Henley and Tricia Thomas live in Malvern and have been married for 54 years. Henley, 85, a former English and Drama teacher, was diagnosed with Parkinson’s Disease ten years ago.
“The sadness in all this was that our retirement, which was going to be full of activity, has been slightly changed. Henley is doing extremely well. He took on his illness as a quest not to be beaten and we made the pact that we would stay together and that we would try and see it out at home, which was very important to us. We are a close family and our children – much as they are wonderful supporters – are grown up with our son living in Switzerland so we don’t see an awful lot of them.
We have experiences of many of the wonderful things that St Richard’s makes available. As we wanted to be at home as much as possible, the St Richard’s Hospice at Home service was absolutely tailor made for what we wanted. We were introduced by the Parkinson’s nurse of the area. St Richard’s understands the demands of this debilitating illness and worked with us in a way in which we feel that we’re in control, as much as we want to be, and we can talk about anything. There’s time to talk about how you help the person understand what is going on for them and to be able to deal with it.
For me as the carer as time goes on it becomes a 24/7 commitment and however much you may love your husband it’s very hard when you don’t get any time to yourself. You feel in danger of losing your identity, your friends, and you don’t have time for yourself. But that can be righted by the Hospice at Home service which we find absolutely invaluable. The young people that come have made themselves at home without being intrusive, always glad to see you and available to help out. You know there’s a commitment from them of being part of a bigger St Richard’s family.
You can put up with your sleep being disturbed but it doesn’t cease, it gets worse. The Hospice at Home night service means you get a good night’s sleep. Sleep deprivation for me, when it did kick in, was very, very difficult: you can imagine your patience gets short. To lose your sleep past a certain age is something that’s very difficult and as a carer you have to stay healthy. Not having enough sleep is the first thing that makes you feel ill. I value the night service – of course it’s, something that’s demanded a lots so you don’t get every night, but you value the two or three nights you may get over a period of time.
It was strange the first time it happened; I was awake for half the night worried about when I was going to be disturbed as usual. To be able to put your head down on the pillow knowing someone else is looking after the person that you wake up for every few minutes to attend to, it’s beyond explanation, it’s wonderful. It means when you get up you can cope so much better the next day. I happen to be someone who doesn’t have family close to me so I can’t call on them and there must be many like me.
For support in the day from the Hospice at Home team the idea is you can do something literally for you, something such as having coffee with a friend. It took some time to realise it was for me. I thought I can fit the shopping in there, I can do something else, but it’s not for the practical side, there are others you can find out who can help with that. It’s for you to say this time is mine and I can do what I like with it in the knowledge that the person you look after is in good hand. That’s so invaluable to me and in my own home. What more could you ask for?
I also go to the carers group meetings which are invaluable. I’m part of a group of people that choose to come and share amongst themselves the very private moments, that we don’t discuss outside the room. It does help to offload what you can’t offload anywhere else.
We’ve been involved with St Richard’s for three years and they are always there with something you may need. Their code is ask: ask if you need anything. That takes some getting used to, as society doesn’t offer that as a code at all. St Richard’s do meet your needs, I can’t say how much we value it, it’s unbelievable.
With St Richard’s you can talk about subjects that are so difficult and be helped to confront them and be at ease with them. This is a blessing because no-where else in society is that available to me. For me a hospice is a bit like a travellers’ inn on the way in life and you’re all going to enjoy yourselves while you stay there and move on and where you are cared for with the utmost respect and unconditional love.