The Path Forward?

[MSADaughter]

Hi,

My father has advanced MSA. He is bed-bound and cannot sit up on his own. Although he still gets rehab, the muscle loss from so much time in bed has made it impossible for him to do much other than use his tablet and phone. He can still swallow, but because of his trach, speaking can be extra tricky. He also has a feeding tube. The doctors (he is not in the UK) have told us he needs 24h professional medical care. But my Dad wants to go home. Obviously, we want him to as well, and have tried to set the care up at home, but we were unable to get the number of people needed (and tbh a lot of people don't even want to do a job with a terminally ill patient when they don't know how long the contract will last. ugh). So there is a center nearby that has experience with MSA. It is very nice and has a garden. My Dad is terrified of it. He has been very upset by the idea of not going home, and claims he will get better and live another 10 years. If it was possible for him to just go home, it would already have been done. It doesn't help that the nurses around him sweetly tell him that he should be home (meaning in hospice) while he is set on fighting and living as long as possible. He refuses to consider hospice, and frankly, I think with proper care and barring a bad infection, he seems like he has a good chunk of time left with us.

I want to help him be ok with the center, but I don't know how. Also - other than at night when he is sleeping, there is someone with him all day long, either a family member or an aide, that makes sure that he is comfortable and gets what he needs, so it's not like he will be neglected in the center - he has an advocate by his side. He doesn't seem to realize that at the center, there is a lot of staff who can come in briefly and get him in the shower, for instance, while at home, it takes 4 people and 3 hours to accomplish.

Does anyone have any advice for how to make him comfortable with the idea of the care center?

[Paul_and_Sue_Wood]

Sorry to hear of your predicament.One of the biggest hurdles to get over with MSA is acceptance and without it you are in a battle all the way.

I have no answer other that somehow your dad has to face up to his reality and only you know your dad.

Sometimes you have to be cruel to be kind and I had to do this with my Sue recently as she loves sitting in the sun. But she overheats and becomes I'll. She doesn't realise this or wouldn't accept it, so I had to throw a right meltdown at her accusing her of wanting to die and not caring about me and my thoughts. After 24 hours of not talking to each other she finally gave in and we spoke about it.

Try a brutal conversation?

Good luck

Paul

[Gill-C in reply to Paul_and_Sue_Wood]

That’s such a brave and honest reply, Paul. It is a powerful lesson for all MSA sufferers like me, who are guilty of trying to hold on to fragments of the person we once were in the face of overwhelming evidence that our actions are damaging and, to be honest, selfish. Keep plugging away! I am full of admiration for all carers out there.

[MSADaughter in reply to Gill-C]

Thank you both! We are trying our best to bring him as much comfort and joy as possible.

[ReverendBadger]

This is what you get with MSA, and no doubt with other serious/terminal diseases, family and sufferer with incompatibe views. And all of you stuck between a rock and a bigger rock with the latter being pushed by the grim reaper.

You think you are being logical and practical. Your Dad is just tellling you what he wants, its emotional not logical but perfectly normal and understandable for someone with MSA. I think most people with advanced MSA would probably prefer to stay at home and die at home. I know I would (although in my case it's not going to happen,I will likely be in a nursing home) .

So if you agree to have your Dad at home what are the consequences of this? Could this be tried for a while ? Would his quality of life be reduced and cause him to rethink ?

[MSADaughter in reply to ReverendBadger]

Thank you for your reply. Unfortunately, we cannot bring him home because the doctors made it clear that he needs 24-hour medical supervision and we simply have not been able to find the people to do this at the house. It was the first path we went down, because it was what he and we wanted, but it became clear it would not be possible to accomplish running a small hospital from home. He is now in the care center, and is getting fun things he didn't get in the hospital - like his espresso machine and access to a therapeutic garden. I am hoping time will make it easier, and that we can manage to bring him home occasionally with the proper care.

[Musicalgran]

my husband had similar feelings about going into a hospice. He had spent 5 unpleasant months in hospital and insisted he wanted to be at home. I got a care package in place because he was bed bound, a lot of muscle wastage and was unable to feed himself a lot of the time. I was therefore able to get him home at Christmas. Unfortunately he deteriorated very quickly and it was becoming clear that he needed more help. The consultants at the hospice were brilliant. They first of all helped me by providing palliative support at home and would come and talk to my husband about the benefits of hospice care, that it wasn’t a place that he was going to die in but that it was to ensure that the correct treatment was being given and tweaked when necessary because they were able to monitor regularly and respond quickly if changes were needed. This very patient approach worked and a few weeks ago my husband asked if he could go in for a couple of weeks respite both for him and me. It was a beautiful place with very caring staff. Unfortunately Alan’s condition deteriorated rapidly and died two weeks ago. The message is be patient and talk positively about the benefits so that your father feels he is making the decision for himself. Best wishes and good luck.