Hi, I'm new here. In the last 24 hours I've read so many stories and wish I'd found it sooner as there are so many things I can relate to!
I do want to share what's happening with my dad, who has PSP. He was diagnosed in 2018 and after a fall in April 2020 he was admitted to hospital and a few days later discharged straight to a care home to free up hospital beds (thanks COVID), social services couldn't find him home care. He was 70 and very fit pre PSP.
I broke him out of the care home in October having sorted a flat out close to me with carers twice (now 4 times) a day and me on call. At the time deaths in care homes were rife and there was no visiting allowed, so I'm glad he was out of there.
Since moving in the main problem has been falls. Rather than call me or wait for a carer, he tries to get up to make a cuppa, go to the loo etc as he's been used to. He's deteriorated so much that even with walking aids he now ends up falling pretty much every time he tries to walk. I've even had to break off writing this to answer the fall alarm! It's just not safe for him to be there any more. I'm now not always working from home and have three children under 4, so I can't always be there for him as I'd want to be.
I've visited a number of care homes these last two weeks, and we'll choose a place together next week. It's so sad as he wants to stay in the flat, but we can't provide any more care than we are and he's just not safe. He totally understands and can't tell me why he keeps standing up. He sometimes says he forgets he can't walk, but knowing my dad I'm not sure I believe him. He understands that if he could just use, call and wait for the help he has he could probably stay where he is for a while. I can't be cross with him as who would want to live like that? Also I've heard that the frontal lobe damage caused by PSP can affect judgement and safe decision making, so that can't help.
His full story is pretty sad as I imagine most PSP stories are, maybe I'll share that another day. I just hope that we can find a place where he'll be happy and safe.
I always imagined he'd need to have 24hr care for more medical reasons rather than something as simple as him falling over. Is this unusual with PSP?
Thanks for taking the time to read this, the community here seems really nice.
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Nodbod
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Mom had PSP and the falls were numerous... like your dad she thought she could walk... l must admit there were times in the beginning that l thought she was being contrary. I soon realized l was wrong. I believe you will find lots of helpful information about PSP on this site. Sending hugs to you & your dad... Granni B
Thanks so much. Yep, it's quite terrifying when you realise it's not their fault. I remember after he'd moved and I contacted the falls team they asked how many falls he'd had in the last six months - I said I couldn't count. I think they were expecting something like 1 or 2. Maybe per day!
Hi, Nodbod. Welcome. It sounds like you’ve managed an amazing job taking care of your father during this awful year. Well done. It is too bad he can’t stay in the flat, but the falling never gets better while there’s any mobility at all. It made me so upset that my sweetheart couldn’t control his impulse to try to walk. I am sad to admit I didn’t always keep cool. The damage a man can do to himself and the furniture when he falls is shocking. Best to find a place where he isn’t on his own. I am sorry you are going through this, but your father is very fortunate to have you. Best wishes. Ec
Thanks for your support EC. I have to admit that in the first few months I was so frustrated I snapped at dad at times too, but I guess like you and other I realised that it's not his fault. Poor dad managed to break so many appliances and furniture as you say, even the sink pedestal, that was a visit to hospital for a checkup. I even bolted the refrigerator to the wall as he almost pulled that over onto himself. He'll be so much safer in a care home, but it still makes me so sad he can't stay in his own place.
Morning,My mom has CBD and I had to move her into an assisted living community about a month ago. She was falling when she lived with me, about 1x a week, but then it started to get where she couldn't do anything without help. I tried as long as I could, but I was getting tired and knew I wouldn't be able to do it all on my own. I have heard that PSP/CBD patients do just fall over. Mom cannot get up on her own, usually, but the idea of them forgetting that they can't walk, is something I've heard can happen. It's hard for us (the healthy person) to believe that they just can't walk... or that they can't move their feet... There were times that I thought my Mom was just kidding or just wanting the extra assistance because she knew I would help, but the longer she has lived with CBD, the more I see the result of the disease and that - no - they cannot walk. It's scary, but I hope you find a good place for your Dad. It was a hard thing for me to accept when I knew it was time to look for another place for her, but I do believe that she is getting more attention with the therapists which helps her with walking/movement. Hoping you find what he needs!
Welcome to this group I wished I had found it sooner as well. Yes the falling is apart of this disease course. And I thought my loved one was making up that she would forget that she couldn't do things like she did before. But we had a open MRI of the brain again and the deteration was mind blowing. She had one done the year before so we had a good source to do a comparison to. My loved ones thoughts were she is going to beat this disease and get better. And the less she did the harder it would be to get better. Took over a year to process it's only going to get worse not better. I'm sorry your dad is needing more assistance to keep him safe but maybe explain it's only because you love him and don't want him to break his bones as this would only add to his problems. Best of luck. Sending hugs and prayers your way.
I had many conversations with my Mum as to why did you get up, you know you fall, to which the answer tended to be either "I don't know, I just did" or "I thought I could". As the disease progressed and her mobility got more limited the falls got less frequent but she still managed to get out of her chair on her own not long before she died - at that time myself & the carers were in awe that she could actually get herself out of the chair and start to walk, it must have taken some doing.
That's EXACTLY what dad says! I'm now at the point where I just say what a shame it is he's fallen, check he's not hurt himself and remind him to call me if he needs anything or wants to get up. Dad's progression seems to be quite slow considering his first symptoms were around 2016 and I can't see him sitting still for some time as he's still easily strong enough to stand.
We did have some success with PT programs focused on activities of daily living - getting in and out of bed, standing from a chair, getting in and out of a car. The LSVT program was a real help, if temporary, and there was definite improvement in balance and walking. I recommend it. The home exercises were something we liked to do together, too, and it made us feel as if we could do something to fight back. Temporary, as I said, but isn't everything?
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