It was going to be difficult to manage Shand at home after his last couple of months in the hospital. It was mid-November.
He had terminal cancer of the bladder, and he was already bearing the difficulties of living as a ventilated patient with Advanced Muscular Dystrophy. In his younger days, however, he had fought his corner for Independent Living. This meant that his staff had been in place for years, and were known to him. They had been hand-picked. They had continued to work their usual shifts while he was in hospital: washing and dressing him: getting him up: feeding him. At night, one of “his girls” went in to set up the ventilator, hear about his day and generally provide a bespoke service.
The Nurses – originally sceptical – realised that this was a huge weight off their working day, and of tremendous benefit to their patient. One Saturday night. when I had no-one to send in because of sickness, Nursing Staff were extremely annoyed.
He had been transferred to the Western General in Edinburgh for his last few days of hospital stay, and he voiced that it was of prime importance to him that he should die at home.
“Coming home” therefore meant transferring him from the Western General in Edinburgh to his bespoke accommodation in Lanarkshire.
Again, his forward-thinking had played an essential part. Having been key in bringing the first computerised car in Scotland,(now in the Glasgow Museum of Transport) he could drive straight in and sit in the upfront driving position. This made the journey home much more comfortable.
At home a Closomat toilet – or, as he called it, his “wash and blow dry”- had been installed for years. The ceiling hoist was of great importance when getting him out of bed – although he voiced his preference to be lifted by someone competent where possible. (He was a one-man lift due to the weakness of his shoulder muscles.) If members of staff were willing to take the responsibility this was not discouraged.
Staff were given further training in the mini trach that was now in place, and everyone was willing to give that bit extra.
As his condition slowly deteriorated, we made him as comfortable as possible. He needed no turning during the night, thanks to his Ro-Ho mattress. When a position change was needed, it only required one person to turn him, thanks to the use of a net curtain. (This tip was given to us by Margaret Blackwood, to whom we will always be grateful. A net curtain is strong enough to alter the position of a patient but NEVER marks the skin – as a wrinkled draw sheet used to do. It was an essential tool.)
Two of his school friends came to visit on Saturday before he died: they brought oysters and champagne. This was an excellent choice, as both are easy to swallow and he had always enjoyed the good life!
Once they left, he did not wake again. What a way to go!
Despite is disability and immobility, after six weeks at home, there was not a mark on his skin.It was gratifying to give him the ending he so much wanted.When I phoned his staff to let them know of his passing, they immediately turned out to dress him for his final journey. They stayed until the Undertaker arrived, so they could say a final goodbye.
Having seen a great deal of death in hospital, I can honestly say that this does not compare.
And I wonder just how much it saved the NHS? I did ask the question: but was told that the NHS can only show a cost: they are not set up to demonstrate a saving.
Perhaps, as we consider Person-centred Care and Integrated Health and Social Care, it is time to look at these questions differently.
Was his legacy a model to consider?
©Linda Jane McLean