I am in my seventieth year and have been a carer for sixty-three of them, my name is Alison and I live in Sheffield. I found myself a carer for my father who unfortunately became ill when I was eight. This was 1963 and due to a very rare non-cancerous tumour on his spine he had to have a major operation in Derby and was away in hospital for two years. This operation unfortunately was not successful; my brother and I would wave through a window when we visited as we were not allowed in the hospital.
Of course there was no Invalidity Care Allowance for my Mum to claim for as it didn’t start until 1976 and married women were not eligible to claim. She would travel by train to see Dad with a spare 50p in her purse. When Dad came home we had to move house that would accommodate his needs – being a bungalow. Hospital stays continued but at the Lodge Moor Spinal unit in Sheffield. After being married in 1976 my beautiful son came along in 1985, he is my second son after having Ben in 1983.
We knew the day he was born that there were problems – he started having continuous febrile convulsions and that was the start of very frequent stays in hospital. Numerous tests followed but without any conclusion of a condition other than ‘global development delay.’ My career was put on hold as I couldn’t’ sustain working and being at so many appointments and therapy sessions. I didn’t work again for 20 years until Craig left school.
At that time, you couldn’t claim DLA or any other sort of benefit until your child was five years old, so my husband had two jobs because our outgoings were more than we earned. We struggled at times not just financially but emotionally too. Craig is almost forty and has had many ups and downs with his ongoing health issues – not bad to say that we were told he may not live until his first birthday. He still lives with us but requires twenty-four hours nursing care, following a regime for feeding. He is tube fed with bottles of nutrisip feeds, water and medications as he has dysphasia. He also has a stoma and suprapubic catheter to maintain. He is totally dependent on us for all his daily living needs. He is non verbal but we can understand him through facial expressions. When Craig left school and started at a wonderful day service for adults with complex needs I started work again albeit part time at the local Mencap & Gateway charity. I have made many friends there both colleagues and other parent carers which has been a life saver.
Unfortunately, I fell victim to the overpayment scandal of carers allowance as on several occasions was paid slightly over the upper earning limit and in total had to repay £2787.00. When you go only 5p over the limit the whole week of carers allowance is taken off you! My employer tried to ring DWP to explain that it was their payment system at fault but to no avail. This has obviously caused more stress and worry on top of caring. I am now of retirement age but still work nine hours per week as I love the work I do. I do not of course get carers allowance anymore as I have a well-earned state pension, this is despite our caring responsibilities getting greater.
My father died twenty years ago – my Mum having cared for him for forty years at home with our input as much as we could. My Mum started with dementia five years ago at the start of the covid lockdown. It was a very difficult time as I was the only member of the family to go in her home and assist her. I would do her washing, cook her meals and assist with personal care. The gradual decline of her cognitive health meant that at the end of 2022 she went into a nursing home. She died a month ago. She had been such a strong supporter of our caring role for Craig despite her own caring responsibilities most of her life.
Two years ago Craig was admitted to hospital with pneumonia and an empyema due to aspiration and we nearly lost him. My husband and I did alternate 24 hour shifts living next to his bed in a reclining chair attending to his needs alongside the medical team for 7 weeks in total and then continuing at home for several more weeks.
Our family has lived constantly caring for one family member or another. Careers have been greatly affected by these life events and certainly has had an impact on our physical and mental wellbeing and our capacity to be in the paid employment we would have pursued.
How long we can sustain this level of care? We don’t know.
After losing respite last year due to the provision closing we were a whole year without breaks. Fortunately Craig has just started with another provider-we get 70 nights a year.
There should be more recognition of carers that dedicate their whole life caring for loved ones.
