Went with my father to his doctor today, he passed memory test with flying colors! How can this be?
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.
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?
Hang in there. There is hope. In the meantime give him the care and support YOU KNOW he needs!!!
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!!
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.
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.
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.
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.
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...
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.
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!
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
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.
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
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.
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
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?
What you have to do now is speak privately with his doctor and tell him about how he can't reason very well and the accusing your husband of stealing all the time. Then ask the doctor to assess him again, but ask him to mention what his son-in-law stole from him and when it happened. The doctor will be able to see through the showtiming then. Make sure to tell the doctor about the driving too. If your father is getting approved for homecare services it's because he can't manage on his own anymore. If he can't manage his own basic needs and needs a homecare worker, he can't manage driving a car anymore.
Go back to his doctor and make him understand.
I know all too well the situation you're in the middle of and how others will think you're nuts. You are not.
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.
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!!!