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salsasal

New member
Aug 12, 2021
2
0
My husband is in a care home he could walk when he went in,
but is now in a wheelchair all day and taken to the toilet etc by carers
using a grab belt. He has lost 3 stone in weight and becoming very frail .
He is under a new GP . He is receiving nutritional supplements.
but no physio what so ever . I have explored every avenue to no avail .
I am constantly on the internet trying to find help and every time I find
weeks go by and he is declining all the time.
Time is of the essence he needs physio now and I cannot get it not
even privately. What can I do.
I have tried social services, ATC. CPN. Older Peoples Services.
My local Member of Parliament. All the usual Dementia and Age agencies
This has been ongoing for nearly five months and I feel myself going down.
I am crying in the wilderness.
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
Hello @salsasal and welcome to Talking Point.

I am so sorry to hear about your husband, the deterioration caused by dementia is very upsetting to see.
Unfortunately, loss of mobility - forgetting how to walk - is part of dementia and once this is lost no amount of physio can get it back. My OH was seen by a physio at the falls clinic and given exercises to do. He tries to do them every day, but he is not actually doing them properly as he is unable to understand how to do them and it is not making any difference to his mobility - he is just getting more and more unsteady.

It does sound like your husband has pretty advanced dementia. Does it really matter that h is now unable to walk? I used to push mum around in her wheelchair and talk about what we could see.
xxx
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
i’m sorry you are finding it difficult to get help.

My husband went into hospital able to walk and feed himself. He came out unable to do either. He did get a physio to come to his nursing home and she tried so hard over several weeks to get him to stand and walk. Sadly he was at the stage when he did not understand or follow instructions and as hard as she did try he never regained the ability to walk.

I don’t know of anywhere else you can try. My husband‘s physio was contacted by the nursing home. She was a private one. I at least had the satisfaction of knowing we tried, I hope you can find someone will assess your husband soon.
 

Rosettastone57

Registered User
Oct 27, 2016
1,837
0
I tried to get a physio visit to my mother in law when she was still living at home. Frankly the physio wasn't interested because she said that with dementia, my mother in law was unlikely to benefit because, in her experience , persons with dementia couldn't follow instructions. This may well be the case with your husband
 

Muttimuggle

Registered User
Dec 28, 2021
710
0
This is a worrying and sad post which is potentially the position I am up to with my mother. She broke the neck of her femur, went to hospital, had the op to put in a screw by epidural and was awaiting a place in a Rehab Centre. Then she caught asymptomatic Covid and had to be detained 10 days in the hospital.She lost the original place in the Rehab Centre so it was actually over 3 weeks before she got there. Before the fall she was mobile. She didn't really use aids in the house because she thought she didn't need them and used to go for an independent walk, most days, with her rollator.
In the hospital, before the Covid infection I witnessed them getting her to stand and walk about a few shuffle steps with a zimmer. The hospital physios said she would do better in the Rehab Centre where they would give her physio "every other day".
To ddate, in the Rehab Centre, this has not been the case. She has been wheelchair bound and taken to the toilet for nearly a whole week with no physio, no exercise. One of them said something about staffing shortage. I do feel, like you, that time is of the essence. I am going to phone the Centre tomorrow and ask whether her physio assessment will happen imminently. It feels quite sad because my mother will not ask for help to regain her mobility or some of it. She seems to just allowing herself to be "done to" now. She also seems currently fairly contented with that. I know physiotherapists are in demand at the moment but I hadn't thought of the possibility that the "system" might be excluding her because of her dementia diagnosis. I feel like I am trying to fight for her but she has lost her desire to fight.
 

canary

Registered User
Feb 25, 2014
24,920
0
South coast
@Muttimuggle - there is a difference between the loss of mobility following hip fracture repair/hip replacement and the loss of mobility due to progression of the dementia.

If there is loss of mobility due to hip surgery of some sort then physio can restore mobility - assuming that they can follow the physios directions and will co-operate with the exercises (which is by no means a given...)

If the loss of mobility is due to progression of dementia, then unfortunately it cannot be restored. This is the reason for OHs losing mobility and physio has not prevented the progression. It is part of dementia and like everything else lost to dementia (inability to use the washing machine, loss of ability to tell the time, loss of continence, loss of speech, etc etc) once it has gone, you cannot get it back. I had assumed that the loss of mobility that @salsasal was talking about was due to progression too.
 

Banjomansmate

Registered User
Jan 13, 2019
5,364
0
Dorset
After he fell and broke his femur The Banjoman had physiotherapists visit him both in hospital and when he was back at his care home but his dementia level was such that he was unable to understand and interact with them. He had been fine walking without any assistance before the fall. I’m afraid he deteriorated rapidly after that.
I think sometimes we just have to accept that the shock of accidents, hospitalisation and an operation is going to really affect someone with dementia and magnify their loss of mobility and understanding.
 

jenny-b

New member
Aug 11, 2022
6
0
My mum was able to walk easily for 20 minutes without any aids. Then she had a stroke and lost use of her left side. As others have said, due to the dementia she can't follow the instructions to do the exercises. After about a week there was a little movement in her foot but little after eight weeks in hospital. I tried to focus her when she came home and got to the stage where she could rotate her foot and lift her knee, so was so keen in the few minutes she could focus but it wasn't enough.

Her arm is completely locked up close to her body which cause a rash in this hot weather. I've tried to find a private physio but it's impossible. The hospital made a referral to the community physio for the arm but the letter they sent said she will be assessed in September 'to see which waiting list she should go on' Given that the stroke was April it will be too little too late by.
 

Muttimuggle

Registered User
Dec 28, 2021
710
0
@Muttimuggle - there is a difference between the loss of mobility following hip fracture repair/hip replacement and the loss of mobility due to progression of the dementia.

If there is loss of mobility due to hip surgery of some sort then physio can restore mobility - assuming that they can follow the physios directions and will co-operate with the exercises (which is by no means a given...)

If the loss of mobility is due to progression of dementia, then unfortunately it cannot be restored. This is the reason for OHs losing mobility and physio has not prevented the progression. It is part of dementia and like everything else lost to dementia (inability to use the washing machine, loss of ability to tell the time, loss of continence, loss of speech, etc etc) once it has gone, you cannot get it back. I had assumed that the loss of mobility that @salsasal was talking about was due to progression too.
Thanks canary. Yes, I do hope that, after 4 weeks now, starting some physio will be useful....if indeed they do start some. I cannot really assess the deterioration in my mother's dementia properly because she has been out of her home environment for so long and that home environment and those rigid routines which she had set up are no longer there. The rehab centre tries to keep the people out of their rooms from morning until night time, which is good. But when I said to her that she seemed to be happier amongst people she did not deny that but said, "But I can't really talk very much now".....which seemed to me to be evidence of her being self aware but might also suggest further decline. She also is showing some confusion over relatives now.
I suppose the two things combined - lack of mobility with insufficient physiotherapy and worsening cognition are not a good situation. We will be lucky, though, if she remains fairly happy.
 

Helly68

Registered User
Mar 12, 2018
1,685
0
I think the issue of availability of physios is a wider one. After my second knee replacement, I left hospital, with a referral to a local hospital for physio. When I contacted them they said they had no physio available. After joint replacement, physio is vital (I do accept that dementia brings extra issues). Eventually we had to pay for private sessions, until the NHS finally had a vacancy.
When my Mum came out of hospital after her emergency appendix removal, they tried physio, but she could not follow any instruction. She did have quite a bit of physical ability, but no sense of risk or balance, so it was a difficult time with quite a few falls.
I found talking to the CH manager often helped. Was the situation reduced mobility becuase of and accident and dementia, and how likely would it be that physio would be successful? Mummy got quite agitated and upset at people trying to get her to do things. It is a tough time with difficult decisions.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,356
0
Kent
Hello @salsasal

Most decisions for residential care are made because of certain deteriorations in the physical or mental health of the person with dementia and because a sole carer is unable to meet their needs.

It`s natural to look for solutions but really, once the deterioration sets in, the progression is there to stay.

My husband was offered physio after he fell and broke his arm. He was unable to understand what was expected of him. He was unable to understand why he needed it. It was a disaster.

It helped me realise however much we want to, with dementia we cannot stop the tide.

I see this as acceptance rather than defeatism. Instead of increasing our anxiety trying to find solutions, the best we can do is to be with our people with dementia and give them our companionship, our love and most importantly of all, our presence.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,248
0
High Peak
Don't despair! My mum did regain her mobility after breaking her neck of femur. Yes, it was a struggle to get a physio to come to the care home, and yes, she did struggle to do the exercises, but that was mostly because she CBA rather than her lack of understanding. She didn't see the point and had forgotten breaking her hip.

But I was mean! The two things that worked were me telling her that either she got up and moved or she'd be bedbound for the rest of her life - and she definitely didn't want that. And the second thing was getting her up and walking. I persuaded the carers to walk her up and down the corridors every day, with her new frame. At first she needed two carers to assist but within a few days she was down to one and was managing herself (with the frame) after a couple of weeks.

I think the main thing we had to watch for in the following few months was falling, because she'd get up and just set off, without the frame. She always told me it wasn't hers and someone had left it in her room. I put ribbons and coloured tape on it one afternoon which she liked so that did work. Mum remained mobile for the rest of her life. (OK, a bit wobbly, slow and stooped but still moving under her own steam!)

It's nearly 3 years since mum died but I will never forget the excruciating squeaks and squeals of her frame as she moved down the corridor...!
 

Duggies-girl

Registered User
Sep 6, 2017
3,618
0
Like @Jaded'n'faded I basically bullied my dad to get up and walk. I told him 'use it or lose it' A bout of pneumonia and 3 weeks in hospital had left him in a wheelchair. He had a week on the physio ward and basically they did nothing.

We got him home and I made him stand by pulling him self up using his frame and then sit and repeat at regular intervals throughout the day. I had to hold the frame steady for him but then we progressed to one step and then two and so on. He was very mobile within a couple of weeks, sometimes even forgetting his frame which was a bit scary for me but he remained mobile although wobbly for the rest of his life. He used to hang his frame on the wardrobe door nobs because it was tidy.
 

RosettaT

Registered User
Sep 9, 2018
866
0
Mid Lincs
My OH had been in hospital 12 weeks and became immobile, the hospital physios weren't interested, in fact they told me he would never walk again.
However my OH could still take instruction, he just didn't like them and I wasn't surprised tbh, they spoke to him like a child.
As soon as I requested to be there and asked him to walk for me he did, he was tottery but managed about 30 yrds. The physios were astounded.
I got him a private neurological physio via a local fitness centre. Not inexpensive but worth it I think we were fortunate that the fitness centre had one and was just down the road. He walked with a frame before eventually dementia took over. He walked to the end but with the help of two.
 

Bettysue

Registered User
Mar 21, 2020
204
0
My husband is in a care home he could walk when he went in,
but is now in a wheelchair all day and taken to the toilet etc by carers
using a grab belt. He has lost 3 stone in weight and becoming very frail .
He is under a new GP . He is receiving nutritional supplements.
but no physio what so ever . I have explored every avenue to no avail .
I am constantly on the internet trying to find help and every time I find
weeks go by and he is declining all the time.
Time is of the essence he needs physio now and I cannot get it not
even privately. What can I do.
I have tried social services, ATC. CPN. Older Peoples Services.
My local Member of Parliament. All the usual Dementia and Age agencies
This has been ongoing for nearly five months and I feel myself going down.
I am crying in the wilderness.
My partner has been in a care home since January. He has lost mobility in that time and is mostly in a wheelchair. He has also lost a lot of weight. He is on supplement drinks too. I totally realise he cannot follow instructions. It is often difficult to get him to eat as he clenches his teeth and doesn’t know to open his mouth. I’ve discussed it all with the manager but as she explains it is a terminal illness and the decline is inevitable. It is so heartbreaking to watch. ?
 

Muttimuggle

Registered User
Dec 28, 2021
710
0
Don't despair! My mum did regain her mobility after breaking her neck of femur. Yes, it was a struggle to get a physio to come to the care home, and yes, she did struggle to do the exercises, but that was mostly because she CBA rather than her lack of understanding. She didn't see the point and had forgotten breaking her hip.

But I was mean! The two things that worked were me telling her that either she got up and moved or she'd be bedbound for the rest of her life - and she definitely didn't want that. And the second thing was getting her up and walking. I persuaded the carers to walk her up and down the corridors every day, with her new frame. At first she needed two carers to assist but within a few days she was down to one and was managing herself (with the frame) after a couple of weeks.

I think the main thing we had to watch for in the following few months was falling, because she'd get up and just set off, without the frame. She always told me it wasn't hers and someone had left it in her room. I put ribbons and coloured tape on it one afternoon which she liked so that did work. Mum remained mobile for the rest of her life. (OK, a bit wobbly, slow and stooped but still moving under her own steam!)

It's nearly 3 years since mum died but I will never forget the excruciating squeaks and squeals of her frame as she moved down the corridor...!
Thank you. That might sound similar to my mother. I went in today and have spoken to a senior member of staff, and without trying to sound too pushy, I asked when the physio assessment would be. I re-stressed my concern because my mother already did 3 weeks in the hospital not getting the physio she needed there and how she was mobile without a rollator in the house before the fall(Ok maybe shouldn't be) and also mobile with a rollator walking around the block. I also re-addressed, with my mother, the subject she originally brought up about wanting to sell her house(so by implication to move somewhere easier). She said that was a good idea...so I continue my research and my searching but no place could be held for her(even if there was one) anywhere until the final Social Services assessment. All the care homes i speak with say they would want to see how she was assessed.I'm getting off the original subject here and may need to start another thread!
 

Mrs Humphrey

Registered User
May 14, 2021
71
0
Muscle strength in an elderly person who is in bed is at the rate of 5% each day . My husband who has recently died was fully mobile until he got hospital induced covid which caused delirium and within 3 weeks became totally rigid and bed bound...couldn't even move his arms to feed himself. He spent the last 17 weeks of his life in hospital and care home . I had a lot of arguments with the care home asking them to arrange physiotherapy which I would willingly have paid for but they were reluctant to instigate this and were not proactive in even getting him into a wheelchair which caused total rigidity of his body. He used to cry out in pain when carers tried to turn him or help him because he was totally stiffened. So my advice is to fight tooth and nail to get physiotherapy for your OH. My husband just gave up eating and drinking ..he had had enough! The death certificate said cause of death "Frailty of old age" and obviously Alzheimers as a secondary cause. He wasn't frail before he became bedbound so care homes should have sufficient staff to mobilise their residents.. they charge high enough fees!