The one time that sticks in my mind most is when a district nurse came flying in to see John. Just before she left she asked how I was. I said, “Things are tough with John and I’m really stressed”. She asked what job I’d just retired from. I told her I’d been a social worker, for 20 years. She laughed and said, “You’re stressed? Compared to the job that you did this must be a doddle”.
But it’s not. In my job as a social worker I had control and I was listened to. As a carer to my ex husband I have no control and I feel like I have no voice and that I just have to get on with it.
The reality of being an unpaid carer is beyond what you can imagine. As a professional I didn’t really know what was going on for people. I was a good social worker and I tried to see things from the point of view of carers when I was working with them, but I realise now I had no clue.
Carer stress is talked about and people think they understand, but no one knows what it’s like for me and for thousands of other people doing what I do.
When my husband and myself retired two years ago we had plans to travel. My husband fitted out a campervan for us.
My caring role started off in a very small way. At the start of Covid my ex husband John asked for my help to find someone to come in and help him. He had COPD and was struggling, but I couldn’t find anyone at the start of the pandemic who would go and see a vulnerable person.
So I started helping him myself. I did his housework and helped him into the shower a few times a week. We muddled along. We went shopping together. We were managing okay.
But then John became more unwell. He’d been discharged from the COPD clinic but was under the Royal Brompton in London. Sadly they couldn’t help – John wasn’t a suitable candidate for surgery but the consultant was great and gave me loads of info on the help John should have been getting. This gave me the push to fight his corner and get him some support from health, another battle to take on.
I started managing one of the drugs he was prescribed because he had a tendency to take too much when he was unwell. The amount of care I was providing him was beginning to creep up.
Then he started vomiting whenever he ate. After several visits to the GP one of them sent him immediately to hospital where he was diagnosed with oesophageal cancer.
Since then I can’t tell you how awful it’s been for me and for John.
I have said I can’t do this – there is no support, I’m responsible for everything! We had our campervan and we had all these plans. I said there must be someone who can do this but there wasn’t.
CHC provides paid carers who come in and give him a wash and do his medication, but it doesn’t look at the whole picture – who’s going to clean his house, do the shopping, do the banking, all the day-to-day stuff? I now think for him and do everything for him.
It’s exhausting being the person who has to navigate around the systems and get the best for the person being cared for.
Systems don’t talk to one another so you end up being the middle man. The pharmacist says they can’t do something, the GP thinks you can do everything.
He has PRN medication (to be taken when needed) which they say he should be able to manage himself, but he can’t. His short term memory is bad. I have to draw up syringes of oral drugs he has to take every day.
I’ll be at B&Q having coffee with a friend and I’ll get a call from the carer saying he can’t breathe, what should they do? I have to be the expert – ask how he is, when he last took his medication, advise how much to give him.
At short notice if he gets sick I’ll be with him for up to 7 hours waiting for the doctor or an ambulance. I have to be there when the doctor is coming because John can’t remember things.
John is so grateful to me and my husband. He thinks my husband is great and they get along so well. But it’s been a huge pressure on our relationship.
We can’t go anywhere, even on a daytrip, without a massive amount of planning. I can get cross, frustrated and tearful. I have my own health condition, which is negatively affected by stress. I don’t get to walk the dogs with my husband like I used to – he does it on his own. But overall my husband puts up with my stress and supports me. We work together as a team.
I wouldn’t have had a clue without my professional experience. Anything I come across which is a challenge, no one ever sorts it out for me.
I wouldn’t change anything because if I hadn’t stepped in, John wouldn’t be here now.
He’s been in a hospice for the last few days because he needs help to control the pain. My husband and I spent three hours with him yesterday, sitting in the garden in the sunshine. I’ll remember it forever – at the hospice there was no pressure, nothing to do or worry about.
It’s a contrast though to the last year or so. I don’t know how it all happened. Everyone says John is so lucky to have me but really… what would he have done without me? The expectation on all carers is madness!!!
Julie pictured with her husband
