PSP Association
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Can dad be forced in to a home?

Any quick answers would be appreciated pls - the docs have phoned and asked us to go in to meet them at 12 noon - dad was very ill last night with another chest infection. He was declared fit for discharge that day. Can they force him in to a home or do we have absolute right to insist he comes home to end his days? We want him home, after awful care home experience, but we're scared about how to cope too...

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Ok...an update...the meeting wasn't about forcing him in to a home, as I had suspected. The doctors have said they won't use a tube to clear his chest anymore as it's invasive and it stresses him. They're relying on the antibiotics to work to help him and other than that, they're sending him home basically to drown in his own secretions. They've offered no other solution to his horribly wet and gurgly chest. They said (in front of him) he's end stage and terminal so there's no point. (Complaint going in later)! My question - how did everyone else manage secretions from repeated chest infections please? Is there anything else we can do to make his last days/weeks more comfortable? I've emailed his neuro nurse and asked about hospice care, just waiting to hear back. Is there anything I've not thought of? Feeling desperate! I can't bear to think we have to sit back and watch him choke!

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Hi, sorry no advice, except get the Hospice involved ASAP. They will be able to make him as comfortable as is possible.

Take this time to love your Dad, touch him, hold him, tell him you love him.

Sending big hug and much love.

Lots of love

Anne

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i a gee anne

lo;l

j]illlxxxxxx

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Hi Jill, lovely to see your smiling face on my iPad and know that you are still able to communicate with us.

Sending big hug and much love

Lots of love

Anne

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I agree with above, get hospice in ASAP. They'll least help manage any discomfort or pain. The little I know of these diseases is infection of some sort or inability to eat and refusing feeding tube are the 2 most common ends.

Wish I could offer more advice....

Ron

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Thank you all - I'm banging out emails and phoning round to see what hospice can offer. Thank you for your kinds words. Sarah x

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Sarah I agree with what others have said about getting the Hospice involved. Have you tried Glycoperonate for secretions? The patch my husband was on failed so I asked for this. It worked during his last hours.

So sorry to hear this. Just get him home and get the Hospice and they will give him the meds he needs to help him!

Love to you and family.

Marie x

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Hi Marie, thanks for this info. Dad's neuro nurse berated the respite care home for using a patch for secretions, saying it would make things worse. She didn't explain why, but said they should never be used in PSP patients. I've just looked up glycopyrollate (however you spell it)! Looks interesting, so I'll ask at the next opportunity. Thank you x

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A patch for secretions has anticholinergic properties that can affect someone's walking, bowel movements, and cognition. If your father is no longer walking, the cognition and risk of constipation are the two main problems. Definitely a balancing act between the possible side effects and the problem of secretions.

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Sasmock I wish I had known that! He did get confused after a while using the patches. Not all the time thankfully but he thought he was at work and thought I was our daughter...at least I think that's who he thought I was. Then next day he would be back to normal. Very odd. The whole condition is!

Marie x

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When the time comes ... my Barry will stay at home. My daughters and I have discussed this. I doubt your Dr. has the right to decide. Wishing you strength. 💛🙏

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At this point I said our preference was care at home. They organised the hospice care team to come in. I was clear in my mind that I would insist it was all set up, with an air mattress, before he came home. Our neuro matron had told me to make sure it was in place.

It should be straightforward for them.

Good luck, Jean xx

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I dont' know if your dad is still suffering with secretions, or pnuemonia(?) But my husbands was pierced in the side and a tube was placed in his lungs where they were constantly being drained for about 6 days. They took the drain out of his side, patched him up and in almost week and he was bakc home...

I know this "insight" comes 19 days too late, but perhaps they can put a drain tube in his side.... get your parents in the same rehab...so that she can heal and he can get the care he needs...and then get them both a 24/7 carer.....

This note is in response also your post from today... Sept. 3, 2017

AVB

((HUGS{oreo}HUGS)) hug is also in response to todays post...

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