My mum had her stroke almost 4 months ago and after ~3 months in hospital (mostly just on a waiting list for rehab) and 1 month in rehab, they’ve said they don’t expect her to make any large improvements. It’s been decided that going to a nursing home is the only option and we are all trying to get used to the idea. Mum is 77 and before this she was completely fine and she had an active social life, so this is really sudden.
I’m trying to get an idea of what life will be like for her in a nursing home. She has the money to go to a reasonably nice place but I am worried about how much she will be able to participate in given her condition.
She has right sided paralysis and has to be hoisted from bed to chair but she can sit up in a chair for around 4 hours. She has a catheter in but apparently they are hoping to remove that before she leaves the rehab unit, but I’m not really sure how that will work. Currently she says the main reason she can’t sit in the chair longer is the catheter, we’ve talked about this to the staff but no one seems concerned about how uncomfortable it is for her. She also wears pads for faecal incontinence. Apparently sometimes she asks for and uses a bedpan but usually not. Mentally she has some cognitive issues like she will forget things and she has word finding issues, but her personality is still there, she is fully capable of having a conversation and she completely understands what is happening.
She is asking a lot about what it will be like and I am worried I have accidentally told her some things that are unrealistic. For example she said she didn’t want to be locked up in one place forever and I said I thought we would probably be able to take her out sometimes (e.g. to a park or the zoo) but then later I realised I don’t know if we will be able to do that because of her incontinence issues?
I feel quite angry at the rehab unit she has been in. When she got there they said we would have a family meeting soon to set goals and meet all her therapists and then 5 weeks later we finally had that meeting and they said it was time to discharge her because she hadn’t made enough progress. She’s had so many other issues to contend with like she was in a really bad place emotionally when she arrived, having spent weeks isolated in a room on her own while on the waiting list, and she’s had some bad stomach issues (imo probably due to the honestly disgusting hospital food - I’ve started taking dinners in for her now.) The therapy team talked a lot about how she could have improved but her mindset isn’t right and she gets anxious about falling in therapy sessions, but when I asked if changing her mindset would help they said it’s unlikely.
I feel like she didn’t get a proper chance really and perhaps things would be different if it had been managed better but I’m just trying to work out how to make the best life for her now. We will be looking into getting her private physio at the nursing home. If we thought it would help, we could afford to send her to a private rehab unit for a few weeks but I don’t know if it’s just silly to try. Perhaps it’s too late now. It would make such a difference if she was just able to manage her continence (they haven’t worked on this at all) or transfer without the hoist but I don’t know if I’m just clutching at straws when her NHS therapy team has said it’s unlikely she will make any further improvements.
Sorry this turned into a bit of a ramble, it just feels like there is no one to ask these questions to or give you an idea of what’s happening ever.
@triangledictionary it’s great that your mum has made improvements & in time it’s possible she could continue to improve.
All homes are different but the onet mother in law was in we were able to take her out for a short time. I think it’s best you talk to any home you’re considering to see what they can offer & what they will provide. I know for example if they are short staffed residents that need to be hoisted may not be got out of bed.
In relation to private rehab i would offer a word of caution…something you will definitely need to look into. My hairdresser was telling me that when her dad had a stroke they decided to put him into a private facility after he had to move from the hospital fully expecting that he could then have the care package that had been agreed when he returned home. If turned out that as soon as he went into private place the care package was taken away. I don’t know if this is the case everywhere and may depend on many factors but just wanted to mention it so you don’t get caught out. If she’ll be paying for her own care it might be irrelevant.
There are many good homes out there. Research is key to ensure you get the right place for your mum.
Wishing you lots of luck.
Hi Ann, yeah this is one of the reasons I didn’t think more seriously about putting her into private rehab at first - because we were told to exhaust all of the NHS options first because otherwise they wouldn’t take her back. However at this point she is not going to be eligible for any NHS therapies apparently so I don’t think it will matter. She will get some funding (FNC) towards her nursing care and an attendance allowance which I didn’t think would be affected but I will definitely check, thank you!
Hi, sorry to hear of the situation you and your family are in. Although in different circumstances, my mum had Alzheimers and spent 2 years in a residential home.
It was a heart breaking decision to make but we kept her at home for as long as we could and after lots of research and visits to different homes, we found one that we all agreed on and I’m pleased to say we were very happy with the choice we made.
Although mum didn’t participate in anything, the home had an Activities Coordinator who organised lots of things for the residents who wanted to take part. It sounds like your mum would probably enjoy mixing with the other residents. We were able to visit whenever we wanted and were able to take her out on occasions, although this proved to be too confusing for her.
As others have said you must explore the position regarding finances and what the NHS will and will not provide. You may qualify for Continuing Health Care financial help, as your mum has a catheter and is incontinent. It’s definitely worth looking into.
Hopefully in the right care home and with some private physiotherapy your mum may make some improvements.
Good luck with your search and I hope you get your mum sorted soon.
Hi. Would it be possible to take your mum to the nursing home the family decide on so that she can see for herself what it would be like living there and also meet some of the staff? Good wishes and hope mum settles down in her new home.
Lots of good advice above.
A couple of things to add. It’s early days still and improvements never stop if effort is directed at the boundary of ability on a continual and varing basis.
That will take a combination of your mum’s motivation and you & any care staff. The professional med staff don’t have lived, visceral understanding. Some have the empathy and listening skills to compensate but not all, maybe not even the majority. When you find good ones hand in to them!
Also use all the support services you can find as sounding boards. Discovery of options is a slow slog but pays dividends in the long run
You mother sounds as severely affected as my brother who is a little younger at 68. Left side for him. Chewing restored itself and catheter removed after a while. He still wears the adult pants for incontinence, but to be honest it is mostly because he is not always able to be got to a bathroom.
I am replying because we found very little rehab in the UK. My brother went to a care home, which was a little hard to be surrounded by much older people and a lot of dementia, and there he got physio via NHS. But it totally felt like training exercises for the physios. As that was finishing, we looked around for other rehab treatments to have the best chance of maximum recovery… eventually to be able to stand/walk, but we realise now that is a long shot.
Not finding any rehab centres in the UK that could care for him, we looked abroad… Spain, then India and Thailand. Thailand was the best and I don’t know how but we managed the multi-leg trip there and he is in a fantastic place, with huge room, dedicated carer all day and multiple rehab treatments a week (muscular, mobility, machines, electro). I just cannot imagine how we would be able to have anything remotely similar in the UK where he would wait 30mins for 2 carers to use a Ross-Return to get to the bathroom, and then sit in an armchair the whole day.
We are grateful for the cognitive function he has retained and ability to communicate, and with humour. An electric wheelchair was supposed to bring some independence, but its too much without a chaperone at the moment due to concentration and some visual tunnel vision.
Bizarrely, after being in Thailand 3 months, a new resident arrived who was from a village just 10 miles from my brother! That is one of the hardest things - being remote from familiar home surroundings and people.
Hope this offers some options. Look at my other posts for details.
Hey thanks so much for your reply, I really appreciate you sharing the story of your brother.
I am also worried about my mum being surrounded by people who are older than her or even people who are actually the same age as her but have aged a bit more, if that makes sense. I know she needs the nursing care, but just 4 months ago she was living completely independently, going to all sorts of social groups and travelling all over Europe by train. I think she is now at a sort of in-between level, where she can’t take care of herself due to the paralysis, and she does have some cognitive issues, but she isn’t quite at the stage that many people in nursing homes are. We have been visiting homes over the past few days and some of them are really nice and all the people seem well cared for and they do organise lots of activities, but it seems like a lot of residents are just sitting watching tv or sleeping for hours a day. Even at the rehab unit my mum is currently at, she complains about how all the other patients just want to watch tv, so she ends up just staying in her room reading or doing puzzles. I worry that once she is surrounded by “older” people she is just going to get worse. We will be continuing her physio with private services in the nursing home though, and we will work hard to encourage her to join in with the activities the homes offer and hopefully she will find some other people in there who are lively still. It just breaks my heart when we walk down the corridors of the homes and see all these people lying in their beds watching tv. My mum will hate living like that and it’s come so suddenly.
Unfortunately there is no way we could get her to somewhere like Thailand although I have heard great things about those centres. She is terrified of flying and hasn’t got on a plane in almost 20 years. Even without that she can only sit up for about 3-4 hours at a time for various reasons. We did look at a private stroke rehab unit in London which was £34,650 for 3 weeks but I don’t think 3 weeks would have been enough and any longer than that would really have been a financial strain for our family. Since the NHS therapists have decided to discharge her I have been tempted to look into it again but I don’t know if I am just clutching at straws because they said it is unlikely she will make any major improvements no matter the situation/help she gets… but then other people say it’s crazy of them to say that to us after only 4 months. No idea how you’re meant to know and spending money on a private rehab centre feels like it could be a huge gamble that could just cause her lots of extra stress and discomfort so I guess we are going for the medium option which is to send her to a nursing home but get her physio there and try and encourage her to do exercises/activities ourselves.
It sounds like your Mum is able to occupy herself better with reading and puzzles, and can converse well. My brother was never that type but is a backgammon player. His blind spots causes issues but we work it out. He’s just not a social butterfly.
We just found that he got sooo much more treatment and diagnosis outside of the NHS within a few weeks of arriving in Thailand compared to the 9 months in the UK after his stroke.
It’s a shame to say it, but it just makes me angry that the mighty service just grinds along with no real feedback or attention to needs.
Status now is that he has had spells of frustration/depression not being able to do active things. But at the same time needs to make more of an effort himself to use the facilities and support he has.
We expect he will want/need to return to the UK at some point, but I can’t help feeling that will seem like the end of the line, albeit with friends and family closer (but not 24x7). We are just stretching the finances available to get the rehab on offer.
I can’t imagine £35k for just 3 weeks.
UK Care homes and carers are amazing but they are all just so short staffed that we found simple needs were taking far too long most of the time. It felt like we had to be there as much as possible to fill the void. Of course you still pay full whack despite the half staffing.
What about a cruise for your mother, with a carer or with you. It could feel like respite and there is plenty of medical on board.
Hey, thanks for your reply and sorry to hear about your mum as well. Yeah I understand that we can ask the new GP to refer her for physio and speech therapy but the rehab place she’s in at the moment said she probably wouldn’t get it because of the progress she has made so far being minimal. It will be in a different nhs trust area at the home though so I’m hoping they might put it through but if not we’ll have to look at getting her a private physio i think, even if just to avoid her muscles stiffening up and being painful.