Who takes care of the carer?

A few years ago, my Dad was suffering with heartburn and was having difficulties with swallowing. He was diagnosed with oesophageal cancer. Due to his age (69) he was not able to have an operation to remove the tumour and therefore started aggressive chemotherapy.

My mum, already retired, became a full-time carer. Both of their worlds completely changed. Mum was fit and healthy and very independent, attending her gym and tai chi and visiting me and my brother who now live far away. As time went on, she lost everything due to Dad’s illness.

After a few months, Dad stopped being able to eat entirely and was fed through a tube. He suffered terribly with the chemotherapy and, despite three rounds, it did not shrink the tumour. Dad lived another 18 months, deteriorating during this time.

My Mum received excellent support from local health services and Dad’s Macmillan nurse. Dad tried attending the local hospice for a few afternoons but didn’t like it so Mum had no respite from him. He was both physically and psychologically demanding, as you can imagine. Marie Curie nurses were also an outstanding support to us in his last few weeks, as they took over the night shift. Because of their support, Dad was able to die at home.

Mum and Dad were typical Care & Repair clients. They had both worked all their lives and owned their own home. Dad was a mechanic and was able to maintain their large three bedroomed house until their crisis occurred. They had never received any statutory services or benefits and were therefore unaware of how to access support.

Due to where they lived in England, they did not have access to Care & Repair services like the Care & Repair services we manage here in Wales. Upon leaving hospital after falling and breaking his leg, Dad would have been eligible for our Rapid Response Adaptations Programme for adaptations to help him and Mum move him safely around the home. Care & Repair would have helped to move the bed downstairs when necessary and would have supported Mum to access Attendance Allowance to fund the extra costs of caring for Dad. They could also have provided advice about the other services which Mum could access to support her needs as a carer. All of these things, of course, were implemented for Mum and Dad, but nowhere near as quickly and as smoothly as they would have been if they had one Agency like Care & Repair to manage this practical support.

Three years on; Mum lives alone. Her health suffered during the first few years but now she is back to her independent self. She not only lost Dad but lost all of her networks due to caring for Dad, so she has had to work hard at developing her own life again. What does she find most difficult? The answer is managing a three bedroom house and a garden, alone, without a Care & Repair handyperson to trust to do small jobs around the house and without a Care & Repair service to support her through larger works.

I wrote this blog to highlight the amazing work of carers and the agencies which supported Mum to care for Dad and allow him to die at home. I also wrote it to highlight the work of Care & Repair in Wales and why it is imperative that our services are protected in order to support the ever increasing numbers of older people in Wales to live their independent lives.

Rachel Gingell
Policy Officer, Care & Repair Cymru