I care for my other half, Margaret. She has Parkinson’s and was also diagnosed with cancer last year. Over the last 18 months my caring role has dramatically increased as she has been undergoing chemotherapy and had an operation on her bowel and intestines.
The chemo affected her Parkinson’s and caused damage to her brain. She came out of hospital 3 weeks ago and has needed an intensive amount of care. Most days I’m on call helping her between 5 in the morning and 10 at night. It’s incredibly hard work.
When she left hospital we had paid carers coming to help for the first 6 weeks. While they were helpful, they didn’t ever come at a consistent time in the morning or evening, so it screwed the whole day up.
We now have a local care company coming 3 days a week for an hour and they always come at 8.30am, which is great. The carer is a lovely woman who my wife likes and who will do anything that needs doing. She helps to get Margaret dressed and showered.
I find the early mornings the most challenging. I’m in all day because Margaret is recovering from surgery and can’t go out, and I can’t leave her on her own. I try to speak with friends on the phone regularly and we use Facebook Portal, which is voice controlled, so Margaret can call people too. She’s not able to use the buttons on a phone so this works well for her.
Carer Support Wiltshire carried out a carers assessment for me earlier this year and it resulted in a direct payment for 7 hours a week care for Margaret so that I can take some respite. Twice a week I try to get out for a few hours. I pop into town or up the road to the pub to meet a friend. I need that personal space for my mental wellbeing.
Those 7 hours have helped me tremendously. Just that small amount of time to myself makes a huge positive difference. Previously I’ve saved up the money and she was able to be cared for, out of the home, for 2 days. I needed that because our central heating had packed up and we had to have a new boiler. Builders and plumbers were working in the house and the floors were being taken up. I couldn’t have coped with looking after her while all that was going on.
More respite is what would make things easier for me right now – more time to be able to do things. But it’s difficult at the moment to find people to come in.
I’m a good cook but unfortunately Margaret fell while recuperating and broke her jaw, so all the food has to be cooked and mashed up. It’s hard work and I’m on call 24/7.
I’d love to be able to come to carer groups and cafes and meet other carers like myself, but I need to plan everything and it’s not the right time at the moment while Margaret is still recuperating. I hope that in the next couple of months she’ll be up a bit more and life will get a little easier.