Specific diagnosis - Memory Center

Anonymousjpl123

Hi everyone,

I hope your nights are going ok. Mine is the usual. Call from MC they couldn't find my mom for 30 minutes (she was hiding in her closet under clothes). Long story short: yesterday she had fecal incontinence, was very embarrassed, blamed it on someone else, resisted but finally let the director shower her. They took her clothes and she was angry. Also, later, very upset about the shower (which she had agreed to). Horrible. Tomorrow, the on-site MD will give her medication to help with anxiety/hallucinations/paranoia. Friday we have a care conference. Based on her over the past month, MC staff think it may be lewy body not vascular dementia, but who knows?

In 2 weeks, we have an appointment at one of the top memory centers that I made literally 4 months ago. Maybe they will have insight into what type of dementia she has, along with the NPH. I know there are no great treatments, but you never know.

So...any advice for the care conference? Questions to ask? How do I even think about this in long term? My completely nonsensical idea of her going back to AL with an aide is off the table - an idea which only grew out of how absolutely miserable she is there.

What can I ask? How do I plan? I feel so lost.

M1

If you're not sure, let them take the lead. On another thread someone suggested a very good question for the attorney, "what do you think are the most important things i should be focused on?" Something similar might work here.

LauraG34

For the care conference, I would ask about their approach to keep your mom from getting agitated. I would also ask what activities they think she can do and how often they will do them with her. What does Mom like? Does she love music? Puzzles? Reading?

I would also keep a close eye on the meds - making sure they are keeping her from being agitated vs. incoherent. Good luck!

Anonymousjpl123

It went well. There is no chance she is moving back to AL, even with an aide, BUT they gave same advice as everyone here: we won’t talk about it, and if she asks, we will say we are working on it.

The next step is trying to get a better sense of what dementia she has. She has an appointment with a specialist in 2 weeks and they want to wait before giving her medication if possible. She does have a prn scrip for mild dose of seroquel or haldol (which they gave in the er) if she is too agitated while waiting for appt

From all observations from staff on both sides, she is much more social and engaged in MC. Before she moved, she mostly stayed in her room except for meals, when she socialized. But she does have sundowners and hallucinations. She does try to escape. So that’s why they can’t move her. They all know her very well - she knows all the residents and staff in MC.

We reviewed different ways to handle her through long term care. As long as she can physically handle it, they said this is her home.

The biggest change they recommended is I stop trying to “bring her back to reality.” I need to learn to comfort, redirect, and meet her where she is. I need to not engage and listen to every voicemail because her reality is not real. Call the staff instead to check on her. Hard for me.

Also, we will get her a land line so she can’t walk around with the phone but can still call people.

In the conference was the Executive Director, MC director, and nursing director.

That’s the report. Thanks for listening.

H1235

I have the hardest time not correcting my lo. I’m getting better all the time and you will too. When she says something that is not true or not possible I try to stop myself and ask if it would really do any good to correct her. The answer is always no.

Anonymousjpl123

It is amazing that you can spend time with your LO and not correct them: just be with them, and listen. And why correct her? I

I think part of me thinks if I just do everything right she will get better. It’s so not helpful. I overthink everything. I’m learning.