Cautiously optimistic

Anonymousjpl123

Appointment with neurologist at memory center next week. Mom has been diagnosed with dementia, this is to see what kind. I hope we learn something.

M1

I'm going to sound like Debbie Downer here, but I would caution to keep your expectations low. Better that than to be disappointed? Have you thought more about what you're specifically hoping for?

JeriLynn66

@Anonymousjpl123 If there is peace “in the knowledge”, I hope you find that.

But having read your every post, I pray you find peace in your every effort to ensure a safe environment for your Dear Mother and in knowing you have done everything possible in your loving heart to honor her. ❤️

SusanB-dil

In a lot of cases it may not matter a whole lot. But it did help us to just know 'something'. Both for having a better, say, more tangible, understanding of what we are dealing with for us personally, and probably more important for her as far as which medications may work best. So I hope it does work out for you.

Anonymousjpl123

@M1 you are not Debbie downer, but a realist. Im worried about the speed of her progression. Maybe it’s me, but it seems faster than I expected and than other residents. MC staff told she hallucinates and gets paranoid. She can be so out of touch with reality - but then sometimes almost lucid.

I worry it is something beyond the dementia and NPH, and hope the doctors can tell me.

examples: Yesterday she said she was leaving, staff said she moved all her stuff into the hallway “for the movers she hired.” Apparently she sometimes talks to me when I’m not there. The other day she told me she was getting married to another resident; the next day she called panicking wanting to call it all off. That delusion lasted one day; she thought it had been weeks, told me a whole story of their courtship, proposal, and breakup. This is so much worse than she was.

@SusanB-dil I do feel like knowing more would help to determine which meds she should be on.

@JeriLynn66 thank you for your wishes and reading every post. It means so much. This is the only place I feel people truly “get it” from my perspective.

M1

@anonymous i would suggest you start right there with what you tell the docs; ie specifically that you're concerned about the speed of progression and about the delusional thinking. Maybe they can address those things specifically. Remind me, is she on an antipsychotic like Seroquel or Risperdal? This may be more of a behavioral issue than the neurologists are prepared to take on, though since it's a memory center they may have a psychiatrist on staff too.

I guess I'm just apprehensive for you that they may not be as helpful as you're hoping for. And/or that your mother may not cooperate.

Anonymousjpl123

@M1 exactly right - and that’s what I think the problem has been (outside of scope of standard neurologist).

the neurologist she sees next week specializes in dementia and wrote a book on that and other neurological disorders - not that it makes her a great clinician, but I’m hoping she can refer me to a psychiatrist who can help or at least shed some light if it’s outside her purview.

right now no antipsychotics, because the doctor and staff at MC wanted to wait until she sees the neurologist to see if it sheds light on what’s going on for her.

Anonymousjpl123

Wow. Quick follow up. Mom’s place is amazing. Their psychiatric NP was in today and had a cancelation, so they had her see mom. She met w/ my mom for a long time, and after consulting with psychiatrist called to ask me about putting her on 25mgs of seroquel to start. She said mom was very pleasant but very confused. They know about the upcoming neurology appt. but didnt want to wait since my mom has been starting to refuse care. She feels my mom needs both.

Im sick to my stomach. So much medical care and she’s still getting worse.

M1

I think that's good news. We started it for sleep fragmentation and it was effective the very first night. Hope it will be for you too...I think it's a good choice. Caveat is that there can always be adverse reactions, but here's hoping.

Anonymousjpl123

Well just a quick update: the seroquel helped the first 2 days, a LOT, but then my sibling who she hasn’t seen in a very long time came for a surprise visit. Thankfully she recognized them and it was a positive reunion, but she is still very in and out w/periods of paranoia and delusions.

I spoke to the neurologists office and left a detailed message for the doctor in advance of We’d. appt., which I already see in her e-chart, so that’s good.

irene912

https://alzconnected.org/discussion/68180/cautiously-optimistic

Good luck. I have not had good luck with neurology in my area. I was once so concerned about my mom's diagnosis. I realized it's just the umbrella term- dementia. Main thing is to care for her & yourself, no matter what the doctor 'labels' her as. Just my opinion. I've been in your shoes.

Anonymousjpl123

@irene912 it is so funny because NO ONE understands this like someone who has been through it! I 💯 percent agree with you. My mom now has both the dementia and NPH diagnosis but nothing seems to have really helped. The MC said it would help to know what kind of dementia she has. If this place (Memory Center at a major hospital) can’t do it, I throw up my hands. She has been to one neurologist twice, saw 3 other neurologists while hospitalized, and has seen neurosurgeon twice. She has had MRIs and blood tests. I’m baffled by how little has come from it all.

It’s horrific because part of me envies people who seem to get a diagnosis so easily. My experience has been the opposite.

irene912

https://alzconnected.org/discussion/comment/198990#Comment_198990

If scans & blood tests don't show anything, doctor's don't know. Don't think there is an answer. I get your frustration. I hear others say, my parent has this, was diagnosed with this...I think ok, but how is he/she & how are you coping? My sister would say, why are we seeing a neurologist, what good will it do? But I felt like I had to just check it out, explore the avenue. So I hope it works for you.

Anonymousjpl123

Finally, some answers. NPH, yes, but it’s secondary. The doctor sat with us for 3 hours (granted lots of tests). Reviewed symptoms, then showed me the MRI/brain scans over time.

After all this, it’s flat out Alzheimer’s. She doesn’t see any Lewy body symptoms or Parkinsonism symptoms, no signs of vascular disease. She did say that the amount of brain loss may be why everyone focused on NPH: apparently my mom had had this for a while (signs in 2019), but because of her high cognitive reserves no one noticed.

She is now my mom’s primary physician. My mom loves her. she told me the names of two medicines for Alzheimer’s my mom could take, but said both had side effects and may not help. She spoke openly in front of my mom, but was so respectful and straightforward I don’t think it clicked. My mom claims she has no memory issues anyway, even though she literally looked at me to answer every single question.

After all my fear about the surgery, she said it may have helped with incontinence, but doubts it would have helped with memory/cognition. She thinks the paranoia and hallucinations are a combo of progression and anxiety (which she has always had).

After working so hard for the diagnosis, it’s so anti climactic. There’s nothing to be done except managing symptoms. She says low dose seroquel is good. Will see us 7 months.

I don’t know what I thought I would feel, but I just feel kind of numb.

M1

@A, I think that is what I was trying to warn you about. But: it's very, very good that your mother liked her and is willing to see her back, she may end up being an important resource therapeutically, and that's no small thing.

SusanB-dil

Maybe 'kind of numb', but at least you have an answer, and a knowledgeable provider that mom likes. Also helpful about which meds.

And so we trudge on and go from here. As is pretty much the norm for us. It is, it is...

Emily 123

A high cognitive reserve seems to make it hard to know for sure until things are truly well-progressed. Of course you wanted to explore options. At least you know now, and you have a physician that both you and your mom like. I'm sorry.

Anonymousjpl123

Alzheimer’s disease dementia in the moderate stage, with behavioral disturbance (delusions).

It’s funny to see it in print. I do feel relieved to have a great doctor. You all are right about that. We are lucky to have gotten the appt - granted the first available for new patients was seven months out. Geez.

Thank god you all are on this journey too. Thank god.

housefinch

I hope you can feel some peace at least that you have some questions answered. And you can avoid looking back and having regrets. You need your energy and mental health for yourself and the road ahead. That’s great that she liked the doctor—-that’s a positive! Sending you strength.

Anonymousjpl123

@housefinch i appreciate it! I wish I felt better. Oddly, I think some part of me was hoping it would be something else because I would have something to do. You are absolutely right: no regrets, no stone unturned. I liked having something (her diagnosis) to focus on. Now I as @SusanB-dil says, I trudge on with everyone else. I do feel grateful to have access to care and support, please don’t get me wrong. I just wish we had more to do.