Neurologist appointment 5 years in

sandyeigo

Hi! Real quick summary and then my questions. My mil has been living with us for about 8 months now. She was diagnosed with FTD, specifically PPA, five years ago. She has not had a neurological appointment in about 2 years and this one was only scheduled at my request as I had very little (as in no prior) involvement in her care up to her moving in. My DH and SIL seemed resigned that there is nothing to be done (which I realize there’s not a lot) and were inclined to just deal with things as they come with very little information. Which is not necessarily how I operate. I tend to like to have as much information as possible and be as proactive as possible. They had tried some anti depressants in the beginning for anxiety etc, but ultimately decided against trying more medications. At that time she had been living alone. Currently on a good day the casual observer would not be aware of her condition and it’s hard to say where she is as far as stages based on my very limited knowledge. As far as meds currently she only takes B12, D3, and a gummy at bedtime to help her sleep, which doesn’t really seem to be having much impact.

So now my questions. What kinds of things should I be asking the neurologist? What kind of tests if any, are appropriate at this stage (already diagnosed and previously has scans to confirm diagnosis over two years ago). What can/should we expect from a neurological exam? My DH feels like they just get shuffled through and the doctor doesn’t really provide anything. I’m inclined to feel that is because they (DH and SIL) are largely uninformed and don’t know what to ask. I have started reading the 36 hour day and the level of medical involvement described is definitely not in place here. I feel like we’re flying blind. I also think she needs a geriatrician as currently she goes to a family practice and does not necessarily see the same doctor every time and seem largely uninformed about her condition. What things should we have in place as we go forward and what resources should we be seeking out?

eaglemom

Welcome to the message board, I'm glad that you found us. You've ask several very good questions. I'll try to answer them, but I'm going to ask you several questions about your MIL.

She's been living with you for 8 months and relatively things have gone well? That's what I'm getting from what you wrote. Does she have any friends her own age? What does she do during the day? If your, for example running an errand to the grocery store, and you ask her to go along, will she come? I'm trying to see how involved she is with your family. Was this a move she wanted?

As for DH and SIL, their behavior is typical. Yes she's their mom, but no, they don't want anything wrong with her. Once they admit somethings wrong they have to accept that fact, and clearly neither one is ready for that yet. That's something they have to do on their own, you can't help them get there. Personally I think its wonderful you've taken your MIL in and are trying to help her as best you can.

As for the neurologist appt. just go in with an open mind and see how the appt goes. This neurologist might be a good fit for your MIL or might not. On a personal note, the neurologist my DH sees - I don't really care for him, or maybe its his manner, I don't know. But, my DH loves him, they get along well and he's been spot on for DH for almost 14 yrs. I wouldn't change it, but he's not someone I would see. I would think this appt would be one of trading information and seeing if your a good fit for one another. Ask as many questions as you want. On the paperwork, make certain your name is there so you can speak to the office for your MIL or on the patient portal.

I've not answered all of your questions, but hopefully started you on the right path.

eagle

harshedbuzz

@sandyeigo

Will this appointment be with the same neurologist or someone new to her? Is this neurologist who is more of a generalist or is she being seen in a specialty memory center? Are you attending the appointment this time? Do you have the HIPAA clearance to discuss her medical issues?

Sometimes the structure of appointments in a non-dementia clinic aren't conducive to freely reporting symptoms and behaviors as it can feel like "throwing mom under the bus". At dad's memory center, a resident would take dad to a different office to administer paper & pencil cognitive testing while mom and I met with the neurologist to discuss concerns.

You sound a bit like a Type-A planner. I am too. Unfortunately, it's really hard to predict how dementia will impact a person going forward. Beyond having a Plan B should you be unable to care for her at home and obtaining a POA, there's not much one can do to be proactive.

It sounds like maybe you think she should be taking some sort of medication. Are there symptoms, behaviors or moods that need addressing? There's not much out there for treating the actual dementia. With FTD, she would be a candidate for the new infused medications. Some people with FTD react poorly to the older Alzheimer medications like Aricept and Exelon so they are not prescribed for this diagnosis as a rule.

A neurologist may be able to prescribe something to improve her sleep. For things like depression, agitation and anxiety, a geriatric psychiatrist would be my first choice. Dad was seen at a big university memory clinic, but it was his geri psych who was the most help. The clinic was great fro a comprehensive exam and diagnosis, but not so much for ongoing care.

In terms of stage, you know more about where your MIL is in terms of progression than any doctor can parse in a 30-minute exam during which she's likely to showtime. Besides, most docs use a 3-stage model based on treatment rather than the 7-stage one that is based on caregiving needs. There are checklists in the New Member Group under "groups".

HB

H1235

If there are specific questions you have that your mil may be offended by, you might consider sending the the doctor a message through a patient portal. I found the pcp was clueless regarding dementia and often took moms inaccurate account of thing way too seriously with no request for input from me. Is she having trouble with depression, anxiety or anger? Medication for these things can be helpful, but they can be time consuming to figure out. Doses have to be started low, then slowly increased. If it’s not helping, the the dose needs to be slowly decreased and the process starts over with a different medication. If you have questions about if it’s safe to leave her home alone (common question), I think this is a good time to ask. My mom did not want to listen to us! So she often asked the neurologist what they thought. She seemed to take the news that she shouldn’t be mowing her lawn better from the neurologist. The neurologist would tell her she needed to listen to us, it stopped her from arguing about things. After diagnosis I asked about the purpose of follow up visits. I was told some people like to touch base and ask questions (appointments were every 6 months). She said others never come back after a diagnosis and delt mainly with their pcp. You said your husband and sil seem resigned that there is nothing that can be done. I’m sorry, but other than treating the symptoms they are probably right. Although treating symptoms is very helpful and important (in my opinion). I hate not knowing what to expect next, but you are probably not going to get a neurologist to tell you what to expect next. Mom has been to several neurologist appointments and not one told us a stage. I think they use a three stage model (not helpful in my opinion). I’ve attached the DBAT staging tool. I found this gave me some kind of very rough idea of what I might expect moving forward. But with FTD she may not move in the same path as those with Alzheimer’s. My mom has vascular dementia and even that has some differences (less memory issues, more reasoning problems). I hope things go well.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

sandyeigo

https://alzconnected.org/discussion/comment/242000#Comment_242000

Thank you so much for your response! To answer your questions, I only work part time some mostly she is home with me during the day. I include her in most everything I can do that she can easily participate in, shopping, laundry, housework, yard work, cooking, etc. is always eager to help but it definitely doesn’t fill her days and it’s hard because at this point she has no interests of her own and waits for me to provide direction. A friend recommended sticker by number books and she really took to those but unfortunately, if I don’t have anything in particular happening that day that she can help with that is what she spends the majority of her time on. She has lost interest in TV, I believe because it is confusing, she’ll watch if we watch but that’s about it. Doesn’t read, although we’ve tried a few books of short stories, again, not entirely sure she follows what she is reading. She used to do word searches but those also became too frustrating.
As for how things are going, it’s mixed. We had spent a few months living with her while we had work done to our house to prepare for her to move in and to acclimate her to having “roommates” again. She also had no social life outside of family and was no longer able to drive so she had been pretty isolated. By the time the move happened she wasn’t thrilled but she didn’t offer a lot of pushback. The biggest issue we have had is our concerns about her being home alone on days my DH and I both work or when we have tasks outside of the home she cannot attend. In the time she has been with us she had one instance of going on a walk alone and had a pretty scary fall. Thankfully only a broken nose but that coupled with a few questionable decisions makes us uncomfortable having her alone and there is not a lot of family nearby. My SIL offers a good amount of support but is also works full time along with trying to just have a normal life as possible. We get a break about 1 or 2 nights a week and I usually have one full afternoon to myself where she is not home.
Given all that we made the decision to try a Senior Center that had an Adult Day care. I posted about that experience previously. Let’s just say it has not been well received and we are exploring other options.
As for the neurologist, they have all seen this person before. They are the one who diagnosed my MIL 5 years ago. As far as I can tell both my DH and SIL are unimpressed. This will be my first meeting I will be attending with them and am just trying to get an idea of what I should be expecting because I don’t get the sense anyone else in the family has any ideas.
Hope that covers it and thanks again for your response!

sandyeigo

https://alzconnected.org/discussion/comment/242004#Comment_242004

It’s funny you suggest I’m type A! I definitely don’t see myself that way. But I am very proactive about my health and it bothers me when my DH is not. I’m in a weird spot as she does fall under my care the majority of the time as I am home the most, but none of the decisions are necessarily mine. It’s probably tmi but my DH and I met in our 40’s and have only been married 11 years. We were both independent adults coming into this relationship so I don’t really have a relationship with his family and now I am tasked with caring for his mother. It does make things a little awkward as there is not really a foundational relationship.

The appointment is with her neurologist who gave the initial diagnosis 5 years ago. It’s a good point about whether or not I have clearance to be in the room. I don’t expect my MIL will object to allowing it as I have taken her to other doctor appointments. I think my DH wants me there because I am asking him a bunch of questions he doesn’t have answers for and is not inclined to be assertive. He clearly doesn’t like this neurologist and decided the they are just going to get them in and out as quickly as possible. He has no belief in their ability to provide any value. This appointment was scheduled at my request because she has not had a check in for more than 2 years.

Initially there was some discussion of drug trials but it always fizzled out. She had tried some antidepressants, she does show signs of depression, but that was right after the initial diagnosis and she was living alone at the time and not consistent about taking her meds. She is resistant to doctors in general, anytime she has to go even for a dental cleaning she doesn’t understand why she has to go because she is “fine”. There were also suggestions of seeking a psychiatrist initially to help her cope with the diagnosis. It also fell on deaf ears.

I guess all of this is very new for me so I’m trying to be as informed as possible as this is our life for the foreseeable future and I have no idea what to expect from doctors. I read lots of things that talk about people having a whole team of doctors and all we have is the random PCP at the family practice down the road who may or may not even be reading her chart before her visit. I’m just trying to make sure we taking advantage of any and all available resources. What adds value and what doesn’t.

Thanks again for your response!

Arrowhead

Once a diagnosis is done, there’s not much else a neurologist can do, except for prescribing medications for additional complications. They may be agitation, sleeping problems, disturbing hallucinations, or others. Mental ability tests can be given but they only give a general idea as to the patient’s regression. I also like to have as much information as possible and to be as proactive as possible. Unfortunately, neither one will change the digression of the disease. I imagine your DH and SIL seem resigned that there is nothing to be done based on their experiences trying. My wife is nearing the end of her journey and I have been flying blind for most of it. Every patient is different and has different problems at different stages. Change is constant, and each has to be dealt with as it happens.

SDianeL

what Arrowhead said. I stopped Neurology appointments because there is nothing they can do. The disease is progressive with no cure I asked for a referral to a Geriatric Psychiatrist who is best able to prescribe anti-psychotic meds if needed. Those meds may help anxiety, depression, agitation, sleep, hallucinations and delusions if/when those behaviors surface. I also stopped many specialist appointments unless they were absolutely necessary. One other thing to consider is whether your MIL is able to stay by herself. If there were an emergency would she know what to do? You mentioned she went for a walk. Many with dementia wander off and that would put her in danger. You can test her ability to be alone by asking her what she would do if a fire broke out in your house. See if she can answer. Can she use a phone? Come here often for info and support.

harshedbuzz

@sandyeigo said:

The appointment is with her neurologist who gave the initial diagnosis 5 years ago. It’s a good point about whether or not I have clearance to be in the room. I don’t expect my MIL will object to allowing it as I have taken her to other doctor appointments. I think my DH wants me there because I am asking him a bunch of questions he doesn’t have answers for and is not inclined to be assertive. He clearly doesn’t like this neurologist and decided the they are just going to get them in and out as quickly as possible. He has no belief in their ability to provide any value. This appointment was scheduled at my request because she has not had a check in for more than 2 years.

IME, neurologists who focus on dementia aren't typically warm and fuzzy types. The 2 Dad saw had terrible bedside manner. I suspect it's unhappy work given that they don't really have much to offer beyond the diagnosis. There are no FTD-specific treatments; the infusions aren't available unless one has confirmed Alzheimer's and the "memory" medications (which can improve function in some folks with Alzheimer's and VD for a time but don't slow disease progression) don't help in FTD and often make folks worse.

Initially there was some discussion of drug trials but it always fizzled out. She had tried some antidepressants, she does show signs of depression, but that was right after the initial diagnosis and she was living alone at the time and not consistent about taking her meds. She is resistant to doctors in general, anytime she has to go even for a dental cleaning she doesn’t understand why she has to go because she is “fine”. There were also suggestions of seeking a psychiatrist initially to help her cope with the diagnosis. It also fell on deaf ears.

A general psychiatrist generally won't see patients with dementia. Nor do they do talk therapy, you'd need a therapist, counselor or psychologist for that. By the time a person is diagnosed with dementia, they wouldn't have the memory or executive function to learn strategies to cope, nor the ability to recognize when they need to apply them. She'd need a geripsych who would likely do medication management. She might be depressed or anxious, but the apathy you are describing is another symptom of dementia.

Dad's geripsych was warm and engaging and Dad looked forward to his appointments there. It can be hard to get in to see a geripsych, especially in an area that isn't well-served medically. We all loathed his neurologist.

I guess all of this is very new for me so I’m trying to be as informed as possible as this is our life for the foreseeable future and I have no idea what to expect from doctors. I read lots of things that talk about people having a whole team of doctors and all we have is the random PCP at the family practice down the road who may or may not even be reading her chart before her visit. I’m just trying to make sure we taking advantage of any and all available resources. What adds value and what doesn’t.

Books like The 36-Hour Day, an IRL local support group and this place were a lot more useful to me that any neurologist we ever saw once we had the comprehensive work-up. Once we started with the geripsych, we made the decision to stop the yearly neurology follow-ups as they'd become worse than pointless. I had some concerns about my mom last year and brought her to the PCP to do a screening and order the initial testing which revealed Lyme Disease; her cognition improved with treatment. I'd planned to have her seen at the same memory clinic for an evaluation if needed, but once that was done, we'd not be doing follow-ups. FWIW, I have a dear friend whose mom with Alzheimer's was seen by her PCP exclusively. At the end of the day, her care was as good as dad's and their outcomes the same.

I hope you have a good appointment. Dad's memory care clinic had social workers who were familiar with programs in the area. I'd ask if MIL's doc has access to one as well. They can be helpful. If not, the Area Agency on Aging office might have resources they can share.

HB

sandyeigo

Thanks everyone! I appreciate everyone's insight. I definitely have to continually remind myself that no matter what we do, things are going to continue to progress and who knows if any actions we take will help to slow the progress or not.

I guess I am mostly interested in what her brain scans look like as compared to previous but perhaps there's no real value in knowing that. It also happens that my brother has Muscular Dystrophy. Another progressive disease. He is now 50 years old and once he was old enough to decide for himself, never had any testing to track his decline. He knows it is happening. He doesn't want to track the rate. It used to drive my parents nuts.

I get the difficulties in finding the right medications. A lot of trial and error, which is why I believe her family opted to stop. They didn't see a lot of value in it, and as recent research seems to be finding, some people are perhaps genetically not going to respond to certain medications. They discussed having her tested to see what if any meds her body might be most responsive to but ultimately decided not to.

I'm also having a hard time determining how to find resources. My DH found someone who was offering consultations and reached out. She scared the ever living poop out of him. This person was obviously traumatized by their experience with their LO and Lewy Body Dementia and just filled him with images of horror and dread. I had to reassure him that everyone is different and that her experience is not necessarily going to be our experience. I see people referring us to the Office of the Aging? Our county has one, but it's not clear that they offer anything beyond a list of links to local resources, none of which are necessarily appropriate to our current situation. I did a search for social workers in the area and came up blank even though I know they are available. I have someone who recently went through this with their own LO and need to pick her brain more for resources, but that also means listening to how I can cure my MIL by making her take turmeric and cinnamon or ivermectin. And certainly, I understand the impulse, if I thought I could have my mil take those things to no harm and possibly some good, then why not take the chance. But if any of you out there have tried to make turmeric palpable to folks of a certain age you will understand the difficulty. Some folks are open to that stuff and some folks have never eaten a salad a day in their life. Perhaps I'm venting….

As note, despite advice to the otherwise, I felt it was necessary to tell her she has dementia this morning. She has been going around and around with my DH about why she needs to go to the senior center when we both work. He keeps telling her he is worried she will fall while alone, which has not been an effective argument. In light of her neuro appointment next week, it seemed ok to broach the subject. She didn't understand or remember what it meant. I tried to gently explain that it means she has damage to her brain. Not her fault, but something that is happening. And because of that sometimes she has trouble doing things that she would have normally done. I didn't want it to be a pile on, so we just tried to bring up a few instances that might resonate and how unfortunately the damage to her brain means we can't predict when something might happen. That she may not realize that she is doing something unsafe even if right now she thinks she would never do that. Like when she got lost driving on familiar roads, which she remembers happening. I didn't want to scare her. And I'm praying that it doesn't cause her to ruminate on it and worry, but she has not seemed to remember her diagnosis the last year, and it has been difficult to dance around it. I suppose my inclination is also to be as direct as possible. Making up lies about why she was going to the senior center were not working and my DH constantly harping on the possibility of falling were just making her angry and indignant that she should just be constantly confined to a chair in the house. Which is not the case, and the subject was becoming a reoccurring battleground. Again…perhaps more venting…She was sad when we talked about it, and again I was careful not to pile on example after example, just tried to focus on the unpredictability of the progression, which is scary enough unfortunately. I have no idea if it was the right thing or not, but it did stop the argument with my DH about whether or not she was going to have a catastrophic fall so we'll see how things go tomorrow when she is scheduled to go to the center. I don't have a lot of hope that it will not be a battle, but we shall see.

In closing I will quote one of my favorite movie quotes…."it's really human of you to listen to all my bs" so many thanks.

JeriLynn66

Sandy,

Regarding local resources: if there is a local memory care center with a Social Worker available, you might reach out to them for assistance with information.

If your MIL is by chance on a managed medicare plan, call the plan and ask for a Case Manager for assistance.

Also, this site has an 800# to call for assistance. Ask for a Care Consultant. They are licensed/trained Social Workers who specialize in dementia care. A wonderful resource for advice and they may also be able to point you in the right direction for resources in your area.

Good luck in the journey. You've come to a great place here.

Arrowhead

Once a diagnosis is done, there’s not much else a neurologist can do, except for prescribing medications for additional complications. They may be agitation, sleeping problems, disturbing hallucinations, or others. Mental ability tests can be given but they only give a general idea as to the patient’s regression. I also like to have as much information as possible and to be as proactive as possible. Unfortunately, neither one will change the digression of the disease. I imagine your DH and SIL seem resigned that there is nothing to be done based on their experiences trying. My wife is nearing the end of her journey and I have been flying blind for most of it. Every patient is different and has different problems at different stages. Change is constant, and each has to be dealt with as it happens.