Unsuitable for physio??

[MeganCat]

Hoping someone can offer some advice or experience-
Mum has been in hospital for 6 weeks with chest infection and flu. Before admission her AZ was late moderate I would say but she could walk, and recognise the need to go to the toilet during the day. She was just beginning to have difficulty feeding herself.

Plan A was to get the physios in and see if she needed fast or slow rehab on discharge, as she started to become less responsive - a nursing bed was added as the 3rd option. She was really poorly and the hospital got me in to tell me that they thought she was withdrawing as she was pretty unresponsive and not eating/drinking. I really thought we were at the end of the road.

Her appetite has now improved a bit and she is eating about half the food offered if it is fed to her, drinks she can sip out of a cup if you hold it, and can still use a straw to a degree. She sometimes opens her mouth for a spoon, sometimes she seems not to know what to do, and will kiss it. She is now 2x incontinent.

Physio appears to be off the cards now (and nursing bed option being persued - actually back where she came from but on different basis) - when I asked about it the nurse said that she couldn't follow the physios instructions so it couldn't be continued. They started with asking her to move her hands etc. I asked if 2 of them could get her to her feet (I thought walking may come back if reminded of feet on floor) and they can't (H&S no doubt). I'm sure they have guidelines over what can and can't be done and presumably some criteria to determine that physio is not possible - does anyone have any idea what these criteria are?

My opinionated colleague at work was telling me I needed to sort it out and get her on her feet and surely she'd do it if I was there. I just don't know any more and wonder that I'm letting mum down. Her dementia is very advanced now I'd say - she still knows she knows me, not who I am, but can't pick a cup up herself or even eat food from her fingers. I'm visiting her every day and trying to get some extra food into her.

Is this just par for the course for the next stage? I can't believe how quickly this has progressed. Infection is all sorted now, but it has had a massive impact. Her notes say she's verbally aggressive; I think she's frightened when personal care is taking place. So perhaps she would be the same with physios???
When people stop walking do they just remain in bed? (I remember my granny being bed bound but that was 20 years ago). I guess writing this has made it stark what she can no longer do. I just don't want to let her down, and want her to have the best quality of life. Is there anything else I should be doing?

Sorry this is such a ramble!

 

[Witzend]

I am no expert, but at my mother's CH I have seen residents refuse to cooperate with physio, since presumably they are simply not able to understand why it is necessary. And I suppose there is only so much coaxing or encouraging the staff can do, if the person just will not do it and trying to make them just gets them upset or agitated.

Does your opinionated colleague have much of a clue about dementia? People who don't have much of a clue are often full of advice about just how this or that should be done or managed, and would be, if only supreme founts of wisdom and know-how like them were in charge.

A friend's mother was bed bound for her last couple of years - as far as I know they could find no physical reason for it - she simply would not get up, or try to. She was living with my friend and her dementia did not seem to me to be as advanced as my mother's. But in the end they gave up trying, since it just got her in a state and she was apparently contented as she was. As my friend said, at least they did not have to worry about her wandering or falling.

 

[canary]

My experience of physios is that if they can possibly get someone to stand they will do. They even got my MIL who was insisting that she couldnt do anything at all to stand unaided!
I would think that if everyone is saying that your mum cant do these things, then she really cant.

 

[Pickles53]

My mum had poor mobility for many years owing to arthritis. She had a few falls and managed to carry on though she gradually got more and more afraid of falling so eventually stopped going out alone. She was persuaded to use a wheelchair for most outings but could get in and out of the car. So when the last fall happened I was worried but confident that after a few days respite and help from physios and OTs on the rapid response team she would be back to 'normal'.

It never happened. They tried everything but she could never do more than shuffle forward holding into her walker and with two carers supporting her. It was as if she had forgotten how to stand up and balance. She kept saying she was too frightened. She moved to a permanent care home near us and for a while they kept trying to get her back on her feet but she was effectively wheelchair dependent from then on. The saddest thing was that this made it impossible to take her out. The home was lovely but in a country setting, she couldn't safely transfer from wheelchair to car or from wheelchair to toilet.

However, until the last few weeks of her life when she became too frail and had a minor pressure sore she did not stay in bed. She had to be hoisted but was put into her wheelchair during the daytime.

So my conclusion is that for some patients physio is just not going to work.

 

[Pete R]

……..and presumably some criteria to determine that physio is not possible - does anyone have any idea what these criteria are?

I do not know of any criteria unfortunately but I do know you should not just take the word of the physio as gospel.
My Mom was walking with a frame after breaking her pelvis. All going well till she burst a stomach ulcer and had to go back into hospital. Had a UTI for 5 weeks and during that time the physio wrote her down as having refused. I tried to point out that was probably because she was trying to hide from the monsters climbing up the walls but they refused to try again even when UTI free. Mom moved to a community hospital and physio there refused to go against the other. Mom was granted reablement and yet another physio refused even though I got Mom to walk around her room with the frame.
Eventually with the help of a few excellent carers at the NH Mom progressed and was able to at least get to the toilet. Unfortunately other problems have now stopped that but with help she can still transfer with a frame and has never been hoisted.
In hindsight I should have paid for a private physio to come in to offer a different opinion. Maybe something for you to consider?

I wish your Mother well ☺

 

[Early riser]

Oh MeganCat you could have been describing my husband, their symptoms and their journeys are so similar.
After 8 weeks in hospital, still unable to stand, he was transferred to a nursing home.

Everyday, using a stand-aid, he is transferred from bed to wheelchair for breakfast in the dining room, then to easy chair in the lounge, this is repeated for lunch and tea.
What I'm trying to say is just because he can't walk doesn't mean he's confined to bed.

The aggression does occur when they are frightened, usually during any form of body contact. They need gentle coaxing as you would with a child. I'm so lucky that he has marvellous carers who understand the sad world of dementia.

We are now almost 3 years on and this is our life, a sad one but still a life and I'm forever grateful for the time I'm able to sit with my husband, hold his hand and tell him how much I love him.

My heart goes out to you because I know what a heart breaking time this is for you.
With Best Wishes.

 

[MeganCat]

Thank you for your replies, mum was eating well when I visited today, she's talking a fair bit but the words are out of order and some are made up, so I can't really work out what she is trying to say often. Previously she would mix words that were in the same 'family' brother, daughter etc - I could hazard a guess. She seems content in herself which is good. I tackled the nurse on duty today and lack of engagement in physio is a reason they stop.

Witzend I think you are right my mum probably would get upset if she was physically moved by the physios - one carer told me she said she loved her in the morning then slapped her arm later on in the day. No my colleague has had no direct experience of dementia - and I wouldn't wish it on her! Or any of us.

Thanks Canary - I have no previous experience of physios with older people, although I have seen them on the ward with other patients - I will try to question them directly next time I see them.

Pickles you have given me hope that her life will not be confined to the bedroom, I will certainly discuss that when she returns to the care home - I've seen other residents moved about but wasn't sure how mobile/immobile they were. Getting her into the garden would be nice.

Pete - I will push again with the physios on the ward and ask about a private opinion - I have a fab physio myself but he does sport injuries but perhaps he could recommend someone if they don't do that themselves.

Early riser - I haven't heard of a stand aid. I'll ask the home about that too. It's exhausting as well as heart breaking, I can't get my head around how quickly things can change - although her decline from living alone to going into psych assessment hospital 18 months ago was in retrospect equally quick and devastating to her functioning. She has mixed AZ and VascD.

 

[annie h]

Megancat,
In my experience their saying it's not worth giving physio means they aren't prepared to offer the extra support someone with relatively severe cognitive deficit needs. My mum was refused rehab ("no point, she can't follow the instructions because of her dementia"), but once I was able to get her out of hospital I found a fantastic private physio who was willing to take her on (actually not that easy - a lot of private physios are in it for lucrative sports or work-related injuries), and it was very successful. She needed longer than normal sessions and if she wasn't in the mood we had to take a hit on the cost of the wasted session, but with appropriate support, some extra time and understanding she was mobilised, where the NHS physios has said it wasn't going to happen. If you do believe your mum still has the capacity to mobilise she deserves the opportunity, and if you don't attempt it you might always wonder if you'd let her down. You will probably know yourself when it is no longer worth it (as was obvious to me after my mother's final accident), whether that's now or if there's some further event in the future.

I'd be sceptical of people in hospital saying that her behaviour is unpredictable. My experience of hospital on multiple occasions was that this sort of thing was often a direct consequence of the poor knowledge and understanding of dealing with dementia on the part of most of the hospital staff. Hospitals aren't good places for dementia - it was only when I got my mum out of hospital that it became possible to make a proper assessment of her potential. In the words of the nursing home manager at the home she went to "everything the hospital said about her was rubbish".

 

[Pickles53]

Pickles you have given me hope that her life will not be confined to the bedroom, I will certainly discuss that when she returns to the care home - I've seen other residents moved about but wasn't sure how mobile/immobile they were. Getting her into the garden would be nice.

P

We did use to take mum into the gardens when the weather was good and her home had several different little sitting rooms where we could be alone with her as a family. She did have her own wheelchair which we had bought previously; after she died we donated it to the care home. Mum didn't spend any time in hospital, but I do believe the physios and OTs did their absolute best to try and get her mobile again in the care home setting. They were incredibly patient and gentle with her. She just couldn't bring herself to attempt it; she was just too scared.

 

[Pete R]

When people stop walking do they just remain in bed?

I missed this bit when replying earlier........Mom is out of bed every day. She does like her own company and sits in her chair in her room. When she does want to socialise she is put in her wheelchair for transfer and then into a chair in the lounge. Same again when going to the dining room/toilet.

Not so much now because of the cold but when possible I take her outside into the garden. It was almost every day during September (She still likes a fag).

For hospital appointments I still take her in the car.

So no, stopping walking does not have to mean lying in bed all day.

 

[MeganCat]

Thanks a lot all
I really do appreciate your support and experience

 

[BR_ANA]

My mom stopped walking due to a broken femur.

My mom is on a hospital bed but everyday she is on TV room (she likes people and TV

Even when she was on hospital, staff put her on chair

 

[MeganCat]

A little update - mums out of hospital (no physio) and is back in the care home - they've had her up in a wheel chair in the lounge and dining room and she was beginning to push herself back in the chair with her legs. Yesterday she walked with a carer either side to the lounge from her bedroom . Hopefully she will continue to make progress and regain some independent mobility, but amazing in such a short timescale. I'm very grateful to the patient carers and nurses.

 

[BR_ANA]

What a great news!

If she can walk with help, maybe she can do it with a walker (and help).

 

[rhapsody]

With the right encouragement you would be surprised how things can change for a person with alzheimers. Unfortunately this sort of help in a care home setting is not always available. Training sometimes is not enough. Some carers are more intuitive than others and look deeper into a person.I have seen some amazing things. Firstly the person with alzheimers must feel safe (so important). They mustn't be 'rushed', allowing them to do things in their own time,gentle encouragement,treating them as you would like to be treated,encouraging them to do as much for themselves as possible.(i have so often seen the simplest things being taken away) e.g. encouragement to use their toothbrush. If taken away they easily forget how to do this.Mobility is no different. When working as carer in an E.M.I. home i have seen someone who had alzheimers then went on to have a stroke ,who found mobility pretty tough afterwards. Myself and another carer who i have a lot of respect for( as he was as passionate as myself about good care) Took the time to help this person with his mobility. Lots of encouragement and praise were needed .He looked so proud of himself when able to take some steps. We felt we were fighting a losing battle though,as the good we did was so easily taken away by some other carers,who would rush him,culminating in his body going rigid. (a rebellion response,i guess) This also happened to another resident of ours who had lost complete confidence in walking after becoming ill. She would walk well for myself and my colleague as we spent the time encouraging and building her confidence,then the next day we would be back to square one. We were both 'night staff' and saw how she was 'rushed' by the day staff. Not always their fault, as quite often they were short staffed,but sometimes there was no need to rush the resident at all. Lack of (on floor) training i feel by the right person was to do with this. There are many good carers who just need that little push to see deeper.So never give up. Ask the carers to help with your mums mobility,be positive and you will be surprised what you and your mum can achieve together. A supporting hand rail in a corridor or hallway is a very good starting point. That way the person will feel safe with someone supporting on one side whilst they can hold on to the bar. I so hope things improve for you and your mum. God bless you both.