A couple of days ago Liz undid her seatbelt and tried to stand. She fell, of course and got a knock on her head for her trouble. Luckily not severe.
Of course I discussed it with her... questions and hand squeezes. She told me she understood the risks, but felt compelled to have a go. I explained to her about the home's need to manage risk. She understands all that being a retired Phys. Dis. Social worker.
Today I got a call... She tried to walk again and when they encouraged her not to she relaxed for a moment and then pushed on the floor with her feet tipping her wheelchair backwards... another bang on the head!
The home telephoned me and said the only way they can manage risk is to keep her in bed with the sides up. Such a loss of quality of life for her.
Anyone got better ideas as to manage these risks please?
Thanks
Kevin
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This posts opens emotional wounds for me. I don’t believe there is any way to communicate or convince her of the risks. My wife started to pace and walk in circles even when she was leaning and very much a fall risk. She didn’t always fall, but did bump into walls and door frames. She would not listen or appear to recognize the risk. I think she was anxious and frustrated with the cruel disease and it soothed her. Unfortunately this began the progression of events that led to her demise.
While in the hospital after a peticularly nasty fall, they confined her to the bed because ofd the fall risk. She lost continence and the will to live. She passed within 3 weeks.
Please don’t confine her to her bed. However I don’t have a solution for you. I can only feel your pain.
Same thing here with the car doors! My daughter and I took her out to her home town earlier this year. My wife didn’t like the confinement of the car and a number of times tried to open the car door. Scared my daughter to death.
Charles opened the door to the car as well. We had his relatives in for his birthday and they insisted he needed a car ride! Stupid. He tried to get out. Eyes troubled him and he was dizzy but couldn't tell us!
Thanks to you both. I am sorry for your problems Kevin and was so glad to hear of the ideas put forward. I know I shall need them to sometime (not too soon I hope ) in the future. Bless you all . Stay strong.... Val
So sorry Kevin I have no advice but totally understand your anxiety. Does Liz have to be in a wheelchair when she isn't in bed? Does she have a recliner chair to sit in?
It's so difficult I know. My mum would never have stopped getting up if she hadn't had a bad fall in her room where she fell back against the drawer handle and screamed and sobbed so much it really hurt her. Up until this point she never even flinched when she fell and banged herself so she continued to get up and fall .
It seems very sad that the only alternative is to keep her in bed. Its such a worry I'm so sorry I cant be of help
Oh Kevin, such a familiar story but I’m sorry I can’t help you with solutions. Colin came home black and blue from constant falls while he was in a care home for two weeks. I had computer access to the daily report and visited every day as well so could see how difficult he was. I offered them my monitor so he could be seen all the time like he was at home but they said it was against his civil liberties. I’m afraid the only way I could prevent falls during this stage was to shout “Stay still” every time I saw him start to get up and get to him quickly.
Colin opened the car door on the M25. Fortunately my speed stopped it from opening very far but it put years on me. Another thing I wrote down and reported when claiming CHC.
All this when things just really settled down and Liz and I were doing more nice things together.
Yes, the car door was scary! She was hanging on trying to keep it closed with a rather terrified look on her face! When I got that sorted and the central locks on I smiled and said, "Suicide isn't on today's program." She raised one eyebrow as if to say, "You think so?" Even though that was not her intent... Probably her wicked humour. Central locking definitely from now on.
I remember the many falls Charles had whilst trying to stand up and walk. Though it was one or two steps it was often. Sometimes he'd hit the wall and go through it and others it was on the side of the chair. The last thing he did was lean backwards in the wheelchair, like Liz, and I was always yelling at him to stop. He didn't fall but could have easily.
We just had someone with him all the time. Hard thing to do but necessary. In the bed was easier to handle.
The Trazadone helped a great deal, made him less impulsive. Bless you Kevin for all that you are doing. I know how hard it is.
I could be very positive and say how great it is that she is so lively!
But, no.
We've got it solved now. I've done a reply covering the planned stuff.
I don't know what to say about this. But, I'm falling backwards at times, when I feel very down. Other times I'm very active and energetic. I suddenly get this strange feeling in my chest and falls. Sometimes, I'm shaking. I'm fighting with the illness. I do work but, standing is little hard for me.
I guess she is also trying to fight the illness. Trying to win. Nobody likes to be in a wheelchair or in bed all the time.
Doctor told me there is nothing to worry about. Nothing serious. Told me to be more confident and when I feel it coming, asked me to sit down and relax for awhile. Yes, I'm revived after awhile, told him so.
Told me to check Bp when this happens. Changed the medicines and dosages a bit. It seems more of anxiety and depression problems.
He will see me after 15 days to see my progress.
I'm thanking all for the support.
Thank you Kevin sir. My confidence level has gone up after coming to this community. I feel more of myself nowadays. Will post after 15 days.
Thank you Marie. It's more of anxiety and depression problems along with Bp. Doctor has changed dosages, medicines and timings to take. Will see him after 15 days. Will report my progress.
Extha well it might well be your BP? It can certainly make you dizzy? So fingers crossed that the adjustment in medication will help you. Glad too that you are going back to the doctor in 15days. It is good that he is monitoring you.
I have the impression that you are at the beginning of PSP / CBD.
I wanted to ask you a detail of your feelings before falling, since you seem to be very aware in the moment before the fall.
You could not be dizzy, it is not neccesary, only that communication is blocked between the 3 factors that handle balance: visual, vestibular apparatus in the inner ear and proprioceptive sensitivity. All this is coordinated by the cerebellum, it's a matter of milliseconds.
I wonder why when my sister thinks or whispers a military march, it works a stimulus to overcome the situation of feeling her feet stuck to the floor and begins to walk. Is it part of proprioception?
Actually, I am looking for exercises that can be useful to stimulate the senses that still work, since there is no access to the inner ear and the vision is almost absent.
Sorry I am asking as if you were a GP. Very sorry, I try to understand and I found that you have a singular conciousness of the pre-falls moment.
Stay in contact, I agree with you, nobody wants to be confined to a chair or a bed. At least, if we have a rest of conciousness.
Thank you. It seems more of anxiety and depression problems, along with Bp I guess. Doctor changed the medicines, dosages and timings to take. Will come again after 15 days.
Oh Kevin, poor Liz! I’m really sorry Liz has had another bump! Bloody Psp!! Sadly I can’t give you any advice on this, other than any attempts are only attempted with the help of a big strong person preferably two! Please give Liz a hug from me and here’s a squeeze for you too darling x
All familiar to me. Chris said he could not help it. We both got upset but it happened. He had stitches and bruises galore. In the hospice they lowered his bed to the floor when he had respite.
I really really love you guys. Am sitting in the garden enjoying a glass of wine after a lovely dinner prepared by my daughter who lives with us (thank god) and reading all these messages. Am so happy I found you, and to know that you are going through the same things... love you all, cheers
I would like to say that in this chat I have found colleagues with a great human quality who are always willing to help practically or psychologically.
I want to take this opportunity to express my admiration and gratitude to all of them who also know how to add a few drops of poetry and British humor to everything they say and do.
Although I am Basque, my mother tongue is Spanish and in English I express myself with considerable difficulty with the help of Google. For that reason, perhaps, I tend to be very synthetic and practical, which may seem a little rough. I apologize.
Luis you do really well with your English! You have also been so helpful to many on the site. I learnt Spanish at school but unfortunately remember little of it now!
Luis I have been so impressed by the knowledge and sympathy you have shown. I know you have taken on the task of passing on information to all the newbies. It's good to see how you have relaxed with us all. You are a valued member of the family.
I am very sorry for Liz and for you. In my experience with Dave, he seems not to be conscious of his limitations and it puts him in a high risk. I would ask the health care place and see which precautions and supervision they are taking. Evidently she needs a 24 hr supervision because this is their responsibility.
They would do 1:1, but as I am at the top of normal CHC funding and paying more on top then the additional cost would fall to us. That's unlawful it would unlawfully... Snd Liz would hate being !:1'ed too.
With the help of folk here I found my solutions.
I have discussed them with the home and they have agreed that, if they work they would agree that the risks were covered.
Oh, yes. The worst for us when I found him trying to get into the shower. My guess is that the part of the brain that says, "I want to" is not in touch with the part that says, "What, are you nuts?" Anti -tippers work great for the backwards tips, gait belt serves as a restraint. Bump cap saves his head. At least between the seat belt and the car door being broken so he can't open it, he can't escape that way. So other than that, I can only offer my empathy.
I am just catching up here- great suggestions from everyone. Have not heard of chest straps, seat belt guards all of which I am off to investigate as I have an impulsive other half too. Routine for him to undo seat belts and open the car door
Fingers crossed some of these things work for you and Liz too
Hope you can get some of this equipment. Like you and I suspect most people I had never heard of these before! I could have used some of them when G was ill. A real shame that carers are noit told about them?
Hope you are coping alright? It is very hard. Hope too that you are taking care of yourself.
We share a common bond? One I wish we didn't have to. It's an huge problem for everyone. As for those who have PSP or CBD or any other neurological condition there is not anything like enough knowledge about them. People always look shocked when I tell them about it and I do!! It's the only way to get public awareness?
Take care of yourself. You know we are all very lucky to have found this site?
Oh Kevin I don't know whether to laugh or cry after that last post!! I have my fingers crossed that your solutions work for her. It is a hellish condition isn't it? I genuinely think they don't know they will be hurt until it's too late. I realise I was very lucky with G as he never attempted to do anything like you and others have described. The worst fall was when he ended up under the Christmas tree!! It's funny now but it wasn't at the time. He thought as he only had to walk a couple of steps he would be alright. It must be really hard when you go from walking with no problems to gradually losing your ability to not even walk a couple of steps?
Anyway Liz has met her match!! I am hoping with all my heart that the things you buy will do the trick.
Hugs to you both! She must feel almost as desperate as you do?
Kevin that's because she thinks she can do it? No sense of danger? Then when she falls she must feel that she wants to give up? Even if only for a while, before the next adventure? Good luck! We will all want to hear how she does with the harness.
My heart goes out to her, poor woman. As if that's not bad enough she has to put up with you!!! 😄 She is so lucky to have you but I do think she knows that already? You are certainly living up to all the challenges she throws at you. I think you are doing a great job.
I have to stay with the current wheelchair for now because it's able to take the fittings I need for the AAT Stair Climber to get her up the steps to our front door.
When she is no longer able to come home I will definitely look into that.
Yes, as a one time sailor I like that dictum. A thousand miles from shore and you get a flat tyre...
Your floating wheelchair is a very likely buy for us. We are not far from Liz being bed bound and that would keep Liz in the hoy palloy quite a bit longer.
We are waiting for a tilt in space wheelchair, been waiting for 3 months so far. Hoping Mum will find it much more comfortable as she hates the current one. It maybe too late now for her to be able to sit without pain though
I am a ludite, when the young bag vsits she will get pictures posted. This wheelchair also has height adjustable armrests which stop lateral body tilt.
We have a tilt in space wheelchair also. It reclines and can stop at any point. It was reccommended to us because Dan does not move much. The varrying positions of the chair are intended to also help minimize pressure sores.
If Liz continues to be stubborn , it may irritate her. For someone who seldom moves, they are comfortable and also convenient for a caregiver .
Just looked at your link and wondering why do PSPA not suggest such things? G almost fell out of the wheelchair when we were in an Ambulance but nobody suggested anything. He obviously needed some of the restraints although I have no idea which. Some practable advice for carers would be good?
I am learning things all the time. No use to me now but how I wish I had known when G was going through this. I agree about the nutritionists. Ours never showed up!! This part of the world is beyond belief!
Hi Kevin, I haven’t read the replies to your post so I am sure there will be some excellent suggestions and answers. I know when my hubby used the wheelchair we used a type of harness to secure him also he had to be strapped in the stairlift. Unfortunately I am of little help....sorry. Love to you and Liz. Jxx
Wow, who knew the connection between PSP and opening car doors!?! That is crazy. A couple of years back, before we knew Bob had PSP, he opened the door ... after he unbuckled his seat belt. When asked why, he said he thought the door wasn’t closed tightly. When asked why he unbuckled his seatbelt, he said he didn’t know why he did that. 🙁
And, Kevin, I loved your analogy of Liz’s stubbornness! I can sure relate ... seems Bob is hellbent on doing the opposite of anything I mention!
Liz and I had a chat about all of this yesterday whilst I modified her seat belt so she couldn't undo it... I felt like some middle ages jailer fixing the shackles. (No suitable off the peg device available unless I get a whole seatbelt rig for nearly £200.00)
She accepted it as a trade off in order to get her freedom back. But she felt so low that she had to be restricted in this way.
She gets a little confused when I ask her why she tried to stand unassisted or when she pushed her wheelchair over backwards. First she thought it was because of muscle stiffness and the need to stretch then it was protest and boredom. Then she didn't know. I just don't know.
Best to you
Kevin
Anyone wanting to do this modification it's for seat belt buckles of the old push button on the top face type.
Cut a piece of plastic (2mm thick polyethylene as used on bowl scrapers in the kitchen is good. It will cut with scissors. drill a 5mm hole over where the button will be.
Abrade the buckle and the polythene (on one side) with sand paper.
Glue it in place using something like a high tech builders glue I used CT-1... Gorilla glue would to it too.
I then, for good measure applied self vulcanising tape over the two ends. This becomes a single plastic mass after a couple of days.
The buckle will now only undo using a pen pushed through the hole.
It ocurred to me that many car doors these days have childprof locks on th front as well as the back
if so then there is a lever in the door lock which by moving it makes the door 'childproof'--this means you can open the door from the outside but--crucially--not the inside
Jim and Kevin, this is what I was thinking too..I had no advice re devices for her chair, but I kept wondering, why should she do that?... Because she wants to! She wants to at least try and doesn't have fear. She is a feisty woman who was in charge - and now this s@$t!
Is there any program at the home or a rec centre or an aquatic centre that would allow her to try to walk with a harness? Like a ceiling-mounted harness (i've seen these at some rehab centres) Or if she ever liked water, an aquatherapy experience where she can move free in the water in a safety harness? With attendants of course...Just trying to think of SOME way she could move her body - which is different from "mobility," or moving in space.
Actually Kevin that was my first thought!! ☺ I thought why did you mention it to her?! Maybe if you don't talk about it and distract her with her favourite music she might not even think to do it?
Good luck to you! Hope you crack this one. I suspect you will as nothing seems to last that long and then she moves on to something else? When you have the equipment too it might help?
Ok Kevin psp stinks, they still think they can do things, have to have eyes in the back of your head, poor Liz , George fell out of his wheelchair hurting himself, he thinks he can still walk, saying just needs my help, it is so sad for them and it must be frustrating, sending you a big hug Kevin. Yvonne xxxxx
Yvonne that is how G was asking me all the time to help him walk! He thought I could help and must have been disgusted with me when I told him I couldn't! It is like a part of the brain just doesn't accept what they can and can't do?
Poor George. It is all so sad. You have been there with him for ages now. I hope you are taking care of yourself? That is so hard to do.
Yvonne so sorry to hear that!! G didn't do that but did start taking his convene off which was almost the same. This was just weeks before he died though. George seems to be doing well apart from testing you to the limit?
Yes he is ok, very tired doesn’t want to talk today, won’t get out of bed, so I have left him in bed, doesn’t want to communicate at all won’t even put his thumb up or down so I have just left him, I think he is not happy because I went out for a few hours with our son, oh well had a lovely time after yesterday’s nightmare. Yvonne xxxxx
Yes Kevin we go every year and I get to spend some special time with our son, oh well here’s to another quite evening hopefully, George will sleep tonight xxxxxx
Nightmare Kevin. John has started to try and lean backwards in his wheelchair. I keep telling him that he will hurt himself but he cannot listen. He has also started to do the same in the dining room when he has had his meal and wants to move as he is impatient. Bought him a recliner chair but when he gets hold of the remote he is a menace. Does that sound familiar Yvonne? Xx
I had to put the remote under the chair in the end!! He hated me doing that but otherwise he could stand up when I wasn't there. He was in the Hospice for a week's respite and they had to do it too. I went to see him with my Granddaughter and he looked so miserable!
I think by then he was getting to the stage where there was very little he could do. Bloody awful condition isn't it? You end up feeling like a jailer when all you are doing is trying to keep them safe?
After dad fell out his wheelchair the 4th time the nursing home said they wanted dad in bed unless a staff member was present. We compromised by getting a tilt back type wheelchair.
Dad doesn't walk so he was just falling. Here a patient can not have a seat belt on wheelchair UNLESS they can undo it themselves, which dad can't.
Yes, those tilt back chairs look good. I think we will end up using one of those.
Here Liz can request that she has a seatbelt on,which she can't undo, as she has the capacity to do so. Similarly she has the capacity to request it be removed, which they must then do.
I hated it when it was suggested that Ben be confined to bed, he was always very comfortable in his recliner chair but I took controls away when I left the room as he was inclined to fiddle with them and almost catapult himself out of the chair. He hated his wheelchair and never wanted to go anywhere. One of the lovely neurologist who was conducting a trial that Ben was attending, Professor Nigel Leigh, rightly said that the better you look after them the longer they will live. Our protecting them from every danger certainly must extend their lives enormously but proved in many instances that it takes its toll on the carer. We all almost turn ourselves inside out looking for solutions, that's what you do for someone you love.
Anne maybe because no matter what we do it marches on? We feel we should be doing more to help, or stop it progressing? We feel like jailers trying to keep them safe? I think we all suffer from great heartache as a result of all this but we feel guilt! Seems silly when you write it down but when it's your loved one you feel you should have bought that magic wand you saw in the shop...just in case? If only someone invented one that worked?
How are you doing Anne?
Marie x
Sorry to hear. Larry’s just as willful as well. He either dosen’t realize his limitations or care when he tries to do something on his own. He hasn’t fallen a lot because I am mostly always with him to stop him.
He is still in fairly good shape for this disease. He can walk with me assisting, eat, wash himself, talk. It is exhausting being hyper aware constantly. I will be lying on my bed and hear him unlock the rolator handles. I know I have to get up to see what he is trying to do. I am happy I have a prescription for diazepam to assist me with getting enough rest and helping my muscle strain.
He comes from long lived people. His father died at 85. His mother died three weeks short of 95 the first of June this year. Other than PSP he has no health problems. I on the other hand don’t come from long lived people. He could out live me.
My Dad has suffered with PSP since 2012, diagnosed PSP/ CBD overlap 2014. He often attempts to push himself out of chairs if not moved constantly. We rented and have since purchased a chair with a tilting mechanism and footplate. This has proved helpful as my Dad is kept upright and safe. In a tilted position he is unable to push himself out. It also alleviates pain in his neck, makes TV viewing and feeding easier. Dad does not like to recline as it puts pressure on his spine so the tilting mechanism allows him to remain in a seated position. It is a Seating Matters chair.
Dad was in hospital for a week in June and they did not allow him to get out of bed as they advised that ‘they did not have hoisting equipment’ - unbelievable!!!!! We found that in just a week my Dad had muscle wastage and he was extremely stressed and agitated at having to remain in one position so getting into a chair is vital for him.
This may not prove suitable for Luz as I know each persons needs are different, I just wanted you to know incase it helps. When my Dad put himself at risk he would just say, ‘I thought I would give it a go’ flustrating when you are sat in A&E.
I was astonished, when I got to the home they had one very similar in her room. Brand new. A German make. Probably not quite so good, but ever part bends separately to manage posture.
But, hey ho... They got her in it and the managed to get herself into a position to do a diver's role over the side.
They are going to look at the harness that can be fitted to it. She looked furious when ?I told her.
I got her home and we talked. She said that she just get's so frustrated.
"I thought I would give it a go." Yes, that is so PSP!
Dear Kevin - It is time to share a story about my son escaping from the hospital. Head injuries from a motorcycle crash - his broken back had been repaired but he was confined to wheelchair and had not walked at all. He was 25 and in good shape - he paddled himself to the nurses station with his feet and sat there watching people coming and going. There was alarm on his chair as he tried to pass by and they stopped him before he got on the elevator. Later he sat watching - untied the belt attaching him to the wheelchair - stood up and hid among a group of visitors getting on the elevator. He was heading out the hospital door when a visitor saw his gown flapping open in the back and alerted a nearby nurse. So then they tied the belt in the back so he could not reach it. He reached it and was found out sooner this time. He was a challenge for them but they kept moving the knot on the belt around to new places and that kept him busy. My mom was also also a challenge for the nursing home - never escaped - put managed to get past their alarms a lot (she always fell). They put her in bed and that did not keep her down. So they put a mat on the floor with an alarm . . . she figured a way to by pass the mat and then fall. I can only imagine that I too will give my loved ones fits someday. Tell Liz this story and please laugh as you do - make the story as silly as you can and bring a lighter side to this dangerous situation. Help the staff by coming up with a beautiful belt of harness for Liz to attach to the chair. Make a lot of bread of for the staff and some flowers might help too. You know me - I always took cookies.
So, I would like to summarise your family if I may, "Stubborn as hell, liable to do a runner and possibly armed with axes. However on the lighter side there is a tendency to bake cookies." LOL
My kinda family - Yea!
Though you really have been through that mill a few times now! I admire you fortitude.
But hey, Liz was a Hospital Social Worker for some time. She came home looking really kind of relaxed one day. So I asked her how the day had gone... "Oh, a guy with gunshots did a runner from his hospital bed. A security team issue, but I went to lunch and saw him with his drip still in sitting with the drip stand next to him in his gown at a street side cafe table."
Well, it's London and no-one would blink at that.
She sat down with him and had a coffee with him. He said he just fancied a fag (cigarette) and a coffee. She said, "Nice: you do know you walked out of a critical ward don't you." Reply, "Oh yes, I put all of my wires on to the patient next to me."
The human race is soo cool some days.
Yup, I will share with Liz... We talked about the need for a secure seat belt, but I had already told her about your axes and she said she would go with the seatbelt if it had leather hatchet holsters slung one on each side of her chair. You have started something lol.
Kevin you know my family pretty well - we consider Bull Headiness a honorable family trait. It is what has helped us survive. Tell Liz I love the holster idea - I will tell my son that I want one for Christmas - so maybe? Also tell her I admire her greatly.
On a more serious note today I spoke with a PSP peer support person. Lovely Woman - when I hung up the phone I cried - happy/sad tears. I believe she will be of great comfort to me in the future. She will call me next week when she returns from vacation. Thanks so much for guiding me in the right direction to find her. Sending Hugs to you and Liz - Granni B
Good Morning Kevin - just want to check in. . . I want to thank you and Liz for sharing your journey . . . I read some of Liz's old post and they have helped me more than I can say. I believe you two may have a very supportive book for PSP carers and patients - Think about it.
I know my many falls are do to my not wanting my life to change . . . oh silly me . . . I love the outdoors and yard work but that has come to an end. I will continue with throwing axes as long as possible (sitting down). Sunday was our first game - and I have no talent for it but we all laughed a lot - and it was wonderful.
Thanks again for sharing such important information. Sending hugs - Granni B
Gosh it must be very early in the morning there - no?
Waiving hello
Yes, these illnesses mean giving up so much.
I love the idea of axe throwing... It seems such an appropriate response to this illness. Long may you laugh. Do you sound a warning siren before you all start throwing
That's kind to say about a book. Right now there is too much sadness and anxiety. I'm so pleased you got something from the posts. When she focusses Liz still has tremendous insight into it all and other people.
I'm going to miss here terribly.
I've learned a lot from folk (and Liz) here about the value of stubbornness. I had always planned to go back to sailing and the sea on retirement - The sea sort of gets inside you. My family are trying to dissuade me. I'm not so fit and strong as I once was.
I once met a Japanese guy who had lost both of his legs and was sailing around the world in a small catamaran. I think one day I might just get something small with a small cabin, heads, bunk and cooker.When no-one is looking.
Keep throwing those axes - your doing it for all of us.
Oh no, glad she’s okay. When my dad does that, the home puts him in a recliner in the central living area so they can keep an eye on him and the recliner is harder to get out of. That way he isn’t confined to bed.
Sorry to hear this, mum does this when she is left alone in the toilet. I was going to suggest some other buckle on seat belt but looks like u have found a better idear. X
Oh Kevin I hope that the suggestions work for keeping Liz safe. Please keep us updated. I still have to face this hurdle so thank you for being the guinea pig. Waiving at you too. xx
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Head Restraint for wheelchair passenger in WAV
