Should we continue doctor visits?

If the neurologist says there are no more therapies to try, I'd discontinue the visits. There is no purpose. I'd also ask the primary care MD if your spouse is at a "hospice" stage, where no further general medical therapies are going to make a difference to him.

My dad had congestive heart failure and kidney failure. He was very weak, and needed bathroom assistance all the time. His MD told us that there was nothing further that medicine had to offer. He was at the end of his life. So the MD arranged to have him put on Medicare hospice status (they had moved to AL at that time as well since he needed round the clock assistance with the ADLs.) Hospice provided regular nursing and social worker visits for comfort care only. He also signed a "do not resuscitate" order (never needed, fortunately.) He passed away peacefully beside mom in their AL apartment.

No, I wouldn't continue to go. Write a lovely thank you letter and tell the doctor you will revisit for any changes or needs in future.

When my mom last went to the hospital, they thought she may have had a seizure and had the tests run. I work in Neurology, and I KNOW she did not have one. All the tests proved I was right. Then on discharge they wanted us to see the neurologist again.. why?? It was dehydration and CHF. I politely declined that apt. I told her regular Dr about this, he agreed I was on track. I see no need to go to Drs who only want the money. If you are happy with the regular Dr,, stay the course. My almost 90 YO mom does not need more apts.

I agree with the others. Given there really isn't anything any doctors can do for most dementia patients, other than perhaps Rx something if they are having real issues (anxiety, hallucinations, etc.), what is the point? I would just say that unless he has some additional neurological issue(s) that can't be addressed by his regular doctor it is too difficult to travel that far with him. Keep the door open, just in case something pops up later. Nothing really that can be done, other than treat symptoms if needed, but you might have need.

I just sent via the portal a question for mom's regular doc (we never saw any "specialist" for the dementia) regarding a refill for her BP meds. Currently this is all she takes, unless we have a UTI. Generally doctors will require you to be seen in order to do the refill, which is totally understandable. But like lealonnnie1, I find it rather difficult, esp with the virus, to get her there (won't stand or walk without serious support, which I can't do.) I can get transport and an aide to help, but it is better not to make trips outside the facility, esp since so far there have been NO cases! So, on the call back, the nurse asked if I could sit with her for a TeleHealth instead. Really? To do what? You can't listen to heart and lungs, you can't check weight and BP. She can't hear you and even if she could, she wouldn't understand much!!! (they tried to get me to do TH last month for my annual physical - same question: WHY? Oh, because you can get paid. Physical exam over my little phone, woo hoo, you'll do a great job with that!)

So no, I wouldn't continue taking him there.

If neurologist is not prescribing medication or treatment, you could skip re-evaluations. Your primary doctor can always submit a new consult if new problems develop.

This is the time of COVID-19. You should contact doctors by videocalls or phone calls. Not in person visits. Medicare and other health insurancesnow pay for video and telephonic calls. It saves everyone's time and energy.

I've had great results with TH visits, I have a BP device, a scale, and a pulse oximeter, so I can enter the info myself and get to talk to my doc. He can prescribe/refill meds, listen to the slight cough I was worried about and make note of my appearance. I wouldn't discount the helpfulness of a Facetime or webcam TH appt for most people. You can turn up the volume on your speaker to hear clearly.
If nothing is done but a "follow-up" with the neurologist and there's no new meds can be tried, or therapies, then perhaps just a every other year check in is good enough.

Just tell them you'll need to check back about a new appointment and don't schedule one. Repeat business is good for a specialist especially if there's no changes.

Nope, I would not. I do not take my Mom for follow up neurologist appts. If something new presents, you can make an appt.

This is a very timely question because I am pondering the same thing for my husband who has moderate-severe dementia. Each time we went to see the neurologist, he was given a memory test which frustrated him because he could not remember anything to give answers. I asked the neurologist why asking him questions when we know he cannot answer. He said the it is a required process in order for my husband to receive memory pills which I do not know if they are helpful (but I am too afraid of unknown consequences to stop). I am leaning towards not going to the neurologist.

Alzheimer's is a terminal condition with gradual decrease of function. My mom had it for 15 years, and I never put my mom on any psych or narcotic meds because they do not help other than mask symptoms. Be mindful the more psych or narcotic medications he is on, the more likely they will fall.

There is nothing any doctor can do about Alzheimer's. Keep him moving as long as you can. I walked my mom in the park daily for five years for a quarter of a mile. In the end she had to use a specialized upright walker (cost me $700 which Medicare will NOT pay for) to keep her back straight while walking. It kept her going another year and a half. SHe was only bedridden for 3 months before she died -- she forgot how to coordinate her muscles to walk, and I had to get feeding tube so she would not die of dehydration. She died very peacefully still without narcotics and was comfortable. Mom was on hospice for TWO YEARS before she died, and that was because it was too difficult for me to get her to her doctor. I used hospice for routine labs and meds. I did all the work. And I had to ask for labs--if you ask they will do it. Hospice provided me all her supplies.
LEARN FALL PREVENTION!!!

IN THE END I had to manage her bowels and bathe her. It got to the point--with lactulose went three days a week. So I had her bowels on a perfect schedule. I got rid of the bathtub and put in a standing shower with shower chair. I got grab bars installed all over the bathroom. If mom did not have a bowel movement in 3 days she would be impacted so that is why I had a bowel schedule. The care gets more involved so either you LEARN how to deal with it OR plan on a nursing home. I had to get used to changing her diapers and keep her clean to prevent infection and skin breakdown. Mom died with perfect skin. Not a single bed sore.

If you are planning a nursing home, get him MEDICAID PREPARED and see an eldercare attorney. Be sure to SHARE BANK ACCOUNTS so you can continue to pay bills (your name be with his account) when he is unable.

WHILE HE IS STILL COGNIZANT, get a living will done. Once he forgets how to swallow water (and thick-it no longer works), would he like a feeding tube? Be mindful it can take TWO WEEKS to die of dehydration. Discuss that with him and your family. DO IT NOW. If you decide on the feeding tube you will need to revoke his hospice--regular medicare will pay for the feeding tube--then back on Hospice on discharge as a pre-existing condition so they will pay for the feeding pump, tubing and cans of feeding, syringes, etc.

Ironically mom did not die of ALzheimer's. Her feeding tube kept her needs going. She died of other causes and it had nothing to do with the feeding tube or Alzheimer's. I don't know how but I kept mom going and she died age 90..and those years were quality years for her. She never suffered. BUT a feeding tube should be a VERY LAST RESORT. It requires a LOT of care to prevent infection, checking residuals, flushing, etc. Mom never bothered it, and I bought tube tops from Amazon to keep it covered (prevented accidentally pulling it while turning her). I never did like the abdominal binder. Tube tops worked great and were comfortable.

THE MOMENT he starts wandering, he will be entering into the late stages and will require constant supervision. Mom started wandering five years before she died. THAT is when I found out all about Medicaid, look back laws, cost of sitters ($20 an hour).. Even then it is a long, long, long process before death.

Be mindful--nursing homes are NOT safe. They fall all the time, and are cesspools of infectious diseases. But if you cannot deal with the care, that's where he has to go. But high risk of skin wounds, pneumonias, falls, etc.

This reminds me of the ophthalmologist my mother saw for many years because she had macular degeneration. Eventually we stopped seeing him because all he could do was put drops in her eyes, have her take some eye tests and tell her that there was nothing further he could do. The drops would make her eyes sensitive for the rest of the day and she had to sit in a dark house and couldn’t watch TV. When asked what she could do to help herself and not lose anymore sight, he told her to take the eye vitamins. (She has dry AMD). It never went to wet AMD. She would not have taken the injections anyway with wet AMD. She is 94 now and has other problems, but still sees enough to get around her own house.

When I took over managing my mothers doctor appointments, I knew I was potentially entering a bottomless rabbit hole. My mother was a Hypochondriac for as long as I could remember. If she wasn’t going to at least one doctor appointment a week - she wasn’t happy. I use to joke that the medical campus where most of her doctors had offices - should have given her a dedicated parking spot with her name on it. As moms dementia intensified her very favorite pass time was to mill through - reading and re-reading - the “visit summaries” they gave her at the end of each appointment.

So yeah - I knew I was in for a significant struggle in managing her many, many doctors and specialist.

Still, when I discovered my mom was seeing an OB/GYN every three months for a vaginal ring change-out - I thought my head was gonna explode. I mean, my mom was in her mid 80’s and she was on Homone Replacement Therapy. Seriously?

That was the first of what became many specialist visits that got crossed off the list. By the time my mother was put on Hospice care her prescriptions had been reduced to only what she needed in terms of her now occasional behavior meltdowns - an Ativan here or there. And, you know what? Absolutely nothing change or worsened beyond the natural progress of her dementia.

Ive got nothing against doctors in general but the “lather-rinse-repeat” of follow-up visits can get out of hand. And, too often they are completely pointless when a person hits advanced old age. Well, pointless beyond financing the medical machine.

You should have seen the explosion that took place when I found out a Doctor had my Mom prepping for a colonoscopy at 95 years old! Ridiculous!

As my mother's dementia advanced, I saw that the doctor and dentist visits were not helping things, and they were causing anxiety. It got so that she was not understanding what the doctor was asking, and she could not follow instructions. We stopped all doctor visits except for her primary care physician who is required to examine her annually for her to remain eligibile to stay in her senior residence. She also could not handle the hospital, so we changed her medical directives to be "no hospitalization." She is essentially in good health and seems to be fine with a minimum of doctor visits.

My mother's neurologist saw her one last time after confirming the Alzheimer's diagnosis. At that time he told us we did not need to see him again unless there was a problem. She was on maximum dosages of memory meds and would stay on them. He told us what we really needed now was resources and support from the local Alzheimer's Resource Center, which we were already connected with. I adore this neurologist, and this is a big reason why!

My mom 91 after a hospital stay for pneumonia did a DNR & POLST directive no more hospital visits period. Her decision & we respected that. She had Dr's she saw every year & why? Nothing changed so we stopped going. It was harder for her to go being wheelchair bound, plus if they found anything are you really going to do anything. Everyone is different, lots to think about.

From my personal experience with my LO with Alzheimer’s and dementia, we had one hospital visit and one follow up visit with a neurologist. He might have made the diagnosis official, but there was no other value added. We did not see him again. Keep in mind that Alzheimer’s and dementia never gets better, it only gets worse (some people faster, others slower.) Currently there are no miracle drugs for it.

Dementia cannot be fixed - it gets worse. I'd stick with the regular doctor and not go to the specialist if nothing can be accomplished.

I had my hubby at both the Family Doctor and his Gerontologist this last week. He hadn't been in 2 years. FD wanted to know why. Probably because the last time I was in there I cried because I felt he was just blowing me off. I told him we didn't need to come in. The Gerontologist, looked him over and told me that if he got anxious to call him and he would prescribe meds. Hubby does not do well on Aerocept. So there is basically nothing to be done. He is either gotten very hard of hearing or the Alzheimer's makes it so he can't process info or maybe both. I am taking him to an Audiologist this week.

Long way of saying, unless you need to go for a reason, don't bother.

I vote no, unless your husband enjoys the visits and getting out. It is more effort for you, and what is the point?

Imho, as Alzheimer's is a progressive disease of the brain, there is PROBABLY no real need for your husband to be seen routinely by the neurologist, mindful of the hope that his PC physician can manage, e.g. Aricept and any other Alz meds that he MAY take.

The neurologist may just be covering his butt by having you come in. Yes, there really are people who will sue for lack of care when the doctor cannot do anything useful anyway...very sad.

Maybe changing to an annual visit would be good. If your husband likes getting out of the house and seeing doctors is the reason, perhaps you can take him out for other reasons. Maybe drive in the country or see unusual parts of your city. Actually taking him places may be a challenge, but driving is a good way to get out of the house and change the pattern for a day.

[There was a time not so long ago where doc visits were the only reason I could muster then gumption to get out of the house - I recognized that I was loo
king forward to the visits because they forced a change - so I started setting an appointment for me to get out. It worked wonders!!]

My husband was diagnosed w/Alzheimer's dementia by a very detail mental acuity tests, Then we saw him together fo the next 11 months, A shorter version of the acuity tests followed. By his original diagnosis, he was at the start of severe level. After the 2nd tests we saw his neuro-physiologist monthly for 4 months. By that time the doctor had given me a good education about Alzheimer's, of how fast he was going downhill, did not recognize me as his wife, just a lady who took care of him. We only had to go back to doctor if a problem arose. He died 5 1/2 years after his original diagnosis which was a very short time. I am thankful that his doctor taught me how to handle his downhill progression as I knew nothing. We lived across the country from all of our kids and I was already using a cane for walking. Without that doctor, I do not know what I would have done. In my case, he never got violent, just lost and more confused. Maybe your doctor can give you the same kind of help.

I left out that his original doctor was the neuro-psychologist we always saw. Sorry for the mispelling.

Why not take your husband's GP's advice on this? There might be something to be said for keeping track of your husband's condition, but if the information itself isn't useful... you can always go back to the neurologist if the need arises, I suppose. But I'd ask the GP anyway because there might be very good reasons for a neuro consult that we lay people don't know about.

Is your husband's primary care comfortable treating him for Alzheimer's? Will he prescribe any necessary medications, perform the necessary memory tests to track any decline in cognition,... Often Alzheimer's disease is monitored by a PCP who is comfortable working with this population and who has geriatric patients as the majority of the patients that he sees on a regular basis. If/when the disease reaches a point where behavioral issues arise, is your husband's PCP comfortable handling these issues or does he have a specialist (geriatric psychiatrist) that he refers his patients to? If your husband has no neurological conditions such as Parkinson's disease, seizures, multiple sclerosis,... then it may not be necessary to continue with the extra travel or expense. Explain the situation to your husband's PCP and see what he says. Best wishes!

I took my Aunt to Nuero and he only ask for her to get MRI scan and blood work done. He did not ask her to come back as he already made his assessment and diagnosis.

if this physician’s service is adding noting, skip it.

My Dad’s neurologist told a 15-minute story, then asked complicated questions that none of us could have answered correctly, then returned a diagnosis of dementia. There was no dementia. It was ridiculous.