Elderly Mother refusing help from carers

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?

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.

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

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.

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..

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.

Do what Betty has said, my MIL was the same , when the ambulance came and took her to hospital the latest time, the doctors said that she wasn’t allowed to go home as she was a danger to herself, my SIL rang around and found a good care home where she still is, we had to throw all of the furniture out as she had moved from chair to chair using each as a loo, she also refused to let the carers in.
Mind you SIL had POA and so was able to take command of the situation ( that all went pear shaped later , but that has nothing to do with this) but she didn’t do it earlier because she said that she would feel too guilty. So, get her in an Ambulance and to the hospital and the decision will be taken out of your hands

I would suggest that you join the Carers UK national forum, you have raised lots of issues, and there are some more to think about! If the nurse is talking about Safeguarding, then ask HER to go ahead with this, so that you don't get the blame! Google "Safeguarding vulnerable adults" for more information.

You say your mum is mentally capable, but the situation she's living in and her reaction to it tell a different story.
No-one can think it's acceptable to live in the mess of their own body waste.

My Mum had Alzheimer's, Dad struggled to cope, neither would accept our suggestion of carers. We all lived too far away to help them ourselves.
Eventually Mum had a fall and ended up in hospital. Best thing for both of them.
She was assigned a social worker, a care package was put in place before she could be discharged and things improved greatly.

Your mum has some savings, what is she saving the money for? Her old age, surely. That time is now.

just wondering how things are Sunny123? Now we have complete lockdown have you been able to sort out your mum in care? I do hope so. Your story was heartbreaking.

I hope this helps - I am going through the same with my mum at the moment, she had a heart attack 2 months ago. She was in and out of hospital 3 times and when she came home it was extremely stressful for me, again it’s just me - my brother lives abroad. The second time she was in hospital I asked that an assessment be done and as a result a care plan was out in place. She had free carers for 6 weeks which was great. At this point I must stress to you, that is you find her on the floor again - DO NOT help her up, have the pretence of a bad back. Call an ambulance - once they come she is in the system, even if they don’t take her in. Also call her Doctor, ask to be assigned a social worker. Not sure how you are coping with the stress but it nearly sent me over the edge. My mum had all the free care but now it’s finished wants to be left alone. She is a danger to herself and nearly caught the grill alight on Friday. She lies about the things she can do and is delusional, she believes she can still do things she used to do before her heart attack. It’s a bit like watching your mother walking on a wall. You know she’s going to fall and it’s going to hurt but there’s a barbed wire fence stopping you from getting to her.

I'm really fed up today so bear with me as I let off steam. Rang my mother today on the way to the supermarket 3 or 4 times to see what shopping she wanted but no reply. I had to get my weekly shop so decided to do that then drop in and see if she was ok.

Shopping was a nightmare (Sainsburys) due to panic buying/mass hysteria with no loo rolls left, no tissues left, empty shelves in the tinned food aisle and queues from the tills half way down the aisles.

Finally took my shopping home then went over to see if Mum was ok. I was hoping she hadn't put the phone down properly so it wasn't actually ringing. I took my son who is 15 as if she had fallen I might need his help to lift her back onto her feet.

We got there and opened the door and could instantly see she was on the floor in the bedroom wedged between a blanket box and wardrobe. We were also hit by a stench, if you are at all squeamish STOP READING THIS NOW.

The hall carpet was plastered with feces. There was also dirty toilet paper everywhere so obviously she had been trying to clean up the mess herself.

We managed to get her off the floor and sat down and I made her a cup of tea. She said she had fallen some time last night.

I made a list of stuff she needed from the shop plus cleaning supplies / gloves I would need to try and clean up the place. She needed loo rolls as I couldn't get her any last week (empty shelves). The first CO-OP I went to I was able to get most of the stuff needed but not everything including loo rolls. Luckily the second CO-OP had some. So thank you everyone who is panic buying toilet paper and disinfectant etc at the moment, you really helped make my day so much easier today.

I dropped my son home as he was upset seeing his Nan in this state and also (understandably) didn't want to help with a poo clean-up. It took me about 2 hours to clean the hall carpet as the feces was dried in. The lounge was a right mess too with tablets, biscuits, crumbs etc all over the place. I keep finding what I think are larder beetles on the floor too.

She has not got any hot water as she won't put the immersion heater on to save money and she can't get into the bath anyway. I fear her lower body is in a state and she needs a wash but there was nothing I could do while I was there.

I didn't sign up for this, I'm only trying to help her out by getting her some shopping every week. She kept blaming the nurse for putting a sock on over her bandaged leg wrongly as the reason for her falling. This is the second time recently that she has fallen over and unfortunately I suspect it won't be the last.

She really could do with being in a home but as she is refusing help and is mentally capable there doesn't seem much anyone can do. I've told her I'm not cleaning up mess like that again and I mean it, I was vey nearly sick doing it.

I have no idea what to do going forward. I'm petrified she will fall over and be undiscovered for days but I can't keep running over there every time she doesn't answer the phone and I can't keep dropping everything to spend hours cleaning up like this. Her reluctance to spend any money shouldn't be making life difficult for me, it is not fair.

Tough situation Sunny. IF your mum is deemed to have capacity then you can't insist on anything. She is entitled to live in her own house how she wants to live. If it was my mum I would just make sure it was clean. I would make meals for her and freeze them.

If she continually falls and social services get involved then they will assess the situation.

No point of you insisting anything to be honest.

Nobody has the right to insist YOU do anything. I gather you don't have a good relationship with your mum? But as you do go and visit, maybe you could clean when you are there? If you don't want to then that is up to you.

Attendance allowance isn't a huge amount t.b.h and if she is refusing outside help, then it won't be any use to you.

Eventually, she may be deemed as not having capacity and then she will probably be moved to a care home where any money or assets will be utilised whether she likes it or not.

Thanks again for all the replies. We have applied for Attendance Allowance already and are waiting to hear back. I have no idea how long these things take.

The nurse called me earlier to see how I got on seeing my mother last night. I told her that mum did not want a carer and the nurse said that she could not do anything to force her to have one. She is calling me Monday to arrange to meet me and my mum next week to see if we can explore any options that are open to us and persuade mum to accept some help.

However, my mum also called me a little later on. She said she is fed up of people coming and going in her flat. She won't have a meeting next week, she wants everyone to leave her alone and if they won't she is moving back to her home town 40 miles away. I'm not sure how she intends to fund moving but she has made her intentions crystal clear now so all I can do is continue calling in with her shopping every week and try to do a little bit of cleaning while I am there. If she gets the attendance allowance I will try and suggest a cleaner and see how that goes down.

I would look into Attendance Allowance as had been suggested. Should allow her to stay in her own home for longer by paying for the care she needs. I would also get in touch with Social Services.

I would let SS take over her care, there does not seem to be anything you can do.

This rings a very loud bell with me.
I had similar problems. After my father died my mother changed her will and left everything to my younger brother - I have no idea why I was cut out, I hadn't upset her as far as I knew and the only reply when I queried this with her was that boys (even younger ones) always got the inheritance . It was up to the daughters to find a 'good' husband.
I visited once a week out of a sense of duty, but as Mum had moved into an annex in my brother's home I considered any 'caring' was down to him and his wife.
She developed dementia and stopped cleaning herself and her home, she became doubly incontinent. She had a cat but wouldn't have a litter tray so it did its business wherever it chose.
She lived on biscuits and sandwiches - ham if she could get it, but jam or syrup or anything that would go between bread slices. My SIL did the shopping.
Her annex was filthy and the stench indescribable.
My SIL gave her cat away and Mother wept.
I decided contact social services and after an assessment, (which I sat in on) two lovely girls came round to give 'personal care' which cost (at that time, I think) £20 per week, but she refused them entry and was, I understand, very rude and abusive. So that was terminated.
Then I tried a private company who would also so some light housework - but she was rude to them too, and sent them away so the company refused to send any more.
I tried a second company and took time off work to be with them when they called. They were wonderful girls, they managed to help her to shower, they washed and combed her hair, they cleaned her kitchen and washed her clothes and bedding.
BUT after a week when I went back to work - she cancelled the agreement and stopped them. She also raged at me for interfering and told me to never darken her doorway again.
She lived in squalor until she was 100, but eventually had a fall and broke her hip. She caught a cold in hospital and died of bronchitis.

Thats a tragic tale to tell anyone in your position and I'm sorry. All this was 10+ years ago so hopefully there's someone who can advise you now. The only helpful thing I did was to 'be there' when the carers called so I could make sure Mum didn't refuse them admittance. Perhaps if I'd been able to take more time off work to make sure she 'behaved herself' she may have come to accept them.

Has she applied for attendance allowance to pay for extra care

If she is refusing the help she needs and is deemed to have the mental capacity to decide she does not want care, then sadly there really is nothing you can do.

If her behaviour is putting other residents at risk it is up to the warden to report back to her superiors and let them decide what action they should take.

No-one - warden, district nurse or whoever - should be telling you what you must do.

If you do not have a close relationship with your mother, then please do not get manoeuvred into becoming her carer. It is a very difficult task even if it is for someone you love.

Contact social services for an assessment - they will consider her mental capacity.

Warden has no right to say at any time what you should be doing. That really angers me when someone makes statements like her. Aggie NO care is not free in England unless you have less than a certain level of savings(less than £23,250) more than this and you have to self fund. Also as mother has capacity you can not make referral to Social Services unless she agrees. Health and welfare LPA can only be activated when she no longer has capacity.

It sounds as though she might qualify for Attendance Allowance which would perhaps pay for a cleaner.

@aggie I don't know the criteria for getting free carers? She has about £60k savings. Even if they were free I would still need to somehow convince her to accept.

Surely she is entitled to free carers? Maybe the assessment would convince her

Thank you for the replies. She does own the flat herself. If I have to visit her as I did yesterday after her fall I only go in the evening or at weekends when the warden is not around as I do not like the warden either. Apparently none of the residents like the warden.

I cannot afford to pay for her care myself. I am a single parent, run a small business for a living and I have very limited time and funds.

The whole subject of care for elderly people is new to me and it feels like a minefield.

If she has a care assessment I am assuming the outcome will be recommendations as to the levels of care she needs? If the answer is carers or a care home then she will point blank refuse.

It's difficult, isn't it? My late MIL was in a similar situation. She needed help but didn't want help. The burden fell onto BIL and he had to eventually and reluctantly arrange for a care home which she didn't like but she simply couldn't stay at home any longer.
It sounds like your mum is a danger to herself or others and in the old days this would have meant having to be sectioned under the mental health act which is obviously a last resort. You have my sympathy.