Dad brings his ‘A’ game with healthcare assessments. Any advice?

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!

Pcp is helping by ordering assessments to try to get Medicare paid.

Medicare paid, what? Medicare paid, hospice? Is that for Medicare paid hospice services? Sounds like dad is not eligible.

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).

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.

Start by talking to his doctor privately without him present. He does not live independently if he is living with you.
He may not meet hospice requirements yet, but he will meet homecare requirements. Maybe even palliative care requirements.
Call for another evauation to be done. Then you do nothing for a few days. Let them see firsthand and for real how independent your father is. I know that this sounds kind of harsh because it is. Unfortunately, this is how our heathcare system operates and often this is the only way they will take someone seriously.

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.

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.

I so hope you have POA for Medical.

Dementia alone is not criteria for Hospice nor is it based in him not being able to not do what u listed "he still drives, makes meals, doesn’t have trouble dressing, toileting, etc." Many people on Hospice can do these things almost to the end but they are terminal so things can change on a dime. Medicare covers only Hospice and Rehab. Its a health insurance.

What you need is Medicaid and with him saying he can "drive, make meals, dress and toilet himself" means he does not fit the criteria for LTC or "in home" care.

My Mom never showtimed and always allowed me in to the appts. With her neurologist, I made a list every time we went. We did just what MJ discribed. The list was given to the receptionist. That way the doctor could ask questions around what I listed. He would ask her a question and then look up at me and I would shake my head yes or no.

I think you and Dr maybe looking at this the wrong way. Unless your Dad is terminal he is not going to get Hospice. I think you need to look at "in home" Medicaid or placing him in LTC. He needs to be evaluated by a Neurologist. He will run tests that will show Dad has a dementia. You should be present but if he won't allow that, then have that list. The Neurologist should see thru the showtiming. It should be documented that he is not capable of doing his ADLs that he needs help in that area. I would also ask that it be documented that he needs 24/7 care and that he cannot live alone and presently lives with you. And he is delusional when it comes to what he thinks he can do.

Once you have everything in writing, then you can contact Medicaid to get an aide in to help or place Dad in LTC.

Dad can have all his facilities and live independently to get Hospice. Hospice is for end of life comfort. Basic criteria is having only 6 months to live ir be actively dying. Yes there are those that live past 6 months and still remain on Hospice. Are any of Dads health problems life threatening? If not, thats why Hospice did not except him not because he lied and said he could do for himself.

You may need to look into Medicare intermittent care. A member said she was able to get it for her Mom and an Aunt, The PCP can document signs if Dementia, that he lives with family because he in not capable of doing his ADLs.

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.

Take videos and submit them to the authorities and consider baby cams.

Dad puts on his A game, and in 10 minute medical visits sometimes the provider is really only able to focus on one disease or problem. I often phrased it as "mom is giving you the answers that were right 5 years ago...."
Sound like you are managing it pretty well, and since you did get a bath aid ordered, and OT and PT, make good use of OT and PT.
Both can assess what he has for equipment and what he might also benefit from. They are great resources for stuff insurance usually doesnt cover...and the PT knows how to help PCP write the order in correct language to start the process of Medicare covering items that are covered. Another long process.
Given his weight and his preference for being in bed, when you pay privately for care at home you will likely need a CNA or certified HHA. Caregivers who lack those credentials 'help out' but very minimal physical care. Lots of cueing, reminders, distraction when needed, and socialization.
A consult with an elder law attorney regarding the impact of the sale of his house and his shared living in your family household. More nuanced than you can imagine...plus other heirs might be impacted, too. Good luck..

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.

I kept and still keep daily logs of what mom does well and not well. Documentation is key to helping me see the changes and being her advocate. Mom was in denial. I sent a summary statement and details to the doctor prior to every visit. It has been helpful for mom whose denial was not helping her. According to her she does paperwork, laundry, cooking and normal work. None of that is true and haven’t been for a while. After I did this everytime, the doctor finally got her on the best meds for her and finally were able to document her diagnosis. This is important for taxes and being able to have some of her care as a tax deduction. There is a time lag after diagnosis and prior to being able to deduct care expenses.

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.

you let him drive you are responsible for his actions on the road, he may cause a bad accident why are you not thinking about that?????

I’ve been right where you are. I typed a very detailed paragraph on my father ‘s progress each month or so before hospice came out to do their assessment. Professionals know their hospice patients will often sugarcoat everything, but they have to get information somewhere. If you don’t speak or or add your truthful assessment they won’t know what’s really happening. Self help skills deteriorate as dementia progresses. He may sleep more, get more confused, aggressive, anti social, experience more pain, eat more or usually less, etc. And then there’s the sundowning piece. That’s a whole other adventure to tackle. They need to know. If Dad has any other help they can write up a progress note, too. God bless and good luck!

It took three tries for my mother to be placed in Hospice. But from what I read, I just wanted you to know that you will still be dressing, making meals, and everything else for him, other than assisting him with a bath. Hospice care is more about quality of life than quantity. It sounds to me as if you may be needing pallitive care, which ususally comes out of your pocket to pay. I live alone with my mother, and eventually had to retire early to take care of her. Thank God I was able to do that. Unless you are ready to put him into a full time care center, or pay for someone to stay with him, you will still be doing the brunt of all of his caretaking. I don't understand it, but I know it to be the way it is. God bless.

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!

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."

Are you able to speak to his doctor privately about this? Explain the situation. When needed, his doctor also would be able to help activate POA, if that has been set up. Get connected with a local social worker and explain the situation, find out what his and your options are given his financial situation and his lack of truthfulness on the assessments. There are programs to pay family caregivers. There are also programs if your father is a veteran. Have a discussion with your father that his care is becoming to much for you to handle alone. You and he have 2 basic options: get in-home aides to help with his dressing, meals, bathing, toileting, etc. or placement in an assisted living facility. Much will depend on his finances, and hopefully you can talk to him about the need to be truthful on the assessments so that he can get benifits that he is entitled to. Some men prefer male aides. Medical alert devices may assist while you are not physically with him. All the best to you.

My husband pulled “showtimers” successfully with several neurologists before having a stroke (he stopped taking his statin meds and lied about it, which is a contributing factor in strokes). I came to the hospital neurologist prepared with a bullet list of behaviors I’d observed for two years & slipped that to the nurse to hand to the doc before he came in. Doctor gave me the wink & when husband got out of hospital, he gave him a cognitive assessment test during his follow-up office visit.

Husband also “mysteriously” got a letter from the DMV, telling him he had to come in for a driving test. Rather than fail, he suddenly decided that he didn’t want to drive anymore & I quickly got his car sold. He couldn’t figure out the new technology needed to start MY car, so that was safe.

Each time he went in for a follow-up, the doctor gave him the same assessment test (I forget the name but it gives a baseline measurement for cognitive decline). He tried to tap-dance his way through the first test, but couldn’t keep up the façade. He’d look at me to provide the answer & I would just shrug. It hurt to watch him struggle, but I was tired of trying to get help or even compassion from people when he would fool them into thinking he was “fine” & I was just being a nag of a wife.

These older generation people are trained pros at what they do so be on your best look out.

If you really really want to know how your dad is physically, pain wise etc., as is medically done and is simple you can test their reflexes to see if they are normal, if they let you test them, just say hey dad let’s test your reflexes to see if they still work, it’s how Doctors can tell if there is any central nervous system damage going on. When there is true CNS damage it shines through the reflexes (hammer on the knee etc), then there’s the rub your finger or pencil along bottom of foot to see how toes react, if toes go down then it’s normal reflexes but if toes flare up & out & away then something is wrong in the CNS (CNS is brain & spinal cord) (sorry you’ll need to research more about reflexes). The reflexes don’t lie as long as you hit it just right,

my reflexes shows I have upper & lower spinal cord lesions.

as for pain, theirs mild pain to severe pain and then there’s normal pain, and more but pain is pain soreness etc., older generation was never updated on the pain research, my father who is 80, no matter what he’ll fight to the death that his is worse, no matter what, pain, poor something broke won’t work, his situation is always more worse then the next, but my father doesn’t have “pain” what his problem is, is just normal pain from how our endocrine system works like lactic acid builds up in our muscles after a walk and rest or work and rest, stiff & sore, the older gen will milk it because they weren’t taught about lactic acid buildup and how our bodies really work

when I was a kid the horror stories id hear from older kids just learning medical degrees, I guess some older people like to mimic in old folks homes that would accept older men that could do things would be put in rooms with men that couldn’t get out of bed and shit where they laid, well the ones that could do stuff thought it looked fun to shit in bed too so they’d mimic the complete disabled one

some will go too far

Sounds like maybe your dad really doesn’t need all the help and tells the truth on the form but loves telling all his friends how much and what you do for him (because it’s embarrassing to them if us kids don’t) and the friends kids do it for their parents or he bombs it because he’s just got too much fear about others (strangers) helping him

I made the mistake of telling my dad a month ago that if I don’t have pain meds then I can’t get out of bed, which is true, guess what happened right after, he thought’d it’d be fun to lay there and holler until the grandson came and helped him out of bed. I got after the pair of them about it, and guess what he can get out of bed himself again.

my parents, if I send in caregivers for an assessment they will lie lie lie that they can do more then what they can or do do, it’s embarrassing to them, I’m soon calling the caregivers for my parents and I hope they have brains to know that my mother does not bake, she’ll gladly tell whoever she just baked bread the other day but whole time I knew her she last baked anything 35+ years ago, whole time I knew her she kept some baking items on a shelf but never used, intentionally bought and intentionally never used, I asked why when I was a kid, she said cause it looks better if people visit it makes it look like ya bake so people don’t think your one of those that don’t bake

the old gen, as they’ve said to me, “they don’t want to learn nothing!” so, can they be helped? Not really, but I keep trying, I get after my parents to wash their hands more but nope, they’d rather be sick, my dad will eat his boos if he thinks your not looking my newphew sees him do it all the time, my dad gets sick spreads it to mom and then they just both blame it on something else they must have eaten (boos & snot is a huge biohazard and will make you sick, sometimes deathly sick), MRSA can hide in our nose but if you eat it, won’t be long & death will come a knockin’

I recall some saying when I was a kid how some parents grew up to act out upon their kids of how us kids treated them while growing up

I hate to see my parents go but some just can’t be really helped at all, theyd much rather just be miserable

ive always tried to be positive around my parents but that just makes them talk to me less, misery loves company, so then I’m not good company at all cause i won’t join in on their misery escapade

AliceLS: The fact that your father gave his primary care physician untruths may have, unfortunately, put a wrench in the works. I am actually shocked that his PCP, who knows that he or she is seeing a patient with dementia DOES NOT QUESTION HIS RESPONSES. E.g. he tells the PCP that he still operates a motor vehicle and NOTHING is suspect about that response? Wow. Rather appalling. He should visit his neurologist.

"
Showtime" is the behavior that you are experiencing from your father. If the doctors talk to him longer than 15 minutes they would see what they were dealing with. It's very frustrating when you know what the real deal is ,concerning a parent's dementia but sooner or later The jig is up!

Create a log or journal of the activities you perform for him on a daily basis for a month or 2. Ask others to help with those tasks and to make entries into the log or journal as well. Use this to answer questions for any evaluator by making copies available.

My mom passed cognitive assessments for 2 yrs. She even could pass dementia testing yet was scary at home. She barely could do routine things at home safely. In MD offices she would switch gears to normal when seeing a doctor. Finally she stopped being her “public” {showtime} self at the doctors office and had a truly bizarre dementia discussion with her MD while we witnessed it. She was finally diagnosed with Lewy Body which has huge swings in cognitive abilities even from hour to hour. She still can go from confused to clear headed just walking into our church but later be very confused again talking about how the nuclear wars have killed people off all over our country! Ask about Lewy Body Dementia.

you might, during the assessment, ask for "proof" of his answers.
eg, "can you show your car keys?", "where did you drive to? " "is your car manual-shifted?" "what did you cook for dinner?" "can you locate the ingredients"
so that it might become obvious that he is not telling the truth.
take into account that he is not lying, but rather that he believes what he says.

Email his doctors re his actual levels of functioning. My father-in-law did the same. Would not let daughter who drove him to the appt go in with him for exam. 'Did he or anyone else have concerns about his memory.' NO. "Was he taking care of his finances okay?" Yes. In truth, Everyone knew his memory was shot and a son was taking care of all his finances. We'd already gotten permission to get onto their 'my chart' so we could email the doc. If you don't have that option, write a letter and drop it off at doctor's office. Eventually they went into AL where they got evaluated. I ratted him out to the facility prior to the evals of both parents. I was thanked profusely by the facility, told it would make it much easier to get accurate evals on him. Ya gotta do what ya gotta do.

A thorough neuropsychological examination would reveal any inadequacies or brain function decline. The assessment is conducted by a neuropsychologist and usually takes 3-4 hours and usually requires a referral from the patient's neurologist. The neuropsychological assessment includes activities that test every function of the brain. A complete evaluation administered by a competent doctor whose specialty is dementia will include tests that measure impairment, if there is any.

In the early to mid-stages of dementia not all brain functions are negatively impacted. For example, in my husband's case, his memory loss has been stable for six months, but his executive functions have declined. That is because his frontal lobe is impaired more and declining at a faster rate than any other part of his brain at this time. That is why some dementia patients can showtime. Eventually, show timing will be impossible.

I was able to convince my husband to participate in all tests administered by neurologist and neuropsychologist by explaining that a treatment plan for whatever was happening to him could only happen with a doctor's diagnosis.