How much longer does my dad have to be humiliated

bjohnsen3869 · September 29

my dad was diagnosed ALZ Dementia and aphasia in 2020. He was able to live in his house with little assistance for 2 years then just needed more and more help and got more and more confused. I had to place him in MC in august 2023 but he was still walking everyday and pretty good at trying to communicate. In the last month he has lost control of his bowels and his urinary abilities. His legs are so weak he can barely walk. He can still feed himself but only if it’s placed in front of him. He has fallen several times in the past week. I have a sitter everyday 9-5 independent of the MC facility. I am his MPOA, his whole life he has told me never to let him get like this. How much longer does this former Army Ranger have to endure this humiliation?

M1 · September 29

so sorry bjohnson. Does he have hospice? If not, request it.

bjohnsen3869 · September 29

M1,

I thought that hospice care is only when one has 6 months or less to live….??

JeriLynn66 · September 29

https://alzconnected.org/discussion/comment/224249#Comment_224249

The rules/criteria are different with Alz. Ask for a consult. Does not require a physician order for them to evaluate. The MC probably has a company or two that they use frequently.

mabelgirl · September 29

I applaud you in trying to keep your father’s wishes. Prayers for strength and help from hospice.

Anonymousjpl123 · September 30

@bjohnsen3869 I am so sorry. It is just awful to watch. But keep in mind the humiliation may not be as bad as you think. My mom is now in an MC with some skilled nursing so there are quite a few people in the later stages of their journey. Many are on the hoda (sp?) beds and some totally nonverbal mostly sleeping. But they seem to enjoy being out with people and will sometimes smile at me, etc.

They are treated with a great deal of respect. I think of MC as palliative care. I am horrified by what my mom is experiencing (almost total urinary incontinence and some bowel). But she too is being treated like a person, with a great deal of dignity. This is really the best we can do.

Sending you wishes for some peace. I know how bad this sucks.

howdoidothis · October 1

Does the VA offer any assistance?

CaliforniaGirl-1 · October 2

It is awful to see the people we love going through this. But you may be feeling humiliated for him more than he is feeling it for himself. This is not what any of us wanted for our parents.

My LO's physician said 2 things to me:

1- love them and stay empathetic but do not take on or try and internalize their suffering.

2- the nature of the disease is that if something upsets them they will forget much quicker than you (see previous comment)

At least where my LO is and I don't think it's unique, they are treated with respect and affection and like an individual with likes and dislikes. And that is a lot.

It is terrible

Gobellago · October 2

My dad is in a similar place and I'm also struggling with this. It comes down to quality of life. And this is in no way what my dad wanted. I've started to talk to folks about hospice to see if it is a fit for us. I'll say this: there are many shades of grey here, and yet Medicare (which covers the cost of hospice) can be very black and white. For me, I started by talking with my dad's AL care team (the lead CNA, his PT and OT people, the Wellness Director and his PCP), the people who spend the most time with him on a daily basis, and asked their point of view. Some felt he was ready, others (the PT and OT) felt he still had some "rally" in him. I also think it is the PT and OT's jobs to keep someone "going", so was not surprised they were "against" it. The Wellness director at my dad's facility connected me with their recommended hospice providers, and talking to them helped a lot; they explained what they can offer and how it would affect my dad's quality of life on a daily basis. They know best if it's a fit. Don't worry about the 6 month thing, hospice can be renewed after 6 months if needed.

How much longer does my dad have to be humiliated

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