LO Refuses Care

jeannicot

Hi Everyone,

My parent is in late stage dementia and we cannot find proper care for him. He can still physically speak, but nothing he says makes sense and he cannot respond in a logical way to even the simplest questions. We recently made the hard decision to move him to a memory care facility, but he was promptly removed after hitting an aide.

The facility sent him to a geriatric psychiatric unit where he was not bathed, his teeth were horrible, he lost several pounds etc. because the staff said he was uncooperative and combative (so essentially they just let him rot in his room).

While there, he fell and broke his hip. He was then moved to a “skilled nursing facility” where he was also neglected (the first time I visited he was naked and there were feces all over his room, his catheter bag was completely full, etc.), nurse took 35 minutes to respond to call and said he’s too combative to get into clothes. Later he apparently kicked an aide so they sent him to the ER (not sure I follow the logic). He was admitted to the hospital again, and is still being combative, even with myself and other family. He would not let me near his very-full catheter (pulled his arm back like he was going to punch me). He would not let me help him scoot up in his bed (as his hip is still not fully healed and his legs were uncomfortably hanging off the side). Hospital staff also says he refuses to let them take his vitals or help him eat.

We are simply at a loss for what to do. Of course the aggression is horrible and I wish that on no one, but isn’t this quite common with late stage Alzheimer’s/dementia? Aren’t there specialists (I thought that’s part of what memory care units were prepared for)? Everyone seems to shrug their shoulders, say good luck, and just pawn us off onto another facility.

We are all completely mentally and emotionally exhausted, just want the best for him, but cannot find solutions anywhere. Does anyone have a similar experience or recommendations?

terei

I would not call this ‘common’ but it does happen. You do not say that he is medicated or if he is on hospice(which it is pretty clear he should be). I would call in hospice + they will be able to help you with medications that should calm him enough to be able to attend to him.

A specialist in this area would have medicated him. If someone is this combative, it is necessary to use meds, put into his food if necessary.

M1

I am so sorry you are facing this. I would ask for a hospice evaluation right away. I believe that's the place to start.

jeannicot

https://alzconnected.org/discussion/comment/197111#Comment_197111

He is on anxiety medication and something that’s supposed to help with sleep. The psych ward stay was supposedly to help figure out the right medications and dosages without basically sedating him all day. He does seem calmer IN GENERAL, but still hates being touched and refuses help.

This may be a dumb question, forgive me, but I understood hospice care to be for someone who is going to die very, very soon. (He may well be there, who knows.) is that not the case?

Thank you so much for your input, it’s appreciated!

jeannicot

https://alzconnected.org/discussion/comment/197120#Comment_197120

Hi! Is hospice care not only for people who are expected to die at any moment? I’m thinking I might have the wrong idea of what that type of care means. Thank you for taking the time to respond!

M1

This may sound harsh, but the chances of him surviving much longer in the current circumstances are not high. In other illnesses, hospice is typically invoked when someone has six months or less to live (your LO may well be in that category). But with dementia, the guidelines are looser--there are folks on this forum who have used hospice services for 1-2 years or longer. You have nothing to lose by asking for an evaluation; you don't need a doctor's order to request it. If they think it's too soon, so be it and they will tell you. But it's not; generally when a dementia patient is not ambulatory, they will qualify. They can provide a LOT of help, including medications.

jeannicot

https://alzconnected.org/discussion/comment/197128#Comment_197128

Thank you so much for this explanation. Not harsh, unfortunately the reality it seems most of us are living with, heartbreaking as it may be. This makes a lot more sense, and will discuss with the rest of my family. THANK YOU.