ELAINE AND CHRIS – LEW BODY DEMENTIA AND PALLIATIVE CARE

My cousin Elaine wrote to me in March and told me she had Lew Body Dementia, at about the same time that we learned of my brother-in-law’s perforated stomach ulcer. Both of these events were shocking. How do you react to the first, something unheard of which turns out to be a hideous combination of Parkinson’s Disease and Altzheimers and involves frightful and frightening hallucinations? You think you would prefer to have the perforated stomach ulcer – until you learn that a chest abscess has developed and that poor old Chris’s condition has snowballed, or rather alvalanched, into an irreversible near-death with breathing difficulties and oxygen fluctuations. And then you are told he has moved into palliative care, so you know that there is no hope.

We all feel immortal until our lives are touched by the decline and death of those close to us. I refer to closeness of heart, because Elaine and I are thousands of miles apart, and Chris – although only two hundred miles from us, might as well be with Elaine for all the good it would do to visit. I can only type out the words: ‘I am thinking about you’ or ‘I am hugging you in my thoughts’ when I long to be able to take their hands and press something of my soul into them.

Losing family and friends impacts subtly, creeping into our lives, eating away at our security and forcing us to adapt to a quieter and less colourful patchwork of existence. Sometimes it takes years to realise how much you miss these people, because you have turned your back on them, refusing to accept that they have gone. It must be better to try to face their pain and suffering, but this is often too difficult and stressful; bravery is old hat, these days and we jump into the next task awaiting us in our daily lives, convinced that this is the right move. Shock plays its part too, for who could be so callous as to be completely unaffected by grief?

Elaine and Chris are still alive – at this moment – but they are not the people we knew and loved. Severe and desperate illness has changed them forever, as we in turn are changed by accepting their decline. It is important to remember them as they were, or we lose them completely. So I will remember their youth, exuberance and kindness, and above all the laughter. Both of these two were people who lived to laugh, and who would wish to infect others with their happy, sparkling take on life. Laugh on, you two! As hard and as much as you possibly can. I long to hear it.