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.
So the dr. didn't realize the showtiming that was going on from that point on. "Did you tell the dr. that you are only showering once a week because you have such difficulty getting into and out of the tub?" "I'm not going to tell her THAT!" was the response. I find it hard to believe that the dr. didn't suspect some dementia, but I think that as long as my mother wasn't still driving (she wasn't, as I was the Dummy Daughter Driver), that the rest of my mother's life didn't matter to the dr. (she knew there was a local daughter -- me). But once she became hospitalized/then rehab/then permanent placement in SNF, the staff included me in everything and didn't seem to take my mother's input unless it was whether or not she was in pain. My mother's dementia (long hidden, but I knew and sometime felt that people didn't believe me) had become full-blown by that time.
I always had access to her MyChart, so kept track of her health that way, even though I didn't go in to the dr. appointments that last two years or so (unless it was an ER visit; I always went in for those).
For instance, with home health the lady who bathes mom is at least 400 lbs. I am not making fun of her but she does seem to have mobility issues and doesn’t do the greatest job.
When the nurse asked if she was satisfied with her aide mom said to the nurse, “Well, she can barely fit in our small bathroom!” It isn’t a small bathroom. But mom didn’t want to insult her. I had to explain what was happening.
I gave the aide specific instructions on mom. She doesn’t follow the instructions. I am polite with her but she tells me, “Oh, let your mom do everything that she can by herself.” I get that but mom can’t reach because of a rotator cuff issue.
It ended up being a total waste of time explaining our experience because the nurse proceeded to tell me that I was speaking for my mom. Grrrrrrr! So, I just didn’t say anything else. Kind of annoying because why ask a question if she didn’t want an honest answer?
Like others, I've resorted to the subtle head shake, the wide eyed look & written letter dropped off for the Doctor - either before or after. Especially if getting out is hard for you, write letters or use tech methods.
My sister has mental illness, funny how I never considered vascular dementia as well (even thought Mum is on that road) - who knows? She has 'wishful thinking' & has memorably said to a new Specialist "I NEVER fall. Well not anymore. Not for ages". I looked over to big bandage on thumb (from latest fall). Doctor questions. Answer: "But then I went & fell TWICE last week". LOL! This silliness was new to me but Health Professionals must see this ALL the time.
Also, "Yes I do my own shopping". Some questions. Answers included "My Dad writes a shopping list. My Dad buys it online. My Dad pays for it. My Carer picks it up. My Carer puts it away in the cupboards".
It helps me if I can have a laugh (later) but also to remember these symptoms are caused by her brain. The lights are on but a lot of fuses have blown.
Good luck for your journey with this.
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.
Do you have medical power of attorney for her? Or are you her contact person? If so, contact them on your own and set the record straight because down the road the reality of her situation may be impacted by this information.
Also while my mom as well will answer questions opposite of the way we might for her it isn't because she is actually lying. She will knowingly stretch the truth to look better sometimes but more often she remembers things with rose colored glasses and because she has been deaf in one ear most of her life it comes naturally to her to agree her way through conversations even when she has no idea what was asked or said she convinces you she does. If your mom is telling people she lives on her own and still works it may not be a lie at all it may simply be what she believes or remembers at the time. So I might not tell doctors she lies but rather her reality is sometimes from the past rather than today's reality and while you want her to feel in control and keep her dignity it's important they look for silent ques from you on important questions and or communicate with you through the My Chart system or in person with any questions or information of importance. Again her PC should be able to put that note prominently in her electronic chart.
I do think I'm going to start using My Chart to warn them pre-appointment. If they don’t like it, I guess they aren’t the best fit for us. I had tried to do that with a couple of her old drs but they told her and she banned me from taking her for a while but I’m the only one who can now so too bad lol. My mother doesn’t use it at all, only my daughter and I use it for her .
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.
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.
Who am I harboring resent towards exactly?
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.
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].
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?
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.