THE BLOG

I Wasn't Able to Take a Step back From the Day to Day Care and Be Her Daughter

07/03/2016 09:16 GMT | Updated 04/03/2017 10:12 GMT

My mum Sheila was diagnosed with head and neck cancer in June 2008. My sister and I did all the personal and nursing care, until her death in 2010, without the support of carers.

Mum had some mouth ulcers that hadn't healed, so we took her to the doctors who referred her to the hospital and underwent a biopsy. Two weeks later we were given the diagnosis, I knew something wasn't right but it was still a shock. She was 69.

She was already frail and had rheumatoid arthritis and osteoporosis from the age of 26. She was in a wheelchair from the age of 60 and was classed as disabled.

After her diagnosis, she was given her options. Either she could do nothing and allow nature to run its course or have radical invasive surgery. As it was an aggressive cancer, we were told she would have roughly two to five years if we did nothing. We told mum it was up to her and she decided against the operation.

In October she was told the cancer wasn't doing what they thought, and to re-consider surgery. She decided to have the operation although afterwards, was unable to talk which she thought might be permanent (but fortunately wasn't). She was exhausted by her radiotherapy treatment and didn't want any more but by 2009, mum was looking well again.

Unfortunately in May 2010, a small spot on the left cheek of her face had popped. We were told it was the same aggressive cancer as before and it was terminal, with only a one or two year prognosis.

Gradually, the spot on her face was getting bigger and a hole was beginning to appear. At the time I was working four nights a week as a carer in Norwich, providing palliative care for a patient who had MS. We had a district nurse who came in but the care of her face was down to me. I had to pack her face with different dressings and gauzes and tried all sorts to make it as comfortable for mum as we could. Towards the end, the hole was so big you could see her tongue through it and I was changing her dressing five or six times a day.

We weren't offered a care package or any carers. I wish we had been. We could have done with the help at the time and I could have been her daughter. I regretted that afterwards, that I wasn't able to take a step back from the day to day care and be her daughter like she would have liked me to be.

Mum always wanted to know the truth about what was happening and from June (2010) we had a palliative nurse who was amazing. She did die at home, which I knew she wanted, and I felt that as long we could cope we would try but it was tough both physically and emotionally. Pain relief was mum's biggest fear, I said I wouldn't allow her to be in pain or let her suffer. We didn't have any overnight support and it was just about keeping her calm.

I was working full time and caring for my mum. I would go to hers at 8pm, do her dressings, go to work 9.30pm-7am, call again at my mums in the morning, do her dressing, and go home for some sleep. It was exhausting.

Moving her was always difficult due to the pain she was in because of her arthritis. She developed pressure sores and I was angry that I had allowed her to get them, even though I knew I had done my best. It still hurts me today that in some way I failed her because she got the sores. I'm so glad she did die at home and that's how I cope with her passing.

Now I work for Marie Curie, I know what we could have had. I can empathise with people more and encourage people I work with, to get the help and support they need. My role as a Senior Health Care Assistant is one I take pride in and every time I put my uniform on, I know just for that night, I am going to make a difference to someone else's life.

Gail is supporting Marie Curie's biggest annual fundraising campaign, the Great Daffodil Appeal, which takes place throughout March and encourages everyone to give a donation in return for a daffodil pin. Volunteers are still needed - find out how you can sign up here or call 0845 601 3107.

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