“I was able to be his wife rather than his carer”
“Your husband is a fiend!” said Pete. I laughed. “Well, I know that but what makes you say that?”
This was December 2013, and my husband Alan was in a hospital bed in our home, hooked up to a catheter (a tube which is passed into the bladder to drain urine) and a syringe driver (a battery-powered pump that delivers medication through a small plastic tube under the skin). He was in the last weeks of his life.
“He told me that he goes for a walk every evening and that I should help him out of bed.”
“What?! He can’t get out of bed!”
“Well, I know that now,” said Pete. “I lifted him up, noticed all the tubes and threw him back onto the bed immediately. He cackled with glee that he had tricked me!”
I pictured Alan reacting with the glee that Pete described. He never lost his wicked sense of humour, in spite of everything he went through from being diagnosed with a brain tumour aged 35 in June 2010 to his death in December 2013.
Pete was my yoga teacher Sarah’s husband and had agreed to sit with Alan while I went and practised yoga with Sarah. They were both so kind and supportive to us; Sarah even made time to do private lessons with Alan when he lost mobility in his left side because of the tumour. We had so many wonderful people who supported us, not least the team at our local hospice.
Alan was sceptical, to say the least about being under the care of a hospice. “It’s a place for old people”, he told me. I suggested we go and visit, just to see what it was like and he begrudgingly agreed. We found a place full of life and warmth, and amazing people who genuinely wanted the best for us both. Alan started regularly going for a massage and other complementary therapies.
Something that helped me immensely was having a long and in-depth conversation with Alan about his wishes. I was guided by a website called the Conversation Project, and Alan and I sat in a café and talked through lots of questions about how he wanted to be cared for, his preferred place of death and any wishes he had for his funeral. It was such a hard conversation that I remember so vividly, and which ultimately helped me to make clear decisions that reflected his wishes when he was no longer able to. Coordinate My Care is now offered by hospices and the NHS as a matter of course, which is fantastic.
Alan became very ill when we were staying away from home for a few days, and the (angel!) GP who was called was able to get him a bed at a local hospice there rather than him ending up in A&E. The hospice doctors recommended not trying to move him, but I knew he wanted to die at home and I knew I had to try to get him there. He rallied before his journey and actually loved going in the ambulance! He had a bed in our local hospice inpatient unit for a few days while the team supported me with getting ready for him to come home.
And so, he spent the last couple of weeks of his life at home, where he wanted to be. Family and friends were able to visit, and his last days were full of joy as well as sadness. He was largely pain-free and comfortable. With the remarkable support we had from the hospice, Alan’s GP and the district nurses, I was able to be his wife rather than his carer, which was important for both of us. Alan had a good death, and that is something I will always be grateful for.
I am as passionate about fundraising as I am about hospice care, and I am so proud to have joined St Luke’s as Director of Fundraising! The team here offers such an important service to the community of Harrow and Brent, and fundraising is vital to enable us to provide the amazing care we offer to our patients. We need the continued support of our community, and I hope you will consider supporting St Luke’s.
Director of Fundraising, Hannah Richardson expresses her passion for hospice care, having experienced first-hand the extraordinary difference support from a hospice can make.