Absolutely broken (more care home issues)

All about caring
1

I don’t know where else to turn or who to talk to, so I’m afraid you’ve got me wittering on again. I’m at that “ugly crying, struggling to get my breath” stage and now of course I can’t think straight, let alone be succinct!

TL/DR - Dad is being ostracised.

I’ve posted before about several issues with the care home that Dad has been in for 7 weeks now and we’re still trying to iron out some of these problems. I finally have a meeting with the manager and deputy on Thursday to discuss Dad’s care plan (postponed from last week) which I had to keep asking for - 6 weeks to me seems a long time to get one sorted. Generally the home is great and has a good reputation locally, good staff retention etc, but I’m finding it hard to let go, especially when mistakes have been made that have caused issues, such as severe pain. It was me, not the staff, that identified he had been mistakenly put on ‘as required’ pain relief & hadn’t been given it at all despite him being in a really bad way. My main wishes are that my dad is happy, safe, and hopefully keeping mobile (in order that be able to get out & about & therefore stay happy). We fully believed that him going into residential care would help achieve this in ways that we couldn’t (especially with the issues we were having finding any carers to help us out) because he’d be with similar aged people, less isolated, encouraged to move more & do activities, & his medication would be accurately timed. However, his medication is not given at specific times, which is allegedly important for Parkinsons and was part of the reason drop in care wasn’t suitable. The rest is a bit of a pickle (apologies it’s so long).

Dad hasn’t wanted to go down for lunch (the only meal they take in the dining room) and hasn’t wanted to have anything to do with the activities. Some of it I can understand, he hates bingo and some of the activities are a bit cheesy, but I’ve tried to encourage him to at least sit with people for company while they make salt dough teddies etc. Initially he wasn’t ready but since the second or third week it seemed more than that. In the first week he went down to lunch a couple of times but it was a struggle because it’s not obvious that he’s blind or deaf and they sat him with a resident who couldn’t talk! After the 3rd week I walked with him & the deputy past the dining room & managed to convince him to have lunch there. I asked if he could perhaps sit with a chap I’d seen around a few times who seemed quite jolly as we needed to get him chatting with people and wanting to get out of his room. She went a bit quiet and I was steered away from the dining room so I never knew who he sat with and I tried not to be paranoid about why. I wondered if perhaps it was to do with this chap & him, or even not about Dad at all. Since then Dad has point blank refused to go down for anything without being able to offer a reason, and has missed out on so much. He now walks from his chair to his toilet and back, about 2 metres, and that’s it. Other than when we visit he only sees the carers, some of whom tell me what a character he is. One apparently told him “why don’t you just shut up!” the other day, which I find hard to believe.

Today I visited with the Sensory Loss Advisor and we ended up walking him to both of the lounges so the advisor could see what obstacles there were, how he moves etc. We walked into the quiet lounge where people were reading the paper and Dad called out hello but I felt like they were irritated that we’d disturbed them. We went to the other lounge and out onto the decking for a while and when we came back through the dining room people were sat down waiting for lunch. Many of them looked unhappy with us and I thought it was because I was having to loudly advise him of which way to turn next etc. This is a blind, deaf man, negotiating his way through several tables and chairs that he has no mind map for. I tried to say to him it would be so much easier if he just sat down to lunch here and there seemed to be some murmuring from the residents and perhaps a comment from a lady about it being much easier if he wasn’t… (not sure when she said). He decided that he would stay for lunch and I jokingly said he was lucky I didn’t have a sharp object after all the trouble to get him through the tables. The men’s table didn’t have another place set so I asked the table with the ladies on if he could join them. They smiled and said there were lots of places several tables away. One lady sat on her own put her hand out for Dad to join her and I was so touched but she can’t speak and the gap was too narrow for him to negotiate. He ended up sat on his own which was totally the opposite of what I was trying to achieve! I mentioned to one of the carers that he was on his own and was there anyone else coming, hopefully someone he could actually chat to, and she offered to lay a place on the men’s table. I went over to Dad to move him and could hear the men’s table saying no, we don’t want him, trying to stop the carer from putting down cutlery etc. She asked why and one of them said “He’s a gobby old loudmouth.”. I said to dad he could stay where he was, quickly said goodbye and rushed out before I broke down. I ran through the building choking back sobs and failing, up to Dad’s room (I’d left my blooming bag there) followed by the poor sensory loss chap who didn’t know what to do, and with several carers left open mouthed on route.

So… I guess we’ve identified why Dad doesn’t want to go and mix with the other residents, it’s because he’s not welcome. He can be unpleasant and rude but my goodness he’s been down to lunch only a few times so what on earth has he said to upset everybody so much and why the heck wasn’t I told?! Now I’m torn - you stay in your room Pops if that’s where you want to be, but also, that’s not fair & it’s not doing him any good. He won’t be the only difficult one I’m sure but I wasn’t expecting him to be so ostracised by the other residents.

On top of all this, I’m being badgered by his former partner’s family (tenant in common situation, they were together for about 20 odd years). She died 10 years ago, her husband died maybe 3 years ago, but since they got wind of Dad needing care just before Christmas, they’ve started hassling me about various points in the agreement that they are wondering if we are doing (we are.) I’m struggling with belonging in my own family right now and with Dad not belonging in his care home but unable to return to his own home, I just want to go and collect him and find a flat for us to live in where we can be outsiders together. I feel so utterly broken and unable to help him, or myself. Thank you so much if you’ve got this far! xx

1 Like
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Hi Henry’s Cat. I don’t have much I can suggest at this point: the main problem seems to be that there are some miserable old gits in the care home.

But then I’m a bit of a gobby old loudmouth myself. My excuse is that it was my job. Your Dad’s is that he can’t help being elderly, and people with sensory issues do tend to speak loudly. As my Mum’s hearing has got worse, she’s got louder. Significantly. Her whispering is hilarious because it sounds like a stage whisper, loud enough to hear a mile away! :wink:

But that means that if she says something that others might find insensitive (a child she thinks is badly behaved but has autism, for example), everyone hears it.

In your Dad’s case, he’s trying to engage with people he knows are supposed to be there but he can’t see, and they seem to be less than keen on communicating, especially with strangers. That could be because they resent being in a care home and he’s an easy target (school bullies generally grow up but don’t always stop being bullies), or he may have inadvertently upset someone. The newbie always gets the blame in those cases.

It might be worth talking to the care home staff about this: it’s time to review how things are going, and some of that will be about your Dad’s relationships with the other residents.

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Ah yes, the stage whisper! Love it!

It definitely seemed more than him being loud and probably shouting ‘aye?’ every time someone spoke to him. This chap was really cross about something. I really get the feeling that the staff knew about it too. I do wonder how they manage with such a variety of issues and potentially challenging behaviours in these places - how do they include people that rub other people up the wrong way? If someone has the potential to be aggressive, how do they manage that around other residents?

Of course now I’m looking at the photos on Facebook of the activities and instead of thinking it’s a shame Dad doesn’t want to join in, I’m now thinking how awful it is that he can’t. Yesterday afternoon they posted a picture of a couple of ladies (that had shooed Dad away) and this chap, all sat around planting on sunflowers. Dad has been begging to go outside and he misses his garden so I was absolutely in bits again that he’d potentially missed out on something he might have done. It feels like they’ve given up very early in his stay, in getting him doing things.

I’m going over and over all the options of getting him out but we’re totally stuck and he’s fairly content there anyway - it’s me that’s not!

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After the fall out from yesterday’s lunch hall horror, I keep going over and over the different options, and there don’t seem to be any.
If we move Dad to another care home it might end up being a lot worse. He could also well fall out with the other residents again and anywhere else will likely be more expensive.
He can’t move home as he’d need a wet room to be installed, which could take months (unless anyone knows if the council can get things done quicker than your average home owner? He can’t use his shower because it’s too small for a stool and has a step up to it. Also he’d need live in care now - either me (which I can’t do as I have a family), or a paid person. Between that and the wet room and the cost of living, he’d have no money within a month and then the council would say residential care is all they will pay for. If we went back to my brother and I sharing the care, it would kill me, especially as Dad’s need have increased to needing someone full time. I’m 30 odd minutes away and my brother is unreliable & is possibly moving to the other end of the country. We couldn’t access any drop in care when we tried before (as we were trying to get fairly time specific care although that’s a moot point now) and it wouldn’t be enough now anyway.
He can’t move in with us as we’d also need a wet room and I don’t think it can be done here. Also my husband is reluctant as the impact would be too great on all of us (2 children with neurodiversity). It’s also away from my brother and Dad’s 3 friends that visit him.
Assisted living is too late because he needs too much care already. If he moved to something more suitable, perhaps with a wet room, he’d still need a full time carer & it would have to be near me which takes him away from his friends.

It’s impossible :frowning:

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This is all new for your Dad. He’s somewhere he probably didn’t really expect to be: because what we think care homes are like is very often quite different, just like every other expectation we’ve ever had. It’s entirely possible that there were a few misunderstandings early on, when staff and residents had not got used to your Dad - that’s a two way street, and his initial reactions to people might have been a bit negative - for example if they’d come up on him without warning, given that his hearing is dodgy and his eyesight is a problem. People who are surprised/shocked by a sudden “appearance” can react strongly out of surprise and fear. And that might be seen as aggression. If your Dad explained, in those circumstances, that he was at least partially deaf/blind, it wouldn’t have been calm and quiet.

That’s all speculation but it would explain the negative reaction from the other residents, and perhaps the hesitancy on behalf of the staff.

It’s important to talk to the manager about your concerns and to see what might have triggered the responses. That will give you something to work with, and hopefully help to clear the air. Do you have a friend who could give moral support while this happens?

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Yes, I’m afraid it is impossible. The home is the best realistic long term option, the best of a bad bunch.

I know it’s not what you or dad wanted.
I’ve lost all four parents now, none of them had a “good” death, they were all old and decrepit for an extended period before they past away, because they were all old.

On the other hand, my lovely husband died at 58 from a massive heart attack. He didn’t suffer for an extended period, less than a month before he died he was driving his lorry with low loader, steam engine on the back, to a County show.

None of us can choose how we will be as we get older, we just have to tolerate whatever health problems we have.
You and your husband have a right to your own lives too, you don’t know what health issues you will develop later, either.
Your neuro diverse childen need support too.
Most of all, you have a right to time to do your own thing now and then.

So moving away from the home is

Impossible for dad
impossible for you
Impossible for your husband
Impossible for your children.

Somehow, you have to reconcile yourself to this situation, and it won’t be easy. There is no other realistic option.

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Cut and paste from the other topic:

This is all new for your Dad. He’s somewhere he probably didn’t really expect to be: because what we think care homes are like is very often quite different, just like every other expectation we’ve ever had. It’s entirely possible that there were a few misunderstandings early on, when staff and residents had not got used to your Dad - that’s a two way street, and his initial reactions to people might have been a bit negative - for example if they’d come up on him without warning, given that his hearing is dodgy and his eyesight is a problem. People who are surprised/shocked by a sudden “appearance” can react strongly out of surprise and fear. And that might be seen as aggression. If your Dad explained, in those circumstances, that he was at least partially deaf/blind, it wouldn’t have been calm and quiet.

That’s all speculation but it would explain the negative reaction from the other residents, and perhaps the hesitancy on behalf of the staff.

It’s important to talk to the manager about your concerns and to see what might have triggered the responses. That will give you something to work with, and hopefully help to clear the air. Do you have a friend who could give moral support while this happens?

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I’ve got a meeting tomorrow morning to go through his care plan so I’ll make sure this is dealt with before we start, as the two things are obviously linked. I need to know if it’s reparable damage, why I wasn’t told, & how they propose we go forward in either case. When new residents come into the home with specific issues, it’s not just staff that need to be introduced / managed, I would have thought! I don’t know if I’m being niaive about the capabilities of nursing homes but I want them to do a better job than I was doing for their £35,000! My ex-sister in law is calling tonight and she is also a manager in a nursing home (totally different area unfortunately) so I’m going to explain some of the things that I think are fair for me to point out (leaving my nit picking behind!) and see if, in all honesty, this is unfortunately normal. Their website says they specialise in visual & hearing impairment but they’ve said time and again that this is all new to them. It’s really hard to consider his sight loss all the time because it’s hard to put ourselves in that situation so I appreciate things might get missed but they don’t seem to be able to consider him at all as far as socialising and activities goes. I think they need to be thinking outside the box a bit, like they said they would, and they should have properly introduced him to people rather than plonking him down next to someone who couldn’t hear or didn’t know he was deaf! I just hope it’s something we can all get over because I don’t know what the alternative is, especially if he has upset staff as well.

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Apologies Charles, I missed off replying about the friend. Normally my husband would be with me in times of great need but he can’t get out of his meetings tomorrow. I don’t really have anyone else who can help. My brother is as useful as a chocolate teapot and could well inflame the situation. I don’t want him to be where people (residents or staff) don’t like him, but also I can’t change his behaviour. I understand that he’s grumpy and I think they should too to an extent - his world has been suddenly turned upside down, his Parkinsons affects his mood too, so it’s to be expected. It doesn’t excuse him being rude or abusive but I would hope for a little bit of compassion. I’m absolutely dreading tomorrow - I’ve hardly stopped crying since it happened and knowing I’m going in to bat for him in a bit of a one-sided fight is not filling me with hope.

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Hi Henry’s Cat,

Prepare for your meeting with a list of key points that you want to get across. Focus on the main ones, for now. It’s good your sister is going in - she will know how to speak to the manager using insight from her own role.

Getting his meds sorted has to be a priority. The GP needs to be really specific on the labels about timings etc - then they are more likely to comply as this will be recorded on the MARS sheet.

My thoughts on the rest (in no particular order, I’m afraid):

I’m wondering if there is an ‘in crowd’ and an ‘out crowd’, The one woman held out her hand to say she’d love your Dad to sit with her. Can she not speak because she is deaf and perhaps a signer?

Unfortunately care homes, special schools etc often exaggerate on their websites - claiming they have experience of caring for deaf and visually impaired people, may mean they have had several residents with hearing aids and glasses for example.

Does using his Parkinson’s make using a cane impossible for him? It would stop him bumping into things and be a visual reminder to everyone that he can’t see.

Does the home have a timetable/planner of the weekly events? If so, you could then look at what is planned and make sure the most suitable ones are highlighted as ones your Dad would enjoy.

Does your Dad have difficulty feeding himself with the Parkinson’s and being blind? Do you think this is an issue for the intolerant residents? Does he have any special equipment he may need (plate guard etc) and do staff tell him what is on his plate and where? Eg mashed potato at 9 o’clock, fish at 6 o’clock, peas at 3 o’clock - to help him build a mental picture of his plate of food.

Finally, he won’t be the newbie for too long I’m sure, hopefully the next newbie will be a suitable companion.

Melly1

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Thanks Melly,

Unfortunately my sister in law isn’t local so it was just me this morning but I did as you suggested (as did she) and kept to a few main points which I’d written down.

As I’d hoped, the issue is really only with the one chap as the rest all have dementia in various forms & wouldn’t know Dad from one day to the next. Some of them just don’t like change. He has fallen out with this one guy & and it absolutely was Dad’s fault but without any actual malice (the poor chap’s wife had only died 2 weeks before & he wasn’t ready for quick fire, blunt & direct questions). The staff knew to keep them apart (but obviously one had forgotten) & he’s actually leaving, partly because he’s very angry at the world and with being in there & grieving etc so I understand but they have told him he can’t be rude to people like that.

The lady who welcomed him can’t speak (or very little so you’d need a lot of experience to work it out) & I’ve not seen her signing or anything. It’s such a shame that their individual issues clash because they both love horses.

Dad is currently getting used to a walking frame (I asked about a quad stick after Charles recommended it but they’re too worried about him falling). Because it’s wider at the bottom he gets tangled in things so just rams at stuff that’s in the way expecting it to move! If he wore dark glasses it might remind the other residents of his blindness but he relies on light so see vague outlines. There’s absolutely nothing straightforward about any of his issues. Even having his TAVI on his heart, they had to change the route from his main artery because his internal organs are in the wrong place! He’s a medical marvel!

The sensory loss advisor has reminded them about putting things in the same place on his plate all the time and they’ve eventually got into the habit of using a plate guard without having to ask him. I don’t know if any of the other residents are dribblers too but Dad often doesn’t know that he’s god food in his mouth so he either puts more in or starts talking so it all falls out.

Regarding his medication / pain - they did try to dismiss my concerns about him being to my mind ‘left in pain’ saying they’d dealt with it etc, they couldn’t have known, & what did I want. I said that unfortunately for them, my autistic super power was detail and I knew that there were people in the room on that day (one of them being the deputy who was in there with us!) that should have realised his pain wasn’t normal and done something about it. I’d forgotten to say that I’d asked several times for an update from the GP, which I hadn’t got, but I did stand my ground and say that I wanted reassurance it wouldn’t happen again (third time) but also I wanted them to say ‘we made a mistake and we’re sorry’. There was a brief stand off (which was hard for me because I felt compelled to maintain eye contact) but then she accepted it. Dad is one of the few residents who doesn’t have dementia and / or isn’t bed bound so they can have banter with him and he is generally well liked. They struggle with the activities but they’re working on it and they do sometimes just go and have a chat with him which is the important bit for me.

Generally I feel a lot happier and I do really believe that their intentions are good. They’ve made steps to make things better for him and to reassure me. They know that I’m hyper-aware and I think they can see why (ASD & previous issues). I also thanked them for things they had done and expressed my respect for their job and how difficult it all is so I think we’re all good. Of course they may well have wanted to ring my neck but hey, they don’t have to like me really :slight_smile:

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Well done. I know just how exhausting this sort of meeting is, so be kind to yourself. Dad is so lucky to have you sticking up for him.

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That sounds like a really good meeting. Well done!

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Yesterday evening I was perusing Facebook and came across the latest videos for the care home, taken yesterday afternoon. I had to watch 3 times before I believed it. Not only was my dad in the bloomin’ lounge but he was LEADING A SINGALONG!! We went in today to take in a fridge for his chocolate and beer (no idea why his blood sugars are so high… is a mystery…) and I thanked everyone I came across. They all said he had them in fits of laughter doing a Tai Chi class as well! The teacher sat down in the end because he’d made up his own moves and everyone was following him instead!

Thank you all for ‘listening’ to me ranting. I’m not going to say anything out loud that might jinx anything but I can hope xx

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Wonderful!
Now you look after yourself as much as possible this weekend, and try and relax a bit. All this stress needs time to go.

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Oh Henry’s Cat well done. You are a great advocate for your Dad and I know how stressful and exhausting being one can be. I regularly have to advocate for S to get things right at his college day service, clubs etc

Melly1

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Brilliant news!