Dad now in nursing home but struggling

[CareHome]

Dad (91) has now been in his nursing home since Monday, initially for respite with a view to longer term. Mum (89) is struggling to care for him at home - dad uses a frame to walk due to Parkinson's and can fall/collapse.

The nursing home assessed him and have put him on their dementia wing (he's previously been assessed as not having dementia but this was a couple of years ago). Mum has visited today and is unhappy as dad is just laying in bed (at home the carers got him up and downstairs to have breakfast, then in evening they put him to bed around 8pm).

The nursing home have said they can't force him to go to the communal areas but without this routine the fear is that dad's mental health will decline rapidly.
Dad is also unhappy at loss of autonomy. The care home don't want him going to the toilet himself due to risk of falls, but dad wants to try and use his frame like he did at home. They have put the sides up on his bed to prevent him and he hates it.

Can anyone help me understand the expectations - are we asking too much from the care home? Or should I press them on the above?

The first thing I’d be asking if they are using bed rails is: have they done a DoLS assessment - Deprivation of Liberty Safeguards? I’d bet they haven’t. He should be able to get out of bed (even if it’s unsafe) if he wants, until a DoLS have been done.

Unfortunately, many care homes will leave residents in bed because it’s easier for staff.

Sorry your mum and dad are going through this.

You need to discuss this with them and hopefully get a better understanding of what is happening here. It's not one to one care so of course there has to be safeguards made against falls etc. Let's be honest you wouldn't be happy with that would you? Sadly if he says no to certain things then they do have to respect that. I'm sure it's hard for your Mum to see him like this. Schedule a chat with them.

Putting the bed rails up is also a form of restraint. If he remains in bed he’s likely to decondition and may experience muscle wastage which will then lean to loss of mobility….which will make it even more difficult for your mum and carers to manage his needs at home. Is there another care home he can go to instead?

The residential home my relative was in, (she fell out of bed more than once, remarkably no serious injuries) insisted they couldn’t use sides on a hospital type bed because they were dangerous unless someone else/carer present at all times. Risk of getting stuck in the bars I imagine? They put a mattress type thing on the floor to cushion the fall.

He's only been there a few days Op, so there’s a good chance he will settle and they can get him moving on his frame. Talk to them and see what they say, you can always look at other homes if this one isn’t suiting him.

Thanks @Anewuser . From what I've just read the care home can grant an emergency 7 day DOLS order and keep extending that until a normal DOLS is done.

At home he wanted to stay in bed but mum would nag him and he'd get up (after the carer had tried to get him ready for the day).
His muscles are already wasted as he refused to do any physio at home. He can barely stand and mum was having to hoist him by the back of his trousers on occasion when he said he felt unsteady on his feet when he wanted to go to the toilet.
There are other care homes which I'll look into, but I just want to get a feel of what to expect. If the staff ask him if he wants to go in the lounge and he's suffering depression and says no (he doesn't particularly want to be there and is resentful) then he'll stay in bed all the time. He needs cajoling for his own mental health - but would they do this?

I do think it’s a bit early to decide this isn’t going to work. He’s not been there a week yet - he will be upset and tired from the change in routine, and won’t have got to know anyone yet. People who build a relationship with him will be more likely to be successful in getting him up. Though getting up does sound risky even at home.

It also sounds as if you all need to have a frank discussion about what kinds of risks he wants to take and what that means. Of course a fall could kill him but he might not care - he might care more about ending up in hospital.

They should. Of course they cannot 'force' him to do anything, but they should be strongly encouraging him. But as others have said, some care homes will take the easy route and leave him in bed.

My mother was in a care home for several years and was extremely frail and virtually immobile in the last two years (dementia). But every single day the carers got her out of bed and into a chair in the lounge during the day. She moaned a bit about being moved (she had to be hoisted, moved to a wheelchair, then to a lounge chair) but once there she was happy.

You need to emphasise to the manager that you think it is in his best interests to be moved to the lounge. Then they will either have to do it, or give you a good reason why not. If you don't agree with their reasoning, consider moving him to another care home.

Whilst they shouldn’t keep extending the urgent application, I suspect that’s what they will do indefinitely.

Do you happen to have Power of Attorney?

Without that, unfortunately there isn’t much you can do. They will make a best interest decision which will likely say he can stay in bed.

You would hope carers would encourage him to get up but a lot depends on the ratio of carers to residents and quality of staff.

They cannot force someone to do what they adamantly do not want to do. They can cajole, but only so much. They are not going to keep doing it if it is making him miserable, or angry.
MIL is in a nursing home and is bedbound. She will never get out of bed again. She has vascular dementia (plus alzheimers and frontal lobe shrinkage) which has reached her core muscles. She can be hoisted out of bed to a chair, but can no longer support herself, or adjust herself.

So if people are thinking he has dementia, it is important to know which type. No amount of physio, or getting him out of bed can stop the downward muscle function of vascular dementia.

Is there any reason he is in a nursing home rather than a care home? I'm guessing it is not intended he will go home after respite is complete?
If you are unhappy with his care, you can ask for him to be moved. My DH did with his mum, but found nursing homes to be very similar in their care provision.

The sad part of these situations and I say this kindly is that the family try to push for a situation which they feel will benefit the patient. It's understandable but at the end of the day this is a very poorly man. I'm not saying that you stick him in a bed and leave him to it but sometimes these situations evolve and we find it difficult to accept. @CareHomeyou say he didn't have dementia 2 years ago. A week is a long time in a patient with dementia. As someone else said let him find his feet in this new scenario. Moving him from home to home is not going to alter the outcome. I'm sorry .

In England and Wales (sorry I don’t know the position in Scotland or NI) Bed rails are should ONLY be used to prevent falls from bed in people with mental capacity to agree to this safety measure and who know how to and can execute getting out of bed safely (getting rails lowered by staff or lowering themself) and can retain this. The purpose should never be restraint, though the effect may be.
The Home need to assess whether you Dad has mental capacity to make decisions about the care and support he receives. If he wants to go to the toilet on his own and understands that he could fall and die or be seriously injured, and accepts the level of likelihood as risk assessed, it would be unlawful to insist he has help. (Whether a Care Home is willing to look after a person who wants to live their life taking really high risks is another matter, residents falling and dying is difficult for care homes for all sorts of reasons).
If your Dad does not have capacity to make the decision about what help and support to have, and the Home feel it is in his Best Interests to have care and support that restricts his liberty such as someone with him all the time when he goes to the toilet) the Home must get this legally “authorised” by applying to the Local Authority for an assessment for a Deprivation of Liberty Safeguards order. Its really serious to limit a persons freedom and autonomy, even if it seems like common sense.
If your Dad doesn’t want to sit in communal areas this should not be forced, but I’d be asking what the care plan is around promoting inclusion and activity and daily routine- encouraging and motivating him to spend some time sitting up out of bed and in the lounge is a different intervention to just leaving him alone.
Ask to meet with the Registered Manager to raise these things. Was a Mental Capacity Assessment and Best Interest decision making process carried out by a Social Worker prior to his admission? I’m really sorry if he can’t go home as it sounds as if he really dislikes the Care Home. Was his behaviour very difficult for your Mum? Could extra support or equipment be put in to reduce demands on her? I can see that the risk of falls made it very difficult at home, the falls risk doesn’t always go down in a Care Home, it may actually increase risk and it sounds like he hates the risk management of being accompanied.
Finally if a DoLS authorisation is granted and your Dad objects to any of the restrictions, his Representative must arrange for a challenge to be heard in the Court of Protection.
Good luck I hope you can find a way through.

Yes my sister, brother and I all have LPOA.
I’m making a note of what MNetters are suggesting and going from there. A lot of it is managing my mum, dad, and siblings expectations. I don’t feel it’s unreasonable for the carers to encourage/cajole my dad to get up (as he used to do every day at home) rather than lie in bed all day so I’ll ask them to do that.

That’s why I posted here, to find out what is reasonable or not.
At home dad was getting up and downstairs for breakfast with either a carer or mums support. He’d be in his riser recliner in the living room watching TV or reading the newspaper but mostly napped. He’d take himself to the loo (using his frame) but would need help from mum as didn’t always make it in time. He’d go in the dining room for his meals.
We expected that same routine in the home as they took all this info down during his assessment. Also mum (and brother) were around him during the day, whereas if he just stays in bed he doesn’t get that chance to interact and is becoming withdrawn. When the carers came in to get him ready for me to take out in his wheelchair, he had a joke and a laugh with them. He engaged well in conversation about his profession and his hobby with another carer who does the entertainment. Then the next day when mum visits she says he doesn’t look right and is just laying in bed. Were told he’s eating and sleeping well.
We’re visiting later so will see what a weekend looks like in the home, but this thread is helping me organise my thoughts on next steps.

He has Parkinson’s, muscle wastage, can barely stand but wants to toilet himself despite sometimes being unsteady on his feet. I imagine this is why the guard rails are up on his bed - to prevent him getting up and having a fall. When my mum with dementia was in hospital they had the guard rails up and had to have a nurse outside her room round the clock (they moved part of the nurses station with a PC there) to keep an eye on her to stop her getting up. If he got up while no one was with him and fell the family would say the care home was negligent. So they are protecting him.

Should they force him to go to the lounge? He’s 91 with Parkinson’s and dementia - if he wants to do his own thing while he gets used to being in a nursing home which is a massive change why shouldn’t he be allowed to decide that? If there is an event at the home one day next week then he might decide to check it out but if he enjoys the peace and quiet of his room then he should be allowed to enjoy that. In reality that’s more similar to being at home with his wife than sitting in a room with 15 strangers.

I’m very surprised they’re using bed rails, especially when he doesn’t like it. My df had dementia and he ended up with a 24/7 1:1 because they couldn’t keep him safe in bed otherwise (he was a fall risk standing on his own)- they refused point blank to use bed rails even when he’d got past the point of trying to climb them (which admittedly would have been a problem initially) because it’s considered a form of restraint.

Could it be that (understandably) your mum is struggling with having to let someone else take over the care of her DH and that is why she says he ‘doesn’t look right’? Does he have a tv in his room to watch so he can replicate his home routine and he gets mental stimulation that way?

in my mum’s care home the bedbound residents are in the ground floor so see staff and other people passing their open doors and interacting with them as they go by. My mum had a phase of popping in to chat to each of them but I don’t think she does any more.

Was a Mental Capacity Assessment and Best Interest decision making process carried out by a Social Worker prior to his admission?
No as this respite placement was done quickly by myself at mums request. The home came and did their own assessment and said he would go on their dementia ward (I was at work when they did the assessment).
My sister and I have been trying to engage Adult SS for the last month about his care package at home (some days no carers turned up at all) but we can’t seem to actually get hold of anyone! It’s been very frustrating. However if Adult SS came and assessed him now in the care home they’d see a different man mentally than a week ago according to my mum.

That’s a reasonable point about mum. She is showing signs of her own cognitive decline but we’re unsure if that was also due to the stress of looking after dad. The respite was supposed to give us all some breathing space but instead it’s brought a different set of problems to manage.

Yes he has his own smart TV. It’s a lovely room - when I viewed the home it felt lovely and relaxed with carers popping in and out of rooms checking on the residents.

It's very hard isn't it? I don't think that, even with the best will in the world, a nursing home is going to be able to replicate the feel of a family home and that sense of familiarity and casual interaction. The whole set-up is different, including the way the rooms are laid out and the carers, even at their best, are not going to be as devoted to him as your mum is. That's the trade off: he's safer in many ways, and your mum has been relieved of a major burden, but there are some losses as well.

MIL went into a nursing home aged 82 with advanced Parkinson's and dementia. She was pretty much immobile by this point, and doubly incontinent. She could mumble some phrases, and she did seem to recognise people. Nonetheless, the carers would get her up, washed and dressed and sitting in her chair every day (unless she had a cold / gastro / chest infection etc). In the early days, she'd be taken to the lounge, but she never interacted with any other residents - she was well past that stage by then. She had visitors 4-5 times a week, who spoke to her, and a TV (that I don't believe she ever watched, it was just on out of habit and usually showing cartoons when we came in) and that was about it. The atmosphere in the home was usually quite lively - her door was propped open and carers popping in regularly with cup of tea, meds, cup of tea etc.

You will probably never know if the big change to a nursing home has accelerated his decline - or if it was already happening / going to happen anyway. That's the thing with this disease - you get used to things being a certain level, then all of a sudden it runs away and you see the person deteriorate quickly, until it plateaus again. It's a challenge to recalibrate your expectations. I remember FIL was always the last to accept that a further decline had happened, because he just didn't want it to be true.

I think the thing is OP that most of us want to see people in care that we care about in a setting/ condition and routine that we ourselves feel familiar and comfortable with mentally - even if unwell . And the reality is often not this at all towards the end of life . The person themselves may be quite ok with staying in bed and choosing that but it doesn’t ’feel Right’ to the rest of us . Unless it’s actually neglect and they aren’t given a choice then I think at this stage I think you need to be directed by what the person themselves seems to want and are they comfortable and safe , you cannot force things .

Has he been assessed as lacking capacity to understand decisions?

This is very true. I don’t think my MIL even noticed whether she was in bed / in a chair, in clothes or PJs. She certainly couldn’t choose one or the other. It was much more important for her visitors / family to see clear evidence that she was being actively ‘cared for’ and some semblance of what they saw as normality being preserved.

My head used to reel from the cognitive dissonance of it all. We’d be sitting around MIL, chatting politely. Her only interaction would be some nonsense words or phrases. She was so bent forward with osteoporosis that she couldn’t see anyone. She would be given some tea from a sippy cup and spoon-fed some cake. Then wheeled back to her room and left in front of some loud daytime tv show. And FIL would talk about how ‘bright and chatty’ she had been and how she’d really enjoyed seeing us all and that cake was her favourite, and how it would be time for her to eat her dinner soon (liquidised lasagne in a sippy cup). He wanted so much for things to be ‘normal’ for her - and for him.

If you are paying privately for respite, could you not increase the number of care calls at home to 4 so that his toileting visits can all be supervised and any accidents can be managed by carers and not your mum.
How did he manage night time toileting at home as that is often what makes a situation unmanageable?

Having just come out of the other side of this after losing a beautiful family member this has been our experience. As the Parkinson’s progresses there becomes an inevitability as mobility drops and other issues come to the fore UTIs, sepsis, serious falls further immobilising the person.

My husbands beautiful mothers suffered longer than she would have because a family member could not come to terms with the situation that was emerging and so endless additional treatments were sought, all done with the best of intention but with absolutely no chance of improving the situation and there was enormous suffering involved with the treatments.

I think it is worth persevering with the care home but start expressing your wishes about him getting out of bed etc more. I think the toilet visits might be a no no as things progress but that will be dependent on where your father currently is.

The impact of a very minor fall on this type of illness cannot be overstated. One fairly innocuous fall is what precipitating a chain of events that led to endless cases of sepsis and death for my mother in law over a relatively short space of time.

In the end the balance of fluids to offset the dehydration effects of dyskinesia leading to UTIs, a really consistent routine for giving medication and eating and good positive social interactions even if from a chair are where I would be focussed if we had our time back.