Realistic expectations of care home

Hi all, things have moved on a lot since my last post. To say it’s been a hectic and stressful couple of weeks would be an understatement. I’ll put a recap of what’s happened to date in a 2nd post just to keep things as brief as possible in this post.

My Dad is now in a care home. The discharge team said it was for an initial 12 weeks but also said that it would be a surprise if this wasn’t permanent. I spoke with the consultant prior to discharge who said while the collapses he was experiencing wouldn’t in themselves kill him there would be knock on effects but that made it impossible to put a time frame on things, it could be 6 months, could be 12, could be less, could be more. He was moved to the care home on 2nd February. Since then he has just been in his room in bed.

Anyway the potential issue is what the care home is doing for him. My Mum feels they aren’t doing enough but I’m not really sure what we can expect them to realistically do? If the doctor has said don’t let him sit or stand as its dangerous then what options do they have realistically?

My Mum is talking about him needing physio for his mobility issues, ongoing care from the dementia team who she spoke to at the hospital but is there anything they can do? Physio seems both impossible and pointless if he can’t even sit. He was due a mobility assessment prior to going into hospital which then got cancelled and they said they would do it while he was in hospital but that didn’t happen as he was bed bound, I think my Mum has a belief that if he has some sort of assessment / physio he will be up and about but to me that would be verging on a miracle.

To be brutally honest when he was in hospital and deteriorating my Mum made it very clear she didn’t want him home as she wouldn’t be able to cope but now she is complaining they aren’t doing anything to facilitate him returning home in the future. At the same time I know if tomorrow they said they had a program of treatment in place and were planning to send him home in x weeks she wouldn’t be happy with that and would say, rightly, she couldn’t cope. Added to all that is she won’t speak to anyone about my Dad so just complains to me and demands I ‘sort’ things.

Obviously its upsetting and at the moment it seems he’s in a bed in a room 24/7 just waiting to die. He can’t really see or hear so its not a great existence but I don’t know what I can do to improve it.

There is a complication in that we can’t speak with a doctor at the moment, an issue I’m trying to get resolved. When they moved him to the home they said they would transfer him to the GP that deal with the home on a regular basis. When I speak to that surgery he hasn’t been registered there but when I speak to the home they direct me to the surgery so I’m stuck in a loop. I got a call from the home when he arrived to say he was there and everything was OK but since then I’ve heard nothing from them other than conversations with the carers when I am visiting.

Don’t really know what to do and my Mum is making me feel like my Dad is not being well treated and putting the blame for that on me. What do I do? I don’t want to push back on the care home with demands that aren’t realistic.

Quick recap, my Dad went into hospital Xmas Day after passing out. This is being caused by a rapid blood pressure drop to as low as 40, this happened several more times in hospital to the point they at first stopped him standing up but then it also happened when he was seated so he was declared bed bound.

The consultant did mention trying some medication to see if this could be stabilised which involved trying a dose then getting him up, with the support of two people, to see what happens to his blood pressure. He said this could take a while as various doses might need to be tried but didn’t need to be done in hospital and could be done by a GP. It sounds more like a ‘we’ve tried everything else we might as well try this’ than something they had much expectation of working. I certainly didn’t get the impression it was pop a few pills and be up and about which is how my Mum, who hasn’t spoken to the consultant at any point, has taken it. Obviously as I can’t at the moment speak to his GP due to the registration issue its proving hard to get any information on if this is being continued or has shown any signs of working.

My Mum will now tell you he was fine before he went in but in reality his health has been deteriorating since at least the start of 2015. I can literally put a date on it, 21st March, as my parents were supposed to be visiting but I got a call the night before to see if I could meet them instead as my Mum didn’t want my Dad to drive. When we met up she got me to walk behind him to see if I thought he was shuffling when he walked, which he was.

This was followed by years of visits to doctors and hospitals but no diagnosis. He had tests for all sorts of things and nothing came up but he was gradually deteriorating, he had a couple of hospital visits as the results of falls or collapses.

For around 18 months prior to hospital admission his days have involved needing assistance getting up and dressed. Being helped downstairs (I was furious to find out recently that some days this sometimes involved him sitting on the top step and essentially bouncing himself down one step at a time) to the sofa where he would sit all day apart from when he would go to the toilet or to eat in the dining room, and anytime he wanted to move he needed assistance.

He has vision and hearing problems, a pacemaker, incontinence and, as was finally diagnosed in hospital, vascular dementia. His dementia has taken the form of not wanting to deal with things like utilities or workmen if anything needed doing in the house, you could also have the same conversation with him repeatedly but nobody really joined the dots and just put it down to old age.

Two issues Mums lack of appreciation of Dads current status. I know it’s hard but try to ignore what she is saying. You are doing everything you can and you can feel good about it.

Dad capabilities are the carers doing any bed exercises. If not that’s something that can be put in place. Of course only if Dad will want to do them and may feel not inclined or well enough. There are plenty of low impact bed exercises on the internet.

Alternatively, an O/T or physio should be involved.

Comfort activities head feet hand massage my niece works care. And reports people love this and she has head phones for people when doing hands and feet.

Your Mum could help with the above. Just get some lovely hand/foot cream.

Try and keep the brain active and engaged. My Dad liked having short funny poems and jokes read to him. I would find strange funny stories and tongue twisters etc.

To be honest I don’t know what they are or aren’t doing. My Mum visits in the week and I visit at weekend but my Mum won’t ask them anything and there’s not a great deal of staff in at weekends. There’s an open slot every week for relatives to go and speak with the manager but my Mum won’t go and I’m at work.

My feeling is that if he is permanently bed bound, which I suspect is the case, then there’s little point doing leg exercises so its limited to upper body stuff he can do in bed. Past experience tells me he’s not going to do anything I suggest or arrange, I’ve tried all sorts of things pre-hospital including things he could do lying in bed but he would never do it. So it will need an O/T or physio but until I can speak to the doctor its not easy to establish what its been decided he needs.

Its getting difficult as he isn’t really engaging. Not sure if that’s a result of depression or his dementia getting worse. He complains that he’s bored and just in bed all the time yet when we visit he doesn’t really want to talk and just watches TV, which is odd as he’s never been a big TV watcher.

Really struggling at the moment. My Mum just refuses to deal with anything and I’m very limited in what I can do as I’m at work and can’t really make or receive calls.

She visited earlier in the week and was let into the home by the manager so I said did she ask about the issue with the move to a new GP or if he can be got out of bed, or any of the other things she’s been bringing up with me and she hadn’t. Weeks of complaining nobody is telling her what is happening and she’s there talking to the manager and won’t ask.

There’s a 2 hour block on Thursday afternoons where the manager is available for questions which I’ve given her details of and she’s refusing to either go and speak to her or call.

I’m at a point where I’m thinking about taking annual leave so I can make phone calls which is not really a road I want to go down as every time anything needs to be done or queried she’ll expect me to take time off to deal with it.

Dave as Mum is next of kin can you get her to give written permission for you to directly speak to the care home. I don’t see why you have to take a holiday from work. The care home should be able to accommodate you with a day and time to communicate. Likewise you should easily be able to email your questions prior to any meeting/phone call etc.

From my own experience with my parents, sadly, this is only going to end one way, when dad passes away.
He’s never going to get better, the dementia will deepen.
Realistically, he is approaching the end of his life, and nothing anyone says or does is going to make much difference.

Even when dad was in the hospice, mum was still hoping he was coming home again.
No point in contradicting this belief.

However, you have work to do, and cannot be mum’s puppet or mouthpiece.
Tell her that she must speak to the home, and if she won’t, that’s she only has herself to blame.

Have you thought about final arrangements, which funeral director to use, who would like to say goodbye, etc. etc.?
This might seem a cruel idea, but it’s much better than a sudden death and no plans in place.

Another horrible suggestion is to Google “Signs of Dying” and reading how the body slowly stops working properly, in the last few years and months.
I wish someone told me to do this when the first of our four parents was ill. It would have helped us both so much.

Don’t take time off, mum will only want you to do this more and more.

The care home will happily speak to me but the manager and assistant manager are generally in during office hours and with my work it is very difficult for me to make or receive calls even if they are scheduled. My Mum is visiting the home 3 times a week, speaks to the managers but refuses to ask them the questions she has and instead wants me to ask them.

There’s even two hours set aside every Thursday afternoon where the managers will be available for any relative questions but my Mum refuses to attend and ask.

There’s issues around ongoing treatment but that’s for the doctor which I’m working on sorting. I have an appointment with them tomorrow to get power of attorney sorted with them so they will speak directly to myself or my Mum.

The questions my Mum has are more everyday stuff ranging from what food he is having to the arrangements for washing his pyjamas. There’s really no reason she can’t ask those given she’s already speaking with the staff and management there.

To be honest its not just stuff to do with my Dad, she won’t even open letters, check emails etc and piles everything up for me to deal with at the weekend.

I’m certainly not expecting a recovery, the consultant at the hospital said while he couldn’t put a timeframe on things 6 months would be unlikely and 12 months very unlikely. My Mum seems to think they can give him a magic pill and he’ll be up and about. When he went into hospital and they were talking about sending him home she was adamant he couldn’t come home but now he’s in care she’s complaining they’re not doing enough to enable him to come home!

We have a local independent funeral director we have used in the past so that’s not an issue and I’ve spoken to my Dads sister about what he wants as a service. The sad reality is there’s virtually none of his friends or family who are still alive so it will be very small scale.

This is my big concern. She’s pushing more and more on to me and I don’t want to get to the point I’m having to take time off to deal with things but she is completely refusing to do anything and if I try and have a conversation with her about it she says I’m shouting at her.

My mum was exactly the same with correspondence.
She had a letter opener knife, might open the envelope with it nicely (I was told off at 60 for tearing one open) then she would peer in, see it was a bill from gas/electric etc. but not take it out. I once found she was £1800 in credit with electric!!!
I used to manage filing in a hospital, so her attitude horrified me.
I bought her a hole punch and lever arch file, and asked her to open everything and put it in the ring binder to make it easier for me.
One day she rang me up to say it was no good, she couldn’t pull the file apart. At the age of 80, she had never ever met a lever arch file!!!

In the end I had POA, managed everything, as long as she knew she had enough for whatever she ordered from Ambrose Wilson, she was happy.

Maybe try to get her to bin her junk mail, and enrol her with the mailing preference service?
All utility bills paid by standing order would also take the pressure off.

Hi Dave_1974. I’d suggest contacting the care home by email.

You are in a really difficult and stressful situation. It sounds to me that your Mum is in denial about what is happening to your Dad. I think that a health care professional needs to sit down with her and gently have a conversation with her about the reality of the situation. She will possibly pay more attention to someone like that, rather than yourself or another family member.

It must feel like you are banging your head against a brick wall. The question I keep asking myself is “what do I want to happen?” - realistically I mean. It sounds like your mum isn’t going to ask anything, but she’s going to worry. Do you think there’s anyone she WOULD listen to? Do YOU want to know how things are going on a day to day basis? Or do you just want to know that he’s happy / safe? Do YOU think he needs mobilising to get moving? I’m not sure if I’ve missed why he has orthostatic hypertension but it’s not usually a thing on it’s own so can they do anything about the underlying cause? If being bed bound is permanent, physio for mobilising seems like a fight to nowhere but he still needs to be mobilised to prevent pressure sores etc. If your mum won’t listen to you explaining this then you can find someone else to do it or just let her steam. Sometimes we have to accept that there’s nothing we can do to change how someone is. Sometimes we also have to accept that we might need to do something ourselves in order to get it sorted! I’ve taken on a lot of extra stuff but it means I have control over it (I’m a control freak - ADHD & autism) because I know that if I leave it to my brother or my Dad then the wrong questions will be asked, if at all, and nothing will move forward and I will still be living through it every day. However, if I take the time to make a phone call for example, and ask the right people the right questions, it might be sorted quicker. Yes, it means giving in and doing it yourself, but it MIGHT just show that it can be done, you might improve everyone’s quality of life (at least in the short term), and also sadly it doesn’t sound like it’s something you’ll be dealing with for years to come. Can your Dad tell you what would make him happy? Do the care home have any ideas for entertaining someone in his condition?

If it were me, with my need to sort and not let things drift, I would ask (demand) that the care home manager speak to you at a time convenient to you, either by phone or a visit, with or without your mum. And as for the ridiculous situation with the doctors, I hope that’s sorted now but if not, what would the care home do if he became ill (or ill-er, as in requiring a GP)? It should only take a maximum of a week to transfer from one GP to another (we’ve just done it for my dad) so they have no excuse to fob you off any longer.

Sometimes you need to give in to get things sorted, sometimes you need to stand back and accept that things are the way they are, sometimes you need to give people the tools to help themselves and if they choose not to use them then its out of your hands. I wish you well! None of it is easy.