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My mother has a diagnosis of vascular dementia with behavioral changes and has narcissistic tendencies. She can still pull it together enough to sound like she knows what she’s talking about so medical personnel address her with questions and accept her answers even after I correct it. Some don’t really matter, like her claim to be 5’7” rather than her actual 5’3” or 4” but some, like she hasn’t fallen (actually a fall 5 months ago that broke her hip, still high fall risk at the ALF) or that she lives alone and works (actually ALF for over 2 yrs ) could make a huge difference. Took her to a new cardiologist yesterday and noticed after the visit notes including her crazy answers as fact rather than the answers I gave.


Even correcting the answers makes my mother get angry but I don’t get why the Drs take her as fact or how to get them changed when she has a dementia dx. I’m her medical POA but I don’t think they even look most of the time.


Yesterday the Dr made a point of handing her the after visit summary and discussion of follow up with her🙄🙄🙄. Dignity is one thing but truthfully sometimes that borders on stupidity.

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Janner, ah yes, the "I am fine" when one's parents are at a doctor's appointment.

My parents had a great geriatric physician, any time she would ask my parent(s) a question, she would glance at me to see if I shaking my head yes or no. If "no" then she would quiz my parent(s) until she got a good answer. I was always sitting behind my parents in the exam room so my parents didn't know what I was doing :P

My Dad was pretty good at being upfront with his doctors, but not my Mom. My Mom was always in denial that she was aging [in her 90's].
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Jannner Jul 2019
Yes, my mother has always been independent to a fault. She refused to even allow anyone to go on dr appointments with her or my stepfather . That way no one could know what the dr really said. The problem being due to her personality disorder and delusional thinking , she doesn’t admit anything she views as a “ flaw” and all illnesses are “ flaws” to her. Every dr appointment is her screaming at me the entire way over , her showing her “ sweet as pie rational as possible “ side to the dr ( except the neurologist, that one heard words she probably never thought a 92 yr old even knew lol) then back to MS. Crab on the way home lol. If I could just get them to understand the situation I could give them clues but she is still great at conning people. Eventually, I think the dementia will supersede the narcissist personality but it hasn’t yet.
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I sympathise.

Q: Do you have any health problems?
A: No, I'm fine.

Apart from the congestive heart failure, chronic kidney disease, hip replacement, gastric ulcer....

Mother later explained that she "didn't count" anything that was controlled by medication. The appointment when a nurse practitioner cancelled her pacemaker implant based on mother's claim that she could walk up to a mile "but I get a bit tired" was the last mother ever went to alone. It was supposed to be a chat about living with heart failure. No examination, no investigations, no corroboration; and interestingly no cancellation letter, either - I found out by luck. I quite enjoyed following that one up.

We have to go through this grey area, only not so much grey as Kafkaesque, while our demented elders are not yet officially away with the fairies, or whatever technical term your jurisdiction uses.

I take it your mother's medical teams are actually *acting* - prescribing, treating, etc. - based on their clinical observations and your contributions, rather than your mother's claims? Assuming that is so, and you and they both have the obvious risks covered, then there are at least three things to be said for solemnly writing down the patient's own account.

1. As you already said, respecting the person's dignity and autonomy, as far as it remains possible;

2. The discrepancies between the patient's own understanding versus the results of scans, blood tests, clinical examinations and reliable witness accounts are in themselves helpful to understanding the patient's mental state;

3. The practitioner needs to develop a relationship with the patient. Upsetting, provoking, challenging or contradicting the patient is not going to help that. Gentle questions and explanations will work better but first you have to establish trust.

So I wouldn't be fooled. The fact that the doctor is keeping a straight face and handing over the notes doesn't for a second mean that the doctor actually believes that your mother is CEO of a tech company (though she may be! How would I know?). But I think you already know that perfectly well - is there a nice soft surface you can go and bang your head against?
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Jannner Jul 2019
Lol! My mother actually told one dr. she went back packing and mountain climbing while really she can’t stand in a grocery store line. I think he realized that was a fib .

I have a great rapport with the NP who handles my mother’s daily care who happens to also have a mother with not quite as advanced dementia as my mom. I think I’m more concerned about if an emergency arises. When she broke her hip , the hospital had old and new info mixed together which followed her then to rehab and respite and her current ALF. So I know it’s very hard to get faulty info removed once added , basically it can be corrected in 10 places but still wrong in one lone department so given as current info. 🙄.
I totally get the establishing rapport, I was just shocked to find they actually entered her answers into her chart even after I mentioned it.
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You are medical POA now for someone with vascular dementia; it would be so much better now if you would just attend all MD appointments with Mom if you are in the same city, so that you can gently correct crucial information like fall history. Explain the need for this by letter with all MD and Nurse Practioner etc. Because yes, esp with the Narcissistic mixed in, confabulation can lead to medical folks honestly believing a good story.
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Jannner Jul 2019
I do, I have serious debilitating illnesses myself , basically housebound , but always drag myself to any new drs and my husband takes her to repeats if I can’t go to them. We always go in with her. I always correct her nicely, ie “ oh remember when you fell and broke your hip? That was only 5 months ago so I guess you have fallen in the past year” Or when she said she lived alone I said to the nurse” That paperwork I gave you is from the ALF she lives at” . If I ever said outright she was wrong her head would explode lol
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Who deamed Mom as having Dementia? I hope a neurogist and not a PCP. Whoever diagnosed her, that paperwork needs to be in all her doctors files. If u haven't been going to appts with her, u need to. Right in the room. I always wrote a list of things I had seen. Changes. I would give this to the receptionist for the doctor. Then his questions could be based on what I had written. Your POA should be on file too.

My Mom's Dementia was noticeable. I had asked that no one talk to her about her care. If I wasn't there, I was to be called. I showed up one day to two nurses (think they were students) explaining what was going to happen to my Mom. I told them she lost them after the first word. Her ability to process was really bad. My DH has lost hearing in his left ear and has maybe 20% in his right with an aid. Deaf without it. Domu think I can get doctors and nurses to understand this? No. I called one doctors office and asked the Nurse to put a pc of paper with the words DEAF where it was the first thing the doctor saw in the folder. My DH could not get this man to look at him when he talked.
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DILKimba Jul 2019
This is what we have done also. Write an update and give it to the receptionist when checking in to help guide the doctor on what is going on.
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Most Doctors offices now have "Patient Portals" that you could set up.
The advantage is you can send messages to the doctors offices.
Prior to the visit send a message "reminding" the doctor and the staff that mom has dementia and that she had surgery for a broken hip on...since the last visit she has fallen ..X number of times..and any other information you want them to know.
Also instruct them to also give you a copy of the "after visit" notes.
I might add that if you are in the room with her during the visit and the doctor does go over any follow up information he or she may be talking to your mom but the information is also being imparted to you and this may be a way of keeping you informed but also respecting your mom as an adult that still might be able to make some decisions on her care.
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Jannner Jul 2019
That’s a good idea. I can email them on MyChart and I think it gets sent to the dr directly

i actually have to give a copy to the ALF as well so last time I had them print out her coming appointments and gave her that instead. She has macular degeneration so can barely read anyway, I don’t think she knew the difference. Although now she may call me everyday multiple times a day thinking she missed her appointments again if she can make it out lol.
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It sounds unrealistic for you to attend all of her doctors' visits because of your own health issues. Her doctors do need to be informed *by you* **in writing** that you are her medical POA and scheduling visits and reporting results must be done with you and only you. Whichever doctor diagnosed her vascular dementia wrote a report that was sent to her PCP, if he was the one who referred her for neurologic testing. Get and copy that report and attach it to a copy of your medical POA documentation and send it certified mail return receipt requested to the new cardiologist. Once you get the signed card, call the office and confirm that the report has been added to your mother's medical record, and request a call back from the cardiologist acknowledging same.
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I've noticed when I take Mom to doctor appt. They talk to her directly and ask her questions. Sometimes she can answer but it becomes very apparent very quickly that her responses aren't all there. Many times she will try to answer and then looks to me to confirm what she is saying. If what she says is really far off but seems to be accepted as fact by the Dr. I'll just give him a wide eyed look and a subtle shake of my head. Later I'll leave him an e-note for her record. Many people don't like the computer for communicating with the Dr. But I find it makes life so much easier. She is able to maintain her autonomy and I am able to keep the Dr corrected on the important stuff. Like the 15 falls and 6 ER visits since Jan. When she claims no falls and walking without difficulty. She uses a walker and drags her left foot.
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Oh man, that sucks. I'm sorry you're going through this with your Mom. But at least she's got you as her advocate. Keep doing what you're doing for her. Hugs.
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Persons with vascular dementia go through a stage of "confabulation" where they make up information (1) to fill in memory gaps and (2) to save face.

It's clear that your mother is seeing herself "as she used to be" in her prime. Perhaps she was 5'7" as a young woman; after all, everyone shrinks in height with age. Perhaps she was employed full-time and lived alone at some point in her past. It may not be intentional lying on her part; she may actually see herself as a moderately tall, young, vibrant, independent woman.

My father had vascular dementia - and I saw the same behaviors in him.

The medical staff may not be taking correct notes for her condition. The most correct way is to write something like, "Patient stated that she works full-time as a secretary and lives alone in an apartment" - or whatever applies. That way, it is a simple report of "what the patient stated" rather than fact.
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Jannner Jul 2019
I’m sure she is to a degree seeing herself differently than she is . Being narcissist comes with a inflated opinion of oneself anyway. I don’t expect her to be truthful as that’s how she’s lived her whole life but I do except the drs to question it now with a concrete diagnosis of dementia. I’m used to her deception, I just don’t know how to get thru to the staff she’s giving them a line. And like I said before, I pick my battles with her. Any fool can see she’s never been 5’7” in her life when she’s probably around 5’3” now , maybe less because she has osteoporosis she refused to medicate for . ( they weigh her but don’t measure her although when I questioned it she claimed they measured everyone ‘s height at the ASL the day before, nope lol) but they don’t see the kidney cancer hasn’t recurred in 20 years , that she is incapable of handling her appointments or medications, that her legs haven’t been ballooning her whole life etc.
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Oh I get that & it’s so frustrating! Our Dr thinks my mother is the next best thing to chocolate when she’s in his office, acting all sweet. The Dr does look at me after he asks a question but I don’t really think he cares what I think or say. Maybe they think we have dementia too???? I think a consultation type appt would be good to schedule to discuss mom. Schedule first thing in am before he starts his busy day & isn’t exhausted. Maybe they’ll listen.
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Since it was a new Dr, it was likely he had no medical proof to make him doubt her. (Could you request medical notes from the person who diagnosed her dimentia?) Also bring copy of hospital notes on broken hip, to show to any new Drs. That kind of stuff would be objective proof. Otherwise, just stay in the waiting room next time she visits the Dr. so you don't have to listen to her lying. In the end, it's not worth letting her drive you crazy. That's what I ended up doing after my mother got mad at me for telling her Dr the truth. Good luck.
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Jannner Jul 2019
It was in her chart as I take her to only one hospital system. I also pointed out the letter with the diagnosis from the dr . I said she has a new diagnosis there on that letter. He was aware of it because he said neurology would handle it, not vascular.
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