Support from doctors

hasbroz · August 14

Hi everyone. I've been caring for my DW and her ALZ for the last 4 1/2 years. At first we saw her neurologist at least every 3months. He would perform a few tests to assess her lucidity and retention. Now we see him once every 6 months, he asks her a few questions about how she's feeling, if she has any questions, and then it's bada bing bada boom we're out the door with a note to follow up with him in 6 months. I'm not sure what I'm expecting, and I know that the prognosis is not going to change, but it seems as though it's a formality rather than a real appointment to discuss what's coming next. She hasn't had any kind of cognizance test in at least 2 years. Maybe I'm just being frustrated, but do other caregivers feel like they get the kind of support and they feel is warranted for this damn disease.

More of a rant than anything. Thanks for reading.

Timmyd · August 14

Our experience was that the neurologist was very good at getting us an accurate diagnosis. After that, our experience was similar to yours. I eventually asked him what was the point of these visits, and his response was that it was our choice whether or not to see him anymore.

I doubt there is any doctor than can tell you what is coming next with any reasonable degree of accuracy. What is coming next is decline. When that comes and what comes with it, is apparently something medical science is unable to predict.

We started palliative care recently. The nurse that visits our home will stay and observe for a long time. She asks good questions, and shows real empathy. She tells us things are supportive and realistic. It has been so much more than we ever got from neurology.

wose · August 14

We stopped going to the Neurologist all together after about 1 -2 years. We do see his geriatric psychiatrist regularly though for medication management. She is very thorough, obviously quite good at her job, kind and even funny. I like her very much … but supportive…no. It’s by the book and see you in 6 weeks, good luck and call the crisis center if you have to and by the way make sure your phone is charged and your bedroom door is locked…. Sorry that was a rant too but you’re in the boat with us here💙

H1235 · August 14

I was upfront with the neurologist and ask for the purpose of these follow ups. She said some people like checking in and asking questions, but the appointments were not strictly necessary. In the beginning I did find the neurologist was much more understanding and informed than the pcp. I did ask a lot of questions (usually on the patient portal t before an appointment). I felt like the neurologist has been the only doctor to really get dementia. When we moved mom to Al the visiting doctor was considerably better than her pcp and I stopped taking her to the neurologist.

blacksparky · August 14

We stopped seeing any doctor on a regular basis at about year 2. All tests like mammograms and colonoscopy have been discontinued. We do see her psychologist if we need a medication change. We still see her PCD if there is an UTI.

marier · August 14

We stopped seeing a neurologist many years ago. My DH does see via video a geriatric physc. for medication mgt about every 6 months. DH is at stage 7.

trottingalong · August 14

After a “kind of diagnosis” many years ago, we rely on our PCP. It’s a crapshoot. No one person progresses exactly the same. They follow a pattern, yes. I have received the best information on this forum. More understanding, knowledge and helpful suggestions.

dcare45 · August 14

We see a neurologist about every 6 months. She said it was up to us to check in or not. Asks a few questions about anxiety and that's about it. We rarely see her PCP. He asks similar questions as the neurologist. I guess we are lucky DW is pretty healthy, well, other than the terminal disease. I don't think there is much they can do except manage symptoms.

Dirigo · August 15

Yeah, the neurologist: to see or not to see? We had a kind one, but she left, and the new one (barely out of his twenties) used a torrent of words to basically tell us that we didn’t need to see him unless there was a behavioral issue that required medication. Run your more mundane problems by the PCP was what he was (in many many words) trying to say. “So you’re just the med guy?” I said. He looked insulted but it was true. There is an acute shortage of neurologists where we live (Maine), so in some ways it’s understandable that he was offloading the care. My DH has a wonderful PCP and we do a 6 month thing there so that’s okay, but still….

Stan2 · August 18

It seems to me that all of the medical community, once they learn of the alzheimers diagnosis, simply go through the motions and sometimes write another script that may or may not do what was intended (let them know in 3 or 4 weeks). My dw had a cataract removed 3 months ago and the eye is still uncomfotable. Now she has developed a sensation that her face is on fire. Is it related ? The ophthalmologist, primary care, dermatologist and neurologist all just shrug their shoulders and recommend another appointment. I really wish I could find a medico that would at least pretend to care.

Quilting brings calm · August 19

My mom saw the neurologist for a few years, and it was pretty much the same experience as yours. Due to anxiety and depression, she was also referred to a local psychiatric clinic staffed by residents at the teaching hospital. After their initial diagnosis( supervised by an attending doctor that mom and I never met), the experience there was the same too.

Mom was frustrated by all the doctor appointments- PCP, neurologist, psychiatric clinic, pulmonologist, hematologist, retina specialist. And I was too. I finally talked to the PCP about it. He took over the mirtrazipine, Donepizel, and sertraline meds and we eliminated the neurologist and psychiatric clinic. We eliminated the hematologist as she wasn’t going to do treatment - she just wanted to do tests to determine the cause of mom’s pulmonary fibrosis. One test couldn’t be done locally and they couldn’t send the blood draw off to do it. We kept the pulmonologist and the retina specialist ( macular degeneration shots).

BPS · August 19

After a couple of visits the only doctor my wife saw was her PCP. He was good and would prescribe medication as needed. After she went to MC we changed to the doctor that came in there and I was not happy with her. My wife was losing a lot of weight and her blood sugar was out of control (she is diabetic). The doctor wanted to put her on Ozempic. I questioned that because of her weight loss and the doctor said it was a diabetes medication but when I said yes but if people use it to lose weight is giving it to someone that is already under weight a good idea. She said Oh maybe not. we made other changes. Be sure to do a little research and ask questions. Now she is on hospice and they are very good.

White Crane · August 19

I stopped taking my husband to see the neurologist several years ago when it became apparent that the visits were just routine and offered no real help. After that he only saw his PCP when needed. All unnecessary tests and procedures were discontinued. He is in MC now and the facility doctor takes care of him.

Maru · August 19

I am not happy with some of the meds that our PCP prescribed for my DH, which were pretty hard core for simple issues, which suggested to me that she does not have a good grasp of what a POD needs. We will continue to see the neurologist because he has a better understanding of ALZ and appropriate meds for a patient with dementia. If there were a geriatric psychiatrist nearby, that would be my first choice.

JulietteBee · August 23

My PCP referred mom to her current neurologist. The neurologist has ordered all testing I initially desired. I am pleased with her care and her knowledge base.

Mom recently qualified for neuro-psychiatric visits, along with CBT sessions, by a LSW. Having been made aware of that and the fact that the neuro-psy is willing to do med management, her neurologist asked if we wanted to continue coming in to see her.

I opted to keep her on mom's healthcare team until the neuro-psych telehealth visits prove itself to meet expectations. Now, rather than every 6 week visits with the neurologist, we have spaced visits out to every 3 months, with the option to call the office for any new onset behavioral changes or concerns.

Come 2027, I am hoping to end most specialist visits, maintaining only PCP and cardiology.

Abby627 · August 23

https://alzconnected.org/discussion/comment/279904#Comment_279904

Can I ask if you still have your DH at home? I am determined to keep my DH at home through this and am wondering how you’re doing if he’s still at home.

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