Phil is living with Huntington's disease and has weekly visits at his Bradford home from Barry, a Marie Curie Companion volunteer. Here, Phil's wife Barbara (pictured above, left) and Barry (below left, with Phil) explain what a positive difference this support makes to all of them.
“Barry’s visits are so important both for Phil and for me – it’s such a fantastic scheme”
Barbara says:
Barry comes for three hours every Monday or Tuesday. His visits are so important both for Phil and for me. The Companion service is a fantastic scheme.
Phil was diagnosed with Huntington's disease in 2009. He had to stop working as a postman in 2011, and I stopped work – in the local tax office – in 2020 to care for him full time. He’s now in the late stages of the condition and his speech has more or less gone. If I ask him a question, he can say yes or no. Or if I give him a choice of two things, he can sometimes make a choice. So he can’t have a conversation but he can communicate. Having company is really important for him, and for me as well.
When Barry is here, I know that Phil is happy and safe and I have a few hours when I can get out and do things – take our dog Ruby for a proper walk along the river, meet up with friends somewhere different, even go for an ice cream.
In the past we’ve paid for sitters, but when we heard about the free Marie Curie Companion service it was a no-brainer.
It’s such a release for me as well to be able to have a proper break and know that Phil is being cared for. It’s good for my mental health and even my fitness levels. I feel so much better for being able to have a good walk.
“My visits are about Phil being able to see a different face, and giving Barbara some respite”
Barry says:
If the weather’s not great Phil and I will do something together like playing dominoes. But if the weather’s good I’ll take him out in his wheelchair and we’ll go down to the local pub. He likes his Guinness.
My visits are about Phil being able to see a different face, maybe get out a bit, and also to give Barbara some respite.
Phil, right, enjoys playing dominoes with his Companion, Barry.
I’ve volunteered with Marie Curie for five years and I currently visit two families. I had some free time, and I wanted to do something useful with it. Initially I thought I’d be volunteering in a shop, so when I went for a chat about opportunities with Marie Curie and they told me about this role, I was a bit apprehensive because it was outside my comfort zone.
I had training before I started visiting Phil, including about Huntington's disease and how people are affected by it. That has been really useful in being better able to understand Phil’s needs and his challenges.
My mum spent time in a hospice in the past, so doing this type of volunteering feels like a good fit for me. I was quite surprised by how much I enjoy the role though. Joining the Companion volunteer service was such a good decision.
Companions provide free emotional and practical support to people living with any terminal illness and those close to them – at home, in hospital or by phone. Find out about services in your area. Our free Support Line is also here for you on 0800 090 2309, with practical, emotional and clinical information and support.
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