We were on a LONG waitlist for an appointment with a neurologist. A miracle happened and we have an appointment for this Monday with a nurse practitioner in the neurology department. This is for my 80 year old mom, who has been sick for close to nine years. There were times in past years where she walked down the highway to escape imaginary killers, and called police day and night because she saw and heard people. She is now in a memory care facility. Her dementia is variable and has almost nothing to do with her memory. The psychosis has calmed down in the last several months, maybe due to her anti-psychotic medication. She doesnt hallucinate at all presently, but she still asks me if she's being videotaped. She had a stroke in July 2025.I want to make a list of questions to ask at this appointment. Any ideas?
If I ask, "What is mom's diagnosis?" I'm afraid the nurse will say, "We can't be certain" and my mom will start arguing that she doesn't need to be in a care home because there's no proof she has dementia. She likes to tell doctors that I sold her house and won't let her stay at my house, I won't let her do this and I won't let her have that, etc. I want to ask about some of the things I've seen on MRI reports - small vessel disease, dolichoectasia, unruptured aneurysms, stroke. I want to ask if her medications are good enough. I also want to ask what we can expect - should I not ask about prognosis?
It may turn out that they can't conclusively diagnose her cognitive issue, so maybe go to the appt with a pre-pondered "script" of what to say if she starts to argue. I would think "tabling" the topic, or distracting/redirecting the conversation is a strategy option. Don't follow her down any rabbit holes, no matter how determined she is to lead you there. You are moderating that appointment, not her. Don't let her ramble on and use up all the alloted time for this precious appointment: "Mom, we have limited time with the doctor, so let's talk about that later" then focus on the doctor and move on.
Maybe one question to ask is how often are cognitive problems specifically "undiagnosable"? Just because they can't pin-point it doesn't mean there isn't a problem/diagnosis. It's like having seizures but not being able to figure out why. The person is still having seizures.
I wish you and your Mom a fruitful appointment!
And I agree with MG8522 who recommends trying to get this information to the Dr or intake before your visit, so your mom does not try to control the narrative.
I was on the phone with my dad's pcp and neurologist more than he actually saw those doctors--I explained his behavior, discussed medications, etc. MyChart was used to communicate valuable info.
I also agree that a specific diagnosis might not be pinpointed--but what you've witnessed in your mom will guide you more than you realize, simply by doing research on the internet and on sites like this forum. Dementia tends to overlap.
I gave up hoping for a diagnosis in my dad because I thought nothing would help--but boy the medication certainly did! Seroquel and as needed anti-anxiety gave him much needed peaceful days and restful nights.
Your questions are really for a doctor and I am disappointed you are seeing a nurse instead. Honestly, in this specialty I see no excuse for such a thing.
SO questions are:
1. I am concerned that in something this specialized we are seeing a nurse rather than a doctor. I find this very worrying. Can you please describe your role here for me? Are you here tests? To gather information?
2. What tests will be be running in terms of the usual MoCa, SLUMS, and etc. What scans will you be running? How well versed are you on Mom's history and on what medications have helped or not helped her; what information do you need from us?
3. After seeing you, what are next steps?
4. How likely are we to get a DEFINITIVE diagnosis. It seems of late half the seniors who seem to have dementia are suddenly being diagnosed as bipolar? I am concerned because legally there is a good deal of difference in the law about how we can manage or not manage for a senior when the diagnosis between dementia and mental illness are ill defined.
5. What letters can we expect from your office that define whether or not my mom is able to manage her own health care of executive functions? We her family need to be able to know how, when we can act for her protection.
6. What followup and followthrough can we expect from your office.
7. Most importantly, this is a specialty. When will we see a specialist. I fully understand you, as a nurse, may have some special training, but you are far from being a doctor, and we have requested a doctor's diagnosis and prognosis.
Just a few things to mull and put in your own words, adding a few more of your own.
For some diseases and some specialties are, in fact, good treatments exist which can reverse or stabilize a given disease. Unfortunately, for your Mom, that reality does not exist for her particular disease. At best, the course of dementia can be slowed down but it cannot be reversed. What meds are available at present have likely already been prescribed for her. Sadly, they don't change the overall picture much. Treatment is aimed at altering or promoting circumstances - on an individual basis - which helps both the care giver and the patient cope with this terrible disease.
You want the prognosis? It is not good. The disease continues to progress robbing the patient of all manner of personhood. At some point they die. But the memory of when they were with us and their spirit resides in our heart.
Meanwhile measures are suggested and/or implemented so as to help everyone involved cope with this reality and make the best of a bad situation. The NP can do this as well as the physician and neither has a silver bullet to make Mom well again. The NP also has constant and continued access to the physicians - we talk daily with them - so if there was something the physician could implement or some question which came up, she could run it by him (or her) by the end of the day.
You want to ask if her medications are good enough. Good enough for what? What is your goal? Yes, certainly ask what medications are appropriate as well as what to avoid.
The nurse may be vague about a prognosis. It's a bit like looking into a crystal ball and seeing the future. Doctors and nurses are afraid of giving information with any certainty which could turn out to be very wrong.
You could ask what the progression of her condition typically looks like. With alzheimer's/dementia, it always changes; it always gets worse.
Honestly, I'm kind of wondering why you are stirring this hornet's nest, and what you hope to gain from a visit to a neurologist. Does her memory care require an update/diagnosis in order for her continued stay?
If she has been doing well in memory care, I would not rock the boat, just let her stay there as long as they are able to keep her. At some point, her needs may become more than this facility can manage. They will let you know when that happens, and she will need to transfer to skilled nursing care.
I think the piece of information I would want from the neurologist is whether she has a medical disease causing dementia, or a mental illness which can be managed with proper treatment and medication. Or, if she suffered a temporary episode of mental instability due to an illness which has since cleared.