Wednesday, 23 January 2019

The Struggle With Guilt, Balance and Self Preservation As A Carer

When my mum was first re-diagnosed with breast cancer, which was now incurable, I was just in the process of moving jobs. I was wanting to free up more time for my freelance hair and makeup work; assisting some of the best stylists in London on photo shoots, so I had found a part time job in a beauty salon in Clapham, near to where I lived at the time.
Of course with this colossal news now weighing heavy on my shoulders I wasn't sure what would happen.

I decided to be completely honest at my new job and email them in advance of starting to explain my situation and that I would try not to let this affect my work, but couldn't guarantee, and may sometimes need to be a little flexible.
I was incredibly lucky that they were so understanding and went on to just be wonderfully caring and so compassionate throughout my time there. I actually worked 3 days a week with them throughout my mums whole time with cancer, only leaving a month or so before she died.

The reason for speaking about this today is that even though I know how lucky I am that I was only part time and worked for an amazing place, I struggled massively with guilt still.

If you have lived with or looked after someone with a chronic illness before then you will know that every day is different and it is so bloody hard.

My mum and I lived together, just the two of us, so I was the only person there to help. I also had technically moved up to London earlier in the year, so I now lived 3 days in London where I worked and would travel home to Sussex for the rest of the week to be with my mum.

For the majority of the time throughout the 2 1/2 years my mum wasn't really too 'ill'. She had a fair amount of pain due to the cancer being in her spine, but we tried our best to manage this on many painkillers, so if it was controlled well then she was ok. Not great, but ok.
However living day to day knowing that you have incurable cancer can be horrific on your mental health, and I think that this is what my mum struggled with the most and I completely understand why.

My problem was that I had to work still. For money, to grow my career and also to be totally honest for my own sanity.
My mum of course wanted me to be at home with her as much as I could, as otherwise she was on her own, and I also practically had to be around quite a bit as she had very regular appointments for blood tests, injections, treatments and checkups which I needed to take her to.

It was a juggle to say the least.

Now we did have the help of my mum's best friend who supported us both immensely, but there wasn't many other people locally. The rest of my family weren't super close, meaning that it was a lot.

I was so happy to be so involved with my mum's practical support, but I also wanted to try to keep as much of myself and my own career and life as possible.
To be brutally honest this was because I was terrified that if my life was solely based around her then when she died I would have nothing left.
I was trying to preserve myself so that I had some existence after....and this was sometimes heartbreaking. It was heartbreaking to take up the great work opportunity for the day, or go out for the evening, or go on a weekend break knowing that your mum is desperate for you not to go and will be at home feeling terrible.

I used to feel such horrendous guilt and feel so utterly selfish if I said yes to something. The joy of it was taken away for me. I didn't actually do this very often as I couldn't bare to, but just enough to hold on to the outside world.

I wanted to share this to let you know that I believe ultimately that this was the right thing to do and that it is ok. I never would have left my mum for an evening if she wasn't feeling well and it wouldn't have been safe to do so. Also my mum knew that too, and did know that I needed some time for myself as well, despite her own feelings.

You need to take care of yourself just as much as the person that you are caring for, or you have nothing left to give. You need to continue your life and relationships, and create the best balance that you can.
Your work should understand and it is best to be completely honest with them. It is quite likely that they have dealt with something similar in their own families. People are kind if you give them a chance to be.

Lastly....don't be afraid to ask for help. Especially if, like me, you are the main 'carer' and don't have a lot of family close by. It is a huge weight to carry daily and it isn't possible to do everything. I wish that I had asked more.

All we can do is our best each day. Try to build a wonderful community around you that can take some of the load, and don't beat yourself up.


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