Safety concern and falls

[Khartt]

Although my husband was recently confirmed with PSP, he has been symptomatic for 3-4 years. He's had PT both inpatient and now home healthcare for over 3 years to work on balance. He makes poor decisions with regard to movement thus falls a lot. He uses cane and sometimes walker but I have to assist most of the time. Question is: how do I keep him safe when he is impulsive (part of PSP) and he gets frustrated with me for hovering??

[Rhonda838]

Hi it’s me again I can only tell you what to went through before I got a walker... fall, fall , fall. I just tired of hurting myself! And I knew one day I was going to bust my head open and be in A LOT worse shape

[Hidden]

My guy has had cracked rids on both sides 20 stitches and still doesn't get it.Had to take all walking devices way because it gave him a false sense of security, he would pick up the Walker to turn it and trip over or fall backwards with all the walking aids.I try to make sure I'm with him when he wants to walk,sometime surprises me by walking right by me,he doesn't understand how much it scares me.lots of broken item.

Good luck

Dee

[Khartt in reply to Hidden]

Thanks for the reply. I'm afraid if I take everything away he will just get up abs down without any aid. Sometimes he uses the walker to get to the kitchen, then goes back to his chair and leaves walker in kitchen! We've had stitches in head, ear, twice cracked ribs, twice X-ray hip! His poor bottom is sore all the time so I just ordered padded shorts . He is very impulsive and won't wait for help

[Trillo in reply to Khartt]

Yep, I know where your coming from, very impulsive, can't get out quick enough , out of the car, doesn't wait till I get out of the drivers seat to get around and help him..

[aliciamq]

I finally had a screamin' mimi fit about spending my life in the Emergency Room. At first I wanted to give him space and dignity - instead he got stitches 4 different times, a broken wrist and broken ribs . I had to refuse to go places unless he used the walker - he had falls in every store, even knocking over counters and traumatizing everyone around us ~ I just got to the point that I had to put and end to just using the cane and insist on the walker. I did it in a nice, quiet considerate , you have no choice buddy way. You have to make that special face - the " I'll knock you flat " face. We haven't been to emergency in a very long time. He still falls every day , unfortunately. We are to the stage that I am with him every second he is up and about. They are no longer those catastrophic break everything in the house falls. Good Luck🙂

[Khartt in reply to aliciamq]

Thanks for the reply, yes I've had a few of those fits! Maybe taking away the cane and insisting on 100% walker is a good idea.

[NannaB]

Unfortunately your husband will probably keep falling until that sad day comes when he can’t get out of the chair by himself. Sad but easier on you if you get the appropriate hoist.

I bought a double baby monitor with two cameras. One I put in front of my husband’s chair and one overlooking his bed. The monitor was with me wherever I went indoors and in the garden, so I was watching him constantly. If he started to get fidgety I could talk to him through the monitor giving me time to get to him. I know my husband hated being alone and him knowing I could see him, relaxed him. He would wave to me and I’d talk to him. It didn’t stop all the falls but most of them. He also had a sensor pad under his seat and on the floor so if he did get up and alarm went off and the little box I kept on me vibrated. Except one day it didn’t. I’d seen him in the monitor so rushed to him and wondering why the alarm was silent, found he had removed the batteries from the pack by the side of the chair. He thought that very funny.

Once he started falling regularly, I had to walk with him, even when he used his walker otherwise he would still fall but end up with the walker on top of him. The exercises given to him by the physiotherapist didn’t appear to make a difference.

Only once did my husband get frustrated by me hovering. He was using his walker to get to the bathroom with me behind, hand on hips. He said, “Don’t push me”. I told him I was steadying not pushing and let go. Of course the next step he made he lost his balance and fell backwards but I was prepared and caught him before he went back too far. He never said anything like that again.

I was going to say until your husband becomes immobile, you need vigilance and a lot of patience, but that was silly as you need that until you are both free of PSP. Hang on in there.

Very best wishes.

XxxX

[Khartt in reply to NannaB]

Thanks for the reply. I'm usually close by to help. I like the baby monitor idea. We use walkie talkies now is I am outside , but he doesn't always call me when he needs something. I think he is still try to prove he can still do it alone

[JA10]

It is a really difficult situation, PSP just makes everything so difficult. We tried a walker for my Mum and when she was going from A to B is was fine, but she kept stepping away from it to do things. My Dad, who was already in a wheelchair due to MS, kept telling her not to, and to hold on with both hands all the time, she kept trying to get things and kept falling. After breaking several bones including her ribs very badly, she fell again in the kitchen and broke more ribs. My Dad was always a practical man and it was so difficult for him to not be able to help her much as he could only sit in his chair, he couldn't get down to her because he can't get up off the floor. Once she was in hospital, he got rid of the walkers and organised a wheelchair for her. She complained and tried to get up, but her ribs still hurt so was not up to moving much. My Dad just pleaded with her, as did we all, and eventually she accepted it. I think she realised just how sad it made my Dad, who she still loves so much, and possibly maybe she actually enjoyed not having to go to hospital all the time, we certainly do!

It was a big accept as she could not steer an electric wheelchair, (our first idea - not good for PSP) so with Dad also in a wheelchair she cannot move much now. My sister and I try to get her out of the house as often as possible but sometimes, excepting medical appointments, it is only a couple of times a month. So she doesn't really leave her living room most of the time, apart from when her carers are there to help with personal care which is 4 times a day (she also had to review all toileting, which included using incontinence pads, before she really needed to).

Good luck, I hope you all get there in the end. Julie

[Heady]

I suppose the simple answer is, you don't! It is impossible to stop the impulsive part of PSP and frustration for both of you. Steve got very frustrated with me hovering by his side, but he hated falling even more. After a day in A & E, I knew I could relax for a day or two. He would do as he was told. He always accused me of bullying him, I probably did some days, but if that saved a few more broken bones, so be it.

Unfortunately, they haven't developed a pill for patience yet. You do need plenty of it where PSP is concerned. There is nothing anybody can say or do, to get you through this part of this evil disease, except to say, unfortunately it will pass. Just know we all understand what you are going through, the frustation and anger you are feeling. Please put these feelings down to one of the symptoms of PSP and carry on hovering.

Sending big hug and much love

Lots of love

Anne

[Khartt in reply to Heady]

Thanks Anne for the kind words

[longsuffering]

Dear Khartt,

Same here-only safe option is to say-into a wheel chair for moving around-we had no more falls-still need to excercise and sit and stand at a rail to keep healthy even walk between rails on the ramp into the house-up and down to keep as fit and strong as possible-this is so important

[NHGrace]

We also use video monitors for my mom. This allows her the privacy of being in her own room, the bath, or wherever without our having to worry she’s gotten up (all her falls had been unwitnessed - we’d just hear a bang and then run in).