Elderly Mother refusing help from carers

Sorry I haven't replied sooner everyone.

@ValerieF Mum has been in a care home for 2 weeks now. The Nurse / Social Worker put extreme pressure on myself and mum to make her agree to go into care. The nurse told her it was free as she knew Mum would not agree to go if she had to pay for it. She also told her it was just for 2 weeks, knowing full well it would not be and now 2 weeks is up. The social worker hinted at blackmail regarding my LPOA application when I would not condone her lying to my mum as well.

@V3ra Yes, mum has some savings, more than £23k but not a fortune. The care home is £550 per week and she is not at all happy paying it. As an example, when I used to take her to the supermarket she would only buy certain products if they were a maximum of £1 as she did not like spending. That is her mentality and I will never be able to change it.

As an update I spoke to her on the phone tonight which is difficult as she is a bit deaf. I am not allowed to go down and visit in person with this lockdown. She is saying she cannot afford to pay for the care home and wants to leave. She has been recently tested for mental capacity and is ok. As she is self funding I don't think the care home can force her to stay.

I really do not want to get roped into this. If she demands to leave and asks me to collect her and take her home would I be making myself responsible/liable for her in some way? I am the only family she has so it is me she is asking to help get her out of there. I don't think she will be able to manage at home and she won't pay for a carer. I have tried explaining this to her - that she needs to be able to get herself to the loo and to the kitchen etc but all she cares about is the money.

The people at the care home have said I should speak to social services as she has limited mobility and they can't let her go. I don't really want to speak to them but I will have to on Monday.

Meanwhile I have been trying to dispose of two urine soaked settees. The Council tip is closed so I've been cutting the foam up and putting it in black bags then into the bins at the retirement flat. It absolutely STINKS but I have no other choice. The warden at the flats is power crazy and there are signs all around the bin room warning you what you can and cannot do. She would go nuts if she found out what I am doing but I only go over after 17:00 when she isn't there so hopefully she won't start opening all these extra bags that are suddenly showing up in the rubbish.

Lastly we had a letter a few days ago saying they were still sorting out the Attendance Allowance claim but she is not receiving anything yet. If she was then I could at least point out that this extra money could be used to make life easier either for a carer or towards the cost of a care home.

Sorry for the long post, I have nobody to moan at apart from the kids and they're not the best listeners.

It's an awful thing to say, but I think the best thing to happen would be if your mum had a fall and wasn't fit enough to go back to living on her own, in which case she will have to move to a care home whether it suits her or not..

sunny123 this situation would be hard enough to cope with under normal circumstances, it's even worse for you now.

Your mum is sadly not happy where she is, but try to hold onto the fact that she is safe and being cared for.

Do you like and trust the staff at the home?
Unless you have serious concerns I would say that your mum needs to stay there, at least until the attendance allowance is in place and you've spoken to the social worker about a care package to support your mum if she returns to her flat.

Your mum cannot expect you to do all the care yourself and you mustn't even consider it.

Hello sunny 123. My mother is 89 and very independent. I am fortunate because she is still able to care for herself with some help. She lives in her own bungalow and has Attendance Allowance. It is about £85 a week and it is surprising how far that can go in helping keep her independent. She uses it to have a cleaner weekly and a gardener fortnightly in the Spring and Summer. She has a hairdresser who comes to the house weekly and a chiropodist comes when she needs him as she is diabetic. This would be free if she went to the local clinic but it is more convenient to have someone come out.

The old can be very funny about spending money but I kept plugging away at this being 'extra' something she wouldn't have if she didn't need it. My mother, like many old people, is a bit anti having carers and so far, by using the allowance sensibly she hasn't needed them. We have kept a quiet eye at first on the people coming in and they are all lIovely. They get the work done and enhance mum's week with a bit of chat about their lives and families.

I realize that you have a much harder row to plow as mum ended up quite amenable and was not in your mother's situation.

Maybe getting the Attendance Allowance and seeing how far it can go to helping your mother's situation might be a way forward. Good luck

Also when mum had a fall and broke her hip someone was sent from the hospital before she could go home to see what might be needed to keep her safe. They put support handles on her front and back door, a seat in her shower and a device to help her lever herself out of bed. I think they are prepared to help with these things as it is much cheaper than looking after someone in a care home. She also has her prescription medicine brought to her home in a pack which separates it into morning afternoon and evening. You may or may not know about these things but they all help a bit with a level of independent living if she is capable of it and of course if she is willing to give it a go.

Sunny123, if your mother has to return to her flat there are some adaptations that might possibly help if I may suggest them.

Remove all the carpets and put in washable flooring, I guess the hall carpet is on the way from her chair to the bathroom and it's no wonder it gets dirty. I'm 88 and sometimes don't make it to the toilet in time but I don't worry as all my floors are washable, which is especially good as my dog too is occasionally incontinent.

It can be a long walk for her in her condition so , belt and braces, get her commodes placed right beside her chair and her bed. The local authority occupational therapist should provide that free of charge. They might also pay for hygienic flooring.

The sofa need to be covered in plastic and a large sheet or blanket.

I wondered also if you could replace whatever clothing might be awkward for her. Things like house coats and long cardigans that fasten down the front are easier than things that have to be pulled over the head especially with incontinence. She might also manage better if she does not wear trousers.

I guess the heating in the sheltered flat is not a problem?

It is a good thing she likes sandwiches as that means she does not need to use the cooker, and sandwiches are nourishing . Maybe she would take milk shakes if these were left out for her.

Is she taking enough fluids? If not she might get a urinary infection which can make her confused and consequently bad tempered. Does she like any fizzy drinks ?

I am wondering about her incontinence. The nurse should be aware that constipation can cause incontinence. Could you ask the nurse or doctor about if she is has impacted faeces?

PS I suggest the time for reasoning with her is over. If she can hang on to her privacy in her own flat she will be doing well. I hope you get the power of attorney.

but the power of attorney will only come into effect if when she is judged to lack capacity to make her own decisions. and the capacity has to be judged for each decision. for example a person may not understand the value or use of money, but may be able to express a wish to live somewhere, what to wear or eat, who to meet.
anyway this academic for OP at the moment.
is there any way you could do a deal with her, that you will only co-operate with her coming home if she accepts a careworker once a day. put it to her like a personal assistant.
of course she will have to pay for it, about £20 an hour from an agency, half that if you can find a freelancer that you trust.
you could couch it in terms of her safety, needing someone to check on her once a day, help with her medicine etc.
she may be sensitive about the cleanliness and continence issues. also she should have been referred to the continence service so that she can get continence products. these are a great help, although nowadays they only supply the bare ! minimum. but if she could try them, and find the benefit they bring to her cleanliness and dignity, then maybe she might even invest in some further supplies herself. a good careworker would know how to put this to her.
i wonder has she been using continence pads in the care home.
it is a very tricky situation. esp if you have not been close.
i read that some council tips were re-opening. check their websites. good luck.
did you have another thread about being annoyed at the behaviour of nurses/ social workers, if so i sympathise.

Thank you again for all the replies and suggestions. I will go through and reply to individual points later this morning. This whole situation is really getting me down and piling stress on top of me at the worst possible time. I won't elaborate too much but I am watching my small business going down the pan due to this coronavirus lockdown and I also have other issues at home which I won't go into.

I hardly slept last night as I seemed to have a moral dilemma constantly going around in my head namely:

1. Mum has mental capacity.
2. She went to the care home of her own free will BUT we were both lied to so that decision was made based on false statements designed to pressure us into agreeing. For example the nurse said that if she did not get into a home that same day she might die of Sepsis that night
3. She is asking to be allowed to go home

As she has mental capacity and wants to leave then preventing her from going home sounds like deprivation of liberty to me?

She was pressured into care as it seemed to be in her best interests. Under normal circumstances this would be true but according to the boss of the UK's largest care home operator up to two thirds of care homes in the UK have recorded coronavirus cases so there is a REAL 66% chance that she has now actually moved out of the frying pan and into the fire.

I know one member of staff at the care home is currently self isolating but I do not know if anyone else there is doing the same or has been ill.

I don't know whether to agree to go collect her and take her home where she will be unable to cope very well or leave her in the home. If I do the latter I would feel as if I am assisting in depriving her of her liberty and if she should catch coronavirus I doubt she would survive.

Helping her leave the care home sounds like such a wrong thing to do but if she is dead from coronavirus in a few weeks time I wouldn't be able to live with myself.

Sunny
You want to do what is best for your Mum, if she wants to come out of the home, then it will be Your responsibility to care for her, she will see more potential Covid carriers having carers in and out each day than she probably will in the home, at the moment she is safe, she is being looked after.
I understand your difficulties as we were in a similar position.
We also had to lie to MIL, but she has had to accept the fact that none of her children are young enough and fit enough to offer 24/7 care.(Dementia is a godsend really at the moment)
If your Mum goes home, she will have to drink regularly to stave off urine infections, she will not be able to use the furniture as a loo and when the carers aren’t there who will make sure she is doing this?
I think you have to get your head around lying to your Mum and keeping her safe or accepting that you will have to care for her.
Covid is an extra burden, at the moment she is the responsibility of the care home , if she catches it in her home it sadly will be on your shoulders. It really is a heads you lose and tails you don’t win.
Write a list of pros and cons, if the only ‘con’ is that you are lying to her for her own good then you will have your answer.

Sunny, feeling guilty about a dead person is quite common. Remember it's not your fault your mother became old and disabled. It's not anyone's fault.

Whatever anyone does for your mother will be , at best, the least bad solution.

Three of my elderly friends died quite recently. All were in their right minds and knew they wanted to return to their own homes after hospitalisations for various illneses. Their final returns home were disastrous according to friends who lived where they did, and they were carted back to hospital. One friend said her doctor in hospital had told her she would never be able to go home (and she understood this).

I am suggesting your mother's return home would be temporary but if she insists on it all you might do is small adptations to make her stay at her home more feasible and more comfortable.

@V3ra

Do you like and trust the staff at the home?

I have never met them or been to the home as I am not allowed to due to the lockdown. When I call I usually end up speaking to a carer who's English isn't the best and who can't help with my questions, they keep telling me to contact Social Services. Mum seems to be getting decent care though so I have no concerns in that area.

Unless you have serious concerns I would say that your mum needs to stay there, at least until the attendance allowance is in place and you've spoken to the social worker about a care package to support your mum if she returns to her flat.

A care home is the best place for her no doubt although the corona issue is worrying me. The problem I have is Mum is obsessed with money and does not want to pay for carers or for a home. I have thought of a strategy which I will describe below.

@52bright

She also has her prescription medicine brought to her home in a pack which separates it into morning afternoon and evening.

My mum has those too. Her eyesight is poor and her fingers are twisted and arthritic. I have picked up so many tablets from the floor etc it worries me that she isn't taking them half the time.

@Alexa

I could get vinyl flooring put in as you suggested. The problem is at the moment I have no way to get rid of the old carpet (the local tip is still shut indefinitely) and I won't find a shop open to buy new flooring.

@welbeck

She has mental capacity so when the LPOA comes through it will not give me any control

I am going to struggle to answer all the points people have made, this would be a very long reply if I did. I do appreciate all the suggestions though thank you.

Going forward: I have just created a spreadsheet with Mum's income from different pensions and chopped it up into a weekly total. The care home at £550 per week is costing her £284 per week out of her savings. If she gets the full attendance allowance of £85 per week that drops to £200 per week. I believe the flats where she lives/lived rent out for £440pcm so that figure would then drop to around £100 per week.

This is obviously all assuming she gets attendance allowance and I can rent the flat out for £440pcm with no gaps etc. I won't be able to sort out the flat ready to rent until after the lockdown and she will have to pay for new carpets and so on plus I will need to store / dump what is in there.

I am going to speak with her and tell her I believe the home is the best place for her and that if it only costs £100 per week from her savings then that isn't bad really.

I won't lie to her though. If she insists that she wants to go home then I will tell her she has to let the care home staff know and ask them to arrange a taxi/transport to get her back home. I don't want her released into my care or anything like that as I am not going to be responsible for her care if she is making a bad decision. I do not know if the care home would let her go or not.

Certainly my Mum could not be discharged from hospital until an appropriate care package and aids had been arranged.
Your mum won't like it but it's the old "It's for your own good" scenario, isn't it?
None of us wants to get old and infirm.
When I did homecare the people who coped best were the ones who accepted the reality of their changed circumstances and needs.
Best wishes x

Looks like things have changed again. I called Mum this evening, I was ready with my spreadsheet in front of me to explain how the care home is the best place for her to be and that I could help make it affordable by renting her flat out. I didn't get that far. She has told the staff she is leaving after her leg has been bandaged again so next Mon or Tues and she reckons that they are happy to let her go as she is mentally capable, self funding and in there of her own free will.

@Oopsadaisy3 you said it would be my responsibility to care for her if she moves home. I do not think that is correct. No adult is legally responsible for any other adult. She has mental capacity so even when the LPOA comes through I cannot override any decision she makes. She has made the decision to leave care and the responsibility for her care does not automatically fall on me because she is my parent.

I've spent an hour again today trying to break up a urine sodden armchair. There is still a two seater to be gotten rid of but the bins at the flats are getting full so I will have to leave that for now and do it bit by bit once the bins have been emptied again.

Monday I'm going to have to try and get a waterproof orthopaedic chair for her. I've found one online which is in stock at a company that is still open despite the lockdown so if they will let me come collect it that will be a four hour round trip for me. At least she will have something to sit on.

I'm not answering the phone to any withheld numbers next week as the only withheld numbers I've been getting calls from recently have been nurses and social workers and I don't want them hassling and pressuring me about someone I am not responsible for. I've completely had enough of the whole sorry state of affairs at the moment.

I am assuming the care home will contact social services to inform them of her intentions to leave but I don't know what they will do. I understand they have a legal obligation along with the local authority to protect her from self neglect so presumably they will try to do something.

a couple of suggestions, from my experience.
can you set your phone to record any conversations with ss/nurses. can be useful for later if proof needed of misleading statements / pressurising etc.
try looking for other local authority tips that are nearby; some of them may be open, govt has asked them to re-open.
some shops that sell hardware/ tools may also sell vinyl tiles.
would you be allowed to rent out the flat; many retirement flats have restrictive covenants forbidding this.
could you put it to your mother that the best way for her to get ss etc off her back is to agree to a careworker, just a minimum, say one hour a day, so that they cannot say she is at risk, being without any daily support/ assistance. otherwise they will keep hassling her.
tell her it is the least worst option. and a lot cheaper than care home, where indeed i agree, it may not be safe, at the moment.
one careworker is a limited risk. multiply that by ?20-30 different workers in and out, poss in contact with their friends/ families, the risk i see as greater, everything else being equal, and possibility some of the residents may also be carriers.
if i were you i would go for one careworker, and a stand-by, visiting her flat once a day. you could look up local to her self-employed ones. the less travel the better. if you find one, they can often suggest a stand-by to cover. good luck.

I have been through all this with my daughter.
First capacity can only legally jibe decided by the Court of Protection
Next do you have POA for her finances? Iif you do use it, look at your mothers finances and see if she is able to afford carers coming in and arrange it. Be there when the carer arrives and tell your mum its either a carer or a home. and help your mum get use to the carers.
Finally look at getting a Call System in place, my daughter wears necklace which send an alarm to the call centre if she falls, she doesn't have to activate it. They in turn will call you and you can arrange for an ambulance and they will do the lifting.
Its a great of change for someone use to living their own way, but if you can be firm but reassuring that you will still visit I think things might work out. Bye the way, Safeguarding is a meeting with everyone involved in your mothers care, Dr, SS, your self and anyone else who helps as well as your mother. They will discuss how she is managing or not and ways to help. They will try to talk your your mother into accepting the help and they are very good at doing this. So maybe give it a try.
Anyway all the best and I hope it gets solved.

@welbeck

can you set your phone to record any conversations with ss/nurses.

No I've looked into this before I have an iPhone 5c and you cannot do this. I do have a dictation machine and if I take a call in the car I can record it.

try looking for other local authority tips that are nearby

Going to do that now thanks.

some shops that sell hardware/ tools may also sell vinyl tiles

It's one thing buying vinyl tiles but I would have to move loads of furniture, rip up the carpet and underlay then I wouldn't know how to lay tiles. I'm not sure that would work for me.

would you be allowed to rent out the flat

Mum told me some people in the building are renting for £440pcm so you must be allowed to. I would have to check with the landlord I guess?

could you put it to your mother that the best way for her to get ss etc off her back is to agree to a careworker, just a minimum, say one hour a day

I will do my best but she has consistently refused due to the cost. I wish the Attendance Allowance would come through as that could help persuade her.

@Barmeyoldbat

First capacity can only legally be decided by the Court of Protection

I did not know that. Do you think Social Services could try and get the court to say she does not have capacity and maybe use a Deprivation of Liberty to stop her leaving the care home?

Next do you have POA for her finances?

No but I have applied and am waiting for it to come through. That wouldn't permit me to employ carers using her money if she has mental capacity though would it? I can't afford to pay for carers myself.

Finally look at getting a Call System in place,

In the flat where she lives there are pull cords everywhere. Not perfect as if she falls and can't reach a pull cord she is stuck and that did happen once.

I am at the end of my tether today. Hardly slept last night with worry so going to bed early tonight and will reflect with a fresh mind tomorrow.

If yòur mum has that amount of money in savings she will be expected to pay for her own carers. I'm pretty sure the amount people are allowed to have before paying for care s around 23k but cannot say for definite.

@H1954 yes, that sounds about right or £23,250 I think the precise figure is.

However expecting her to pay and convincing her to pay for a carer are two completely different things. She is very obstinate.

I'm going to have to try and make her understand that she needs to get social services off her back by accepting some care paid for by herself or else she could end up back in a home again, maybe against her will and that might cost a lot more than the £550 per week she was just paying.

Sorry for your difficult situation. Just one small point; you and your Mother do realise that if she discharges herself from the care home, returns to her own flat, that you will not be able to visit her or help if she falls? To be frank, your Mother would be safer, to my mind, where she is, with regular carers. No care home will call her a taxi for her to go home to an empty flat with no care, no support.

The call system my daughter has is independent of the call system for the warden. If she falls she doesn't have to do anything, it will activate call to the call centre and everything just falls into place. Applying to the Court of Protection will cost you or our mum and it does take some time I am afraid. If she is in hospital because of a fall they shouldn't really discharge her until a full care plan is put inplace.

@GillT57

you and your Mother do realise that if she discharges herself from the care home, returns to her own flat, that you will not be able to visit her or help if she falls?

Sorry, I don't understand why I would not be able to visit her if she moves back into her own flat?

No care home will call her a taxi for her to go home to an empty flat with no care, no support.

I don't know, I am just reporting what she told me on the phone tonight. Could they have told her she can leave to stop her pestering them for a few days and buy some time until they can speak to social services on Monday?

Perhaps I should call them tomorrow and IF I can speak to someone with some authority they can confirm or deny this before I waste my time doing a 4 hour trip to buy a chair she may never use.

I think you need to break this down into manageable steps.

Firstly call the home and find out exactly what is going on.

They'll hopefully be able to advise you, too, because they have encountered these types of situations before.

@MissAdventure Thanks. I will call them tomorrow from the car then I can record the conversation on my Dictaphone or maybe on one of the kids' phones. I might upload it to youtube and post a link if I need advice following on from that conversation.

I'm not sure on the legality of recording someone without their permission, but either way, keep a record of who you speak to, and make clear that you can't take over your mum's care.