Really long hospital stay

John2.0.1

This is kind of an update. A small rant too.

My mom with Parkinson's Dementia and severe mobility issues was admitted into the Geriatric Psych unit at the hospital on July 3! She is still there. She was hitting and kicking staff and residents at her memory care at assisted living.

For all this time I was hoping that they'd get these behaviors under control and she could return to her assisted living after some physical rehab. But every time she meets the criteria for discharge and they look for a rehab she then back-slides in terms of aggressive behaviors.

 At this point I see next to no possibility that mom will be able to return to her assisted living, at least not without a 24/7 aid. But I keep paying her monthly bills on the possibility that insurance will give it up and kick her out of the hospital before we find a nursing home. The only way she could return to the assisted living is to behave and to have a 24/7 private aid at $1000 a day. Bad option but it's a short term possible outcome from all this.

So while her insurance appears to be paying 100% of the hospitalization I've now spent over $52,000 in rent to keep her memory care room just in case she has to go somewhere.

Mom really doesn't understand anything that's going on around her and needs a two-person lift to do anything like get in her wheelchair or use the toilet.

What a life - if you can call it that. In her more lucid moments she just wants to die.

I'm sure that she would not be this badly off if, 1: my dad hadn't died unexpectedly in 2019, 2: if there had not been a pandemic lockdown ( I don't blame the MC for the lockdown. It was necessary but it did damage) and 3: Mom had not had Covid/pneumonia just before the vaccines came out. She had a mild case but I'm sure that the lingering effects have sent her sliding down this path faster.

I don't doubt that if mom understood she would have wished that the Covid/pneumonia had done her in. It sucks to say that but I believe that that's how she would feel if she understood anything at all now.

I visit once a week. She sometimes seems to know me. Sometimes not. And I'm sure she forgets within 20 minutes of my visit. My mom is gone but not gone.

M1

John it’s heartbreaking. I’m so very sorry, it sounds like you’ve done everything you could. What a terrible dilemma.

ninalu

John,
I'm so sorry for you and your mom, and for the pile-up of circumstances that lead to now. {} 

BassetHoundAnn

I'm so sorry John that you're going through this. What a dilemma. It sounds like with the need for a 2-person lift she might need skilled nursing. Is that what they're talking about? What are the chances of her returning to her former memory care?

MN Chickadee

I'm sorry. You mention her going back to assisted living. Is this memory care high acuity AL? Staff at a skilled nursing home with memory care may be better equipped to deal with behaviors. Anyway, I sure hope the geri psych people are able to get her stabilized. It's no way to live but you are doing your best, there's a certain point where you have to accept it can't be changed. It's a cruel disease out of your control. I think most of us have been at a point where we wished our LO would just pass from something else and be spared this dementia reality. Your mother was dealt a rotten hand.

Jo C.

Hello John; I am so very sorry to hear about what is happening with your mother; I can only imagine how heartbreaking and stressful this is for you.   You have been doing the very best you can on her behalf and are hanging in there; you have been a blessing in your mother's life.

Parkinson's Dementia can be very difficult; if you have not done so, it may be helpful to check out the Lewy Bodies Dementia support site; they address Parkinson's there and have good contact numbers to reach their staff who are supportive and have much information.

At this point in time, it appears that an ALF geared setting may no longer be a consistent appropriate setting for your mother.   From what you have written, it does appear that she is going to require a higher level of care.  I agree with you in that her having been ill with COVID, she has probably have had a faster decline; and then there is also the spector of post-COVID long haul syndrome that can take many different paths and so deeply affect the post COVID person.

It may be that beginning to screen facilities that can provide that higher level of care will give many more safe and appropriate options.  Of course, she will need to have her aggressive behavior addressed before any transfer as severe aggression cannot be tolerated in facilities due to danger to the care staff and other patients.

The one thing to remember is that there is no perfection in all of this; only the best you can do under the circumstances with the challenges at hand.  That is a difficult realization to come to; I understand that having been there myself.

Let us know how you are and how your mother is doing; we will be thinking of you and we care.

J.

John2.0.1

Before this hospitalization she was living at a Memory Care in an Assisted Living facility. Maybe the laws are different by state but in Massachusetts assisted livings are not allowed to do a 2 person lift. The resident has to have the strength to lift oneself though aids can provide balance. Twice before this hospitalization my mom had bad days and was on the floor unable to get herself back into her wheelchair. In situations like that they are required to call 911 and have the fire department lift her. On those two days her mobility meds weren't giving her enough power. She can never remember to ask for her PRN Carbidopa and levodopa).

So anyway, starting 5 months in the hospital now her ability to move herself under her own power has further decreased. She doesn't have the power to move herself from chair to toilet for example. And a memory care in an assisted living isn't allowed to do it. And that's even if she can stop being aggressive. They are still struggling with that.

A huge problem with Parkinson's dementia is that the meds that would help her to calm down and stop her aggression actually work against her Parkinson's mobility meds. Increase her mobility meds causes the meds to keep her calm lose effectiveness. Increase the meds to keep her calm decrease the effectiveness of the mobility meds. At some point there is no room left to balance them. It seems that that's where she is now.

She needs a nursing home at least for the reason that she can't move herself by her own power any more and probably also because her aggression is more than a memory care can handle.

John2.0.1

Jo C. wrote:

Hello John; I am so very sorry to hear about what is happening with your mother; I can only imagine how heartbreaking and stressful this is for you.   You have been doing the very best you can on her behalf and are hanging in there; you have been a blessing in your mother's life.

Parkinson's Dementia can be very difficult; if you have not done so, it may be helpful to check out the Lewy Bodies Dementia support site; they address Parkinson's there and have good contact numbers to reach their staff who are supportive and have much information.

At this point in time, it appears that an ALF geared setting may no longer be a consistent appropriate setting for your mother.   From what you have written, it does appear that she is going to require a higher level of care.  I agree with you in that her having been ill with COVID, she has probably have had a faster decline; and then there is also the spector of post-COVID long haul syndrome that can take many different paths and so deeply affect the post COVID person.

It may be that beginning to screen facilities that can provide that higher level of care will give many more safe and appropriate options.  Of course, she will need to have her aggressive behavior addressed before any transfer as severe aggression cannot be tolerated in facilities due to danger to the care staff and other patients.

The one thing to remember is that there is no perfection in all of this; only the best you can do under the circumstances with the challenges at hand.  That is a difficult realization to come to; I understand that having been there myself.

Let us know how you are and how your mother is doing; we will be thinking of you and we care.

J.

Thanks. It looks like we cross-posted. I'll look for the Lewy Bodies Dementia support site. From what I've read, that and Parkinson's dementia are very similar.