A full life
And an extreme post-mortem request
Trevor* told us daily, he had lived a full life.
He suffered from an advanced lung disease that was progressively getting worse, and had defied all odds by living the life he lived - possibly also because he defied all instructions given to him.
He was possibly one of the most active terminally ill patients we ever took care of. Despite needing 24/7 supplemental oxygen, he still persevered with weekly gym classes and water aerobics sessions in his retirement home. Hospitals normally provide extended oxygen tubing to people who require oxygen at home, so that they can mobilise further distances within the house without having to move their oxygen concentrator. Trevor used his extended tubing to snake round the swimming pool so that he could enjoy his exercise class. He also brought his oxygen tank to the gym for personal training sessions, and put many younger and fitter gym users to shame.
Trevor tried to maintain as many of his hobbies and routines as possible. He continued to play the bass guitar in his pop-funk band, often getting tangled up in many wires whilst delivering a stellar performance. He was disappointed to no longer be fit enough to qualify as a volunteer driver for the local nursing home, but continued to wash and buff his car weekly. He also kept to his routine of an orange with lunch and a soda with dinner, something he had done for over two decades. He was the talk of the town wherever he went, because he would walk his dog Obie* with his oxygen tank in tow, refusing all offers of a mobility scooter or a dog-walker.
In his final weeks as his illness took over more aggressively, he spent most of the his time confined to the bed. We made arrangements to allow flexible visiting for Obie, and together they spent many lazy days enjoying movies and snacks. While Trevor lost most of his energy as he deteriorated steadily and expectedly during that time, he never lost the spring in his step. Even in the ten steps a day that he took to the commode and back, he had a twinkle in his eye that was contagious, one that reminded us of his mischief and zeal.
Before Trevor died, he asked us if we could facilitate his post-mortem wish of being strapped ‘coffin-less’ onto the roof racks of his sister’s car, rather than be driven in a hearse. He longed ‘to feel the fresh air on (his) face one last time’.
This was not a request we could honour, but we did arrange for him to be wheeled out onto the grounds daily to have some fresh air.
After he passed away, his sister said he had asked for his ashes to be ‘strewn into the wind; anywhere at all as long as it is in the wind’. She made plans to honour this wish by strapping his ashes to a bicycle on the roof racks of her car and driving through his favourite countryside, fulfilling his postmortem wish in a small way.
Trevor was an inspiration to all the fellow inhabitants of his supported living accommodation, as well as to his personal trainer and water aerobics classmates. He taught us that life is full as you make it to be - regardless of the circumstances you find yourself in.
Each time I see a car with roof racks I am reminded of Trevor’s amusing request and of his zest for life.
Are you living a full life?
*All names and details have been changed to protect patient confidentiality
This is terrific as usual.
I was discussing your posts with my husband tonight, stimulated by something else completely, and I said I was pestering you to publish them in a book. He felt very strongly that such a book would be very helpful i) to some individuals and ii) to the hospice movement (which, in the UK, is in deep trouble, as you probably know).
I am busy preparing a book of my own, but I feel so strongly about this that I would give my time to helping you and am not looking for any credit. Self-publishing is VERY easy. You would just need to decide on which pieces to include, a sensible order, a cover and perhaps someone in the hospice movement to write a Foreword (I am sure they would be pleased to do so). I could sort all that out for you.
Please, please could we discuss this?