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Carers UK Forum • Leaving a Care Home
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Leaving a Care Home

Posted: Mon Jan 04, 2016 7:24 pm
by Belinda_1512
Hi. Permission to dump woes please?
My 85 year old Mum, widowed 3 years ago, was living alone, with my help and a few visits from private helpers. Then last August she was diagnosed with heart failure and at the same time I had an attack of atrial fibrillation which wiped me out for a couple of months, and so she went into a care home. Actually we both did, 4 weeks respite. She couldn't look after herself but refused to believe it, so I would have tried to struggle on. She could see I couldn't do that though, so suggested we both go in! She then decided to stay. Reputed to be the best in the area and 'very pleased with itself' to quote Mum, she is now set on leaving and setting up home again with helpers she believes she will find by posting a card or two in the local shop window. Her previous cleaner is now too sick herself. I must say that was very successful last time round, but there is no guarantee and no plan. Is it legal to refuse a male carer who might answer such an ad? Just wondered. She would.

I put off gall bladder removal because I wasn't fit for anaesthetic after the AF attack and what followed - it's been a massive job getting her settled, but I now need surgery more urgently, yet how do I commit to anything with her so restless?

She says they leave her 3 -5 hours without offer of a drink, ( knowing she has a kettle, and needs to keep active, I would suggest) they don't make the bed, don't often change the bed, the linen is grey and rough and horrid, the food is awful, and people are not working to the standards she did ( as a nurse in the 50s). I hear differing reports from her and her carers from time to time. She is very negative and it's exhausting, but then maybe she's right. It's just that she's worn out people's sympathy rather. She won't complain formally, but is starting to make jippy comments, which result in similar back to her. Nor will she allow me to say anything. She just doesn't believe they will change, and her friend across the corridor confirms the decline in standards. Currently rated Good across the board, but there have been budget cuts.
I am feeling desperate because I've got really low, and my heart is often not beating right, just from keeping her going while still at home, and I'm spending more time with her than ever, fixing and fetching. I know I can't manage her at home with me ( hubby forbids it now, says she's really grinding me down and I'd be on the go 24/7 with no time out) and I just don't know where to start. I have never felt so weak physically, and keep bursting into tears, it's ridiculous.

I believe she needs live in care, though sometimes she could manage without, but we need to cover the frequent times when she'd just sit and starve if living alone. When she gets a UTI ( quite frequently) she gets really confused. She is hypothyroid, Type 2 diabetic, with heart failure, oedema, risk of falling, and really only able to potter about a little. We tried a visiting carer system, but they were a disaster. One a bully, another falling asleep at the table, not doing her shopping in the shop she wanted ( bringing the wrong brands home), arriving late and miss-recording it. She fired them, but she's not always that strong. And left herself with only 6 hrs help a week in the house, and me.
Since she left her home I've taken the stair lift out! All with her approval. But now she doesn't want to return there, (simplest solution if we must do this) having burned bridges and told the vicar not to darken her door again, and now would like to buy a bungalow, not sure where! I was about to rent her house out but now I shall have to sell it. I am her facilitator - she can achieve nothing without me, but I can't refuse.

She isn't unable to think, just a little forgetful, though she doesn't always come to consistent conclusions. Hard to say I do at the moment either! Very black and white person, whereas I am not, which is my problem. I visit and listen to so much repetition and complaining, but there was a fair amount of that before she came here too!

I wish she could accept where she is, which looks like a 5* hotel, or let me put a camera in to prove her right, and talk to the manager, but she is set on her course. I will spend myself letting her find out the hard way. My husband says to go along with it all but not shelter her from the work involved, so that she will see what she can't do. That's still me house viewing and dashing about though. I enjoy looking on Rightmove as a rule, but now I am mentally running away from it all. Actually she knows she can't do anything without my help and she's grateful and I'm willing in principle, but I just don't feel able now. I am doing nothing else in my life except recovering from visits to her! I've not been employed because of health issues, and the one activity I had I've had to give up, last June. I got so weak I passed out. Singing.
I have never been able to gain say her, as she has such strongly held views and well trodden thought pathways, she cannot hold a different opinion. The carers are saying she has too much time to think!

I think she will need more help soon, not less, and will not get back in the home if she leaves it this way, probably with a parting shot over her shoulder, nor will she have seamless access to nursing care when she needs it. In my father's last months we had a horrible time casting around for somewhere for him, and it was dire. My FIL thinks she's mad!
He doesn't like care and all that goes with it, but recognises a good deal when he sees it without demanding perfection.

Am I being unreasonable? How do I let her try but keep her safe without killing myself. My husband ( who is in Prague 50% of the time) and my friend say I will do just that -kill myself, so this isn't me being melodramatic. They think she should stay put, but to prohibit her will ruin our relationship. I am afraid of a showdown. The last one caused me terrible chest pains. And it's one of these situations where it sounds perfectly reasonable while I'm with her. I still despair at the prospect, but I can't deny her, although she sees I disagree with this, for her sake, not just mine. I agree with what she complains about ( if it's true because she's not entirely consistent) but like my FIL I think the benefits in the long run are probably worth the humbug. And I'm paying a big price too, currently without limit.
I have started to come up against walls in myself, where I just can't do more, whereas before I could always dig a bit deeper and give her more of myself, marvelling objectively at how bad I felt while still working, so I reckon now I am near the bottom. I find myself wondering what a breakdown actually is, because this is like a slow-motion crash.
I am early 60s, also hypothyroid, with metabolic problems, chronic fatigue, muscle pain, insecticide poisoning I can't get rid of, and heart arrhythmia when it all gets too much. And trying to get my gall bladder removed. It hurts.

I read your stories and you all seem to have parents in a worse state than mine, but I am at my end, or at least there is no sense in going closer. That is why she went into the home, to help me. What I want for her is for her to spend her last years where she wants to be, cared for to a standard that satisfies her. But I despair of every achieving it. I don't want to ruin a relationship that sustains her, and she has no one else. But where I would make a joke and smile, she dishes out salt, because they 'need to hear it'. It's just 'not good enough'. And I love her deeply.

I would welcome your thoughts.
Thank you all

Re: Leaving a Care Home

Posted: Mon Jan 04, 2016 7:33 pm
by jenny lucas
OK, I'll be blunt - she can't go home again. It's out of the question. So she either stays where she is, or you find another home (she will find fault with that too I suspect.)

What she 'really' wants is to be well and young again....and unwidowed....

Has she always been someone who liked to 'find fault' with everything? That kind of personality won't change.

OK, having been blunt, I now say 'welcome to the forum!'.

I see your tag line is Honour Thy Father and Mother that Their Days May be Long.

Sometimes people 'outlive their lives'. Sad but horribly true.

Re: Leaving a Care Home

Posted: Mon Jan 04, 2016 8:45 pm
by Henrietta
Hi and just a quick chip in here as going to bed but regarding the male carer question, I am sure when it comes to personal care that you are allowed to specify in an advert male or female only without being open to accusations of discrimination. I believe it is one of the very few exceptions but allowable legally. When I've employed agency staff , they have always asked me if Dad is ok with female carers or if he would prefer male carers only.

Re: Leaving a Care Home

Posted: Mon Jan 04, 2016 9:32 pm
by bowlingbun
The answer is to put mum off, and off and off. My husband died of a massive heart attack at the age of 58. His mum had died recently of dementia, his dad had heart failure and bowel cancer, my dad had prostate cancer, whilst my mum had a million and one things wrong with her. We also had a son with severe learning difficulties and were self employed.


You are having lots and lots of warnings from your body that no matter how much you want to help mum as much as possible, your body is simply worn out. I had counselling to help me manage a mum who was never satisfied with anything, unable to move much herself, she expected everyone else to run round her, totally self focussed, just as your mum is.

Counselling, specifically designed to help me manage mum, was brilliant. So just keep saying to mum that you know she wants to move, but AT THE MOMENT you can't do ANYTHING at all until you are better, doctor's orders. Get Matron onside, and ask her staff to keep repeating this to her.

There's no point in trying to please her, because as soon as you do one thing, she will want another. Whilst she is in the home, the home she requested after all, you know that she is well looked after and someone else's responsibility. When my own mum was in a home, I went to a residents meeting on her behalf. It was full of the most petty complaints imagineable, even the type of air freshener being used, the way the menus were written. Clearly, they had so little to worry about that they were left with little more than nit picking, fees £1,000 per week!

Whenever moving anywhere, employing anyone is concerned, change the subject. If she keeps on, just walk out on her, saying you are NOT prepared to discuss it further until the doctor says you are well again.

I hope that helps. Mum should be pleased that she has a daughter living close enough to visit her in the home.

Re: Leaving a Care Home

Posted: Mon Jan 04, 2016 9:39 pm
by Pennie
From what you have said regarding your state of health, I would say that you are totally incapable - both mentally and physically - of doing anything to change your mother's living arrangements at the moment.

You should say to her that you need (at least) 12 months to sort yourself out (necessary surgery, convalescence etc.) before you can start to investigate the possibility of her moving back home. Perhaps when she knows that - in theory - there is a finite end to her staying in her care home, then she will back down temporarily. (And who knows how circumstances may change during that year?!?)

(NB Written before BB's answer above, so we're obviously both thinking along the same lines!)

Re: Leaving a Care Home

Posted: Mon Jan 04, 2016 10:57 pm
by Elaine
Hi Belinda,
You know it can't happen. Mum can't go home and you cannot take on her full care again. Make up your mind to it.
That generation still has a great respect towards Doctors and a certain acknowledgement towards the authority of husbands. You tell your Mum as previous advice says, that both have forbidden you to take on anything until your own health problems have been sorted out. Your Doctor has said that until you are rested and strong you cannot have the operation you need, and that there's a long waiting list. Play the dutiful wife. Tell her your husband has put his foot down and has demanded that you rest. She might fall out with him but will he be bothered? Would he be prepared to tell her that himself?
Tell her that you will review the situation once you are well again. That she will have to put up with the Home until that happens for your sake. Then back off. Visit yes, but take some days out, 'sorry Mum but I wasn't well enough to come', but unless you really believe that the Home has gone 'downhill' don't take on the complaints. Also, ignore the instruction not to talk to the manager. Mum doesn't have to know. Just have a chat to put your mind at rest. At least find out what Mum is like when you are not there.
Be sensible. You have to stop driving yourself into the ground or your husband is going to have a two problems on his hands - a very sick wife and a complaining MIL.

Re: Leaving a Care Home

Posted: Mon Jan 04, 2016 11:16 pm
by jenny lucas
Great practical advice from everyone. I especially like the 'playing your own ill health' card via 'The doctor tells me I can't.....' etc. Brilliant.

Look, I'm going to be blunt again. You're trying to please her. You're trying to make her happy. Hoping desperately that FINALLY you can just GET HER SORTED so that she'll LEAVE YOU ALONE from plaguing you endlessly to make her happier. She'll just go on and on and on at you, no matter what you do.

It's HER problem, not yours! You've been made to feel responsible for her, and there is absolutely NO reason for you to be responsible for her.

I know it's tough, and harsh, and horrible - but this is HER life. She's had a good innings - you haven't yet. And if you don't put your own health first she could well be burying her own daughter. (That will be your fault too, I expect, and she'll complain you're not around any more to make her happy......!!!!!!!!)

I know you love her, and she probably loves you too, but she's become far, far too used to YOU 'sorting things out for her'. It can't go on, it just can't. She's killing you......

And that is not mother love, it truly isn't. HER first concern should be YOUR health. THAT is what a mother's love does - it cares for our children, not ourselves. If she's in denial about just how dangerously potentially ill you are, then that is HER fault.

Stop sheltering her. Stop pandering to her. Know, please, that if she were capable of being the good mother she SHOULD be, she would NOT be placing these endless burdens of expectation on you.....

I, too, had a 'restless' mum - she spent her life 'trying to get to happy'....and she never managed it, because her unhappiness was inside her.

Re: Leaving a Care Home

Posted: Mon Jan 04, 2016 11:26 pm
by bowlingbun
Belinda, I often say here that mum only has the power over you that you allow her to have. My counselling taught me that. My mum wanted more and more. The counsellor told me I was already doing far more than I should. So are you. Can I give you an idea about mum's house? In my area, the council take over empty properties. They will redecorate them and even modernise them if required, in return for a guaranteed letting term. I investigated this when my brother was ill abroad, but he died before I could set it up. So it means that the council take over all responsibility for the house, so you won't have to worry one bit about it. At the end of the letting term, they then redecorate before giving the house back. This would save you having to do anything at the moment other than arrange for the furniture to be put into store. Food for thought perhaps.

Re: Leaving a Care Home

Posted: Tue Jan 05, 2016 12:36 am
by Belinda_1512
I came back to delete my post because I felt ashamed for grumbling, and found all these amazing messages! Thank you all for your encouragement and advice. I am grateful. Stunned actually. Part of what I needed was a reality check, and seems I'm not being too selfish? It's a difficult balance. My friend is coming to see me in a day or so, and her theme is boundaries. I think she might do me some good. My hubby is so patient, fortunately, and I realise I am being a bit wet about facing up to Mum, she would be shocked! Surprised I felt this way, even! I can't bear unpleasantness, as well as wanting to help her, which is a mix that has brought me here. It's been easier to do what she's wanted than say no, sorry. I see it as a loving responsibility but my own stuff just got put on hold. I am taking tomorrow off. This evening was a bit easier too. I said I couldn't really do anything yet until I've had surgery, and she seemed less urgent, just acknowledging she was absolutely set on leaving and we'll will wait to see what opens up before us. Which sounded like a good holding manoeuvre even if we are not quite on the same page.
As for talking to the staff, I can't hope they'll be very subtle or discrete. One sat with Mum after they'd obviously been talking about her, and asked her whether she didn't think old age was all in the mind. No, she said, and I agree. It's not a pretty ride and it's going nowhere. That's what's made me like this really. I can hope for better times, she can't, so I'd make the sacrifice, not her.
Perhaps a better question would be to ask about the frame of mind with which we consider our circumstances, and that might have come nearer the mark. I was hoping she could be more positive, but the record got a bit stuck at that point.
Night night, and thank you x

Re: Leaving a Care Home

Posted: Tue Jan 05, 2016 9:11 pm
by SheWolf
Hi Belinda,

Welcome to the forum and feel free to offload here whenever you feel the need - you'll find a lot of people here in similar circumstances doing just the same, so you're in good company! :)

I won't repeat the very good advice that others have given above, but will just add that I totally agree with what's been said - your mother should remain in the home, for both your sakes.

I have a fair bit of experience in dealing with care homes now, as my father has been in a residential care home for 2.5 years (dementia and poor mobility), and my mother moved into a nursing home a few weeks back, for end of life care. Dad is pretty content in his care home, although there were times in the first few months where he kept trying to leave, and claimed he was being "held prisoner". Luckily the staff are very kind and the care is good, so he is now well settled and that's a big relief for me. However, no home is perfect and there were some faults/issues with the home during the first few weeks, but I flagged them up to the manager and the owner and most of them were resolved. There is still room for improvement, but on the whole they get a lot more things right than wrong, and Dad's happy there, so I've learned not to fight battles on minor things that don't matter.

On a practical note, I think maybe there are some things you could do to make things more comfortable for your mother, without risking a fall out with the staff at the home, or using up too much of your energy (which is in short supply from what you say). Mum had some issues with her bedding in the nursing home. They don't use duvets (unsure why, maybe due to her incontinence and frequent bed changes needed) and the blankets they use are very thin, so Mum was feeling the cold (despite the heated room). I took in a very soft, fake fur bed throw, and put it on top of the bed. She loved it - problem solved! Of course, it had to be marked with her name (I wrote it in indelible ink on the care label), as it goes in the laundry sometimes, but it makes her feel cosy and is very tactile. So, if the care home has been making cut backs and buying cheap sheets etc, I would suggest you have a chat to the manager and ask if you can bring some nice quality bed linen in for your mother. They will probably agree, but may ask that it is labelled.

As for the lack of drinks being offered, well, the fact there is a kettle in her room but she would rather wait for somebody else to make a hot drink for her speaks volumes! That fact alone tells me that she is already in a mindset where she is happy to let others wait on her hand and foot, so a care home seems like a good setting for her. Is there space for a small microwave in her room? Is it possible for her to have a small supply of her favourite meals/snacks in a tiny fridge/cupboard in her room, so that she has other choices if she doesn't fancy what's on the menu?

However, I suspect that as you solve one problem, your mother will find another to flag up. So, just try to keep some distance, in the way that others have suggested, and look after yourself. You've put your mother first for years, but now it's time to look after you.