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Elderly Mother refusing help from carers

(77 Posts)
sunny123 Tue 10-Mar-20 12:23:18

My widowed mother is nearly 90 and lives alone in a McCarthy & Stone retirement flat. I used to take her to the supermarket with me once a week to get her shopping and that was all the contact we really had apart from giving her a lift for blood tests etc.

A few months ago she started struggling to walk which she said was due to breathlessness and rather than me take her to a clinic for warfarin blood tests it was suggested that a nurse visit her to take her blood. At this point the nurses discovered that her legs were swollen and bleeding and she now has regular nurse visits to bandage her legs.

The nurses have raised concerns with me about how she is coping alone. Yesterday a nurse called me as my mother had fallen over and could not get up on her own. Luckily she had not been on the floor for long when the nurse arrived.

The nurse says that she is struggling to take her medicine and there are tablets all over the floor. The flat is in a very dirty condition. There were feces and urine on the carpet in the hall. All she is eating is ham sandwiches and cakes. She never changes her clothes, she is not washing herself or her clothes.

Clearly she needs help but she is refusing to accept any. If a carer were free I might have a chance of convincing her but she definitely will not pay for a carer to come in and she absolutely does not want to go into a home especially as her savings would soon vanish.

She has a total income of about £200 per week and the service charge alone on the flat is over £1,500 a year so I can understand her concerns over money.

My sister has not spoken to her for 40 years. I am trying to help where I can out of a sense of duty as she has nobody else to turn to but I don't have the time or desire to visit more than once per week. That might sound harsh but there are historical reasons why I maybe should have cut contact with her like my sister has done.

The nurse mentioned something about safeguarding, self neglect and social services to me on the phone and also suggested the state of the flat might be causing health issues for other residents in the block too.

I have no idea what safeguarding etc implies or what could potentially happen next?

She does not like the warden who is on site 5 days per week 9-5 and does not want her to come into her flat any more. Does the warden have a right to enter or can she insist the warden stops going in?

The warden told her I should be going over every day cleaning, cooking etc which did not go down well with myself or my mother. She also told my mother that the furniture needed dusting while she was stuck on the floor yesterday.

My mother would rather everyone left her alone once her legs are sorted out and feels the nurses should not be poking about in her kitchen, bathroom or bedroom without her permission. I know she has a right to enjoy private, family and home life without unjustified interference from public authorities but the nurses have a duty of care and need to raise any concerns they have.

I have no idea what to do for the best. I've tried reasoning with her to get a carer but she point blank refuses. She has had a recent test to make sure she has mental capacity and she does so while she might not be making the best decision she does have the power to make that decision.

I applied for the 2 LPOA's recently but as the Attorney I do not want to get pressured into doing something like sending her into a home if that isn't what she wants.

Any advice would be gratefully received. Thank you.

EllanVannin Tue 10-Mar-20 12:35:06

I gather the flat is owned by your mother ?

Mamissimo Tue 10-Mar-20 12:37:36

Oh golly - I couldn’t pass by without sending you a big hug! Others might come along who will disagree with me but I would contact the warden and discuss your mother’s vulnerability and suggest that as you can do no more but are concerned that she needs a full care assessment.

This will enable both your mother and yourself to see what her care needs are and needs to be done to protect her, you and the other residents. Health care professionals may make her see that her choices are to either pay for and accept help or to go into care.

Try not to feel any guilt - if your mother has capacity she has the capacity to receive the information that this situation cannot continue and she has to make an informed decision about accepting care one way or another because other people’s health and well-being is affected.

She won’t like it but it has to happen! Good luck and cling to the fact that you’re acting in good faith to both your mother, the other residents, and yourself. 💐

dragonfly46 Tue 10-Mar-20 12:46:14

I was in the same situation but then my mother fell and broke her hip. By the time she came out of hospital a care plan was in place. It still took her a long time before she would accept personal car though.

endlessstrife Tue 10-Mar-20 12:47:54

My goodness, this is a difficult one, but the situation needs to end if she is putting her health and others at risk. I know you have nurses involved, but have you contacted social services? She may not like the options you give her, but in these circumstances I can’t see she has any choice. I understand you not wanting to be involved completely, having had issues with my mother, but if I had the means, I may pay for her myself. Is this something you could consider? I wish you all the best💐

EllanVannin Tue 10-Mar-20 12:49:31

The first thing I'd do is let her GP know of the difficulties you've been faced with. Your mother obviously has the mental capacity to know and or realise that how she is living is not only a danger to herself but also others in the surrounding living area.

So long as a person remains compos mentis there isn't a lot you can do if the property is their own.

lovebeigecardigans1955 Tue 10-Mar-20 13:01:47

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.

sunny123 Tue 10-Mar-20 13:04:42

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.

aggie Tue 10-Mar-20 13:12:43

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

sunny123 Tue 10-Mar-20 13:17:26

@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.

Liz46 Tue 10-Mar-20 13:22:07

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

Xander Tue 10-Mar-20 13:33:10

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.

Luckygirl Tue 10-Mar-20 13:37:08

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.

Pumpkinpie Tue 10-Mar-20 13:38:20

Has she applied for attendance allowance to pay for extra care

Bbarb Tue 10-Mar-20 14:07:34

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.

rosenoir Tue 10-Mar-20 14:30:53

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

Daisymae Tue 10-Mar-20 15:25:11

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.

sunny123 Tue 10-Mar-20 15:36:18

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.

ValerieF Wed 11-Mar-20 19:00:03

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.

sunny123 Sun 15-Mar-20 16:56:40

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.

Betty65 Tue 17-Mar-20 21:51:12

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.

ValerieF Sat 04-Apr-20 18:34:35

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.

V3ra Sat 04-Apr-20 20:35:13

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.

Dillyduck Mon 06-Apr-20 11:14:25

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.

Oopsadaisy3 Mon 06-Apr-20 11:28:40

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