Read Amanda's story
Amanda is in her 60s and lives in Surrey. She was formerly a carer for her husband.
Hello, my name is Amanda. I have been a carer for a long time, from 1992-2022.
Many years ago, before I was married, I was caring for my late father. In more recent years, I gave up my life to care for my late, beloved husband.
He was diagnosed with terminal cancer in 2018, before that he had severe arthritis, ill for a long time, and various other ailments, as well as being deaf for many years. The rest of the family weren’t able to help so I was on my own.
There were tricky days, and he was stubborn, but we managed. However, in the last few years of his life I had to engage outside help, as I was not well with my own health issues.
My husband never went into respite care, as he didn’t want to. So, we carried on as best we could.
COVID challenges
When COVID hit, it was so difficult, as so much support ceased. It was virtually impossible to have a rest or moment to yourself. I had had help for groups like Sight For Surrey’s communicator service. It was very isolating.
However, with my husband being severely poorly sighted, and deaf, I sought extra help from a wonderful local carer agency, to come sit with him while I had a rest, as well as helping with things like bed care, showering. But otherwise, who cares for the carer? Who was there to look after Amanda? It was also so mentally draining too, especially as he got confused because of his medications. But we got through it.
We did also get some help via the internet, including the Godalming Good Neighbours system, with someone picking up prescriptions for example, which helped.
Ongoing grief
Sadly, the worst day of my life came, when my beloved husband passed away early in 2022. Even now I need support from people as I have my ‘wobble days’. Grief, they say, gets better? No. It all depends on the person.
I attended ACS’s former carers group for a while. And have, with another friend’s help, set up a group on WhatsApp for former carers, like us. There’s now seven of us meeting fortnightly, and we hope to get more members over time.
It’s so important to keep in touch with other people who are going through the same thing. It’s also important to look after yourself, and take opportunities for relaxation, new friendships etc. when you can.
What other outside support did you have?
Before my husband died I did get support from Action for Carers (ACS). I managed to attend some ACS events, mainly online, things like Mindfulness, and had some help from ACS staff. I was also part of Carers UK and attended some of their Zoom activities.
Seeing yourself as ‘a carer’
It’s an interesting question – when do you see yourself as a carer? His sister used to say ‘you’re his wife’ and I was – but I was also very much his carer.
Do I have advice for other carers?
It helps if you have a car – and get a Blue Badge if you can. It helps so much.
You also need to be firm. My husband was in hospital for the last few months before he passed away, and they kept calling him by his wrong first name. I had to put them right. And their communication overall was poor.
You have to be firm with everyone, and say ‘enough is enough’ when it is.