PSP can cause the sufferer to lose impulse control, which happened to my Dad. It led to him (when he was in that stage of falling) to try to stand when he'd been told repeatedly to ask for help before standing. It was not his fault. It was the psp, strikes again, rears it's ugly head, often just when you think it can't get much worse. It may help to keep in mind that the loss of impulse control isn't their fault because it was very frustrating. He reminded me of a rebellious child at that time. He passed away 26 days ago after an 11 year battle. I was one of his 3 caretakers the last 2 years. Daddy was a tall healthy man until psp.
Another thing it can do is cause movements and reaction time to be very slow, so that as they fall to the floor, they're unable to break their fall with the use of their hands or body. So Daddy fell like a tree falling and landed with a huge crash, often onto his poor head. Then he'd be on the floor, often bleeding, trembling and QUICKLY weakened, and unable to get up unaided. We have a Hoover Lift thank God because without it, he'd have spent the last yr of his life in a crappy little hospital bed, at home but that would have been even worse.
However before the Hoover lift, when he was falling and so weak on the floor, I all but ruined my lower back. I've always had a strong back but now, if I lift anything too heavy, probably for the rest of my life, it flares up and can last for weeks as I've recently discovered. SO please carers, don't do what I did. Always have a device or another person to help you anytime you move your psp sufferer. Find a Hoover lift, sooner rather than later, and USE it. We had it for a long time before I started using it and that was dumb.
Pic is me, with eyes half closed haha, my beautiful daughter and Daddy, just 4 years ago. Boy did a lot happen in 4 years for my Dad and us all because of psp. I despise it so much. And I miss my Daddy SO SO MUCH.
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GonnaMissDaddy
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Much love and prayers from me, to those of you fighting this battle. It's the hardest thing I've ever done, but one of the greatest honors, too, because Daddy never needed help. He was my rock. When he finally needed help I'm thankful I was able to give it but if I had it to do over, I'd have been smarter about my back.
You described my wife to a "T". Only thing was I was twice her size, but she could still be a strain on my back, as when I went to lift her 120 pound body, she'd be total dead weight. I lead a PSP support group in Louisville, KY and the current members with PSP are all good size men with wives/caregivers that are women half their size. I don't see how they do it at times. I don't see how any of us do it at times. But we do. I lost my wife almost 11 months ago and miss her so much. Not only do I miss her as my wife and parter, but I miss someone to care for. After caring for someone so intensely for several years, it becomes a huge void in your life. Thanks again for sharing your story and advice to others
Thank you ketchupman. I hadn't realized it in those terms yet, I lost my Dad not even a month ago, but you're right: it's left a void from being his caregiver. I'm sorry for your enormous loss and that it still hurts.
Mum was diagnosed with CBD then later PSP in Jan 2016 though the onset was a good couple of years before that I think. The falls have been the main issue. I tease her and say she's the cat with nine lives but I seriously have lost count of the number of falls she's had (that I know of!), nearly all resulting in head injuries needing treatment. How she hasn't knocked herself out or broken something I don't know. She was independent with carers coming to her flat to help only a year ago but the situation became critical and she was no longer safe living on her own. It wasn't an option to move in with me for various reasons and she is now in a good care home close by.
Her condition has worsened so her mobility is now very bad and the falls keep happening all the time. In the last couple of weeks she has been seen by paramedics twice due to falls. The main issue has been that she won't buzz for help from the carers. We've put this down to stubbornness but the loss of impulse control makes total sense. I tell her time and again that she must ask a carer to help every time she moves around. She promises and keeps to it for a day or so then she's found on the floor having got up without asking for help.
It's so awful seeing this happen to someone who was so independent.
I'm glad my post gave you some more insight to help your dear Mom. Thanks for letting me know.
A couple other things your reply brought to mind: I remember Daddy saying, in about mid stage of the hideous psp progression, that when he's sitting in his chair, he feels like he can get up and do everything he could ever do before, but then once he stood up he fell. He also said or maybe I read it, that when he'd find himself on the floor hurt and weak, he didn't really remember the fall. It was like, if you or I were walking along and all the sudden we found ourselves on the floor and unable to get up.
Another thing, there are certain types of 'walkers' made for backwards falls, and there's a helmet made for elderly falling, too.
Also, I learned along the way, PSP is the least dementia of all the dementia diseases. So, the PSP sufferer DOES forget how to do so many things as the disease progresses. It's also important to keep in mind, (as the disease progresses and they're more and more unable to speak and express their thoughts): THEY UNDERSTAND MORE THAN THEY SEEM, due to things like the "psp stare" which makes them LOOK unaware. (At one point, Daddy asked his wife if people could look at him (in pubic) and know something was wrong with him. She told him the truth, at that point the stage of his psp, the answer was yes, probably so. The psp affects sufferers differently but there are some characteristics that apply to most. Daddy lost the ability to talk in the last weeks and barely spoke for months because the psp is affecting that area of the brain. He had it for 11 years and the last year or 2 was the saddest thing I've ever witnessed, but he never once forgot who any of us are in our family, thank God, but do be aware that psp is LIKELY to inflict a certain degree of dementia.
So when anyone tells your Mom to remember to ask for help, at the stage of psp when they can still move around but shouldn't do it unassisted, that stage is very difficult and dangerous because the falls are horrendous, like no fall you've ever seen, not even someone fainting is as bad because a fainter's body will fold in on itself in a relaxed manner, where a psp sufferers body is steadily getting stiffer and stiffer. When Daddy fell his body was stiff so the falls were terrifying and bad.
If there's anything you want to say to your Mom, do it now. I found I couldn't say anything that remotely sounded like goodbye, but moments after he died here at home, I finally told him I'd see him again some day in Heaven. He's only been gone a month and I regret not finding the gumption to tell him how much I love him. When I tried the night before he died, I cried so hard, I doubt I've ever said the words, "I love you soo much," with as much deep feeling in my life. It spoke volumes and the way it came across said every word I hadn't said. There's some satisfaction with that. But do think about these things as soon as you can.
I'm very sorry for your Mom's diagnosis and I'm sorry I don't have good news when I write about psp. May God be with your Mom and you, too.
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Another step down
Falls
Rest in peace Dad
Chair problems
