Dad in hospital : My dad has sp and is I'm... - PSP Association

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Dad in hospital

MyDad1 profile image
13 Replies

My dad has sp and is I'm hospital with pneumonia which they are treating. He has to be on level 4 for food yet the hospital offerhom food he can't eat , biscuits, fortunately he turned them downHe is in a room on his own and needs help to wash but they say they are short staffed and can't help. They squirt air freshener in room and close the door.

Anyone else experienced this .

Thanks 👍

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MyDad1 profile image
MyDad1
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13 Replies
AliBee1 profile image
AliBee1

Are you in the UK ?

MyDad1 profile image
MyDad1 in reply to AliBee1

Yes I am Stockport

AliBee1 profile image
AliBee1 in reply to MyDad1

I am so sorry about this. We had a similar problem. My husband was on pureed food but I went in one morning and found him with toast in front of him, as they had asked him if he wanted some and he had said yes - as he did. They should have a notice above his bed stating what food he should have so you might need to get the SALT team involved. The trouble is, is that the nurses know, but not the HCAs and home services staff. Get in touch with the PALs team at the hospital as soon as you can. Patient Advice an Liaison Service. I got permission for our carer to come into the hospital to provide personal care at first, which should not have been necessary. However PALs did sort something out for us. Does he have any form of dementia as well as if so get in touch with the Hospital Social Workers or the Dementia team. Good luck. Love AliBee xx

MyDad1 profile image
MyDad1 in reply to AliBee1

Thanks for the great advice. He doesn't have any dementia fortunately. We are waiting for results for blood test and scan . They have no carer's at moment but this could change depending on how the scan goes. He has cancer in liver which isn't treatable but they can give him painkillers.

Hopefully he will be home soon .

Love MyDad1 xx

AliBee1 profile image
AliBee1 in reply to MyDad1

Good luck and big hug xx

MyDad1 profile image
MyDad1 in reply to AliBee1

Thank you , just spoke to my mum as she visits in the afternoon and he has had a shower. Thank you xx

brandysuki profile image
brandysuki in reply to AliBee1

Good wishes and god bless you all!

MARKJ9 profile image
MARKJ9

My dad had PSP. Aspiration pneumonia is fairly common in PSP patients. It is from food getting into their lungs. As they lose control of their muscles, swallowing becomes difficult and sometimes a little food gets into their windpipe. I wish your dad will get over the pneumonia. I hate to be the bearer of bad news. But, as the disease progresses, his muscle movement will get slower. It will slowly impact the movement of food through his alimentary tract. It is good that your dad has loving people around him to help him through his difficult journey.

MyDad1 profile image
MyDad1 in reply to MARKJ9

Yes we get special food puréed, doesn't eliminate the risk but it's water that solid food . Thank you for your reply 👍

sammy90210 profile image
sammy90210

Does your dad have muscle weakness or stiffness? If yes, plz check with his neurologist if he can have Sinemet (carpidopa/levadopa) - it helps some patients with body muscles and swallowing too ( it wears off after a few months but it's really helpful overall)

MyDad1 profile image
MyDad1 in reply to sammy90210

Thank you. I know he has one tablet for his psp which helps . Thank you

autex2000 profile image
autex2000

I had the same problems with my wife, I arranged to spend much more time with her and took, yoghurt, and cream caramels etcWhich she could swallow, the staff were grateful. Unfortunately they put her on NBM and she only had a saline drip for several days,and then discharged her. She was then too weak and passed a few days later Malcolm

MyDad1 profile image
MyDad1 in reply to autex2000

Sorry to hear that 😒They pneumonia is gone but they are giving him painkillers for the cancer as it's palative care he is ok receiving.

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