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Too much - Carers UK Forum

Too much

Share information, support and advice on all aspects of caring.
New to forum, sorry to start with such a negative. I've been caring for my mother with advanced MS for almost four years now, she's deteriorated so much over this time. Now she can barely use her hands for anything, we were hoping that it might be a temporary thing but it doesn't look that way anymore.

The past 3 weeks she has been recovering from an infection, if you have experience in caring for someone with MS you'll know that infections can make an MS sufferer delirious and so for this period of time she has needed virtually round the clock care.

I have been there with here Every. Single. Day. She has other carers but they come and go. These past few weeks when she was ill I was there all the time. Her other carers get to leave the responsibility behind at the end of the day, I don't have that luxury.

Today is supposed to be my day off. This is something we agreed in the summer when I quit my job to better be there for her needs, Tuesday would be my day off. Someone else gets her out of bed in the morning, someone else comes to give her lunch, someone else comes to put her to bed. It's my day off.

And yet.

Rang about an hour ago to check on her - she was supposed to have a phone appt this morning, same time every week, my sister is supposed to help her make the call because of her useless hands. She chose not to do this and has apparently been sat in her room ignoring all calls and hung up on me when I tried to ring her about it.

So I get yelled at down the phone by my mother. I get to feel guilty and ashamed for wanting just *one day* for myself. I get to worry about what the doctor is going to think about the fact no one answered the phone (we've had problems with NHS services because of this in the past)

I hate my life. I hate being the only one in our family responsible for Mum. I'm beginning to hate and resent her and I don't like feeling like this. We used to be good friends, now I look at what our relationship has been reduced to and I just feel so much anger and loss.

I used to dream about travelling the world, how is that ever supposed to happen for me when she can't cope a single day without me?

I'm meant to be zooming a friend in less than an hour, currently curled up in bed in floods of tears. Is this really all there is to life?
Tomorrow morning, ring mum's GP and tell him that you CANNOT care for mum any more unless he applies for NHS Continuing Healthcare so that she gets all the help she needs WITHOUT you.
Read up about CHC, you really can't keep giving up everything for mum.
What work did you used to do?
Am I right in thinking you don't live with mum?
Does she have a Lifeline?
You need to take a bit more control. If mum shouts at you on the phone, put it down, immediately.
If she does it when you are at her place, put your coat on, and leave.
You are her daughter, not her punchbag, on whom it's OK to take her frustrations on.
If you don't stick up for yourself, no one else will.
Is it time for mum to move into residential care?
When did you have a Carers Assessment, and mum, a Needs Assessment, from Social Services?
I don't want to stop caring for her. And definitley don't want her to go into a home. I just need to not be the only one in our family responsible for her, I have two able bodied siblings and a dad (her husband) it shouldn't just be me. I don't live with her, and she does have a lifeline. I think the shouting was more her being frustrated than being abusive towards me. I get it, I'm just sensitive so it's hard to deal with.
Hi Lollie, welcome to the forum

The efforts you're making for your mum are admirable, this is a difficult time for carers for all sorts of reasons.

Have you thought about coming along to one of our Care for a Cuppa sessions, we're running series of online weekly meet ups for carers to get together and chat informally. People say they've found it really helpful and supportive and it's nice to be able to take a little bit of time for yourself. There's no pressure to share any more than you're comfortable with. Join up details are here:

https://www.carersuk.org/help-and-advic ... ne-meetups

Do join if you'd like to

Best wishes
Ingrid
Hi Lo,

You sound worn out. You have made a massive sacrifice to support your Mum, especially since she has been so poorly with the infection.

Unfortunately - you cannot make your relatives look after her. You are not the first person on here to be the one doing all the care, despite other relatives being available to help more.

You are not selfish wanting a day off for yourself, but for your day off to work - you need to not be checking up on your Mum - as then you get wound up by what should have happened and hasn't. I hear what you are saying about your Mum's phone appointment and your sister not supporting her with that. Also you are worried re the NHS response to this. Could you either have a back up plan for your Mum if this isn't one of with your sister being useless or change the appointment so it doesn't clash with your day off.

I understand your Mum was frustrated, but she was shouting at the wrong person - make sure she has the opportunity to shout at your sister!!

It does sound like your Mum needs her Needs assessment updating. No harm in asking for her to be assessed for Continuing Health Care funding. This doesn't mean you won't be caring for her anymore - it would just mean you would have more support doing it. This would in turn enable you to take more breaks and no feel as if everything falls on you.

I hope your Zoom call went ahead and that your evening goes better than your day did.

Melly1
It's good that you are clear in your mind about what you do and don't want.
Some people, when I ask the most difficult question, say "I can't stand it another day" and have called an ambulance. It's your feelings that matter most.
Mum can still have CHC for care at home.
Is your dad able to care for your mum when you're not there? If he is unable to look after your mum then you need to tell your siblings how you are feeling. Could one of them visit Mum on a set day each week which would then give you a break from caring?
Don't phone your mum when you have a day off. If someone else is with her then Mum is their responsibility, not yours.
Whatever happens please remember that you and your well being are very important. You need regular breaks to 'recharge your batteries'. You cannot be expected to work 7 days each week. A carer claiming Carers allowance is only expected to work 35 hours per week and is entitled to several weeks off per year.
Let us know how you get on.
Dad cannot be forced to care for mum!
CHC can fund and provide care at home.