New member struggling with the reality of becoming a carer

Hi everyone,
It is my first time here and my first time posting on any kind of online forum…

I am a Activities coordinator at a supported living housing scheme for adults at risk. I have been working in the health and social care sector for many years and I know how hard it can sometimes be to be a carer in a professional setting but I didn’t realise how much more difficult it is to become a carer for someone you love and care about…

My Mother is 74 and was diagnosed with terminal stage 4 lung cancer that had already spread to her brain in late July this year.
Because of the 3 tumors in her brain she started to have difficulty with her mobility and struggled with memory loss and confusion and needs 24 hour care and support. The oncology team looking after my mother is great and explained to me that the treatment she was being offered was palietive and the objective was to stop/delay the growth of the tumors and helping her body fight the cancer cells in order to extend her life to hopefully 1 year or years as opposed to the months she would survive without treatment.

When she was first diagnosed and in hospital my brother offered all the support and said that we would look after mum together, etc but as soon as she was discharged the previous almost constant contact and offer of help and support to care for mum stopped and since the day she was discharged and came to stay with me and my kids, my brother did not visit her once and provides no support or any help at all.

So very soon after the diagnosis I realised that I was going to do this alone and on my own… I unfortunately was forced to give up my job as mum’s condition made her almost completely dependent and needing help with all aspects of her daily life, from washing herself, getting dressed, her meals, medication and even walking (she is not able to walk or even stand up unaided)

I have to admit that I was feeling a bit stressed and under pressure emotionally way before mum’s diagnosis… Last year in October I separated from my partner of 26 years and was not able to find a place to stay for my children and I and so found myself in emergency temporary accommodation (that I am very grateful for) and finding it very hard to deal with the lack of security and emotional stability that comes with the vulnerability of realising that even the roof over your children’s heads is not secure and the simple fact that you are in emergency temporary accommodation makes it difficult to feel at home and make it your space (although I try to make it feel nice for the kids).
So after mum’s diagnosis I had to ask for permission for mum to stay with me and the kids and she moved in.

In the beginning I thought that I would be able to deal with the challenges I would face while caring for my mother and that I would be able to keep myself healthy and strong… But soon I found myself feeling so alone sometimes, like I have never felt before and on top of that sense of loneliness there is the worry, anxiety, pressure, tiredness and that you are stretching yourself in order to take care of everyone (my mum and the kids) but so far I have managed to keep things as normal as possible for the kids.

I don’t need and am not looking for gratitude, and don’t want to make my mother feel like she owes me anything or has to give me any sort of special treatment for me looking after and care for her but sometimes it feels like she thinks I have a obligation to care for her and I have to be at her back and call every minute of the day and when I remind her that I also have my children to look after occasionally, she is quite nasty in the comments she makes and can be very rude and if I ask her to speak with my brother to ask him to come over and look after her because I need to do something outside of the house and so I can’t be there to help her, she gets annoyed with me and starts making excuses for my brother’s behaviour and always says that my brother can’t help because he is very busy at work and can’t take the day off because he has his family to look after… And then I loose my cool and end up arguing with her because I think… What about my job and my family, don’t I have a family to look after? Didn’t I have to leave the job I love to be able to care for her?
Why can’t she see the sacrifice my kids and I had to make for her?
But when this happens and we argue I am the one left feeling so guilty for having snapped at her.

Can anyone please tell me how do you go about setting some boundaries when caring for someone so close to you and in a family situation where there are always other issues at play???

Welcome to the forum.
What a difficult situation, which could have been avoided with better help and support at the right time.

To help us give better advice, the answers to the following questions would help. You can’t deal with all this by yourself, you and mum both need help.

Was no help or support offered by the hospital when mum was diagnosed??
Were you told about Attendance Allowance, or NHS Continuing Healthcare?
Are you getting support from a hospice, or Social Services?

Where was mum living? What has happened to her home and belongings?
Do you have Power of Attorney?
Do you know how long mum has left?

Hi Agnes, welcome to our forum

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, we run them every Monday afternoon. People say they’ve found it really helpful and supportive, 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 Ingrid,
Thank you so much for the invitation. I will try and make it for the next session.
At what time do you usually start?

Thanks again

the link that Ingrid supplied appears to be out of date (!) try this one instead
https://www.carersuk.org/help-and-advice/get-support/online-meetups

The next online meet up is Monday 23rd November between 3 & 4 pm. and yu can register here

https://us02web.zoom.us/meeting/register/tZUodOmvqDIiH9NuzSeWXLd_Q9gXoBP3fy5A

Hello Agnes.im a full time carer I’m 54 my dad is 94. never feel quilty how you feel about about the way you react to your situation.its the hardest job in the world all the time.always remember you will get help and support on here,it’s always good to text/chat.be strong.ian

Sorry Agnes

https://www.carersuk.org/help-and-advice/get-support/online-meetups

this link should work, if not let me know.

thanks susieq for spotting it

Ingrid

Hi Ian,
Thank you so much for taking the time to read my post and getting in touch with me.
You are right it is the hardest job in the world… Both physically and emotionally.
I can’t put in to words how positive it is to know that when I am struggling and need to let my worries and frustration out I can login to this site and write honestly about what I feel and also ask for advice without being judged.
I hope you are well.
Thanks again