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       My Way

      Human beings are highly resilient. We adapt to adversity, and find ways to maintain our inner peace as best we can. Often, we use coping patterns that we developed very early in life: if you’ve always ‘put on a brave face’, then that becomes your preferred way, and you may find it difficult to understand someone who copes by sharing their distress out loud. Neither you nor the other person is coping better or being braver than the other; one simply finds inner peace by venting, whereas the other’s peace comes from feeling self-contained. If you are a ‘take control and plan the details’ person, it can be tough for both of you if you are sharing a distressing situation with a person who copes by thinking about everything except the challenge ahead: one person’s avoidance is in direct conflict with the other’s need to plan, and this is stressful for both of them. Finding middle ground on which to meet and work together requires sensitivity, tact and patience, and perhaps even the help of a trusted third party.

      The next few stories offer some insights into the widely different strategies people use, often completely spontaneously and without any insight into their own behaviour. You may recognise types of people you know very well – you may even recognise your own style.

      Everybody prefers to manage things ‘my way’. The end of life is no different.

That is the Question …

      The strength of the human spirit is astonishing. People all think that they have a limit, beyond which they cannot endure. Their capacity to adapt and to reset their limits has been a constant wonder to me over my decades in working with people living with some of the most challenging illnesses imaginable.

      Eric was a Head Teacher. With capital letters. He was an organiser, a man who Got Things Done. He managed a large inner-city comprehensive school, and ‘his kids’ knew that he would support them through any challenge, whether by telephoning the deans of their university faculties or by attending their interviews under caution at police stations.

      Being a head teacher demands a lot of one’s time. Over his career, Eric (and his family) had made this sacrifice, and he was looking forward to spending much more time with his children and grandchildren when he retired. Developing motor neurone disease was not part of his plan.

      His illness presented itself slowly. He caught his toes from time to time while running on a treadmill, but when he fell off the treadmill completely, his GP found some odd reflexes in his legs and sent Eric to hospital to check he hadn’t damaged his back. The spinal surgeons said his back was fine, but he had three years or less to live. Those ‘odd reflexes’ and occasional trips were the first signs of a creeping paralysis of all his muscles as they gradually lost their instructions from the nerves that connect them to the spine and brain. This is MND.

      Remember, Eric was a head teacher: he got things done. Naturally, he looked up his illness on the internet. The news, delivered on screen, in writing and with no pacing or pauses for thought, was horrifying. Eric decided that he would kill himself before he became a burden to his wife. He considered a variety of ways to do this. Should he fake an accident by driving into a motorway bridge support? Or could he use tablets? Perhaps a plastic bag? He got more information from the internet, and tried to imagine how and when he should act.

      Faking an accident seemed his best plan, and he aimed to kill himself before the grandchildren could notice his illness. He hated the idea that they might consider him decrepit. If he accomplished his mission before the summer, then he judged that everyone would recover in time to take a special holiday at Christmas that he had booked, with gleeful anticipation, when he retired. Eric had a plan and a timeline. On a bright spring morning he set off in his car ‘to collect a parcel from the post office’, with the secret intention of killing himself. The next thing his wife knew was when he walked back into the house just a few minutes later and said, ‘I can’t manage the gearstick.’ Paralysis of his arms had begun, and his driving days were over. So much for Plan A.

      Spring became summer, and Eric gradually lost the use of his arms and legs. He had an electric wheelchair that he used in the house and around the local streets. He played with his grandsons, who were thrilled with his wheelchair and covered it with Batmobile stickers. He was astonished that they were not at all daunted by his increasing immobility, and loved straightening his spectacles or helping him to blow his nose. Carers helped his wife to get him up and dressed in the mornings and back into bed at night; his daughter who lived nearby came with her sons after school each day to give her mother a chance to go shopping. Eric realised that committing suicide with tablets (Plan B) was likely to be impossible now that he was never alone.

      So Eric, who had been a Head Teacher who Got Things Done, was now a man in a wheelchair who had things done to him. He had expected that he would hate this, that he would be a burden, and that he would rage against the indignity of immobility. But to his surprise, he found that he was still a man who could Get Things Done. The vegetable garden he had planned was tended by his wife and son, with Eric nearby as adviser (‘That’s not a weed, it’s a row of parsnips, you turnip!’), and they relished their outdoor time together. He designed a pot garden for herbs beside the kitchen door, and it was planted by his grandsons under his supervision. He played chess, read books, savoured a fine single malt.

      Eric’s wife, Grace, was a great cook, and relishing his meals became Eric’s daily pleasure. By the summer, though, even this was a lengthy chore as the task of chewing and swallowing became more difficult. Along with eating problems, Eric had increasing difficulty with speech as his lips and tongue became weaker. He knew from his internet research that some people with his condition needed feeding tubes to keep them nourished. He decided that he would rather be dead than not eat ‘the way nature intended’, and wondered whether he could starve himself to death. This became Eric’s Plan C, although he didn’t yet have a start date.

      At midsummer, Eric developed a new problem. In effect, he had delicious-dinner-related pneumonia, because his swallowing muscles no longer protected the top of his windpipe. Some of that lovingly prepared soft food had been silently sliding down into his lungs when he swallowed. He wondered about letting himself die of his chest infection, but because he was hot, breathless and uncomfortable he opted to have treatment. He was admitted to hospital for intravenous antibiotics.

      I first met Eric that week. He wasn’t sure the palliative care team had anything to offer him. Weren’t we a bit useless? He explained his absolute opposition to a feeding tube. He explained his hope of an early death so that the family could recover and have a happy Christmas. He explained his belief that euthanasia would be a good treatment for him, and his frustration that it was forbidden by law. He explained his decision to stop eating as soon as he was sent home from hospital.

      It was clear that this was a man who Got Things Done. If he decided to starve himself, he would succeed. So we discussed what help he might need to remain as comfortable and as in-charge as possible while he was dying. He said that he feared pressure ulcers on his skin (very sore and possibly smelly), and seeing his family in distress. And choking – he was pretty certain that his illness would end in an episode of choking. Taking his concerns one by one, we considered ways to address them.

      Pressure ulcers are sores that break the skin open, usually where it is squeezed and stretched between a bone on the inside of the body and furniture or clothing on the outside. They can be very painful (think how much a single blister hurts in a tight shoe), and become more likely as a person loses the ability to shift their position on their mattress, and as they have less fat padding their skin. So Eric was right – I agreed that he was a sitting duck for pressure ulcers. This unfortunate pun was the first glimmer of humour in our relationship. His eyes twinkled and his lips twitched, and he gave a wheezy, weak laugh.

      Potential ways to avoid pressure ulcers, I suggested, might be to keep him rotating on a rotisserie-type gadget

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