Exercise in care home

[Clarrisa]

Hello, I would like to ask if anyone has any suggestions of encouraging a care home to do more with the residents. This is a care home which has a good CQC report and costs £2k per week (London). There are activities organised each day but whenever I visit, on most days, most of the residents are asleep in front of the TV. I would like my dear mum to be encouraged to do daily exercises (only timetabled once a week) as I have noticed her walking is more pigeon-stepped and shuffled.

(A year ago she was at home, independent, shopping, cooking, good conversations, swimming twice a week - a bit low as my dad passed away a year before - but she had no evidence of dementia; she managed her finances, remembered appointments, never got lost etc, etc).

(The shock of the diagnosis of moderate / severe and the deterioration in her cognition have been so rapid and heartbreaking)

Perhaps I am expecting too much. I just feel that there is more that the home can do and given that her life savings are paying for this 'service' is that too much to ask?

Any good practice or ideas of how much exercise can help maintain mobility function would be really appreciated.

Thank you! x

 

[Sarasa]

Hi @clarisa , my mum was in an expensive London care home too. I’d chosen it because it won prizes for its activities, and they were amazing. However, though my mum was still pretty able physically and still had the ability to hold some sort of conversation that was relevant at the time, she didn’t really join in unless I was there to do things with her.
Does the home have an activities coordinator? If so chat to them about what is available. I found mum was more receptive to doing things in the morning, and I did quite a few chair exercise classes with her, that were fun as well as good at helping the residents keep up mobility.
I’m not sure though that any exercise will really help. My mum was very fit and active, and did a lot of exercise before dementia really took hold. Now she is unable to walk or follow instructions, but that is in a longer time frame than what seems to be happening with your mum.

 

[Clarrisa]

Thank you @Sarasa. Yes, they have an activities co-ordinator who has been talking about swimming, which I mentioned to her as there's dementia friendly swimming at the local swimming pool 5 minutes away, and pilates....but seems to take a long time to get anything organised ...

I am hoping that some exercise will improve my mum's walking, but, as you say, maybe not.

Thanks for your response.

 

[canary]

Hello @Clarrisa and welcome to Talking Point.

Im wondering whether you generally visit at about the same time each time you go.
The atmosphere in a care home (especially dementia home) can change terrifically depending on what time of the day you go.

Activities are generally held in the mornings when the residents are usually at their best and there is often a busy, busselly vibe. Then, after lunch the residents are mostly tired after the activities and having naps in their room or snoozing in front of the TV and the atmosphere is quiet. In the evening it can seem rather chaotic as many of the residents are sundowning. You cannot expect people with dementia to engage in activities all day, Im afraid. They need periods of quiet and relaxation or they become overstimulated, which can cause its own problems,

With regards to the exercise, Im afraid that loss of mobility is a sign of advancing dementia. That shuffling, dementia walk is absolutely typical. There isnt anything that you can do to prevent it, although obviously, doing exercises (even once a week) can help prevent muscle wastage.

 

[Clarrisa]

Hello @Clarrisa and welcome to Talking Point.

Im wondering whether you generally visit at about the same time each time you go.
The atmosphere in a care home (especially dementia home) can change terrifically depending on what time of the day you go.

Activities are generally held in the mornings when the residents are usually at their best and there is often a busy, busselly vibe. Then, after lunch the residents are mostly tired after the activities and having naps in their room or snoozing in front of the TV and the atmosphere is quiet. In the evening it can seem rather chaotic as many of the residents are sundowning. You cannot expect people with dementia to engage in activities all day, Im afraid. They need periods of quiet and relaxation or they become overstimulated, which can cause its own problems,

With regards to the exercise, Im afraid that loss of mobility is a sign of advancing dementia. That shuffling, dementia walk is absolutely typical. There isnt anything that you can do to prevent it, although obviously, doing exercises (even once a week) can help prevent muscle wastage.

Thank you @canary.

 

[doingmybest1]

Hi Clarrisa

Can only write from my experience but this was a major thing with the family before we allowed Mum to go to the final care home of choice. Mum's always been a "walker". And, because she's gone into the care home with moderate AZ, we felt it was important that she didn't feel trapped by her surroundings (although she's obviously locked in for protection) and for her to have the feeling that she could still get out of the home. Also, we want to keep her physically active for as long as possible because as a family we believe that this will help both her mental and physical well-being, particularly keeping her circulation going, heart etc as she has no physical problems.

Sarasa is right, the activity co-ordinator is the key person to talk to for your request.

Because Mum is having to fund herself at stupid amounts of money (outside London £62k per year), we made it a stipulation before she went into the care home that Mum have 30 minutes Monday to Friday 1:1 to go for a walk outside of the care home (it's surrounded by easy to walk pathways around the "Estate" which has loads of tree-lined paths and beautiful green park areas including play-parks for children which is also why we chose it).

Initially, it didn't happen because the care home were worried that it would cause problems with her "settling in" i.e. once she was out, would she go back in again easily? So to prove it wasn't an issue, my brother and I came each weekend on a Saturday and Sunday, took her out of the care home, went walkies and then took her back demonstrating to the staff that Mum would always go back to the care home without any issue/traumatic event. And also their previous activities co-ordinator left and new person came in.

I had to do quite a bit of regular emailing the manager at the care home to say "this isn't happening ... we want evidence it is ...".

Once I spoke to the new activities co-ordinator, it all fell into place beautifully but this could be because she's a fabulous young woman with a passion for caring for people, who has boundless energy despite having a family of 4 to look after and so many activities daily with over 80 people at different stages of dementia to organise events for. She's done amazing work for everyone in the home.

Even during rubbish weather Mum went out for her 1:1 walks for 30 mins. My brother and I take her for 45-60 mins walks at the weekend as there are some amazing parks near her which Mum absolutely loves, bluebell woods, buttercup fields, lake walks recently are all near her and even though she'd never visited them and were new to her, she still embraced them and loves going there. We thought if they were new, she'd experience anxiety and say "I want to go back ...". She doesn't.

As evidence of her walks, we asked for photos along with the register that she had been taken-out and by whom, we agreed the photos could be shared on the care home facebook page.

What happened within 3-4 months of Mum being on facebook for her walks? Others asked that their relatives be allowed to go on walks, and the co-ordinator has fixed-up a schedule of walks for loads of people, those walking with sticks, wheel-chair bound, in AZ at advance stages in wheel chairs and they now also take them out for regular walks around Mum's "circuit" that we take her on. It's been a huge success and it does help settle people to get out and about outside of the care home.

Mum also joins these group walks and I have pictures of her pushing other people in wheel chairs and super group photos where it's very clear that they are all enjoying getting outside.

And I've been out with Mum during a week day, because you can't always tell what goes on in a home unless you do visit during the week, and we've been walking and coming back when the activities co-ordinator and staff have been taking out the "everyone else" group out, at which point Mum says "... can I join?" because she seems to know the people and that she's part of it, and I just go with the flow - and although she's done over 5000 steps - if she's up for it, we just join in the fun.

I guess the main thing is that you ask the care home to make this something that is priority for your Mum. I think most good dementia care homes where your relatives are paying fees will give your relative 30 mins of 1:1 time during the week days if you ask for it. Obviously, each home has staffing issues, and that happened to us early doors so whilst you can complain, do it in a positive understanding way but be firm about your request.

I'm at the point where I'm going to be writing to my MP and govt about this issue with Dementia care. It's so hit and miss and the amounts of money for those who maybe there for 5-10 years is extortionate for a disease that is recognised but for which there is no know reason or cure, but for which the government refused to recognise as something needing NHS support.

It's a brain disease at the end of the day. It should be recognised. My Mum's money, built up over generations, is now dwindling fast because of the extortionate care home fees to care for her, and it means that the family money will dwindle to nothing as a result to pass on to Mum's grandchildren who are all renting and in the rental vs buying argument, being young and earning low salaries they're stuck like I was until I was in my late 50s. I think we all must write to our MPs to try and highlight this although Boris (controversional I know) did try to put something in place but that's been veto-ed by Rishi and the guys.

Do fight for your Mum with the care home but do it nicely. My brother and I divided and he was bad cop I was good cop but actually that didn't work and came back on us because they read us the riot act and wanted to stop him visiting. I've found that working with the care home and being honest - and though sometimes frustrated to the point of being out of line, they've accepted that and we've worked our way forward.

And just in case you thing that what I've done has meant that everything is rosy. Hah, when your loved one goes to a home, clothes go missing, stuff/ornaments you put in their rooms to help them adjust disappear, glasses they wear every day disappear never to return, sticks they use never do return ... all of these things just "happen" even when you label absolutely everything.

My brother and I stressed out over all of this stuff initially particularly as Mum is paying for her care thinking the care home were negligent etc. And now we're in the journey we're wiser and we've worked around all of this by duplicating Mum's glasses, sticks, checking her clothes each time we visit and buying extras, not being precious when stuff goes missing, and replacing things with new "items" that Mum loves to choose. Labels - well yes do that but yes, stuff still goes walkies.

So chose your battles wisely with the care home.

We don't care anymore about all that stuff. We did, make numerous complaints etc but now we just care about what Mum experiences in the home and how she feels and if she is anxiety ridden to the point of confusion or is she actually happily settled and talking to us as normal as she can (her AZ means she can't really string a sentence together without substituting words) and engaging in the world at that point in time in a happy way. We've learnt that Mum will always say to us before we leave "I want to come home with you ...". And we've now realised that's her way of saying - I'm okay here but I'd really like to have a normal life ... can I be with you because you are people I trust? But it's okay if you say no, because I'm okay here but although I have no idea about my being with you - I'll still ask.

Mum knows that I could never have her with me in my house. She asked us as LPAs to never put her in a home. We did the carer stuff and everything else but it was clear she needs to be in a care home.

My Mum is thriving in the care home we've chosen. Obviously with AZ Mum can't tell us that she's joining in all the activities, having fun, and each day that is keeping her brain going but we have feedback from the care home that is the case. And, we visit Mum and she's got no anxiety (like she used to have), up for everything (never was before), talking about stuff she's done (which we can't quite understand but know has happened) and she's active and keeping her brain going as much as can be done when you have AZ.

I hope this has helped. It's been very much focused on my experience.

I wish you all the best.