I need some perspective

[IthinkIsawahairbrushbackthere]

I am carer for my disabled, widowed mum. She lives in a self contained annex in our garden. Our house is designed with all the living areas upstairs and there are steps to all the entrances.

Mum has little to no mobility and is in a wheelchair so is unable to come into our house at all. I have done all her meals and cleaning for years, since before my dad died.

Mum's condition has deteriorated over the past few years and in the summer she was taken ill with a perforated ulcer and sepsis. After nearly a month in hospital she came home with a reablement package. She hated having the carers coming in - she would never know when they would come in the morning so she started getting up ridiculously early so they had nothing to do and they would come in the early evening - sometimes as early as 6.00 p.m. to put her to bed so she started getting ready for bed at 4.00 p.m..

She was most relieved when the care package came to an end and she was left with me. Since then her mobility has deteriorated so she can no longer walk from her bedroom to the living room or from the living room to her bathroom so I have to take her every time.

My normal day looks like this:

7.00 a.m. - Get up with my daughter for school
9.00 a.m. - Go to mum, give her breakfast, sort her tablets, clean the kitchen and living room.
Sometime in the next couple of hours she will phone and say that she is ready to get up. Sometimes she will be dressed, sometimes I need to dress her and then take her from the bedroom to the living room.
1.00 p.m. - Go out to her and make her lunch/sort medication.
3.00 p.m. - She will phone and ask me to take her to the toilet.
5.00 p.m. - Another toilet trip, turn on the lights (she can't walk to the light switch)
7.00 p.m. - Take her dinner out. Then she will want me to stay with her until bed time.
10.00 p.m. - Take her to bed and help her undress etc.
11.30 p.m. - Husband comes home from work and I do his supper
12.30 a.m. - Bed

And at least another three visits through the day because she can't find her glasses/the tv "won't work"/ the mail has arrived/ she would like a drink "but don't rush - I can wait"!

After six months of chasing we have finally had a care assessment from Social Services and they feel she should have carers coming in twice a day. And she is furious! She has said she will NOT be having carers. Everything is fine. She doesn't need any help. But I DO!

I am up and down stairs to her at least ten times a day. She never wants to be alone but I have a husband and family and home of my own. My husband works various shifts so if he is on an early I really want to spend time with him. But I also have a teenage daughter who needs me. She can't bring her school work out to my mum's - mum has the tv on loud and will keep talking to her over the top of it! I don't want her to be left all on her own every evening. She already spends most of Saturday on her own because I promised mum I would spend Saturdays with her at a time when she was very depressed after dad died. I know there is nothing anyone can do to help with the loneliness - she has become totally dependent on me and I have to deal with that - but I feel that if I had a little less responsibility I could cope better with all that.

Am I being unfair to insist she has these carers? I am at breaking point trying to balance her needs with the needs of my husband/daughter/my own needs. The Social Worker says that she can not see me coping much longer without a breakdown and if we don't have carers mum will end up in a home. I don't mind doing the washing/cleaning/meals and could easily spend an hour with her in the evenings but not three/four hours every single night and all the visits during the day.

Oh and I have tried spending the afternoons with her but she still expects me to eat with her in the evenings and complains if I go home early, even if she has someone else with her.

No you are not being unfair at all.

Actually, you can't insist she has the carer's but you can be very clear with both her and Social Services that you aren't able to do it.

It is a big change for her having 'strangers' coming in but thousands of people do it. I know we were perhaps lucky but the carers we had coming in for my Dad were amazing even when he didn't really want help. I know the early bed is an issue but it doesn't mean she needs to sleep - does she have a TV etc in her room

Do you ever go away on holiday, for a weekend or even out for a night? Perhaps you need to go away for two nights and leave her and the carers to it?

This sounds awful. You have my sympathy and you MUST insist on the carers.
If your health breaks down she will be stuck and more importantly you deserve your own life.
Does she have attendance allowance etc? You can get timers for switches for lights or activated when it gets dark.
Can you talk to age uk or carers association? They could offer moral support. Get help in. You deserve more.

Sounds really stressful. You really need to insist she has carers coming in. Late mil was the same, insisted she didn’t want strangers in but she had no choice in the end.

Careers or care home. Ask her what she would prefer.

You must be exhausted. Tell her it's not optional and you can't carry on. You need the help.

You are NBU at all. Time to tell her firmly that you can't manage long term without the carers, and that for your own sanity (and therefore that you can continue to enable her to stay at home) you are going to have to put some boundaries in place.

If you put an Alexa in her annexe, you could get some enabled plugs to turn the lights on/off and she can play music, listen to the radio etc.

Is there a local day centre she could go to so she gets some company? It sounds a bit like her lonliness is leading to a bit of learned helplessness and demanding behaviour so you have to come over.

Can she not self propel at all? Even by pushing with her feet from the wheelchair?

She absolutely has the right to refuse carers if she has the capacity to do so but she doesn’t have the right to insist you do this. In the words of my GP ‘your DD will not thank you for it ‘ and in the words of my counsellor ‘is it your guilt to feel’.

If SS are saying you can’t cope then please listen as they are usually happy for family to take the brunt. Maybe the easiest thing is for you to be ‘ill’ and say you have to rest on Doctor’s orders.

Then she will want me to stay with her until bed time.

Curiously, this I find the hardest part. She could let you rest but no, she is ducking your life away

And all day Saturday away from your daughter

This really, really isn't fair. And it isn't sustainable either.

I'm afraid you will need to be very firm. Work out what time you can give and tell her what is going to happen. I know it's hard for her but it's also hard for you. She is having no consideration for you at all.

Good idea about you going away or doctor ordered bed rest for a week while she gets used to the new regime. And when you start again, do not do more that you have set yourself.

Her health will only deteriorate, there may be worst to come when you will need to step in.

All the very best.

Am I being unfair to insist she has these carers? On the contrary, it's vital that she does have thee carers. You may find the only way is to withdraw your care to prove to her that she does need help.

How much money has she available? Is she getting Attendance Allowance - if she isn't, then apply for it (make sure you get someone from AGE UK or similar to help you fill it in - you need to know the right language). Then, looking at your list above:

Get a cleaner. You need to outsource everyhing you can. But at the very least, don't have a cleaning trip AND a getting up trip.

Look into getting the medicine being delivered in a "dosette box", already sorted into up to 4 doses per day.

There's already technology available to allow lights to be switched on remotely from your mobile phone.

See if meals on wheels is available in your area.

Make sure she has a jug of water/juice within reach. It might be nice for her to have a cup of tea, but if she has a drink within reach you know that you can say "sorry Mum I can't come just yet" without her getting dehydrated.

Some voluntary organisations have befrienders, but if fhe has the funds, it's something that can be provided on a paid for basis from a Care Agency.

It's easier if you have Power of Attorney for her finances, because you can spend money in her best interests.

You cannot keep up the schedule you've described, and she'll be really stuck. She'll be really stuck if you get the flu. You need her to accept the need for carers. If necessary have someone present it to her as a choice between carers or no longer being able to live where she is.

It's really difficult to take a tough line, because you don't want to see her upset or uncomfortable, but you may have no alternative.

OP she is being very unreasonable

I would tell her bluntly that she has carers or goes to a home

In fact, I wonder if care home is the right option now?

A bit different but when my gran was terminally ill she went into hospital to have a stent. She told a social worker that her daughters would look after her. My mum got upset and said she just couldn't do it, she was tired from keep going to my grans to help her and my aunt was too. My aunt was my grans step daughter and only 12 years younger and was 69. She had not long had a hip replacement and my mum had a form of epilepsy that affected her balance and she was exhausted. It was made clear to my grandmother she would have to have carers or a care home. She had carers but a home became essential. It will make you really ill to carry on like this. Be honest and tell her that it's up to her but if she doesn't have the carers then a home may be the next step.

First in answer to your most pressing dilemma, if your mum has mental capacity she is well within her rights to refuse the carers regardless of whether she needs it or not. All you can do is make it plain the social workers that you will NOT provide this care in the absence of carers. By all accounts this is an awful dilemma because of course you don’t want your mum to suffer or be without the care she needs, you just don’t want to be the one to have to provide it. This puts you in a terrible position of stepping back without anything in place to prove a point which I’m sure you couldn’t and wouldn’t want to do anyway.

I care full time for my MIL who has Alzheimer’s, she does not have mental capacity. A while back we were really struggling with her personal care as she was being physically resistant to it. We had a social care assessment where they agreed she needed x2 carers 3 times a week to assist with personal care. The carers came and MIL point blank refused to cooperate on any level, insisted she didn’t want or need them and sent them away, and away they went as they cannot go against her will despite it being in her best interest to not have the same clothes on for a week! Over the course of weeks not one caring visit was successful and in the end we cancelled it as it was a complete waste of time and we were continuing her personal care during this period anyway. It was our hope that she would eventually accept the care but in the end it just wasn’t to be.

Since your mum does have mental capacity the best thing for you both is to sit her down and explain why you need her to accept the carers. You need to be firm and you need to be clear about the strain this is having on you. Be explicit in the care you are stilling willing to provide or perhaps explain that with her care needs being attended to it leave you more free to just enjoy spending quality time with her. You know her best and will know what to say better than I can advise, but the main point is that she agrees to accept the help.

I’m not surprised you are at breaking point.

I agree with others that you need to say to your mum that she either has the carers or else she goes into a care home.

I never understand old people dictating what is going to happen to them .. did she give you lots of money for your house : annexe ? Just wonder if she feels entitled to your care .? Either way go with what pp said , carers or care home ,what you are doing is too much !

I presume you just get £250 per month for caring ? If so then she it's just not worth it is it !

Thank you everyone. As I say, I have lost all perspective and have felt that I have no choice but to neglect someone - mum or the family?

I do get some time away - most weeks one of her best friends visits, bringing lunch with her. The day she comes is usually my husband's day off and also the day my daughter has a half day in college so we tend to go out for the day. Sometimes we just take our books and sit in a car park somewhere just to be alone! There are people who would happily come and spend an afternoon with her so I can have a break but she doesn't want them. She only wants me. When I do go out I call in to see her before I go so I can take her to the loo/make sure the tv is on/she is warm enough etc and the same when I come home.

If we go out in the evening I have to make sure one of my daughters is free to do her dinner and help her to bed although she will often insist on waiting up for me to come home.

The last time we went away (first time in 7 years!) she was taken ill and a few days after we came home she was rushed to hospital.

We need to go away for a few days in the next month or so and I will be organising it with my daughters so that someone will be able to look after her.

She has a tv in her bedroom mounted so that she can watch it sitting up or lying down and she has an electric bed so that she can get comfortable.

I spoke to the social worker last week and she is going to see mum without me being there and explain to her that I need to have help or she will have to go into care. I am dreading the visit because I know she will be so upset but as it is I am in tears everyday so I shouldn't feel too bad.

I have asked the pharmacist about having the tablets sorted but he said that the surgery doesn't approve of it? No idea why but it is only a very small part of what I do for her so I don't worry too much about that.

Someone asked about money? She and dad sold us this house at a greatly reduced price 20+ years ago. It was all above board and we signed a promissory note for the balance between what we paid them and the value of the house so in that sense we do owe her but we bought it so that they didn't have to pay the mortgage and it was as helpful to them as it was to us so we are pretty much equal.

All your answers here have prompted a very helpful conversation between my husband and I - there are things he can change about his work hours which will give me more time during the day to spend with her and maybe with the assistance of carers we can free up my evenings which is what I want more than anything else.

I get Carers Allowance and she gets Attendance Allowance at the lower rate.

I really appreciate all your comments. I think I can see more clearly now.

Thank you

I think it's a unanimous YANBU.
I came on the thread as my elderly mum turns away all supports, saying she doesn't need it. She lives in an annex beside my brother and the assistance or Nursing Home conversation is on the horizon.
My DMs response of 'I'm not able to...' when she doesn't want to do something is worn well thin after 20 years. Like the boy who cried 'Wolf' perhaps it is actually true, sometimes, but I'm afraid I tune it out.

It's a shame your family don't have the privacy of your own home and garden on your time off. Going to a car park for a bit of family time is -ridiculous- tough.

A new technique I've learnt is to say inwardly 'what about me?'. Please try it. You've only one life.

I say "car park" - really we drive somewhere where there is a good view - not like a multi storey :-) But if we plan to do it we do it whatever the weather so we may drive to our favourite beach and park so we can see the sea and have a picnic in the car. Sometimes I meet my husband from work (I try and get there early so I can have half an hour with a book before he finishes) and then we will have lunch in the car together before he drops he home at the end of his lunch break.

This afternoon I left the house at 4.30 as daughter had a lesson with her maths tutor. She finished as my husband finished work so we picked up a takeaway on the way home. We all had tea with mum and then my husband went home while we watched Eastenders. I was still getting mum to bed at 10.30! I was a bit grumpy and said "I just want to go home - I have been out since 4.30!" and her comment was "I wish I could do that. I would love to be able to go out whenever I want!"

Every. Single. Saturday. I suggest we go out but she is usually in too much pain or it's too cold. Or it might rain!

I really feel for you. I hope you can carve out more time.

The only way for strangers to stop being strangers is to see them regularly. Please start saying 'yes' to people who will sit with her for a while - explain its tricky and give them a few ideas then leave them to it. The carer input you are talking about sounds absolutely minimal, hardly anything in the context of what you are doing.

I believe all pharmacies are starting to push back against providing dosette boxes as they are hugely time consuming and high risk for mistakes. Which shows what you are doing for her....

Outsource what you can. Consider a cleaner for her (more informal help and company) and perhaps your house too. Try Wiltshire Farm Foods ready meals - could she prepare them herself if she likes them? Does anyone local have s dog they would visit with? So much fun, so distracting.

I did say yes to a friend who comes every Thursday afternoon and the minute she walks in the door mum is on the phone to say that she is there and would love to see me! All the while friend is cringing knowing that she has come to free up some time for me, not to expect me to drop everything to see her!

I have a couple of really supportive friends who call to see her from time to time and we have an arrangement that if they want to see me they contact me before coming and usually we go out for coffee but if they just turn up they come to see mum. But she still wants me to come out when they arrive.

She wouldn't be able to manage to put food in the microwave. Even though she has a zimmer frame she just can't move from the chair to the kitchen anymore.

I am moaning here but I do need to make it clear that I love her to bits and thought my world would stop when the doc said she probably wouldn't survive surgery last summer!

Ah you're lovely daughter.... and if someone's with your mum and knows her GP's number, turn all the phones off (forgave a ringtone you don't answer...)

'I'd love to be able to ...' - oh, I recognise this guilt provoking stuff.
I'd answer something like 'You did mum. 30 years ago. And 10 years ago. I need to go home now.'

You are a lovely daughter but you have to draw a line , she is manipulating you and controlling you with guilt . You only have one life and she could live another 10 years or more and yours woudo have passed you by . I have always said I wil manage my mums care but I won't do it . It's not a life is it !

What others have said, it's either the carers or a care home if that can be afforded. You matter too.

Why do you need to go and sit in the car and read when you have free time?