Carers week was from the 5th to the 11th of June, and to mark the importance of this week, a member of the Ataxia UK team interviewed Jane, a former carer.
1. Can you tell us a bit about yourself
My name is Jane. I am a telephone befriender and have been doing this for eighteen months. This came about because my husband was an ataxia patient, and we received an awful lot of help from people when he was alive. It was just something I wanted to get involved with and give back if I could.
2. What kind of support did you receive as a carer?
There was a lot of support from Queen Square. However, we didn’t get as much support within our own community, mainly because people didn’t understand the condition. And as a carer, there was a lot of times where I felt very vulnerable and very alone and this is what I would like to try and help with now.
3. What areas could carers receive more support?
An almost befriending role, but for the caregiver rather than the cared for. Someone the carer can go and speak to, reach out to whenever they’d like, and a place where they can just speak about everything and anything.
4. How did you balance your carer’s duties and your personal life?
I think that was the problem. It really wasn’t very balanced because it became consuming. And my husband, although he, I think, wasn’t very accepting of the condition. It was genetic, so he watched his sister die six months before he did. His older brother is still alive and has ataxia.
Although it was great that he didn’t say no to anything, he was also very blinded by what he couldn’t do. And that had an impact on our relationship, I think, because I was trying to encourage him not to do something, and he didn’t accept that. So he caused himself a lot of damage because of this. But I do appreciate having met a lot of other people now with ataxia, that one of their great strengths is their ability to keep going, keep going, keep going, and almost not say no to things. But he lost his reason, so that made life a lot more difficult. And in the last 18 months of his life, possibly a bit longer, he developed dementia. This was something he didn’t accept when he was diagnosed. He just turned around to the consultant and said, I don’t agree with that.
5. What advice would you give to new carers?
We did have carers, very reluctantly on his part. My coping strategy was to walk away, I don’t mean very far, I was obviously always within earshot, but to walk out of the room. This is because obviously we were getting nowhere with arguments. I didn’t want arguments and deep down, he wouldn’t have wanted arguments either. Eventually he had to go into care because I couldn’t cope. I had physical problems as well, and impending surgery, which is the reason for the carers, which he grudgingly accepted, but he never accepted going into care, and as it turned out, it wasn’t very long, it was only about ten weeks, but that then ran into the beginning of COVID so I never actually saw him again. Which has added to the sadness and guilt.
I think a suggestion would be to ask if they could talk to people who’ve been in a similar situation, because I think that was the thing, I found difficult. There was no one, no one to share with, because your immediate family are your children, in my case, aren’t local and very busy and nobody really knew what you were talking about because nobody had experience of the situation. Sending a big virtual hug to all the carers out there. You are not alone!