Help keep your loved ones safe with the Home Safety Checklist.
RSS Feed Print
He seems fine to me...
celiabedelia
Posted: Monday, April 15, 2019 1:38 PM
Joined: 4/15/2019
Posts: 2


My dad has always been a good performer - a magnetic personality who's great in front of an audience. Now that we're really into the middle phase of this disease, it can be difficult for people to see that his memory is fading, especially his medical team. His answers to their questions are quick and full of confidence - I go to all of his appointments now, and spend the entire time internally debating which of his answers I need to correct or adjust as they pertain to his care or health status. I have to weigh my responses based on what is okay for me to say given I'm not the actual patient, what isn't going to make him feel bad, and what is most accurate to make sure he gets appropriate care. I'm a year in and it is wearing me out already. My sister and I both take care of him remotely (we're 1 hour and 4 hours away respectively), we're a good team as we have different strengths, but we're both exhausted. Any tips or advise on handling a "performer"?
harshedbuzz
Posted: Monday, April 15, 2019 2:16 PM
Joined: 3/6/2017
Posts: 1346


It depends. My dad did a lot of confabulating- recalling events with gaping holes he'd back-fill with random details related to other people, places and things. He remained very verbal and oddly articulate until the day he died from complications of aspiration pneumonia.

I would position myself next to/behind dad in the doctor's office and non-verbally confirm or contradict the information he was giving. In the mid-stages of the disease, dad could hold it together for periods of time and could fake people out. I once sent a video clip of dad threatening my mom to his psychiatrist because I didn't feel heard when I expressed concern about dad's aggressive outbursts. 

HB
mrgladd
Posted: Monday, April 15, 2019 2:21 PM
Joined: 11/3/2018
Posts: 106


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
Posted: Monday, April 15, 2019 2:53 PM
Joined: 10/9/2014
Posts: 535


Maybe, I'm not understanding the situation.  So, you are present during the doctor visits, but, do not see him daily or weekly due to being long distance?  What kind of questions would they be asking him that his wrong answers might apply?  I would think things about his daily state of mind, ability to perform ADLs, diet, medication intake, etc.  would be the primary focus for the doctor. Who would know this info?  Is he in an AL?  Just trying to figure it out.
celiabedelia
Posted: Monday, April 15, 2019 3:13 PM
Joined: 4/15/2019
Posts: 2


Thank you for the ideas!

@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..


gubblebumm
Posted: Monday, April 15, 2019 3:18 PM
Joined: 7/12/2017
Posts: 1022


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...

Mom: Ummmm

Doctor:  Who is president

Mom: Trump

Doctor:  very good giving me the same look

Me: Mom who did you vote for?

Mom:  Ummmmmm

Doctor:  So are you driving"

Mom:  Yes! Drove here

Me:  Shaking head no, mouthing behind my mom, its been a year...

Doctor:

FINALLY the doctor was like ohhhhhhhhhh

 

 



mrgladd
Posted: Monday, April 15, 2019 3:27 PM
Joined: 11/3/2018
Posts: 106


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.



JustLikeMom
Posted: Monday, April 15, 2019 4:03 PM
Joined: 2/7/2012
Posts: 464


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....

 

 

 

 

 

 


Rescue mom
Posted: Monday, April 15, 2019 4:20 PM
Joined: 10/12/2018
Posts: 384


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. 

 


Rescue mom
Posted: Monday, April 15, 2019 4:23 PM
Joined: 10/12/2018
Posts: 384


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.


Iris L.
Posted: Monday, April 15, 2019 5:17 PM
Joined: 12/15/2011
Posts: 15807


Rescue mom wrote:

 

 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.” 

(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.)

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.


IrisL.



gubblebumm
Posted: Monday, April 15, 2019 5:40 PM
Joined: 7/12/2017
Posts: 1022


And what people don't notice is how much protecting, setting up hellos, chatting to include the Lod so they don't feel ignored or left out and "fit in".  I am constantly watching for my mom when we go out, I can read her face, and she can smile, say hi, look be cheerful, but if she can't see me for three minutes she panics, doesn't know who she is with, etc.  Basically if they say Hi she says Hi back, if they don't acknowledge she would have no clue she knew them.
windyshores
Posted: Monday, April 15, 2019 5:59 PM
Joined: 2/16/2019
Posts: 21


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.

 

 

 


phoenixjs
Posted: Tuesday, April 16, 2019 10:04 PM
Joined: 4/29/2016
Posts: 13


My better half seems normal until you start seeing him every day.  He has certain stories that he tells all the time (with some variation).  And if you are around him for any length of time, he has lost all of his inhibitions..he will go to the bathroom without closing the door, and always talking about his holes closing up.  He tells everyone he is 55 years old (he's 85).  When you ask him his birthdate he replies it's on Shirley Temples birthday.  It is, but when is that?  In reality, he doesn't know what day it is, he can't dress or bathe without assistance.  Yet even the social worker was convinced that he was a visitor!
mostlyme
Posted: Wednesday, April 17, 2019 1:57 AM
Joined: 12/17/2018
Posts: 104


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...).


jfkoc
Posted: Wednesday, April 17, 2019 9:20 AM
Joined: 12/4/2011
Posts: 16582


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?


Mimi S.
Posted: Wednesday, April 17, 2019 9:50 AM
Joined: 11/29/2011
Posts: 7000


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.


SunnyBeBe
Posted: Wednesday, April 17, 2019 10:05 AM
Joined: 10/9/2014
Posts: 535


celiabedelia wrote:
Thank you for the ideas!
 

@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..

Oh, I see.  Based on that, I'd wonder what he really is taking on his own. Does he have someone else administer the proper meds?  I know that with my LO, I could not rely on her word as to what she was taking.  She'd one thing, but, the bottle showed different. 

Fischie7
Posted: Wednesday, April 17, 2019 12:46 PM
Joined: 7/27/2016
Posts: 144


Lights, camera, action!!! Any medical appoitment is showtime for my stage 6 DH.  I have had to take his PCP and NP aside to remind them that he will be performing for them... funny jokes, smiling, friendly, making jokes at my expense ("this one here is the boss" pointing to me)  I also email a complete rundown of his status including incontinence, mood, confusion etc.)  Our most recent visit, I asked the NP to do a mini mental...he scored 17 out of 30 which put him in the Moderate category, not mild which is what his Geriatrician thought a few months before.  I also take his watch because it has day and date and he sneaks a look when asked.
 
× Close Menu