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Care & carers

Coping alone

(29 Posts)
Ethelwashere1 Wed 12-Jan-22 08:01:20

My mother, 90, has recently returned from hospital, im the only person to keep an eye on her.
She has refused help from anyone, shes on oxygen so is limited physically. Her condition is heart failure and recovering from pnewmonia. My problem is that as shes mentally ok, everyone has washed there hands of her. I tried social services but shes nit entitled to any care.
When she left hospital, i wasnt asked if i could look after her, i wasnt given an6 instructions. Now after over a week, shes had one doctors phone call, call from social services to say they cant help her.
I live nearby but cant cope with her housework, im exhausted doing my own. Im off on sick leave with this super cold so i can visit but i wear my mask so she says she cant lipread. She has expensive hearing aids but refuses to wear them.
My visits always degenerate into a row as she wont try anything to help herself, she makes snack meals, says if i bring anymore food she wont eat it. Occasionally she cooks veg in her microwave but not allowed to fry as shes on oxygen.
The negativity just drains my energy before i get in the door knowing everything i do or say is wrong. I know it must he frustrating after being active. The other worry is that no one checks her heart or other medical signs, she has high bp. Im just left with battling every day. Any advice

Oopsadaisy1 Wed 12-Jan-22 08:30:40

It sounds as though you or your Mother will have to pay for care. I’m surprised that she wasn’t sent home with a ‘care package’ which usually lasts for 6 weeks which usually gives you time to organise care.
Sorry but you will have to be firm and tell her that carers are coming in and that’s that.
Have a look at local care companies online, I’m sure you can get something organised quite soon.

Dickens Wed 12-Jan-22 08:58:52

I'm also surprised she wasn't sent home with a care-package. Clearly she's ill if she's on oxygen and suffering from heart-failure. This just doesn't seem right.

I think maybe you ought to be either talking to her doctor, or to your own - from your post it appears that the call from the doctor was made to her and, given how you've described her, she might well have given him / her the impression that she was coping on her own.

You may end up having to pay for carers to come in - or she will - but it's obvious you're not going to be able to cope otherwise.

I'd start by making a call to your own GP and let him know that you are literally unable to cope and ask him what you should do. If that fails - you can request to talk to her GP, he may not actually discuss her case with you, but he needs to know that his patient is, basically, in need of some form of care at home. Get the ball rolling, at least that way you can start to plan a course of action. If your mother spoke to him it's quite possible she allowed him to think everything was fine and dandy - he needs to know that it's not, and that you have not been given any instructions regarding her oxygen management or care.

Social services will always try to fob you off, but if her doctor gets involved, they won't be able to do that so easily.

I sympathise with you. What a terrible state of affairs. Elderly people are simply being pitchforked out of hospital and left to get on with it because the NHS and the care system is totally overwhelmed and underfunded.

Make a decision to make that call - or those calls - at least you will feel more in control of the situation, don't just struggle on, you can't manage this on your own.

Ethelwashere1 Wed 12-Jan-22 09:04:39

I have talked to her doc, she rang my mother who was cheerful and saying she could cope. The hospital sent her home after she refused a free care package. Social services said that if you refuse in hospital then you cant change your mind later. There must be 100s of people who think they can cope but when they get home find they cant. This is so unfair.

Ethelwashere1 Wed 12-Jan-22 09:07:01

Oopsadaisy, the law says you just cant tell anyone they are going to have car workers if they dont want anyone.

Hetty58 Wed 12-Jan-22 09:18:50

Ethelwashere1, this is awful for you - but remember that you do have a choice. You simply shouldn't be expected to take on the care of a poorly 90 year old, nobody should. It's already too much for you.

Arrange care as your first priority, privately - or through social services (you need to be persistent, dramatic, determined and hound them, though).

I would think that residential care might be more suitable than care at home, going forwards. Your mother may well be a danger to herself at this stage.

(Last resort, at your wit's end and desperate - then just call an ambulance.)

aggie Wed 12-Jan-22 09:28:46

Maybe the care package was taking too long to set up , it’s hard to do with this virus , and your Mother was fed up and anxious to get home ?

Germanshepherdsmum Wed 12-Jan-22 09:42:13

I feel so sorry for you Ethel but please don’t resort to calling an ambulance as suggested, it might be needed for someone in a life or death situation.
Would you be able to afford a visit by a carer as an experiment, to see if your mother might be persuaded to accept it? Maybe you can get your mother to understand that if you don’t have help looking after her and doing her housework etc (at her expense as she can obviously afford it if she doesn’t qualify for free care) then you are going to become ill yourself and unable to help her? You sound as if you’re run ragged. Old people can be terribly selfish.💐

Ethelwashere1 Wed 12-Jan-22 09:47:56

My mother was discharged on 30dec. I was given a few hours notice. She assumed she could manage and refused care package. I was told the window is closed she must pay for help. As she is in sound mind she cannot be made to accept help and if she does she must pay. She doesnt want help and wouldnt pay. I think she just thinks i can do it all. I cleaned and tidied kitchen and shes annoyed. She cant find things. Ive been told never to touch her kitchen again. We just end up shouting, this cold bug has really annoyed me too, i disnt need this.

Dickens Wed 12-Jan-22 09:50:44

Ethelwashere1

I have talked to her doc, she rang my mother who was cheerful and saying she could cope. The hospital sent her home after she refused a free care package. Social services said that if you refuse in hospital then you cant change your mind later. There must be 100s of people who think they can cope but when they get home find they cant. This is so unfair.

... as I thought. Typical of the 'independence' many elderly people think they have when, in fact, they are placing a burden on their family / friends / neighbours. No disrespect to your mother - we all want to be independent - but this is just not on. She clearly cannot cope well enough and you're bearing the burden and the brunt of her exasperation. She's refused the care package because she's assumed you'll take care of her.

You must talk to your own doctor and let him know you feel unwell and cannot cope and explain how your mother has fooled everyone into thinking she's managing well on her own.

I think you also need to be firm with your mother - difficult I'm sure, but what's the alternative? I'd also question whether it's actually true that once having refused a care-package that it can't be reviewed at a later date. That seems ridiculous - what if your mother took a turn for the worse? As another poster has said, I think you'll have to be determined and persistent with social services.

The bottom line is that your mother needs help - more than you can or are able to give. She will have to accept that carers are going to come in at some point. The alternative is you becoming ill (more than you are already) and being laid up yourself completely unable to care for her.

A neighbour of mine had a similar problem with his 90+ year old father who refused to "have strangers in the house" and ended up calling on his son (my neighbour) at all hours of the day and night. He was trying to hold down a job and look after his daughter who had health problems. In the end, he took the bull by the horns and told his father that he was not going to put up with it and that he (father) would have to fend for himself or allow carers in. When faced with the stark choice, he accepted the inevitable... and got on absolutely fine with most of the carers who came in.

Germanshepherdsmum Wed 12-Jan-22 09:54:09

She sounds impossible. Could you feign illness for a week or so (much more of this and you won’t need to pretend) and see how she gets on? Make sure she has enough food to keep her going while you’re ‘ill’. Might make her confront reality.

Daisymae Wed 12-Jan-22 09:55:21

If she's of sound mind then there's nothing you can do. I would be inclined to leave he be until she asks for help. Call the GP and social services and tell them the situation. Maybe you could get some help for yourself? What about some help with your cleaning etc? Pop in now and again for a cup of tea and take a step back. I don't see that you have any other choice.

luluaugust Wed 12-Jan-22 09:56:31

Maybe don't take any food in for a couple of days, just check there are snacks she probably can't face bigger meals I remember my mum at 90 only eating certain things. I am afraid you will have to start paying for home help if you can find any. You have to make it clear to your Dr, her Dr and Social Services that you can't cope and that she is not telling the truth.

Germanshepherdsmum Wed 12-Jan-22 10:03:50

I doubt social services will get involved because she doesn’t qualify for free care and they are stretched enough with those who do. We know mother can afford to pay for help but don’t know if Ethel can (not that she should have to).

maddyone Wed 12-Jan-22 10:30:27

Oh dear, another of these very difficult cases. At 94 my mother finally accepted the inevitable and agreed to live in a care home. It took three falls, three hospitalisations, Covid, three bleeds to the brain, a bedsore that refuses to heal, and a broken shoulder before she agreed.
I don’t know what to suggest. I’m really sorry for you. You’re in a terrible situation.

H1954 Wed 12-Jan-22 10:47:07

All too often patients are assessed by OT and/or SS in hospital prior to discharge and if the patient isn't totally honest during the assessment then nothing suitably supportive will be put in place.
I went to visit my mum some years ago when she was in hospital, as I arrived the curtains were drawn around her bed and a nurse said it was ok to wait as it was the OT assessing mum. I heard the conversation and was very alarmed to hear Mum claiming to be able to do everyday tasks that she had certainly NOT managed to do for several years!
As the OT opened the curtains Mum spotted me and was very coy to say the least, I asked to speak to the OT in private and filled her in with the truth. She immediately tore up Mums assessment form and started again.
If you have a parent or relative due for discharge please make sure they have been assessed correctly and ask to be there if possible.
Mum was eventually discharged with an Intermediary Care Free of charge for six weeks, this enabled me to research for a suitable care package tailored to suit her needs.

Hetty58 Wed 12-Jan-22 10:57:02

Social Services have a duty to help everyone (not just those who can't afford to pay) - so should, at least, offer advice. They will try to wriggle out of it, though, unless nagged.

Ethelwashere1, your mother, it seems, has refused the standard, six week 'rehabilitation' package on discharge, so has missed that boat. There's still the question of her ongoing care.

Germanshepherdsmum, I stand by my suggestion of an ambulance - as a last resort. Look at maddyone's post. It could well be a case of 'a stitch in time'!

I'd say that a 90 year old, with heart failure - and HBP that's not being monitored - counts as a medical emergency any day!

62Granny Wed 12-Jan-22 11:47:03

Your local council/ social services should offer you as a carer a carers assessment which are about your needs you can ask for this and they have to give it to you . They can then work with you to put thing in place to help you. Older people often have elevated expectations of their abilities and honestly don't realise how little they do, one suggestion could be someone else being there when you visit they can then chat to her and distract her for you whether this is a carer or friend can be up to you. Do you have to clean daily for her would it really matter if it is just kept to once or twice a week for now. Can you arrange a private cleaner to start for in a month or two and you could take you mum out for an hour while they are there. I found sitting my mother down and explaining things from my side , saying I could not cope long term and I needed help and also I explained it as "I am ill what will happen then" you have got to be tough with her she sounds a very strong personality they don't live this long without being strong willed. Get her to actually say what she does for herself e.g is she able to wash and dress herself? Plan and prepare a simple meal, do any of the tidying up/ cleaning , get shopping from the shop or delivered ? I bet she can't do all / any of these. Phone her GP again register with them as her carer and ask for them to follow up on her care , it might mean regular blood tests or telephone conversation but hopefully you can be there when they ring then you can put in your point of view, do not let her say "I am fine and don't need any help" as that is probably what she does say, but anybody who has any dealings with 90 year olds know they only cope with help from others

Daisymae Wed 12-Jan-22 11:56:41

The issue is that the OPs mother is refusing all care. It can't be forced on someone, which seems to be the crux of the problem.

Hithere Wed 12-Jan-22 13:57:08

I know people will jump at my jugular for this comment.

OP,

Your mother made her decision at the hospital and she is the one who has to cope with them

I understand she is not well but mentally sound -you cannot make her do anything

She thinks she can cope by herself? Let her try, stop enabling

Prioritize your mental health - I would not offer any additional help unless she learns to appreciate what people do for her

Yes, it is hard to get old but it is not an excuse to abuse anybody or feel entitled to anybody's time.

threexnanny Wed 12-Jan-22 14:12:36

I agree with HITHERE. I have a friend who is in a similar position with her partner who is very ill. He calls all the shots on who comes in to help. If he lives much longer it will kill her!

greenlady102 Wed 12-Jan-22 14:28:40

Hithere

I know people will jump at my jugular for this comment.

OP,

Your mother made her decision at the hospital and she is the one who has to cope with them

I understand she is not well but mentally sound -you cannot make her do anything

She thinks she can cope by herself? Let her try, stop enabling

Prioritize your mental health - I would not offer any additional help unless she learns to appreciate what people do for her

Yes, it is hard to get old but it is not an excuse to abuse anybody or feel entitled to anybody's time.

sorry but this. Honestly it sounds like she doesn't want your help either.

eazybee Wed 12-Jan-22 15:54:06

My father, over ninety, was exactly the same and refused all help; I lived 170 miles away and couldn't check regularly on him; he was found wandering one evening and was, after a struggle, with him as much as the authorities, admitted to a nursing home.
All you can do is check on your mother regularly to ensure food and clean clothes are available and she is eating a keeping clean.. Ignore the cleaning and everything else and don't get drawn into arguments; your mother is bullying you when you are trying to help her, and nothing will alter her mind until she is ill again.
Absolutely horrible for you; make sure social services and the doctor are aware and monitoring the situation.

AreWeThereYet Wed 12-Jan-22 16:19:48

Typical of the 'independence' many elderly people think they have when, in fact, they are placing a burden on their family / friends / neighbours.

This is so true - my own DM is exactly like this. She thinks that independence is all about being able to do what she wants, regardless of the fact that she can barely walk and won't use any aids or have any fitted and has people running all over the place for her. My sympathies Ethelwasherel, I hope you can get something sorted.

Katyj Wed 12-Jan-22 18:29:52

Hi Ethelwasherel. I have a 90 year old poorly mum too, it’s not easy 🙄 You can go online and ask for a social services assessment for your mum, this could be by phone , as mine was or they may visit. If she has savings then she will have to pay towards the cost,they could then get occupational therapy involved, they would provide aids to help her live independently.
Does she have an alarm to summon help if needed ? This can also come from ss.
My mum was in hospital after a fall, they wouldn’t discharge her without carers 3 times a day, she reluctantly agreed because she wanted to come home, they’ve been a godsend although she constantly complains about them 🙄
If your mum still refuses all help. Your going to have to resort to tough love. Only visit a couple of times a week. See how she gets on, might make her realise. Good luck.