First Time to the Forum

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First Time to the Forum

Postby thross » Sun Oct 09, 2016 10:12 am

Hello everyone. This is my first time posting to the forum but not my first visit. First, I want to say that I admire all of the caregivers posts that I've read. It really gives me some insight. I have a few questions that I'm hoping someone can answer. My father was diagnosed with PSP about 2 years ago but was given a frontaltempra dementia diagnosis a few years earlier so we aren't sure exactly how long he's had PSP. Currently he is in an assisted living place because my mother could not care for him alone. When he entered the facility 2 years ago, he was able to walk, slightly but had lots of falls, able to talk and able to eat. Fast forward to today, he is no longer able to walk, he needs assistance with everything. He can't communicate verbally with us and doesn't make alot of hand motions when he ask him questions. He wears diapers because he can't say when he has to use the restroom. He now only takes small bites to eat, even food that is puree'ed he chokes all the time. He keeps his mouth open but will close it when we ask him to do so. He does have a peg tube so that helps with feeding. He is losing about 5 to 10 pounds per week now(in the last couple months). Recently, he was put on pallative care at our request. We can't tell if he's in pain because he has conditions other than the PSP that we have to deal with so the nursing home just gives him pain meds just in case. He also has thick mucus build up in his mouth that could be a reason he doesn't want to eat. Over the two weeks ago he had started shaking his right hand maybe kinda like you would shake your leg if you were sitting still. He doesnt move his left hand and keeps his fist in a ball. I am so concerned as I have read that this disease progresses differently in every case. He has been hospitalized a couple times but bounces back. The last time was a month ago and we had them send him to the ER because we knew something wasn't right but we didn't know what and because he couldn't tell us we just felt better if the doctors and the hospital examined him. Just wondering what's next? What else is there that we can expect for this disease make him unable to do or have we gone through all of the phases?
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Re: First Time to the Forum

Postby Robin » Sun Oct 09, 2016 12:40 pm

Sorry you have to be here.

I'm not exactly sure your question. Are you asking if the end is near? To me, the marker that the end is near is if someone is sleeping 22+ hours/day.

Given your father's weight loss (and possible pain), I'd suggest placing him on hospice. He would certainly qualify and your family could obtain more support.

Please discuss brain donation with your family. It's the only way to know what type of frontotemporal disorder he has.
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Re: First Time to the Forum

Postby thross » Sun Oct 09, 2016 12:57 pm

Thank you for replying. He is on pallative care and I don't really know the difference as I was told that is a form of hospice. He sleeps more than he is awake but he is alert at feeding time and when you talk to him. But it's like I'm talking to myself. I guess my question is where are we in the life cycle of PSP?
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Re: First Time to the Forum

Postby myownwoman » Mon Oct 10, 2016 10:14 am

Welcome to the forum, but so very sorry for your need to be here.

It is so very hard to predict "when is the end" with PSP, or even what's next since each individual seems a little different. I'd say, from my experience, that the weight loss is a big indicator that your father's body is no longer using much of the food he's been given... which is what happened to my husband. He also had a PEG and it was too easy to give Phil more food then he needed. It also allowed for more regurgitation of that food and so more choking. Eventually the Hospice doctors told me to stop feeding him... the hardest thing to do in my life.

One nasty thing of a rapidly declining body of which I'll warn you: watch out for bedsores - or even red pressure areas that can turn into bedsores. Your father's body won't be able to repair itself and so bedsores can become very nasty and painful very quickly.

A suction machine helped suck out the mucus that frequently choked Phil. I'd suggest you get one - if you haven't already.

I wish you courage on this most difficult journey. Kate
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