Is it necessary for Nurologist it ask same questions that upset patient everytime?




some of you know me as I always have lots of questions but for those of you who don’t know my situation it’s that my wife , I feel , is handling this nitemare much better then most that being said I know can change in a heartbeat . It’s 3 yrs and other then not driving or cooking anymore not doing too bad, her short memory and repeating things has gotten more frequently , working the remote and phone confuses her at times I don’t feel uncomfortable about leaving her alone for very short periods say a hour or more. Does everything else herself. So my question really is is it necessary for Nurologist to ask her same questions it time , her zip code , what day is it what month and the dreaded CLOCK drawing and 11.45 time on it. I find this does upset her alot and think it’s because she knows she can’t do. She’s on Memantine & Donelphal and I’m guessing helps but who knowns. Anyone else have this issue.
Comments
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Sorry to hear about your dilemma with the neurologist. We have a great neurologist that after our second appointment, she told me that there really isn’t any reason for us to see her unless we wanted to or needed to ask questions regarding her medications. I really appreciated her honesty.
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The short answer is that those quick cognitive assessments give the doctor a quick way to assess progression. The pattern of correct and incorrect answers can be subjective of type of dementia in certain cases if that has not already been determined.
The bigger question is whether a neurologist continues to bring value to the situation beyond getting a diagnosis.
The answer to that is going to vary based on the needs of the PWD and caregiver, what resources the doctor or clinic offer for support and whether ongoing care needs could be better met elsewhere. If a PWD is being treated with one of the new infusion medications, then a neurologist is appropriate. If a PCP provider is comfortable prescribing older oral medications, a neurologist follow up might not be best for the PWD if it involves travel or upsets them.
Dad needed more powerful psychoactive medication to be safe at home and we were fortunate to live in an area where we could easily see a geripsych for that; people who live in more rural areas might use a neurologist for these meds instead.
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I made it clear after the formal diagnosis from the neurologist that my DW does not want to be quizzed anymore. No more cognitive challenges !!!! The next visit the neurologist started doing it again. I asked him why he keeps doing this and and his response was that we don't have to see him anymore. He did not answer why he kept doing it. Our PCP can manage symptoms. The neurologist treated her more like a research subject than patient. This disease is hard enough without doctors making it more difficult. My advice is to move on from your neurologist and find providers who display a level of compassion and empathy that you and DW are more comfortable with.
If you do see your neurologist again I would ask them why they continue to quiz her? What is the point of it? Is the treatment plan different based upon her answers?
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In our case after seeing the neurologist and getting the diagnoses and initial prescription 9 years ago I could see no value in going back over and over. We talked to my wifes PCP and he was willing and able to take care of her as needed. He could add or change medications as needed and could refer us back to the neurologist if needed. My wife is now in MC and they have a doctor that comes in there that her other PCP recommended she change to because they are in often so my wife is seen more frequently.
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thank you all very very much for your insight as usual very helpful and think I’ll keep my next appointment and no more after.
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Charlie, my DW is about in the same place as yours and while the neurologist questions upset her I am afraid not seeing him anymore might make DW feel that we've given up. While my DW knows what is happening to her she wants to be sure we are doing all we can,and I want to give her as much support as I can.
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Stan, if you don't mention canceling neurologist appointments she's not very likely to notice their absence. If she were to ask, you could say, "I'm not sure, but I know it's not this month."
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I found that a Geriatric Psychiatrist was the best doctor to manage medications for my DH. She only required one in person visit and then everything was handled by phone, online or in a telehealth visit. I also cancelled all specialist visits except those absolutely necessary or I asked for telehealth visits. No need adding things that cause anxiety. Once he went into MC the doctor on staff handled everything.
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my wife hates going and gets really upset.but think I’ll go to next appointment as too be honest I mentioned other day and didn’t seem to upset her. Appointment are far apart now so not so bad.
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My PWD is in mid-stage but still somewhat aware of his own decline. The quizzing from doctors really bothers him, and he responds with embarrassment. He asks me after the doctor leaves the room did he do OK, and I always say that he did fine. The clock faces and the “remember three words” quizzes seem ridiculous after an initial assessment.
Lately we have been seeing a facility-affiliated PCP who is compassionate and works every day with dementia patients. It’s plenty, and we are done with drawing clock faces. (BTW, my PWD wears a watch and can tell time—sometimes— but creating a clock face on paper is hopeless.)
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that’s exactly what I think I’m going to do. I agree clock really upsets her I’m thinking of doing same with PCP , why keep embarrassing her it’s same question every time. Think I’ll keep appointment till it gets close and cancel see if needed then cancel.
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My DW was diagnosed over 5 years ago. She is in very much the same stages as your DW. Short term memory really bad. Stopped her driving and cooking a couple of years ago. But she dresses, baths does laundry and some cleaning still. I can also leave her for several hours during the day a few times a week. She also walks our dog around the neighborhood daily without issue so far. The first two years we visited the memory care doctors the psychologist gave her a one hour test. After the second time she said my DW was extremely upset by it and that we know her diagnosis so there would be no need to do these tests in the future. I agreed. It is obvious that her condition has progressed. Testing and upsetting her more would make no sense. So in my opinion no, the doctors should know better than to ask things that upset her when her situation has already been determined.
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I slipped our neuro a note to be tactful but no, He just started drilling her with questions and when she would look at me for help he would scold her to look at him and that HE was talking to her. She got so upset she screamed and yelled how much she hated me all the way to the parking lot. She forgot it all by the time we got in the car but it was very upsetting for her.
That was about 3-4 years ago I guess. The last 10 years have been a blur so it may have even been 5-6 years ago.
Now she is on her second round of hospice. So many times I think this is it because she is so unresponsive, not eating but two days later she bounces back. That's happend about 6-8 times in the last six months. Never ending roller coaster ride.6 -
I had my dh pcp stop with the neuro question. It upset him to bad. His neurologist doesn't ask them anymore thank goodness. They get him so upset. I see no sense in them if they have already been diagnosed and have failed all the test multiple times. He is not going to get better so why?
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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