Am I crazy, or is the doctor?

mrahope · March 18

I don't know if anyone else has experienced this, but here's hoping someone can shed a little light on what to do about our current situation.

As background, we are exploring MC placement for my DH, who tested in the "mild dementia" range in late 2022. Lately he has been having episodes of aggression and rage which are frightening to me. In order to be in line for a room at MC we were told we needed to have our PCP fill out a long form about his health, conditions, medications, etc. It took us several weeks and much negotiation to get this appointment which was today. My DDIL took him to the appointment, because she wanted to speak to the doctor personally and long story short, DH passed the infamous "clock test" and the "memorize three words" test, so the doctor refused to fill out the form for MC.

What do we do now? We are new in this area (8 months) so this doc does not know DH well. It took us 3.5 months to see a neurologist, which would be our next alternative. We've seen him only once. And during the appointment the neuro (a resident) told me he'd never want to see his family member in "one of those places". Yargh!

I know what I've seen, felt and lived. I'm scared most days. Has anyone else faced this? What did you do?

M1 · March 18

Did you ONLY see a neurology resident? Unacceptable. If your DH is on Medicare and I assume he is, he is required to see an attending physician (not a resident or a provider extender) at least once a year. I would call the neurology office, explain the situation, explain the resident's egregious comments and ask for an expedited appointment with the attending provider whose name was billed for your previous visit (it will be on you explanation of benefits forms, if you keep those). Soooo exhausting to have to be the squeaky wheel on this. The only other alternative I see--as we've previously discussed-is getting him admitted to a geriatric psych ward and have him placed from there.

Phoenix1966 · March 18

Completely agree with @M1 . For whatever reason, my grandmother’s PCP was loath to say she had dementia, eventually prescribing aricpet without any official diagnosis. Because of that, my springing POA could not be used and my hands were tied getting her substantial assistance. And he knew that. Fast forward 6 weeks when we were back, ostensibly for another health issue, and my grandmother was there long enough to lose her ability to showtime. The doctor looked at me in shock and demanded to know what I was doing about it all. Trying(and mostly failing) to keep my composure, I reminded him I was not a doctor and could do nothing without a diagnosis of dementia.

To make a very long story short, eventually I had to call 911 when my grandmother could not be calmed down and redirected. It was the hospital staff that gave the official diagnosis and I ended up placing her in MC directly from this 2nd hospital admission she had, where medication was prescribed according to her needs. Her PCP was extremely unhelpful/useless, as if dementia was a dirty word.

JDancer · March 18

I suggest you record some of the extreme behaviors you're experiencing.

It would also be a good idea to get some of those behaviors corrected with medication before placement. Others have told of LOs acting out and getting sent to ED by MC, and then MC refuses to take them back.

mrahope · March 18

Thanks so much for your replies. The MC folks are looking around for someone else for him to see. The nurse who came to our home to assess him thought he would be a "good fit" for MC at this time. Also, the neuropsych testing report actually says "mild dementia".

Good question about the neuro,@M1 . I did not know that was a requirement. We did see the senior doctor for a while during the visit, so that's sort of covered. My DS wants to file a complaint against the resident for the comment, but I don't think it would do any good at all, especially since we still need someone to believe us and fill out the forms, most of which are basic medical data anyway. I already feel bad enough without having people seem to not believe what I have told them, not to mention hopeless because I already feel as though I'm trapped with an explosive individual.

I keep hoping someone will do something to actually help...

SSHarkey · March 19

Meanwhile, call his previous PCP from before you moved, and ask if he/she could complete the paperwork for you.

M1 · March 19

That's a great idea. If you had a long-standing relationship with the previous doc maybe they would handle it for you.

mrahope · March 19

Thanks for the idea re: his previous PCP @SSHarkey. I may try it if push comes to shove. His previous PCP was a concierge practice, but we'd been his patients even prior to that. DH had seen this PCP for over 15 years.

SSHarkey · March 20

https://alzconnected.org/discussion/comment/202667#Comment_202667

He could well be his best bet!

harshedbuzz · March 20

@mrahope

I am so sorry you are dealing with this. It makes me crazy when the medical profession completely disregards the caregiving spouse in this sort of scenario.

If there's comfort in shared experience, I have a tale for you. I moved my parents back to where they raised me when dad was diagnosed in mid-stages.

Dad had a challenging personality even before dementia and by stage 6, home care wasn't working. Not only was he resistant to care (refusing hygiene, medications, foods, sobriety), he was verbally and physically threatening, and his care needs were killing my mother. When we took him to their new PCP for the MCF entrance exam, he looked at it and told them <brightly> that dad didn't need to go into memory care-- they could go to assisted living and be together-- as if he was offering us some grand idea we hadn't considered. He said we could pick up the form in a couple days, so we went home with an agitated dad and no form. I was able to contact the doc on the portal and explain the situation including dad's murder-suicide ideation which got me the form the next day.

HB

mrahope · March 20

OMG, @harshedbuzz , your tale is just so amazingly scary. I feel as if I'm running on fumes from all the walking on eggshells I'm doing. Your mother must have thought she'd wandered into the Twilight Zone. As it happens, it was my DDIL who took him to the doctor this time. She told me she described some of his behaviors to the doc and he adamantly stated he would not sign. At the moment, the MC Director of Nursing is attempting to speak with the PCP for us and convey what she found in her assessment (she came to our home and spent about an hour speaking with us both). She felt he would be a "good fit" for their facility. While DH has made some suicidal statements, they haven't been numerous or detailed. He has said, "I've lived long enough" and "Wouldn't your life be easier if you didn't have to take care of me?". Hard to hear, but I don't feel they were said with purpose...

This has been so upsetting. Why, oh why, don't healthcare folks believe those who are with the person 24/7?

Dio · March 21

While all this is going on, my only additional advice is if he displays any aggression in the meantime, do not hesitate to call 911 to take him to the ER and subsequently be admitted to a psych ward. If the ER wants to discharge him, do not take him home but insist that you get a social worker for help because you do not feel safe. I made the mistake of taking my DH home each time ER dismissed him. I had asked what if this happens again? Their answer: call 911. Good grief. I ended up calling 911 3x within 2 weeks. I didn't get hurt too badly, just bruised up quite a bit.

mrahope · March 21

Thanks for your story, @Dio . I'm trying to avoid that kind of an ending, but if it must be, then it must. Meanwhile, the nurse who assessed him for the MC facility was able to get the recalcitrant PCP to fill in the medical portion of the form they needed. She is working on getting the neuro to fill out the cognitive/behavioral piece. Half a loaf is better than none.

Dio · March 22

https://alzconnected.org/discussion/comment/202596#Comment_202596

Sadly, many physicians are not educated/informed about the facets of dementia. They probably share in the same stigma shared by the general population.

Dio · March 23

Wishing everyone on this wretched journey more smooth days.

Am I crazy, or is the doctor?

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