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He seems fine to me...
My dad is also high functioning. So much so that a social worker even said (I kid you not), "I don't know why they sent me; you seem perfectly fine to me!" *facepalm*
What I've had to do is say to Dad, "Okay, Dad, I'm going to walk [whomever] out to their car. I'll be right back." I'm fortunate in that he receives almost all of his care in home. Anyway, this satisfies his chivalrous, must be a good host feeling and it gives me about two minutes of uninterrupted time with the professional to say, "I'm sorry, but Dad is on the cusp of stage 6 Alzheimer's and I hate to have to tell you this, but almost everything he said in there is not true. Here is what's going on with his health:..." I have the names of his doctors available and have made sure the POA or Dad has signed a release for coordination of care.
If it's a visitor, I'll find an excuse to go outside for a minute such as, "Hey, Dad! I'm going to go show Melissa those fabulous ranunculuses that just bloomed out in the back. We'll be right back!" Then tell Melissa what's going on with Dad and what to be prepared for.
I know that since you're remote it won't work for you all of the time, but if you're there, it's something you can try. If you're in a doctor's office, give the nurse a note saying you need to talk to them privately as the doctor needs to know a few things you can't say in front of the patient. If they know he has dementia, they should be willing to do this.
Good luck to you.
@SunnyBeBe - he currently lives in a retirement community in one of their independent-living units (they call it a villa, it's basically a duplex). An example of questions they ask where he'll offer a slightly false reply is like when they go over the medications list - he has a ton of supplements listed from years ago that he no longer takes, yet when they ask him he says he still takes them. In that particular scenario, I've asked him outside of doctor visits if he takes them (he says no), and when I visit every two weeks I check on his meds etc. and I don't see any of the supplements listed. Another example - several times a week he'll tell us he's feeling blue or depressed, yet when asked by anyone from his care team he'll minimize it or say he's totally fine. And he forgets major health events and timelines, but rather than saying he can't remember, he asserts something else with confidence..
Doctor- So mom whats your birthday?
Mom-7/1/1937 all confident
Doctor: Very good giving me the you are nuts look
Me: Mom, what month were you born in...
Doctor: Who is president
Doctor: very good giving me the same look
Me: Mom who did you vote for?
Doctor: So are you driving"
Mom: Yes! Drove here
Me: Shaking head no, mouthing behind my mom, its been a year...
FINALLY the doctor was like ohhhhhhhhhh
Thanks, @gubblebumm! I'd forgotten the classic standing behind the patient if you're at the doctor and gently shaking your head every time they say something that is not true. The doctor can then ask you to step outside afterwards to give the correct answers.
I also stand behind my Mom at doctor's appointments and shake my head "no" if her answers are incorrect. Sometimes, I just have to flat out say the correct answer if it's not a yes or no question and she gets it wrong. For example, at her last appointment, the doctor asked when she stopped smoking. Mom's response? "2030"
And, may I just say that I'd love to slap everyone who has ever told me "She seems fine to me...."
"Oh, really?" I'd say. "In the 2 minutes you just talked at her for the first time in 5 years? Did you not notice she actually didn't say anything during your monologue?"
I know they are trying to be reassuring and positive but what they're actually doing is saying that I'm making a big deal out of nothing and/or that I'm lying about her condition.
Let me just show you her doctor's diagnosis....
My DH with Alzheimer’s was very much the same, for years. Mr. Personality, always smiling. . He can still seem very normal—for a few minutes, unless/until someone tries an actual conversation, or something that needs more than a yes-or-no response.
He can still smile and nod with the best of them; a quick encounter and you’d probably never think a thing was wrong.
Basically, it took a full-blown neuro work-up, hours of testing where he had to do more than give a short answer. And the brain scans showed enormous loss.. His PCP response was something like “huh he sure fooled me. Next.”
It was so frustrating, because no one would acknowledge he had any problem, which as you know makes it harder for the caregiver. It is exhausting. You just have to plow through. And a good therapist helps.
Now it’s more obvious to more people, if they do more than say hello to him they can tell. But before, it was just hellacious. I’d tell people he had Alzheimer’s and they’d go, “oh but he looks so good. And he just said hello to me.”
Yeah, and that’s ALL he said. “Hi.” Then nodding. That’s all he did. They don’t know somebody had to bathe him, get his clothes on him, schedule his appointments and drive him. Etc etc etc.
(So many think Alzheimer’s is all or nothing. Alzheimer’s means bedridden, nonverbal and drooling, in their view. Otherwise, they’re just “forgetful”.or something.)
Only people who’d dealt with it could understand. I just had let a lot of things he did go; try to weigh which ones really needed time and energy. If he just wanted to tell made-up stories, he could. I tried to focus on what had real effects on health, safety and financial well being. It’s really hard.
Justlikemom—we were writing at the same time, what you said about wanting to slap somebody is SO TRUE. It’s what I was trying to say.
People really don’t seem to notice the person with AD said absolutely nothing, except maybe yes or no.
And the brain scans showed enormous loss.. His PCP response was something like “huh he sure fooled me. Next.”
This is very bad especially coming from a professional. This goes to show that we have to take what they say with a grain of salt.
I’d tell people he had Alzheimer’s and they’d go, “oh but he looks so good. And he just said hello to me.”
This is so true. The public and many professionals are only familiar with late stage Alzheimer's Disease. There is little public support for PWDs and family in the community. As frustrating as it is for caregivers, it is traumatic for some patients like me. Although I don't have AD, I do have significant memory loss that affects my ability to live independently.
Also, many family members rely on these "conversations" over the telephone to assess their LOs abilities at home. They need eyes-on to fully assess.
I note that doctors usually ask general non-specific questions. It is not important if the PWD knows who the president is! Ingrained facts such as a birthdate are easy to be retained in dementia. The doctors really need a nurse or social worker to inquire in depth regarding instrumental ADLs, especially for the PWD who lives alone, IMO.
I type a note before each doctor' appointment. For new docs, I tell them she has dementia but likes to be in control during an appointment, and likes the attention to be on her. Then I describe what is going on that is relevant or ask my questions.
She frequently tells people she still plays golf and drives to her house in VT (which she hasn't had for quite a while. That's fine by me.
On occasion I do have to contradict her or remind her (if her pain is standing but stops sitting she will say she has no pain, for instance). Sometimes I ask her permission to speak. And I remind her that I am her assistant.
I have a brother who doesn't get it. She puts on a good show for him I discovered. Whatever. Medical and assisted living folk all get it and that is what counts.
ummmmm.... so true about panicking when she can't see me.
My mother is the same. I need to tell everyone who deals with her that she is not as cognizant as she appears.
I learned that it's called 'hostess mode' (or, I presume, 'host mode').
So now I always tell them that she has excellent hostess mode and not to be fooled (although it has started to fray in the past few months...).
I always got info to the Dr before the appt and took a copy with me. I also had a current med list that I handed over. Most Drs here will ask you to bring all meds to the appt.
Is your father's neurologist expecting him to remember his meds?
Welcome to our world, Celia. I'm so glad you found us.
I wa so glad to hear so many responders give the advice to be behind your LO in the doctor's office. Then I realized that in none of my doctor's offices would this be possible.So have a duplicate list of the LOs current condition written up. Hand one to receptionist when arriving for visit to be given to doctor before the visit begins.Ask when he/she enters if it was read. If not, hand him the spare copy.
Also, remember that not all dementias present memory loss as a primary factor. Other behavior or inability to function in everyday life may be more problematic.
As for others accepting the diagnosis ... You'll have to do the educating.