The end of the "fiblets"...

mrahope

Something happened yesterday that literally has me shaking, and very upset. As I've mentioned before, my DH as diagnosed with "mild dementia" about 1.5 years ago via neuropsychological testing. In the past few months we have been looking at placement for him. We have identified a preferred MC and put down a deposit. In the course of doing this, we needed to get physician forms filled out attesting to physical and cognitive status for DH.

DH's PCP told my DDIL (she took DH to the visit) that he was "perfectly fine" and refused to complete the form. Bear in mind, this PCP has known him only since our move to this area about 8 months ago. After some negotiation he agreed to fill out the physical form, but not the cognitive form.

Then yesterday, he called DH and told him that his "family wants to send him to MC" and "this is forever". Then he asked to talk to me, but I barely got to speak with him since I had texted DS, fearing a rage episode from DH.

I'm really fearful of what may happen next, though in the last few hours little has. Has anyone experienced anything like this? FWIW, the geriatric doc just sent us word that he signed off on the cognitive part of the form. This is so awful for our whole family…

Me&Sis

I’m so sorry! How very difficult. That’s all I can say, just compassion for your situation!

harshedbuzz

I'm so sorry.

Something similar happened to us as well. As part of the admission process in our state, we needed dad to have a physical exam. My parents were still fairly new to the area having only moved back to the area where they raised me when dad was diagnosed about 15 months before. Dad's diagnosis was in his chart because he was diagnosed within the same medical system, but since dad showtimed like there was an Oscar in it his professional opinion was that dad dementia was still "mild".

The doctor, put the form down and counseled mom into considering assisted living so they could stay together as if he were offering us a lifeline we hadn't considered. While dad wasn't as aggressive as he'd been earlier in the disease by this point, he was doubly incontinent, and his sleep was very fractured. More importantly he believed he was dying and felt they should "go together" when the time came. I didn't feel mom was safe in the house with him living there. I sent a message on the portal explaining my concerns about his behavior and I had the form in hand the next morning.

I expected fireworks but dad was mostly confused. He seemed to forget about it which surprised me as he'd railed against being "put in a home" as long as I can recall. Dad died about 10 weeks later for complications of aspiration pneumonia.

HB

M1

I had something similar happen during a disastrous psychiatric hospitalization when my partner threatened violence against me. The admitting physician (who was relatively young and inexperienced) told my partner that it was my fault that she could not go home.

I fired her immediately and registered complaints with Medicare, the state, and with the Board of Medical Examiners (there were other issues; my partner did not receive any of her standing regular medications for the first ten days she was hospitalized). The head of geriatric psych took over and things were smoother after that; but I never received a single bill for the entire three-week hospitalization (they didn't file it with Medicare so they wouldn't be sanctioned).

Sounds to me like you need to fire this PCP immediately. I would call them today and tell them they are fired and that they should not contact your DH again (if you hold POA, they shouldn't have in the first place). Then put it in writing and send it certified mail. There may be mercy in the fact that your DH probably won't remember the conversation. If you have the energy, you might think about a state complaint as well.

I'm so sorry. Our system is so, so broken.

Beachfan

Wow, something here sounds unethical. In this day and age when it takes months to even schedule or reschedule an appointment, to have a Doctor actually personally take the time to call your DH with that information is suspect. I would gather my information, complain to someone, and look for a new PCP. Good luck.

Iris L.

This is indeed horrible. But I must say, that there is a gap in the story between "mild dementia about 1.5 years ago" to now looking for placement for him. Apparently the DDIL was not able to relay the progression of disease so that placement was being considered at this time. At the same time, the PCP apparently felt coerced into signing a form that he felt uncomfortable with. He did not ask sufficient questions to allay his suspicions. This actually, IMO, is a serious medico-legal issue and deserves further investigation, not from a punitive perspective, but from a perspective of how can this misunderstanding be prevented in the future? This could be a very interesting case for a Case Review. The history: an extended family member presents to new PCP, wanting to put grandpa into a home. What would you do? This is my thinking as a former practicing physician.

Iris

Phoenix1966

I’m so very sorry this happened and I can imagine your frustration and fear is very high right now. As hard as it must be, try to keep a calm facade around your LO so he doesn’t pick up on your distress and mirror negative emotions back at you. I’m hoping you have a situation like @harshedbuzz did, where your LO will most forget or misremember the incident. Again, remember to keep yourself safe and a charged cellphone on you at all times. Do not hesitate at this point to call 911 if he rages at you.

mrahope

Thanks all for you comments. I realize that I should have put in my original post that at this point the rages are happening nearly weekly and I've taken to sleeping behind a locked door. He screams, throws small objects, and generally I've been terrified for weeks. We saw a geriatric doctor at the end of March, who put in his record the need for as close to 24/7 care as possible at home. That doctor signed off on the cognitive portion of the form yesterday. This is after an extended visit including DS, as well as a conversation that DS had with this physician. As of now he has left the house via a rideshare and we really don't know where he's gone.

midge333

I am so sorry this happened to you. Placement cannot come soon enough. Please have low threshold to call 911 if he exhibits threatening behavior.

Chammer

You should be able to get information from the rideshare about where he is or where he was dropped off at.

harshedbuzz

@mrahope

This is awful. You've been so careful to finesse this volatile situation in the safest way possible and now this. I wonder if you should freeze your joint accounts or report him missing.

If he's angry enough, a short stay at a geripsych unit might be needed. From there he could be transported to MC by medical transport.

HB

Denise1847

https://alzconnected.org/discussion/68864/the-end-of-the-fiblets

I am sorry this is happening. You need to find another doctor. My DH was exhibiting symptoms for at least 2 years before he was formally diagnosed. Every time we went to the PCP and I told her about his behaviors, she would blow it off and just say to stay active… I finally had had enough and found another doctor. My take is that some doctors really don't want to deal with it and don't know enough about it. The doctor we found immediately gave my DH a mini mental and an MRI. It was very obvious to him and he put him on the appropriate meds promptly.

ButterflyWings

You may already have done this, but try to record (on your phone) even from behind closed doors. You would have evidence needed if indeed you have to call emergency support. I am so sorry this happened but have had my own run-ins with this system disrespecting and overruling the spouse caregiver (me) to the extent of almost endangering us both. Infuriating.