Refusing care

[LadyBeagleEyes]

So what can I do.
I'm sixty miles away and can only get in about once a fortnight. My sister lives close but works full time.
We managed to get her full time care (Scotland) but she alienates everybody, so she no longer gets a bath and gave up her lunchtime calls because she doesn't eat lunch (she says, but will eat it if me or my sister make it)
We can't force her to accept care, she's now incontinent, and there seems to be nobody to turn too, how do you force a stubborn old woman, with possible dementia to accept the help that's being offered?
She's 80, housebound, she has a zimmer, and has had a couple of falls which ended up with her in hospital (She's got one of these on call things round her neck).
I couldn't bear the fact that she would have to go into a home, she could manage if she could get the care that was offered.
Me and my sister are at our wits end, any advice would be welcome.

Haven't got a clue but didn't want this one to go unanswered so am bumping it for you.

Can you go back to SS and say to them that she needs proper support? Surely they wouldn't withdraw it because she alienates everybody, doesn't she still have the right to be looked after even if she doesn't want to be and doesn't think she needs to be? Do they have a policy on what to do about elderly people who very obviously need care but refuse it, this must be such a common scenario that SS depts must have worked out a modus operandi on this?

Would it be possible for you to talk things through with your mum , try and work out why she is resistant to the carers ?
I know my mum just finds daily visits too intrusive ,she'd rather slob about and live on a diet of cheese straws ,pork pies and tea .
To a certain extent I agree with her - I'd hate a constant round of people in my home .
Not helpful sorry ,if your mum is v.immobile and needs help to prepare food etc .
Not sure if she's dropped all care or if she's still getting some .
Could she manage with less care if things were carefully set out for her - could she manage to microwave food ,soup etc ?

Has she suddenly become incontinent or is it her mobility preventing her getting to the WC ? Either way there are things to manage the situation ,GP ,adaptations ,grab rails .

It must be so hard when you're at a distance ,let us know how you're doing ?

Thanks Basil.
You're right, me and my sister need to start getting more pushy.
I spoke to her GP today because of her incontinence and he went to see her, but she's already forgotten what he said
If I had a spare room, I'd have her move in with me, she's just becoming a spoilt child now, and the thought of her going into a home is unthinkable to me.
She needs to be re-assessed, as she's gradually getting worse.
I'm glad I found this thread, I usually come on MN for a laugh, but it's good to speak to people who get it.

Lady my heart goes out to you I have been there twice with both my Grandmothers it is heart breaking.
Both hated the intrusion of others in their home the loss of control and privacy, We are in Irl and they were of an age where accepting state help [home help/district nurse etc] was charity and they were proud women.
Hygiene Baby wipes and if your sis or some one can in the evening when she changes her clothes for bed grab what she had on and lay out fresh for the morning including the hygiene products.
We left breakfast on the table with morning pills
We had a homehelp House keeper into do laundry and 'heavy work' [strip and re dress bed/hoover monitor her
Meals on wheels in our area serves food on proper ware and we paid for it so not charity they dropped and ran
Mobile hair dresser and chiropodist pride ensures she bathed before their visit
In other words we lied and allowed them to believe they were paying for the house keeper etc

Thanks canyou
My mum has a cleaner once a week, who seems to go over and above what she should do, to the extent that mum is treating her like a carer.
I'm so glad I've found this topic, I don't feel so alone anymore.
There's so much more and it's good to speak to others in the same situation.

Would the cleaner be prepared to take on more duties ?
Good luck - I know it's tough .

Can I suggest you find a Qualified Carer?,having just gone down the same road with my mother who is 85 and had series of falls, she had a cleaner but , I felt it was at the stage now that she needs help dressing and showering, and she is slowly accepting the fact she needs help, and it is great peace of mind as i work full-time, and live 20 minutes away. The carer is brilliant and will do anything, she worked for our local council for 20 years, took early redundancy due to cut backs, and now goes private she is not to exspensive and worth her weight in gold and i feel she know what to do if Mum falls or needs medicine urgently, good luck and hope you get sorted with your Mum.

I'll PM you

We did black economy with some of the people who she would leave in just left a brown envelope in the porch for them
We had to be really mean and tell them that they smelt of urine/BO whatever and here are the clothes go wash and change and let me helpit was awful
And now I can see my Mum denying her age and ability and doing stupid things, standing on the kitchen table to change a light bulb at 11 am when we are there at 12.30.
TBH my Mum and Dad should be years from the situation of needing carers but I think we need to have a chat now about what we each expect from the other. I feel awful saying this but in some ways my life was on hold with caring for the Grandmothers and while I would do it all over again without hesitation I find myself getting stressed and physically sick at the thought of doing it all over again for my parents and mil.

Hi Lady. thinking about you.It is hard and you do have to be firm.Look after yourself.
I've been gettting my mum M&S meals for one which she is really enjoying-v easy and quick.
We found a good carer who has been brilliant- showers her and sees what she needs.it is possible.
You can't do it all-help is there.Age UK also are good.Good luck but keep coming back.

Lady, can you tell us why having your mum move into a home is unthinkable?

Thankyou to all that have replied since I last checked in to this topic.
Anyway, Mum's cleaner went round yesterday and called the Doctor and she is now in hospital.
She's refusing to admit to how incontinent she is, and her chair is saturated in urine. She's been provided with pads but as, in her head, she's not incontinent she's not been using them.
My sister went round on Sunday and cooked her dinner, made sure she had enough pads, but she didn't use them her cleaner found urine soaked toilet roll all around her chair.
She's got a cathater and is on a drip, because she's not been eating/drinking properly, and after a few days will be transferred to a nursing home till they deem her fit to go home.
Problem is, my sister saw her today, and she's furious with her cleaner for calling the hospital and denies she's incontinent. She says she's fine and wants to go home.
I suppose the question is, will the hospital have to listen to her wishes and send her home if she insists? Can they insist she accepts help?
I'm going in tomorrow and will try to speak to the hospital social worker, and find out about POA (thank you Agent).
Fish, I don't know why I feel that, I just think if she had the correct care at home, she would be better off. She isn't at the stage where she doesn't know where she is, she knows who we are, and until she has no sense of place or home, I want her to stay where she is. It makes sense to me anyway.
Anyway, going to bed now, will update tomorrow after I've seen her.

Thinking of you. Good luck.

I dont know, Lady, I do feel sorry for you.

But you need to think deep within yourself whether the reason why you dont want your mother living in a nursing home has more to do with you and your own emotions, rather than what is actually best for your mum.

At some point you need to face that fact that this is life, and this is how it goes. Your mother is 80, incontinent, possibly demented, has problems walking, and you dont want her in a nursing home, most likely because YOU are not ready for her to have entered this stage in her life.

Life sometimes deals cruel blows. This is one of them.

While she is in hospital you need to ask for her mental capacity to be assessed and ask for a family meeting so you can raise your concerns to the drs and therapist and sw. Hope you get some help

If she is deemed as not having capacity they can make best interests decision around her future. If she has capacity it is more difficult. Would suggest you look at power of attorney too if you need to for care decisions in the future

My concern is ( of course with no real knowledge and looking in from the outside ) that 80 is quite young and that the worst case scenarios being discussed may in fact not be appropriate .
It's just possible that she has an infection - which would make her seem confused ,increase any tendency to leak and fall - which ,if sorted ,could see a dramatic improvement .
Of course it won't mean a personality change and the appearance of a co operative person happy to accept care . But it might help .

I find the hospital meetings not much use, the old person is usually assessed as being able to live independantly by the ot and they are shipped out as fast as the hospital can manage

part of the problem is that you see what your mum is like day to day, when she is assessed she will put on a show and manage to do things she never usually does

its so very hard, but you aren't alone, it seems sometimes like everyone except us has mums that drive about taking the grankids out and being helpful, whilst ours are old and worn down

someone said here once its like having an extra child at a point in your life when all you really need is an extra pair of hands

Hi,

We've had a similar situation with an elderly relative, though not my parents. She was very stubborn but much too confused to be able to look after herself, and SS were reluctant to help because when she saw them she was very lucid and articulate, and told them that everything was fine (eg told them she was cooking for herself, that she's organised to have a stair lift fitted etc even though she could barely walk and wasn't eating.) I think it was partially a pride thing.

She suffered from a bad urinary infection and was taken to hospital for treatment before being discharged to a old people's home with round the clock care from nurses etc. To come to the good bit of the story - after six weeks there she had improved so much she was unrecognisable. She was talkative and sociable, she was walking a little, listening to her music. Once the infection was cleared and she was eating properly and regularly (she had been incredibly dehydrated too) she was much more like her old self. She agreed to move into a different residential home with someone on call, cleaners and meal on wheels etc but more independent with her own front door. We also gave her the spiel about having a "housekeeper", "cleaner", and "cook" rather than "carer" or "nurse" (white lies serve a purpose). She's got a better quality of life than she's had in many many years.

Good luck for helping your Mum.

Lady - the sheer fact that she is not admitting to the incontinence and sitting in a urine soaked chair and cleaning herself up with toilet roll and leaving it around is fairly indicative that she may well be much worse than you realize.

My Mum is currently in hospital and will be there until a place is found in a nursing home as she is now not able to be at home. And this is with my very capable dad being at home.

My mum is in Ireland and there are already 90 people waiting for nursing home places in the hospital she is in so we are not holding our breath!

I know it is horrible to think of your mum being in a nursing home but she is obviously not coping at home so you may need to think about it more.

To get my MIL to accept carers her GP told her that the drugs she was on were v complicated and so he would be sending someone to help her with them. (One is a patch and they put it on her back where she can't reach - although it's not strictly necessary for it to go there).

When she stopped answering the door to carers we had a keysafe fitted. This is a small box just outside her home with a numerical code to open it. Her door keys are inside so carer (who knows the code) will ring bell and open the door within a minute or two and walk in.

Her demential is getting worse but she is not incontinent. She wasn't doing washing or cooking (I used to wash her stuff and cook for her and put in freezer with instructions stuck on) but now carers do this and she pays for it. She has a carer for half an hour twice a day.

I think you need to think about the fact that if she was in a home you would be able to visit and enjoy the visit with her, rather than run around doing things in the home whenever you or your sister go.

We have POA (which is registered) but my MIL is adamant that she won't go into a home so, until she is actually unsafe (not too far from that now), we can't make her.

We recently had her gas hob cut off, for example, as she had attempted to boil a plastic kettle on top of it. Fortunately a carer arrived and took control of the situation. An hour later (when I arrived) she had no idea why there was melted plastic on the bars of the cooker. We called a registered gas engineer in and had it cut off a day or two later. Didn't need to ask anyone and didn't ask her.

I think of it as leaving a child alone in the house e.g. you wouldn't allow a 6 year old to cook (except under supervision).

Well, I saw my mum yesterday.
She's still denying she has any problem and want's to go home.
On the plus side, I spoke to the nurse practitioner, who asked me loads of questions and I was able to let her know everything we are dealing with.
She'll be in at least till Monday, where they are going to have a meeting about her including the Consultant and a Social Worker.
I said I was worried about her going home with no care in place, and she said that wouldn't happen. I did tell her that she will turn the carers away, and she took that on board.
Her mental capacity test came out at 24 out of 30, which is good, but a ten minute test does not seem on par with the reality of the situation. They don't know her, I do.
Meanwhile, I'm glad she's in hospital, at least I know she's having three meals a day, she's clean and at the moment is on a cathater, and she'll be taking her medication. It's when she comes out that the problems will start.
Thank you for all your advice.

It's so hard isn't it?

My mum would say she is fine too and wants to go home. However she also thinks I am having an affair with a guy in the IRA and my dad is having an affair with a 17 year old!

Is your mum showing any signs of confusion?

The time in hospital will give the doctors time to really assess her capabilities and the level of care she will need.

glad you're feeling a bit more reassured op

one word of warning, do not let her leave hospital without the care in place, I have been promised meetings and care set ups before and they are impossible to start once they leave the hospital care, its out of their hands then and becomes a community problem

your mum will probably get rapid response, this is a 4 week care package 3 plus times a day which is great, but its when that dries up the problems start

you will have to grit your teeth and push for all the help you can get, the social worker, the doctor and the ot don't work together so don't assume they'll all know about your mums problems, you need to get on the phone and start the ball rolling for better care or residential care

its crap and so hard going

good luck

An update,
My Mum is still in hospital.
The phsyio (sp) comes every day to take her up and down the ward on her zimmer but she says everybody is bullying her and she'll be fine when she get's home.
She has a cathater but is also soiling herself as she insists she can't walk.
She's had so many falls over the last year.
There was a meeting on Monday which my sister attended, with social work, nurses and doctors.
They have said that unless she can walk up the ward 4 times a day she won't get home. It'll have to be 24 hour care.
I can't stop crying, I want her home in her 'own little bungalow' as she keeps saying, but she's not making the effort. But it looks like a care home at the moment, and I've no idea where to start.