These are the words my husband said a lot when he was battling motor neurone disease (MND) . We also used to say, ‘‘Where there’s a will, there’s a way’’ a lot. Indeed, during his illness we did everything we could to keep his spirits up after being told he had six months to two years to live.
“Make life beautiful and keep hope alive,” would be my abiding message to anyone caring for a loved one with a terminal condition. It’s not always easy, but what’s the alternative?
My life was beautiful. I was happily married to Alan. We both had good jobs and our social life was busy and joyful. Then, on November 21st 2017, the bombshell landed. I will never forget that day. After experiencing some trouble with his right arm, Alan went to his GP, then had a raft of tests with a neurologist. When we were told he had ALS, a form of MND, it was unbelievable. Isn’t that what Professor Stephen Hawking and those rugby players have?
Devastated but not defeated, we set about living every moment with as much joy as possible. We dug deep and found strength. Don’t get me wrong, it was very tough, and I often cried through the night once Alan was asleep, but we adopted a positive mindset and that helped us enormously. It was hard being both Alan’s wife and his carer but in some ways it brought us even closer together as we made special memories that have sustained me since.
“Get as much physical and psychological help as you can” would be another piece of advice. We did. I gathered up friends and family to support me with caring duties. Many found it a privilege to be asked and Alan enjoyed having the company of those he loved. Both of us had counselling because we went into ‘anticipatory grief’. I had never heard of the phrase. Apparently it’s common but no one ever talks about it.
When Alan contracted pneumonia and was rushed into University Hospitals Coventry and Warwickshire, I thought that was the end. But after a few weeks’ worth of strong antibiotics and robust physio, he pulled through. He then spent six weeks at Coventry Myton Hospice for symptom control before coming home. The hospice was amazing. I have nothing but praise for everyone there. Uniquely the staff helped Alan dictate his life story which he proudly gave me on a CD when he came home.
When Alan died in the summer of 2019 I was shocked and devastated, even though I knew it was coming. Four years on and I am beginning to feel positive about life again. I am a volunteer at a local hospice and for MND Association - raising awareness and lobbying MPs and councillors. Using the biography Alan dictated, and my own notes from his illness, I have written a book about our experience as a way of helping others who care for a loved-one who is seriously ill. 100% of the proceeds go to charity – including The Myton Hospices. It’s my small way of saying “thank you” for everything they did for us.
