Mom (88 YO) moved from NY to NV in April 2021, after Dad’s death late 2020. By late May we were seeking Neuro & Neuropsych consults to figure out what was going on. Her short term memory was almost non-existent. By fall she couldn’t make her way to our house 700’ away for daily dinner; told siblings she never saw me (despite her being totally dependent on us for all transportation, medical, and daily dinner/walks). Diagnosis was vascular dementia, coupled with grief, anxiety and depression.
Frustrated by lack of integrated medicine…do the specialists and PCMs even read the reports from the sun specialists and others they refer you to? I sought out-of-network Neurology support from one of the national leaders. We’ve seen them 3X, added a cholinesterase inhibitor to Mom’s Namenda, but it’s clear her disease is progressing. We pay out-of-pocket since it’s non-network.
my Question: How long in this journey should I seek the additional neuro support? Or, once she’s stabilized can we go back to her PCM managing total care? Or, should I use her upcoming birth month opportunity to change her Medicare Advantage Plan carrier? Or, should she drop the advantage plan and be on straight Medicare at this point?
thanks
Please note that this is my own opinion and I would hate to dissuade anyone for doing what they feel is best.
Once my Husband was diagnosed with Alzheimer's and the Neurologist sent us on or "merry way" with a prescription for Aricept and no other information I was pretty much done with the Neurologist. Oh, he did want to see my Husband back in 6 months but that was sort of a "non" visit as well.
I figured his PCP could keep prescribing the Aricept and do any lab work that needed to be done.
My other thought process on this was...no matter what testing they could do would not change the outcome of the diagnosis so why put my Husband through testing that would show either he declined or he was holding steady. Heck, I could tell that myself by the way things were going.
Later on I suspected that my Husband also had Vascular Dementia and I spoke to a Neuropsychologist and he said it would not be worth putting my Husband through testing to confirm or rule it out. He said that from the description I gave him that the Vascular Dementia would probably be confirmed.
I honestly can not answer your questions about the insurance.
I would suggest that you talk to a SHIP counselor they have all the information on all the different coverages and can guide you the best way. They are "beholden" to NO particular company so they will give unbiased information.
Google (your State) and SHIP counselor for ones in your area.
(SHIP is an anacronym for Senior Health Insurance Plan.)
Your mom will only continue to get worse and there really isn't much a neurologist can do for her anymore.
My late husband saw his neurologist every 6 months(until he went under hospice care)only because of his seizures he had from his massive stroke years earlier, and because he was on 3 different seizure medications to keep them under control.
Of course once my husband was diagnosed with vascular dementia his neurologist prescribed Donepezil(Aricept)to supposedly slow the progression down, but honestly it really didn't do anything.
My husband was diagnosed July 2018(though he showed signs a good year before)and he died Sept. 2020.
So I'm not sure I would be dragging your mom to any doctors unless you absolutely have to as it's just too hard and confusing for her.
So save your/her money and just do what is necessary.
And just enjoy whatever time you have left with her, and when appropriate don't hesitate to bring hospice on board.
Never saw one again.
My step-mother is in MC, FTD, I watch her progression myself and speak to the home admin as needed.
There is no cure for dementia. The prescription drugs for it barely make an impact, and if they do, it doesn't last long. The dementia continues to progress no matter what. The pace can differ by person.
If you go out-of-network for medical support, you will need to make sure those records get sent to your LO's neurologist or PCP. They don't automatically "see" them or have access to them.
Recently my Aunt passed at nearly 101 yrs old. She had vascular dementia for 12+ years. She was semi mobile (could walk with help) and this was very challenging. I'm sorry for your husband's diagnosis. May you find all the support you both need on this journey!