he's a genius (even before the test) and because he did okay, thinks it's an intelligence test (WRONG!)

Again, scoring on this test isn't a grade like A, B, C. It is to identify deficits and changes, so a lower score that might seem like a "C", which would be an "average" grade in school, is not good at all!

At some point that clock drawing may have to change to something else. More and more people have digital clocks and watches, or just their phone, also digital representation of time. Who knows how many kids who grow up won't be able to draw a clock in 20, 30, 40 years! "Draw a clock showing 2pm." Person draws 2:00PM!!
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I fully understand!!!! It took me over 5 years to have a doctor confirm a dementia diagnosis. It was only because he asked her a question that she gave an odd answer to that he was willing to test her at all. Fortunately, inspite of the good show she was putting on, that answer made him willing to test her. After over 5 years of being forgetful and irrational, and being a danger to herself, she finally failed the test. The shocked doctor said her dementia was advanced and ordered MRI, EEG and prescribed medication. Better late than never.
Hang in there. There is hope. In the meantime give him the care and support YOU KNOW he needs!!!
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My mother passed several of them. Each time I begged: "Ask her to pay a bill. She can't. She forgot how to do that. Ask her to check her email-- she can't. Ask her check her voicemail. Ask her to make a doctor's appointment and schedule transportation for herself. Ask her how much money is in her bank account. Ask her to do anything that requires more than one step.
I ended up saving every voicemail she left for me and I serendipitously/accidentally caught speakerphone conversations with her as proof. And those moments of lucidity?? They knock me over like a steamroller, you know?
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