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This is a bit of a follow-up from this post: https://www.agingcare.com/questions/overcoming-guilt-from-not-ending-life-support-when-had-the-opportunity-454653.htm


Mom has been in a long-term acute rehab hospital for over a month now. She hasn't made too much progress. She was back at the hospital ICU last week with influenza, pneumonia and sepsis. She has recovered well.


I'm thinking the rehab hospital will dismiss her in the next few weeks. She is getting close to 90 days hospitalization total for Medicare purposes. They sound like they'll send her to a SNF next. So, basically a nursing home.


We have a family meeting next week to get everyone updated and on the same page. What questions should I be asking? Mom's worst fear was going and laying in a nursing home. And that is a reality now. Though I realize nursing homes aren't necessarily that bad.


She is immobile and still doing therapy. But I don't see her ever living independently again. Best case probably ALF. But these are some questions I have, although no one has a crystal ball obviously.

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Thanks for all the helpful replies. This would be easier if I wasn't 40 years old (no peers experiencing this) and two small children at home. Not to mention work full time. Sorry, I know I'm not the only one in the situation, but it sucks. Yes I'm POA, I do have 2 siblings, one close, one further away.

We have not discussed this with Mom. I want to go to this meeting to get more information. She is cognitively good and her input will be important.

Caring for her outside of a facility setting is not possible. She can private pay somewhere for a while...year maybe?

Yes, part of this dread is based on my own guilt and fears, no doubt.
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Squatch, you say your mother has recovered well from her latest acute crisis, and as far as I remember she had retained reasonable cognitive function in spite of her difficulties, yes?

So how is she now? What does she think? Her worst fears from before, when life was going along normally, may have included being confined to a nursing home; but here we are and this is the new, different reality. How is SHE handling it?

I wonder if your dread on her behalf, and the guilt you felt about the decisions you'd made for her, are worse than anything she is bringing to the discussion. Do you think that might be so?
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I would be asking how we get her more rehabilitation since hers was so hampered by other illnesses and it will set her back. Medicare can approve longer stays in rehab, how do we do this?

I would want to know what the prognosis is based on medical science. I don't think it is written in stone, but it helps us prepare for the worst case scenario.

I would also want an honest needs assessment. Then I would call the ombudsmen and ask them if they could direct you to the facilities that are equipped to deal with your loved ones exact needs, with a good track record. This will take some cleverly worded requests, they can't discriminate, but you could ask, would you willingly go there, would you place your mom there.

I have a question for you, based on everything that you have shared, is your mom able to communicate with you? Can she tell you if she would like to pursue hospice and not be treated for illnesses that could shorten her life? I don't think it is suicide to stop medical intervention, especially in a situation like yours.

The article that tikisma shared has really good information. Take the time to go to facilities multiple times, without a scheduled tour, eat meals and just observe. That was so beneficial for me finding a place for my dad.

I hope that you can get mom an extension for rehab and this all works out for her. Hugs! My heart goes out to you.
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Squatch, I'm assuming you have durable PoA for you mom? If not, will this person be at the family meeting?

Currently your mom is immobile and still requiring therapy. ALF probably won't be an option for her if she doesn't recover her mobility or strength. Your family meeting should have an agenda so that everything that needs to be discussed and decided, happens.

If mom doesn't want to go into a NH, is it at all possible to carry out her wish without upending the lives of her family who would be managing her care? Your mom may have no real idea what caregiving entails, especially as her needs increase: the physical, emotional and financial strains. And, she may be remembering the nursing homes of old, which certainly were not nice places. Maybe visit newer ones and take your own photos to show her how different and nice they are and all they have to offer.

What financial resources does your mom have? This may dictate what happens. I don't think you can come to any final conclusions until you see if she progresses in therapy. If she doesn't regain her mobility, how realistic is it for her to be cared for in the home by family members or aids? Who is willing and able to do it? I think you should be having conversations with your mom about what the realistic options are. I personally don't think it's fair of people to assume that others will be their caregivers -- they often don't understand what they're asking them to sign up for, and sacrifice. But, if someone is willing to do it, that's fine but they will need to have their eyes wide open if they do.

Many people fear nursing homes because of what they represent: you check in but you don't check out. This is understandable. If your family is willing and able, lots of TLC will help her as she tries to adjust to the changes happening in her life. I wish you all the best as you help her!
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https://www.agingcare.com/articles/choosing-a-long-term-care-facility-tips-from-a-certified-nursing-assistant-436396.htm

Hi Squatch33,

I have attached an article on choosing a LTC facility that I found really helpful. I hope that you will find it helpful also. It is written by a CNA so it is written by someone who definitely knows what to look for!

Isn't it amazing how elderly people can go through so much and make a recovery? It blows my mind, as my mother has had several bouts with pneumonia, respiratory failure and sepsis. I call her my Energizer Bunny and tell her that she can change her own batteries!

The family meeting will be crucial for finding out what your mom can do. As she is just out of the hospital, she is in an "acute phase" and it is hard to tell how much more that she can do before she is maxed out on her potential. It is little wonder that she didn't make a lot of progress before she went to the hospital with influenza, pneumonia and sepsis. Poor little lady was too sick to make progress. Her body was struggling! I would ask what the options are to keep her in rehab to get her as strong as possible.

Good luck with your search. I know that you will get many more responses and there will be people with first hand, successful experience.
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Great resource tikisma.
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Isn’t living in a nursing home high among most people’s worst fears? It’s not a choice we want for ourselves or those we care about, but there are times it’s what has to happen. Nursing home care doesn’t rule out more therapy, it can be continued if any progress can be documented. Past that, it’s important to find a nursing home with caring, involved staff, a clean facility, food your mom will eat, activities she can engage in, and a good management team who can help you with the finances of this transition. My mom went from using long term care insurance, to private pay, to Medicaid and the business manager at her nursing home was excellent at guiding us through it all. Hopefully your family will all be on board with helping your mom through this and being her advocate now
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