Stop visits with neurologist

Smilescountry

Hello! I am wondering how others handle simplifying visits to doctors. My dad has Alzheimer’s and, while I can take him to local doctors, going out of the county to see specialists is not easy. He broke his neck last summer two different times and is following up with the neurosurgeon virtually. Our local hospital sends test results to the surgeon, then I do a phone visit with him. The other doctor is the neurologist. He has seen dad twice in person and once virtually, but did not have Dad make a follow-up appointment this last time. Do neurologists typically care for dementia patients through the end, or do family doctors continue the care that the neurologist has begun?

M1

I think it depends on the neurologist—but if he's not receiving any of the newer medications, once the diagnosis is made I doubt if the neurologist is really adding much to his care. Sounds like a good idea to simplify. And sound to me like he made his own preference pretty clear by not asking him to come back….

harshedbuzz

@Smilescountry

IMO, once you have a properly obtained diagnosis, a neurologist isn't an absolute necessity. I took dad to a top notch memory center at a university affiliated medical center for his diagnosis and a few follow-up appointments. The follow-ups were an unpleasant hour away with crazy traffic and pricy parking and brought little to the party. Living with dad mom had a much better idea of how the disease was progressing than they did in a one-hour visit during which he showtimed. Because dad had behavior issues, we did add a geriatric psychiatrist to manage his psychoactive meds as the neurologists were hesitant to prescribe the doses he needed.

I have a friend who didn't even take her beloved mom to a neurologist. Because mom was 90, she saw her PCP who did the bloodwork and imagining ruling out something treatable and later for an SSRI to treat anxiety in the middle stages.

At the end of the day, they both got appropriate care with the same outcome.

HB

Quilting brings calm

I’m trying to simplify Mom’s doctor visits too. My mom has seen the NP in the neurologists office every six months for about 3 years now. She got a diagnosis of MCI in the first six months and the NP hasn’t budged off of that even though mom seems stage 4 to me. Not much goes on at those visits. A quick MMSE test, watch her walk down the hall and see you next time. I just cancelled the one for next week- her PCP will give her the donepizel prescription from now on.

sandwichone123

My dh hasn't been back to the rude, unsupportive neurologist since his diagnosis in 2022. I needed the diagnosis to file for disability, and it was like pulling teeth. I got the idea that the neurologist is depressed with Alzheimer's since nothing of any substance can be done and did not like the diagnosis or the patients or family members associated with it.

Smilescountry

Thanks, everyone. I think that you are confirming what I was thinking. Our last face to face visit to the neurologist was quite an experience! First, I was alone with Dad. (Never again.). Second, he had to make an emergency restroom stop just off the interstate. He went into the restroom by himself but didn’t know what to do once he was in there, so I (a female) had to go in to help. I was in the handicapped stall helping him when another man walked in. I could feel his shock when he heard my voice and hurried out! Once we got out—minus some clothing that made it to the trash—we got to the hospital only to discover that the doctor’s office had switched floors, and no one knew where it had gone. My poor dad was beside himself. We finally got to the office late after having given ourselves an extra 30 minutes to make it on time. The doctor was very nice and helpful, but Dad still remembers that he never wants to go back to that town and can call it by name, even when he forgets many other words. Because of the serious nature of his broken neck and foot problems that need some specialized care, I can’t eliminate all the doctors yet, but this one I think that we can put aside.

H1235

My moms neurologist told us that some people like to come back and touch base others do not. It was up to us. Since her pcp seems very unhelpful when it comes to dementia symptoms we have continued. Mom also does not object to the visits. Mom usually listens to the neurologist when she says she shouldn’t be doing something and that is helpful. Although she just told her she recommends AL. So we will see. If she had a pcp that was better with dementia we probably wouldn’t bother.

AlzWife2023

We visited a new neurologist since we've moved, and he literally asked us why we were there and what did we want (since he was already diagnosed). I said is there anything you recommend for people in our position? & What do other patients ask for? (I was quite flabbergasted & it seemed like I was doing his job.) He talked about getting POA and MOLST paperwork (that's Massachusetts Orders for Life Sustaining Treatment), offered no other insights, and seemed to be ready to sign any papers or whatever, but so disinterested.

He did a partial assessment and when I asked if he was going to finish the assessment he said "what's the point." There was absolutely no tension or reason for him to be so rude or dismissive other than he finds these cases boring. Our neurologist in New York was extremely kind, expert, and concerned. He spent over an hour with us each time. This guy spent 15 minutes tops with us despite the fact that when we had an appointment a month earlier and we were 15 minutes late, we were sent way because "the doctor needs the full hour for a new patient."

This new guy young guy, a locum, and just WOW. So, we won't be bothering to see him again. Going back to NYC to see the other neurologist might happen…who knows. It's a big trip for us. I am tired or wasting time with people who do not care or cant help us. This doc even had the nerve to say "so you wanna come back in six months?"

Kibbee

There’s a reason he’s doing locums work rather than having been recruited into a fully employed permanent position. Many private practices and health care organizations say “no thanks” to hiring physicians who exhibit poor attitude and an uncaring and rude bedside manner. Remember, every graduating class of new young doctors has somebody at the bottom! You’re right to pass on seeing him again.

But to address the general question of whether or not to continue seeing a neurologist. The only reason DH still sees his neurologist is because DH requires an anti-seizure med and we need a neurologist to prescribe it since his PCP will not. There is nothing the neurologist can do to treat or delay the progression of DH’s neuro-cognitive decline. On the upside the neurologist is a kind and caring physician, who has stepped up to help by completing the orders required by Medicare to provide needed DME equipment (Hoyer lift, hospital bed), and for that we are very appreciative.

GothicGremlin

My sister saw a neurologist to help get a diagnosis. He was great with her, and very helpful. Once that happened, she only saw a neurologist one other time, when she was mid-stage 6. The second neurologist wasn't that great, but maybe that's because she was later stage when we went. We endured the very stressful trip to his office because we were trying to get an assessment of where she was (mid-stage 6), and to answer the question of whether an occupational or physical therapist might help her. I can't say that any of it helped much, but I think the extra attention was comforting to her, so given all of that, I put the whole experience in the "plus" category.

Once she was in stage 6, going to any doctor was a major endeavor, so we went only when absolutely necessary.

So yeah, put me in the camp of if you have everything you need (like for a diagnosis), and if it's really stressful for your dad, I'd just let it go.

M1

it remains quite sad that they really don't have much to offer past diagnosis. Maybe that will change someday, but so far it doesn't seem to. I've said this before: neurology evolved as a specialty in the days before precise imaging, when you had to be able to do a really good physical examination to pinpoint neurologic lesions in the brain or peripheral nerves, and that was a neurologist's strong point. That's no longer the case—and it remains true that most neurologic diseases are incurable. Some are treatable—like migraine, epilepsy and now, mutliple sclerosis. But otherwise it's pretty bleak….very few of their patients ever get better, and it affects how they interact with them. They inevitably see dementia as a dead end, and helping with that is not what most of them are interested in.

blsmith6927

Hello- took mom for her first appointment to a neurologist and it was so disappointing. He had nothing to offer pass her diagnosis.