My continually active mum is now unable to walk. I could do with some advice

[JemJ]

My mum was diagnosed with dementia in 2006. She’s always been really active and good on her feet. She’s been in a care home for 7 years now and when I visit her she is always walking up and down the corridor, to the point where the concern was that she was walking herself into exhaustion. I like taking her out for trips but sometimes I would just get her to sit down and relax to give her legs a break.

The problem now is that she caught covid and was isolated for 14 days in her room. She had no symptoms at all which I’m grateful for. I presumed that she was doing some sort of exercise daily but it turned out that she was just stuck in bed. Now she is in a wheelchair and has lost the use of her legs. The nurse at the care home said that it’s just the dementia, but I’m struggling with this. I also visited her (she was behind a screen) yesterday and she tried to get out of her wheelchair and then started crying. I asked the carer if she was helped up when she is like this and if two people help her to walk about a bit, she said no. I asked if she was getting any exercise or physio, as I’m concerned she will just waste away. She said no. One of the nurses said that physio wasn’t available.

My questions are:
1. Should my mum have had an exercise plan in place when she was isolated for 14 days?
2. If she wants to get out of the wheel chair at any time, what should the Carers be doing to facilitate this?
3. I’m worried that she has no exercise at all and this isn’t good for her. What type of exercise should someone who is unable to weight bear have?
4. Would physio help her, not necessarily to walk again, but with circulation/wellbeing etc...

If someone had been in a similar situation or if anyone has any advice, this would be much appreciated

Thanks

Jem

 

[Pacucho]

Dear Jem,
Sorry to read your message about your mum.
I was in a similar situation with my mum when she was in hospital after having a severe stroke (as well as her dementia). They gave up on her and if it was not for my perseverance - which included both keeping mum active in her chair as well as eventually getting a physio involved - I suspect she would not have stood again never mind walk. I am afraid to say I do not agree with the nurse at the care home who sought to blame your mum's dementia for now being unable to walk.
Your problem is not having direct access to your mum - whereby you could begin to make a difference - makes things very difficult. I would continue to speak to the manager and staff of the care home, be persistent, and see if you can get direct access to your mum.
Finally, I also have to say there is no guarantee that your mum can get back to the same physical level as she did before, but any progress she makes will help.
Hope this helps in some way,
Paco

 

[Linbrusco]

My Mum had been in a Dementia CareHome 2.5yrs.
Sep 18, was still walking.
Oct 18, they observed one day she was very sleepy.
Thinking she was coming down with something or a UTI, they observed for 2 days all her vital signs. She wouldnt weight bare or walk. UTI test was negative.
They would have to wake her to eat and drink, but she would fall asleep mid way and then risk of choking.
She was also checked for signs of a stroke but there were none, unless we wanted her to go to hospital for a CT scan. We said No.
By Nov 18, she started to rally a bit, and they managed to get her up walking a little bit using a standing hoist and a walker with rails, but she still wasnt independant. Still sleeping a lot.
By Dec 18, she was back to how she was a month prior, and by Jan 19, moved into Hospital Level of care.
Mum has never walked since then. Totally immobile, totally incontinent. Totally dependable on carers or us. Stopped speaking also apart from the odd No or Yeah.

 

[lemonbalm]

My questions are:
1. Should my mum have had an exercise plan in place when she was isolated for 14 days?
2. If she wants to get out of the wheel chair at any time, what should the Carers be doing to facilitate this?
3. I’m worried that she has no exercise at all and this isn’t good for her. What type of exercise should someone who is unable to weight bear have?
4. Would physio help her, not necessarily to walk again, but with circulation/wellbeing etc..

I feel very sad for you reading your post. I don't have definite answers but would think:

1. In an ideal world, and one where things were more normal, perhaps yes but I doubt this happens right now. I imagine it is likely that the illness has also affected your mum's mobility and strength , and would hope that she can recover at least some of that
2. My mum is occasionally mobile. The carers tell me that they encourage her to use her walker where possible but will use a wheelchair if she is very unstable or seems in pain. I would guess that your mum's carers are concerned about falls.
3. There are simple chair exercises available on-line and on DVD's. I would ask the care home manager to make these available for those residents who are able to partake as a group with a carer assisting. It is a cheap and easy way to entertain them and to also encourage mobility.
4. Physio may help but I know it doesn't work for my mum, who can't follow instructions. I don't think a physio would be able to enter the care home at present. Is there a visiting nurse who could perhaps suggest some treatment to help? It might be worth asking for blood and urine tests too, just in case there is another physical cause for the continuing weakness.

I hope that your mum recovers from this set back and regains at least some of her mobility.

Best wishes

 

[vannesser]

My mum was diagnosed with dementia in 2006. She’s always been really active and good on her feet. She’s been in a care home for 7 years now and when I visit her she is always walking up and down the corridor, to the point where the concern was that she was walking herself into exhaustion. I like taking her out for trips but sometimes I would just get her to sit down and relax to give her legs a break.

The problem now is that she caught covid and was isolated for 14 days in her room. She had no symptoms at all which I’m grateful for. I presumed that she was doing some sort of exercise daily but it turned out that she was just stuck in bed. Now she is in a wheelchair and has lost the use of her legs. The nurse at the care home said that it’s just the dementia, but I’m struggling with this. I also visited her (she was behind a screen) yesterday and she tried to get out of her wheelchair and then started crying. I asked the carer if she was helped up when she is like this and if two people help her to walk about a bit, she said no. I asked if she was getting any exercise or physio, as I’m concerned she will just waste away. She said no. One of the nurses said that physio wasn’t available.

My questions are:
1. Should my mum have had an exercise plan in place when she was isolated for 14 days?
2. If she wants to get out of the wheel chair at any time, what should the Carers be doing to facilitate this?
3. I’m worried that she has no exercise at all and this isn’t good for her. What type of exercise should someone who is unable to weight bear have?
4. Would physio help her, not necessarily to walk again, but with circulation/wellbeing etc...

If someone had been in a similar situation or if anyone has any advice, this would be much appreciated

Thanks

Jem

My ho as vascale for 4/half years
Last January 2019.he was admired to hospital with a chest infection .when he came home had a more trouble walking needed a diner frame and wheel chair.this year he was in hospital again with chest infection.witch went with in a day told he was going to be discharged as when he was sent to hospital he didn't stand up at all over 3 days in hospital thay dident no this
Out come was he came home a week later needing cares 4 times a day and hospital bed .as of today he is unable to stand or push him self up to sit or turn himself on bed and will never be able to.and all I have ever been told is that the demen it can weaken walking and balanc in some people he is 77 I am 61.
I hope your mum gets some sort of help soon .my ho keeps bending his legs and eases legs up and down when he been hoisted to chair

 

[JemJ]

Dear Jem,
Sorry to read your message about your mum.
I was in a similar situation with my mum when she was in hospital after having a severe stroke (as well as her dementia). They gave up on her and if it was not for my perseverance - which included both keeping mum active in her chair as well as eventually getting a physio involved - I suspect she would not have stood again never mind walk. I am afraid to say I do not agree with the nurse at the care home who sought to blame your mum's dementia for now being unable to walk.
Your problem is not having direct access to your mum - whereby you could begin to make a difference - makes things very difficult. I would continue to speak to the manager and staff of the care home, be persistent, and see if you can get direct access to your mum.
Finally, I also have to say there is no guarantee that your mum can get back to the same physical level as she did before, but any progress she makes will help.
Hope this helps in some way,
Paco

Hi Paco

Thank you so much for replying to my post. It’s interesting to hear your experience with this and you are right, it is more difficult due to the lack of access. I have an appointment this week with the manager of the home so hopefully some joy will come out of that. Thanks again

 

[JemJ]

Dear Jem,
Sorry to read your message about your mum.
I was in a similar situation with my mum when she was in hospital after having a severe stroke (as well as her dementia). They gave up on her and if it was not for my perseverance - which included both keeping mum active in her chair as well as eventually getting a physio involved - I suspect she would not have stood again never mind walk. I am afraid to say I do not agree with the nurse at the care home who sought to blame your mum's dementia for now being unable to walk.
Your problem is not having direct access to your mum - whereby you could begin to make a difference - makes things very difficult. I would continue to speak to the manager and staff of the care home, be persistent, and see if you can get direct access to your mum.
Finally, I also have to say there is no guarantee that your mum can get back to the same physical level as she did before, but any progress she makes will help.
Hope this helps in some way,
Paco

Hi Paco

Thank you so much for replying to my post. It’s interesting to hear your experience with this and you are right, it is more difficult due to the lack of access. I have an appointment this week with the manager of the home so hopefully some joy will come out of that. Thanks again

My ho as vascale for 4/half years
Last January 2019.he was admired to hospital with a chest infection .when he came home had a more trouble walking needed a diner frame and wheel chair.this year he was in hospital again with chest infection.witch went with in a day told he was going to be discharged as when he was sent to hospital he didn't stand up at all over 3 days in hospital thay dident no this
Out come was he came home a week later needing cares 4 times a day and hospital bed .as of today he is unable to stand or push him self up to sit or turn himself on bed and will never be able to.and all I have ever been told is that the demen it can weaken walking and balanc in some people he is 77 I am 61.
I hope your mum gets some sort of help soon .my ho keeps bending his legs and eases legs up and down when he been hoisted to chair

thank you for your reply, it’s much appreciated and it’s good to hear about your experience. I have a meeting with the manager of the home this week

 

[Weasell]

The failure to access the correct medical care for the person you support is abuse.
In my opinion she needs to see a physio.
It doesn’t matter if they make a difference or have anything useful to add.
She needs to see a physio.

 

[Weasell]

Also keeping someone in a wheelchair with the seatbelt in effect causing a restraint, wanders into DOLS law.

 

[JemJ]

I feel very sad for you reading your post. I don't have definite answers but would think:

1. In an ideal world, and one where things were more normal, perhaps yes but I doubt this happens right now. I imagine it is likely that the illness has also affected your mum's mobility and strength , and would hope that she can recover at least some of that
2. My mum is occasionally mobile. The carers tell me that they encourage her to use her walker where possible but will use a wheelchair if she is very unstable or seems in pain. I would guess that your mum's carers are concerned about falls.
3. There are simple chair exercises available on-line and on DVD's. I would ask the care home manager to make these available for those residents who are able to partake as a group with a carer assisting. It is a cheap and easy way to entertain them and to also encourage mobility.
4. Physio may help but I know it doesn't work for my mum, who can't follow instructions. I don't think a physio would be able to enter the care home at present. Is there a visiting nurse who could perhaps suggest some treatment to help? It might be worth asking for blood and urine tests too, just in case there is another physical cause for the continuing weakness.

I hope that your mum recovers from this set back and regains at least some of her mobility.

Best wishes

Thank you Lemonbalm, your advice has definitely made me feel better. I’ve got a meeting with the manager on Friday and have requested that the Dr ring me up to have a chat. I sometimes feel that if our loved ones didn’t have us to look after them they would just be left to deteriorate. Thanks again

 

[Palerider]

My mum was diagnosed with dementia in 2006. She’s always been really active and good on her feet. She’s been in a care home for 7 years now and when I visit her she is always walking up and down the corridor, to the point where the concern was that she was walking herself into exhaustion. I like taking her out for trips but sometimes I would just get her to sit down and relax to give her legs a break.

The problem now is that she caught covid and was isolated for 14 days in her room. She had no symptoms at all which I’m grateful for. I presumed that she was doing some sort of exercise daily but it turned out that she was just stuck in bed. Now she is in a wheelchair and has lost the use of her legs. The nurse at the care home said that it’s just the dementia, but I’m struggling with this. I also visited her (she was behind a screen) yesterday and she tried to get out of her wheelchair and then started crying. I asked the carer if she was helped up when she is like this and if two people help her to walk about a bit, she said no. I asked if she was getting any exercise or physio, as I’m concerned she will just waste away. She said no. One of the nurses said that physio wasn’t available.

My questions are:
1. Should my mum have had an exercise plan in place when she was isolated for 14 days?
2. If she wants to get out of the wheel chair at any time, what should the Carers be doing to facilitate this?
3. I’m worried that she has no exercise at all and this isn’t good for her. What type of exercise should someone who is unable to weight bear have?
4. Would physio help her, not necessarily to walk again, but with circulation/wellbeing etc...

If someone had been in a similar situation or if anyone has any advice, this would be much appreciated

Thanks

Jem

I think its all too easy to blame 'the dementia' . Its hardly surprising that your mum is now finding it diffciult to mobilise after being left for two weeks with no physio input or at the very least someone doing passive limb movements with her. Although lying in bed with no symptoms begs the question 'what on earth...?' As always once the damage is done its hard to undo, but no one will know unless a period of physio is trialled - so the answer should have been 'we don't know but we could try physio'. It may be that it is the dementia but there is only one to find out.