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I need assistance taking care of dad. Numerous health issues are compounding and spiraling out of control. The future does not look good. He has dementia yet is highly analytical. I’m feeling traumatized by some of the stuff I’m now doing. I work full time. He lives with us.



Pcp is helping by ordering assessments to try to get Medicare paid. Dad answers questions falsely, eg he still drives, makes meals, doesn’t have trouble dressing, toileting, etc. In fact, I dress, mandate he showers, brush his teeth, he hasn’t made a meal yet alone served himself a prepared meal from the frig in over 3 years, his car has been gone for 4.



Hospice eval told me he has all his faculties and lives independently. I have never been so shocked.



How do I navigate this, especially when my Dad will dispute my correct answers during assessments?

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I'll be honest and say that we have begun just directly disputing any false reports that my FIL makes to the doctor immediately to the doctor(in front of FIL and just dealing with the fallout) Recently he was blessed to once again earn at home PT/OT and his "goal" was to make enough progress to be able to drive again. SIL looked him right in the eye and then said to the PT supervisor - "Let's aim for something a little more realistic like being able to get himself in and out of the car on his own. He is not going to be able to drive again, he's leaving out the fact that he's legally blind and they can't correct that. So why don't we start with something like helping him get out of the bed or get into the car and go from there?"

He will tell the doctor he dresses himself and we will say "define dress yourself dad". or he will say "I bathe myself" and we will say "he has a bath aide three times a week". We don't draw it out into a long drawn out conversation. But we don't save the conversation for later either. We have found if we don't address it in the moment, the moment is often lost.

There are unfortunately lots of things that he *thinks* he *can* still do for himself that he hasn't attempted to do in YEARS that we KNOW he can't do for himself. He can't stand without both hands on the walker at all. So when he insists he can make a sandwich for example or get himself a glass of water - we know that's physically impossible. We don't do it to hurt him or embarrass him, but we are trying to give the doctor a realistic understanding of what he is capable of doing - because the doctor really only sees him - in their office for less than 45 minutes at a time. And they only have what he says or we say to go on.

If they took what he said at face value - they would be treating a healthy 30 year old man with a 90 year old body. (that rides in on a mobility scooter, can't stand up, hasn't been able to get on their scales in years, weighs over 300 pounds, is insulin dependent, takes over 20 medications, is legally blind, has hearing aids, is in the bed 15 hours a day, and has at least 12 comorbidities)

So while he may dispute your correct answers - at least in our case - my FIL's doctors have told us - and him - that our input is important and balances the picture for him because he knows what FIL tells him is rarely reality.
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AliceLS Sep 13, 2022
Thank you x3. Great tips and reminders for me to navigate. We are experiencing the same thing. I think your approach is perfect. I forget to have to constructively parent my parent.

good news is that I do have bath care now 3x per week and ot/pt is starting. I’m not expecting much of the latter as he has no goals. But at least he’ll be clean and someone else can help him get dressed!
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Before we'd take my mom to the doctor I always would email the Doctor with a list of concerns, so she'd have read it before we even walked in the door. (Do it a couple of days in advance, and note the date and time of the upcoming appointment.)

Then on appointment day, I'd sit out of Mom's line of vision to take notes of her conversation with the doctor. I wrote many notes and held them up behind Mom's head for the doctor to see, shook my head yes or no if Mom's responses weren't accurate, and then I'd follow up with another email if necessary. It worked well for us.

You're dealing with dementia here, so the PCP should be taking their cues from you, not Dad. Sure, Dad's the patient and the doctor should talk to him, but your job is to provide the actual facts. Put them in writing so there's no mistaking what those facts are.
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ImaGranny Sep 15, 2022
Just how do you find doctors that will put in all that extra time like reviewing lists and emails? Wow! Mine (yes I am the Senior) barely remembers who I am, even with my file in front of him. I am constantly asked things that are right ON the first page or summary. I have significant health concerns but not dementia and I do have someone with me because I don’t drive…. Time to change doctors I guess. But in a large integrated healthcare system are there really any that care truly about us Seniors?
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As others have noted, not sure why hospice is what is being considered for his care? Does he have a terminal illness and with only a short time left to live? If he is at the "end stage" of some disease with death impending, hospice may be appropriate. IF NOT, then other care is likely more appropriate. Depending on his needs; that could be aides at home, adult day care type services out of the house or perhaps long term nursing home care. Given the type of help you say he needs daily and around the clock, assistive living even a high end facility may not work and certainly will not work over the long term if he has dementia.

No offense to the PCP, but I would strongly suggest having him see a board certified geriatrician who can do a full assessment along with ordering more expansive tests for dementia (other than just asking him what he can or cannot do OR just performing the 10 minute draw a clock task, or ask what is your birthday or who is the President type easy questions). But as others have said, best to have the legal paperwork done well in advance before he gets the official dementia diagnosis if that is what he has. Make sure you have a durable power of attorney to handle finances and other stuff for him, and advanced directive naming you as his health agent, will or trust, etc.... Get with an elder care attorney for this and any Medicaid (not Medicare, Medicare does not pay for long term nursing home care) planning to pay for his care if needed.

When my mom was going through her physical and cognitive decline, we found a great board certified geriatrician and who was board certified in internal medicine physician. She, scheduled a full battery of tests with a geriatric psychiatrist, neurologist and clinical psychologist. The studies and imaging were about 3 hours long over two days. The team also asked for reports from me as they wanted to know what I was seeing/experiencing as many with dementia do not see their own limitations at all -- this is called Anosognosia. It is not lying per se but their brains as part of the disease actually do not see -- no awareness -- of any limitations at all. It is their reality, they are not intentionally lying.

In addition to Anasognosia, my mom was very prone to "confabulation." Again, not lying but with confabulation the brain basically makes up and fills in a narrative or story line when there are gaps in memory. They are not intentionally doing this, it is the damaged brain just taking over and filling in memory gaps. My mom's confabulation was was totally illogical and fantastical, but to her it was all real. These fantastical stories came out more in these longer psychological tests when she was more fully assessed.

In my mom's case, she totally believed she did not need any help at all. Two years later, she still in her mind's eye needs no help. She is in a long term care facility now w/Medicaid paying after spending down what limited assets she had. She can walk about 5 feet with her walker but cannot do much of anything else. She rants that "they do nothing for me here" at the nursing home, that she is "going to get out of there and go home" and then, "she can take care of herself." Of course none of that is real, but it is her reality just like her "TV friends" are her actually friends now. She had lunch with Martha Stewart yesterday, YES that Martha....The staff there are great, when she confabulates like w/her lunch friend they just say "how wonderful" hope you two had a great time....

It is what it is. Good luck with this journey, it is NOT fun.
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WOW! been there done that. Dad is showtiming... meaning he shows off for the medical profession or visitors. As said in another post you need to state to the professionals what is really going on, you may need to talk to them privately before or after that appointment. This is how I got several doctor appointments when the doctors thought everything was good. I had my Daddy resign as Trustee of his living will and I took over all I mean ALL medical, and financial of his life. He hated me and he let everyone know. But he was clean, he was safe and he lived four years under that care. The last year he was alive he praised me and let me know he loved me. I know that he did and when he said he hated me I know it was the illness of ALZ that was talking. Blessings and prayers for you and yours!
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Alice, I’m not surprised that you were shocked! What did you do about it? Have you sent to the Hospice Assessment manager the same summary you gave us? That’s the first approach. If they won’t budge, try a different Hospice service. Is the assessment limited to Hospice – which is usually looking for prospects of death within 6 months, not ADLs.

If necessary, you may need to give a demonstration. Leave Dad in bed, with his clothes to change on the end of the bed. Breakfast things on a small table out of reach of the bed. His expired driving license? When the next assessor arrives, get him to demonstrate his hypothetical skills. What a schemozzle, to use my late mother’s expression!
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Clairesmum Sep 13, 2022
as a hospice nurse, I want to clarify that there is a long checklist of required assessments to determine eligibility. The attending MD writes the order for hospice care....but it is the admission nurse's responsibility to gather the data that justifies hospice eligibility. Hospice medical director and referring MD will converse, to come to a plan. Even if he needs help with ADLs and IADLs, there needs to be some symptom to be managed or having unstable changes or signs of disease progression. This gent may have 'fooled' the admission nurse....and the skill level of nurses varies widely.
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When my LO was initially assessed, the examiner “invited” me to join their meeting together, and seated me slightly behind LO, so that I could nod “yes” or “no” to my beautiful and VERY shrewd LO.

The examiner got a comprehensive picture of the gaps in my LO’s cognitive landscape, and was able to prescribe medication that lightened her psychological burdens without drugging her senseless.

My LO had an excellent pcp who recommended the services of a geriatric psychiatric “expert”, so it may be helpful to ask yours (tactfully) if a more intensive assessment might be warranted.

This was also an eye opener AND VERY HELPUL, for ME, as her POA.

Good luck with this. Tough territory for caregivers.
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AliceLS Sep 11, 2022
Thank you! Excellent idea for me and I appreciate you sharing.
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Margaret McKen is right -- make him demonstrate his proclaimed abilities to the assessor. These are done in-person, correct?

My mother could showtime. I honestly think that when her doctor saw that I the daughter took her to appointments, that I would make sure all was well. Even when I was ordered by my mother not to go into the examining room anymore with her, I think the dr. still made that assumption.

When she was hospitalized for 17 days and the OT and PT would say things like, "We're going to get you home!" I was very concerned. My friend's H (an MD) told me that when they gave discharge instructions, that I insist that I wasn't going to be there (my mother would have a permanent gallbladder drain), and that my mother must demonstrate how to change the drainage bag (and other activities). I'm sure that otherwise they would just give ME the instructions and assume I would be there. That is exactly what they did when the drain was inserted. Although I said several times that I didn't live with her and didn't need to know how to change the bag or what to do if it was leaking, I was asked, "Well, you are going to have to know if your mother calls you in the middle of the night." They also tried to show me how to attach a bag to her leg so she could walk more easily. Of course, during all of this my mother said nothing, as she was beyond comprehending what any of it meant.

I complained to the hospitalist that people were acting like she would be going home, and she told me that they weren't looking very deeply at her cognition, and that she would not be going home. Whew! She went to a rehab center, then transitioned to LTC at the same place (NH).
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AliceLS Sep 11, 2022
Wow. I get it. I’m glad you had a good outcome.

I grew up in a medical family with one and nurses all around. I have caught on to the system as you describe. I’m non medical yet often spoken to as a nurse. I’ve started playing dumb.
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The tests for dementia, the REAL tests, don't allow for this obfuscation. They are such things as "draw a clock set at 10 minutes after 11." Or identify these animals. Or count backwards by 7 from 100 five times. Or spell Forum backwards. So it is hard to get past a real exam no matter the confabulation, and confabulation is very very common.
I am sorry you took your Dad into your home, because legally that is now HIS home. I would attend a few hours with an Elder Law Attorney to decide next steps. They may include placement, but that will be no easy task with your Dad.
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AliceLS Sep 13, 2022
I hope you don’t feel I’m not willing to take care of my dad any further. He is in our home and I’m grateful for it. I have POA. He has been diagnosed with dementia (and a slew of other battles). The intent is to keep him here until he can no longer be here. I’m simply an executive with high demands at work and it’s time for help.
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I went through this last year. I wrote very detailed letters to the doctors before the visits and faxed or emailed them, so they knew what was really going on. Start keeping a diary of what they do (or don't do) and day on certain days so that you can document these things to a professional if necessary. Good luck.
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Phone video and/or a baby cam will be evidence for an Adult Protective Services evaluation.

BTW, I believe they call that performance, "Show timing or just show time."
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