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Mom's GP who is an internal medicine Dr. has refused the kids requests for help with diagnosis. She believes the patient has to ask for help herself. So Mom has been in early stages for years, 2 1/2 of those I have been living with her, noticed right away there were problems.


We see the doctor on Thursday, what should we ask and what should we expect? From reading this forum I know the testing will be long, or perhaps referred to neurologist?


What have been your experiences with early medical steps and type of doctor we should be seeing.

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You need to get to a neurologist. Even that is not fool proof.

After my dads GP brushed off dementia, it became very clear and he referred him to a neurologist in the same network. This doctor looked at MRI of brain and said there were indications of Alzheimers but no other incidents.

As we live in Minnesota, we eventually went down to Mayo Clinic and the neuro there said there had in fact been an "incident" in the brain based on the MRI. We asked if he meant a mini stroke, but he of course says doctors dont use that term, but the issue was clear, he had had some kind of event in the brain.

But get to a neuro.
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I have had several bad experiences with doctors in my life, as well as a couple of good ones.... These taught me that it is not necessary to be "loyal" to a doctor, dentist, or veterinarian; the era of family doctors that people had for all their lives is gone. These days I "shop" for a doctor, if I ever need anything; amazing how different their attitudes, treatments, and prices are! Not only that, but my ex favorite vet just taught me that a reassessment is sometimes necessary.
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Imho, you need to locate a new physician for your mother STAT. Then that new physician can refer her to a neurologist who will give her an M.R.I., which is the gold standard for Alzheimer's. Your mother could also be taking the medication, Aricept, which has shown SOME benefits for the disease. While the protocol of the current physician is that "the patient has to ask for help herself," that seems to be incorrect, since the patient's brain has a disease.
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I live in an area where I'm fortunate to be able to dispose of doctors as needed. Some areas, well, I can see how that would be harder.

But, the thing is, a doctor isn't for life. You've got to be comfortable with them and trust them. They aren't always right either.
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I hope that you are the POA? If not, going into Dementia while there is still time for your Mom to make these decisions and be able to let an attorney know this is what she wants is important. It is also important that at least health care POA or proxy is in place in order to speak with Doctors. Explain to the doctor that your mother HAS in fact spoken to you. And that it is crucial now to find out what kind and what stage she has of dementia. This isn't all that important from the standpoint of meds, as none are proven to work and many are money makers for the docs,but is important for the family to know what to expect. The course of, say, Lewy's Dementia is completely different from that of Alzheimer's dementia, and it is important for family to be involved as you move forward and informed. Likely a scan will be done. And testing with referral to neurologist. If the doctor is not cooperative and you are the POA then your own seeking of another doctor may be the only choice. Explain that to the doctor and tell him or her that is not your wish, but that the rubber has now hit the rode and there is no time now for denial if you are to negotiate the world with your Mom in the best way possible.
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You should probably find another doctor.

In my own experience, we waited too long to do this for my parents.

Finally, after a brief hospital visit, we went to the hospitalist (a doctor who works for the hospital). The hospitalist already knew of some of the problems, such as neglecting to take prescribed medicine.

Also I went to their regular doctor, to discuss situation without my parents there. This was allowed (ethically) because my parents had earlier signed HIPPA forms allowing me to discuss their cases. I also paid the doctor a "consult fee", for his time.
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Frances73 Jul 2020
I agree, Mom's dr took it all too lightly. When I called and asked him to suggest an discrete assessment he said he had to discuss it with her first! When she consulted a cardiologist I requested a cognitive assessment which his nurse did, 5 simple/stupid questions and she was cleared for surgery!

Drs don’t see the patient consistently enough to make a good determination of a patients mental state.
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I would ask the doctor for a referral to a neurologist. Dementia is usually Alzheimer's type but it could also be the result of strokes and Parkinson's disease. You would probably get more help from the neurologist than the GP in your mom's case.
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I would get another doctor. Wait for the patient to ask for help! That hasn't worked so far since the patient is in denial. The doctor is not the one who has to deal with the denial and changes. If Mom is on straight Medicare with a supplimental, you can get her to a neurologist without a referral. He/she just has to except Medicare and the supplimental. If on a Medicare Advantage referrals are needed.

I would write a note to the doctor explaining Mom is in denial and the changes you have seen. Give it to the receptionist asking the doctor get it before the appt. The doctor can then ask Mom questions based on your note. If she doesn't do this, I would speak up, if u are again told Mom has to ask for help, I would tell her that you are seeking another doctor because she doesn't seem to understand Dementia. The person with Dementia doesn't realize they need help.
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Husband went with his mother to her doctor. He had a medical POA but was dismayed when mom told doctor she could do many things, like cook, when we knew for a fact that she couldn’t do any of the things she said. Rather than confront her in the doctor’s presence, we wrote the doctor a letter using his own summary of her visit, and went step by step down the list and told him what the true situation was. It was extremely helpful while we were placing her in assisted living and gaining guardianship since it gave the doctor all the necessary information to address the court and the assisted living facility.

Even if you don’t have a medical POA, a similar letter, signed by all siblings, would be very hard to ignore.
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Weeroo...please keep us posted I would love to hear what the doctor said. If there is a Neuropsychologist that you can see that would be great. They work with Neurologists and from listening to a Neuropsychologist speak at a seminar they do a very good job with testing it seems to be more detailed than a Neurologist
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It frustrated me to no end when the doctor my Husband and I had been seeing for quite a while "shrugged off" my concerns. First was the concern about possible skin cancer and the second was about his memory.
When I finally got a referral out of him to take my husband to a dermatologist for a spot (not the area I was worried about) when the dermatologist walked in and took one look at my Husband he said...I am less concerned about the spot that you are here for, I would be worried about the Melanoma on the forehead! (what I had worried about for YEARS)
He also shrugged off my concern about the memory and finally after administering 2 MME (sort of worthless as far as I am concerned) I dragged a referral for a Neurologist out of him. And we got the "Alzheimer's" diagnosis but he never went further than that. (I to this day think he also had Vascular)
So...long story short...PUSH the doctor. Be realistic, does anyone with dementia admit they have dementia? (I should say do most people as there are some...)
If your doctor will not agree to testing find a Neurologist or a NeuroPsychologist that will see her. Unless of course you truly NEED a referral.
You have to become your own advocate and be an advocate for the one you are caring for.
I think the doctor is a "bubble off plumb" in her thinking that the patient has to ask for help. That is sort of like having to diagnose yourself before you have to go to the doctor.
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Frances73 Jul 2020
Mom had a sore on her nose her dr dismissed as not important. After we switched drs it was diagnosed as a skin cancer!
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When my husband first starting showing signs of dementia, I would go on the patient portal for his Dr (neurologist) and let him know ahead of time to my husbands appt. what the issues were, so his Dr knew coming into the appt. exactly what was going on. His Dr told me that he really appreciated me telling him that way. Any Dr that doesn't want to listen to loved ones about what's going on with their patients, should not be practicing medicine. That's absurd that a Dr would expect a patient with dementia to be able to ask for help, as is often the case these folks can be in denial about what's going on with them. You might need to find another Dr for mom, and definitely find a good neurologist for her, as they will be more proactive in diagnosing and her care. Good Luck.
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If you are your mother's medical Power of Attorney then the doctor should carry out the request. If you are PoA and he's waiting for her to "ask for help herself" then he/she is a dolt. Find a new internist or geriatrician.

When our family was suspecting my MIL of short-term memory loss, I accompanied her to her doc appointment that was made to check for a UTI. I was not her PoA. I had a pre-written note that I passed the nurse before the appointment which said the family is worried about her (and gave evidence of worrisome behavior) and requested the doc perform a cognitive exam, which she did. I also had MIL fill out a Medical Representative form so that their office would release MIL's medical info to me for consideration. They allowed me to sit behind her during her exam and if she didn't give accurate answers to their general non-cognitive exam questions I'd indicate by head movement yes or no or shrugged. I don't know why your mother's doc wouldn't do this. Usually docs are happy to accommodate this request.
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