I thought you might like an update from me now that I have been in the Weston Hospicecare hospice for two weeks. I have found it a wonderful place to be and I had a real surge of energy when I came here. I think this was partly due to the relief of knowing that I will have the care that I need without burdening my family but also because the hospice is just such a loving, gentle place. Being cared for by the team of staff here is often like having my old friends gently and lovingly nurturing me. I feel truly blessed to be here. My room looks out on to a pretty garden with a bird table placed just outside my window as if they knew before I came that I am a real fan of nature. Everything is given loving attention here. My food is presented on lovely plates and in beautiful cups with my own personal salt and pepper pots and a quality serviette. The bed cover is a beautiful piece of hand quilting and even the pins on the pinboard are pretty little forget-me-not flowers. I have been encouraged to do whatever I like to the room to make it feel like home. I asked John to print off a few A4 size portraits of the boys and family to put on my cupboard. In his usual exuberance he printed me 40 pictures which we have used to decorate two of the walls in a giant gallery of memories. I have also had a continuous supply of fresh flowers. Currently I have three enormous vases of all colours of the rainbow. It’s a real treat.
The other day I had a new adventure when my funky chunky wheelchair arrived. To say that it’s laid back is the best description. Makes it quite hard for John to steer it around without whacking the furniture but then he loves a challenge doesn’t he!! John took me on a tour of the hospice and I was amazed to see how big and how beautiful it was. There is a stunning view from one of the lounges up a pretty hill to an old church and from the garden you can see badgers and foxes in the evenings. There is also a lounge which has games and entertainment for kids which makes it really nice and relaxed when our boys come to visit. Favourite of course is the Play Station 2. I’m not sure that computer game bribery is the best way to get the kids to see me but it works.
My favourite room in the hospice is the chapel. It has a stunning stain glass window and a beautiful cross made of driftwood, Indian cushions decorating the chairs and a large crystal ball where you can float offering candles. It’s a really serene, gentle place. John and I enjoyed just being there talking and reading letters for a while. Once I have got a bit more energy I will go back again and light a candle.
These past few days I have been feeling pretty tired. My room was full of visitors for much of the time for the first few days that I was here. It is wonderful to be so loved though with time I realised that I have to ask people to write rather than visit because the time that I have is precious; I need to rest a lot and the time that I have I need to give to my closest family.
The doctors here have been gently hinting at this for a few days before John and I realised that was what I needed to do. Sorry that this is difficult for some of you but I promise that your love and support are coming through strong and shining through the fantastic letters that we have received. I feel so loved and supported by this. Thank you all.
John and I are at last able to relax together and enjoy being a loving couple thanks to the hospice. When I was at home it seemed that we had a full time job just managing the care that I needed. It really is a massive relief to be here.
The kids are beginning to get used to mum having her new home away from home. Ben brings in his latest drawing project and sits and chats by my bedside while he works, from time to time dashing over to check out how the different gadgets in my room work. It’s a joy to feel his boundless enthusiasm for exploring how the world works. Jack has found it more difficult to be here. I think because he is much more aware of what is happening to me. I have been very upset that he was distancing himself from me although I know it was just to protect himself. Yesterday we managed to resolve things by having another heart to heart and talking about the facts about my illness. I have always been astonished by Jack’s perceptiveness and his clear expressions of his emotions. Jack has led us through the difficult path of how to express what is happening by his intelligent and carefully spaced sequence of questions. I think when he realised that my death was coming sooner than we hoped that he just could not face it … not surprising. Yesterday we resolved things by talking openly about how things are now and it’s fantastic to have my gentle Jack being able to hug and kiss me and look into my eyes again.
I just realised that this letter has become quite sad. I had wanted to write something more upbeat to reflect the fact that I spend so much of my day smiling with joy, enjoying jokes, laughter and love with the people who surround me. It’s a happy place and I am really content here but of course it is transient and I am pretty scared if truth be told of the unknown future of my physical being. I just want to say thank you to everyone for surrounding me in love and support because I truly feel it in every moment.
Wishing you all love and peace
Donations and Clare's Tribute Fund
Without the help of the Motor Neurone Disease Association and Weston Hospicecare our lives would have been so much more difficult. Both organisations rely on volunteers and donations so anything you can spare would be gratefully received.
Clare’s mother Sue-Jane has set up the Clare Viva Towner Mauremootoo Tribute Fund. All money donated goes to the Motor Neurone Disease Association.