Upcoming neurology appointment for mom

Quilting brings calm

Finally got my mom to agree to see a specialist.  In Jan 2020, she had an intake appointment at a geriatric psychiatrists’ office. Refused to go back  because ‘talk therapy’ wasn’t going to help her ‘anxiety and  depression’.  Plus the pandemic hit, so not a good time anyway.  The person she saw informally told me MCI at the end of that appointment.  The PCP  prescribed  Rivastegmine, and later Xanax and later still  Trazodone. 

 We all ( except her and Dad) thought  in the  fall of 2019 after a crisis that  she had dementia.  She had an MRI then and I think a CT, but she also had a misdiagnosed UTI that became urosepsis.  The MRI showed chronic micro vascular ischemic changes.    Her PCP thinks it’s vascular due to previous TIAs, a stroke, and a brain injury with swelling. 

She’s crying again every day, besides all the other stage 4 dementia behaviors.  None of those 3 medications seem to be doing their job, even though she might be sleeping a little better. The PCP suggested a referral to a dementia specialist last month.  So I finally got her to agree this weekend, and sent the PCP a message Sunday.  I got the call from the referral office at the local hospital system today.  She’s got an appointment at the Memory Clinic mid August.  Her  PCP didn’t waste  a minute - I love that guy! 

So hopefully we can get a more definitive diagnosis, prognosis, more effective medications.

Being as we already know she has dementia- what questions should I ask the neurologist that she is scheduled to see? 

Stuck in the middle

I would keep a diary of the things she says and does, and summarize her behaviors in a memo to the doctor shortly before the appointment.  At the appointment, I would ask "What should we do now?"

She is probably right about the talk therapy.  Talk therapy is excellent for anxious and depressed people who are able to reason, but not so helpful for others.

Iris L.

Since she has vascular issues, attention needs to be paid to cardiovascular health, such as blood pressure and cholesterol for example. Make sure other medical causes have been ruled out.  

Iris L.

Quilting brings calm

Stuck - The ‘talk therapy’ comment came from mom, because that was her understanding of what the geriatric psychiatrist was going to do. Mom thought she was there for depression( our Fiblet) I knew they were evaluating her for dementia.

That first appointment was for the one page 10 question cognitive test, along with the clock  drawing test, and just to talk to Mom. If she had gone back, there probably would have been more tests run and some medication ordered etc. So instead, we got the PCPs best attempt at medication. 

Iris - Her PCP keeps a close eye on her medical situation, blood pressure, etc.  I will ask the specialist to verify all that though. I think I will ask for another MRI, etc since it’s been almost two years.  Can’t hurt to compare to the last one.  

I’m interested in whether it really is vascular or whether it is mixed. If it is vascular, it seems to be the version that happens gradually instead of stair step declines. 

Jo C.

Good idea and on the right path to get her to a source of excellence for accurate diagnosis for type of dementia and for screening on an expanded basis.

You have probably already done it, but if not . . . . look at the side effects of all of her meds. They may not be the driving factor in causing the changes; BUT the possible side effects are staggeringly uncomfortable; if she is experiencing one or more of them, she may not be able to identify that to tell what is happening and it may be contributing to the problems..

Best to request that the Neurologist at the center check and confirm actual diagnosis for type of dementia as meds for one type can be contraindicated in another and make things worse; I had that happen with my mother.

Best to ensure that the center have a full outline re changes in behavior, cognition and function.  I could not talk about my mother in front of her, so I wrote a succinct but detailed memo outlining all the factors mentioned above - got it to the doctor ahead of the appointment, but also carried a copy with me so if the doctor did not get it, I could provide it. Without all the information, the exam and plan will be lacking.

So hope all goes well and that you are able to get some good input and a care plan that will truly help your mother to a better quality of life which of course will make your quality of life much better.

Best wishes being sent your way; let us know how it goes, we will be thinking of you.

J.