Cautiously optimistic

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.

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 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.

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.

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 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.