Today there was a successful experiment so I thought I'd share
My dad is in advanced stage of PSP and bed bound
Today he was in great distress and kept drawing his legs and convulsing waist down - I guessed it would be cramps in the legs (he used to have this before as well it seems)
So I helped him stand up and with the help of an assistant, helped him walk about 10 steps from his bed and 10 steps back - I held him under the arms and tilted him first to the left and then right - the assistant would move the foot forward which had less pressure
After 20 such steps (I also took the opportunity to rub his back), I helped him lie down and he was completely calm
So, this is something that can be tried by someone else as well - I hope it works again, if the need arises - I will update if it works
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sammy90210
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I was interest in your comment that your dad is bed bound. I have read this before from carers of other PSP sufferers and wonder at what stage they are when they become bed bound. My husband hasn't reached that stage yet and sits in his chair if he is not out with me in his wheelchair, occasionally going to bed in the afternoon to get him off his bottom if it is sore. He hates being in bed wanting to climb out at 5.15 every morning so I am dreading the time when he can't get up and hope it won't be until his final few days. I know if he was really ill with something in addition to PSP he'd probably stay in bed but wondered what would keep him in bed otherwise.
This only happened after he could not eat or drink more than 1 bite or 1 sip of water per day - we never discussed this before and had a PEG tube fitted - since then it's almost impossible to understand him speak and he lies in bed all day - I have to help him sit up a bit (I got a reclining back type of support) when he takes his PEG feed but even then he tries to slip down - every day I try to move pillows and change the height to try and find the optimal position but it's not help
My dad could sit up before and with assistance even walk - PEG tube stage should never occur for advanced dementia patients, I understand that now - I mean I can help him any way he wants a hundred times a day but seeing his distress is quite difficult
Can't he sit in a reclining chair any more? Our local hospice wanted my husband to have a PEG fitted last September but the surgeon wouldn't do it as C was still eating liquidised food and still is thank goodness.
Does your dad have dementia as well as PSP? Although C can't speak I know he understands everything I say and everything that is going on around him. It is awful seeing them deteriorate isn't it?
Even in a wheelchair he gets uneasy after a minute or more - before this he used to go on a round around the neighborhood
In fairness, before we had the PEG tube fitted he underwent a 2 lumbar punctures (to draw out fluid and reduce pressure on the brain) - neither helped in improving his gait or cognition - I read online that there is some evidence (not sure if it's proper medical evidence or anecdotal only) that people with PSP can actually deteriorate a full stage if they undergo surgery or anesthesia also - he was actually quite well and bright immediately after the lumbar puncture and anesthesia but started deteriorating about an hour later and stayed that way... PSP is a type of dementia, from what I understand - from what i understand dementia is anything that causes problems with gait, speech, swallowing, balance, memory and cognition - PSP is one of those
Yup, my dad too understands most things, even in this state - he doesn't mind too much, I think, when I change his adult diapers, he sometimes does look distressed - but he still hates it if I try to clean his mouth - due to PEG feed, the mouth is not used and it stays dry - so does the nose and ears - that's another challenge, how to ensure they are not causing discomfort and pain
He has been deteriorating since the past 2 years quite rapidly - so it's tough - but not being able to understand him now when he asks for something is the most difficult thing
Based on my own experience, I would strongly not suggest the PEG tube - it won't improve anything - only make the condition worse since no matter how much we try and how many people we have to help, we can never provide even the level of comfort the patient had when he could eat and drink and ask to go to the toilet themselves
Whoops, sorry. I know someone called Sammy. Her name is really Samantha.
When the surgeon said he wouldn't do the op last year, he added that it wasn't worth the risk saying that many die within a few months of having it fitted and others have complications. When I told the Hospice staff and speech therapist they were horrified and said it was nonsense. Another hospice doctor said think carefully before having it fitted as it is more difficult to stop feeding when nearing the end. If they don't have one, they slip away naturally rather than being kept alive.
I just hope C never needs one and the decision doesn't have to be made.
No worries - daughters are more caring, I have a sister so I know
"I just hope C never needs one and the decision doesn't have to be made." - please don't depend on on this - decide on this as soon as you can - if your husband is cognizant enough, discuss with him - otherwise discuss and decide, even verbally, with the family
The doctor is right - it's too painful and distressful for the patient - and you cannot remove it once it's put it in - my dad told me yesterday to not feed him - I don't know if he really meant it or not - so I calmed him down and fed him anyway
I don't want to sound mean but the hospice may not want to lose custom - patients can survive a few years even on PEG feed... you will yourself be too tired and distressed to see him in that state - like I said, no matter what we do, we cannot relieve the pain and distress from the patient - sitting and lying down all day can very well lead to bed sores - and also hemorrhoids - the patient cannot even tell you about those - hemorrhoids can be itchy and painful and the dementia patient cannot even express the source of the pain or discomfort - they can only shout or grunt loud...
For some doctors/nurses this is just a benign operation - but for the patient and the people who love him, it can destroy them, physically and emotionally
So please discuss this with your husband or family as soon as you can - my vote is against it - I can see what my father is going through....
Yes Sammy we have discussed it. When he could speak he said he would have one when needed, encouraged by some staff at the hospice but has since indicated he doesn't want one yet. The nurse who was very keen on him having it has changed duties so we don't see her now and the others haven't spoken about it lately so hope they don't. For several weeks it was being mentioned every time I collected him so before we went to the session I said thumbs up or down for a PEG. It was always down so I was able to tell the staff. I think he was taking too long to feed but staff changes have made things more relaxed for me and C.
OK - at the end of the day it's your choice - as Amilazy mentioned, it helped in their case - but the issue is that you cannot remove it once it's inserted - even if morally/ethically/religiously you consider it OK, just the idea of doing that to a loved one is almost impossible - I wish you and C the best
Brian went for the assessment for the peg and he was turned down much to my relief. It also turned out that Brian was pleased as well. They said carry on risk feeding and Brian has eaten better since then. His key worker said peg tubes can cause more problems then they solve. Janexx
Hi jzygirl I have had a different experience with PEG in that it has helped Margaret regain weight and feel comfortable. No aspiration of food but she does now aspirated on saliva. But then M did lose her swallow reflex and could not take smooth of liquidised food without major issues. PEG is a bit like bottle feeding a baby but so much quicker and easier than the food fights we had over Christmas. Do not be put off a PEG if required especially if Brian starts to lose weight.
sammy hows it going mate well I cant help you with your father but it seems like that you are doing a very good job yourself mate keep up the good work and we thank you for your tips on leg cramps mate take care best wishes peter jones queensland Australia psp sufferer
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