Burnout and guilt

Carers' health and wellbeing
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I have had my first respite weekend since February.

In many ways it has been a welcome break. I’ve done some work in the front garden, had coffee with a friend, had a lie in and enjoyed some wine ….but this weekend has not been without challenge.

I am my mums carer. She is bed bound and has suspected (undiagnosed) dementia.

Mum has 4 care visits a day whilst i work full time and i care for her after work before her final bedtime carer call and care in between calls at the weekend.

I’m in the middle of a care needs assessment for mum via social services and i’ve recently started looking after her finances which has meant appointments with building society, registering with bank etc (LPA allows me to do this).

I anticipated that mum would struggle with me not being there and i was right. I had arranged for plenty of help from carers, made lists and left instructions so everything was taken care of…i have received so many calls from her because she just wanted me to sort out minor issues rather than asking carers.

I have had to stand firm so as not to give in (i give myself a pat on the back) but even though i explain to her that i need a break and that i’m not abandoning her, she refuses to see that trying to take care of everything (her health, medication, finances, food, care requirements, gardening, and general admin whilst working full time) is taking it’s toll - she plays the guilt card.

I have one sibling who refuses to help - he just retreats and has many excuses why he can’t help when i ask for it. Doesn’t ask how mum is or ring her.

I feel a thousand pounds of pressure on my shoulders and have sacrificed so much of my life.

I am resuming normal caring duties tomorrow and i really don’t want to. I don’t look forward to seeing mum - everything minor thing is a great cause of distress/worry for her and i’m always needing to calm her down and reassure her.

I’m unable to take time off work because i have used all of my annual leave taking care of mum this year when she’s been ill (she’s had severe UTI, seizures, falls, leg infection and is now bed bound)

It never ends.

I live 8 miles away from mum and do not want to live with her - my home is my only sanctuary and i live on my own.

I feel guilty when i’m with her because i get frustrated that she’s forgotten how to use the tv remove for the umpteenth time that day, i get frustrated with her for ringing me at work during the day because she’s worrying sbout something. I feel guilty because i have chosen not to make a 16 mile round trip because she wants the channel changing or she wants the curtain closing and instead have asked her to wait for the next carer so they can help her.

I explain that her expectations of me to jump in the car for non urgent minor tasks is unrealistic and unfair, that my health is being affected but she justifies her reasons (no one else to call, the carer has just left, what else am i supposed to do, i’ve barely slept worrying about xxx……) so then i feel like a bad daughter.

I can’t ever see how things will improve or how i can get some of my own life back.

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Mum NEEDS more care than you can give. Time to say enough is enough. One day, driving from mum’s home to mine, then to see her in hospital, I realised “I just can’t do this any more”. I too was disabled, youngest son was brain damaged, I’d spent months sorting out my brother’s house as he was dying in Uruguay, I’d done too much for too long and there was nothing left to give. Mum fortunately recognised this, and spent the last year of her li fe in a care home near me. What a relief.

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Hi @Victoria2024 and welcome to the Forum.

I managed a week off in May and when I returned home, Graham kept saying ‘I’m so glad you are home I was so worried something would happen to you and then what would I do?’ Talk about a guilt trip!!! I felt like I had not had a week off after gearing that.

There is a point which you reach when Caring IS too much for one person and its very clear from what you have said you have reached and exceeded that point. My advice would be to contact Social Services and state you are not able NOR WILLING to be her Carer and it is therefore THEIR responsibility. They legally have to act to protect her. THEY have to formulate a Care Plan and implement it.

Remember NO ONE can be forced to be a Carer and you have done more than you bit. Now you need to have the pressure taken off and getting YOUR life back. If she is already receiving four visits a day, it’s clear she has major care needs and these seem to be increasing.

It takes a lot of strength to STOP physically caring and you shouldn’t feel bad about that. Family are not helping so there is no reason for you to feel guilty that you have reached your limit.

We’re here for you when you need to vent and many will have great advice for you. :people_hugging:

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@Victoria2024 Welcome from me too. I can only echo Chris’s comments. You have come to the ‘end of the line’ and need to ‘step back’. I agree totally that if 4 visits a day are not enough then other arrangements need to be made. You cannot keep juggling a full time job and ‘filling in’ for the Carers when it sounds as if your mother needs 24/7 care.

I would write to her GP and say that you are no longer able or willing to be her Carer and that they have a ‘Duty of Care’ . I would send Special Delivery. I would also contact Adult Social Care by phone or email and follow it up with a recorded or special delivery letter.

Old people become VERY selfish and thinks the whole world revolves around them. Many of us are literally pushed to breaking point and I really hope you can ‘back off’ and get your own life back. Where is time for YOU? Hobbies? Friends?

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Hi,

Thankyou for your message x

I’ve let mum know that now she has 4 care visits a day that i need to take some time for myself. She tells me she feels lonely at night on her own (she doesn’t have night carers because we can’t get them) but i explained i am doing all i can and won’t be moving in with her.

She has enough capacity to make decisions and says she doesn’t want to go into a care home so Social Services are doing what they can to keep her in her own home for as long as possible.

I don’t feel i can refuse to care for her anymore (i’m all she’s got) and i don’t want to make her feel like she’s a burden but i am going to take a step back and only go 3 days a week and not 7 (4 if something can’t wait)

She’s rang me 4 times at work this morning to say she’s struggling with changing the tv channel - i’ve ignored all calls having a sense that the reason was the tv, called her in my lunch break to check she was ok and i was right - it was about the tv remote…

Victoria Scott-ison

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