My wife and I have been in Sri Lanka on holiday. As well as experiencing the sights and sounds of a fascinating country, the break afforded me some time to reflect. Before we travelled, I compiled an illustrated guide to our holiday for Mum. In the past, she’d always taken a great interest and delight in trips overseas. I hoped that by giving her some visual prompts, Mum might be able to appreciate this holiday. While in Sri Lanka, I spoke to her every four or five days. Sometimes, she seemed to register that we were away but on other occasions, she received the news that we were abroad as if it was the first she’d heard of it. Oh well, the intention was there.
Being away from daily contact with Mum gave me some space to think and in my more reflective moments, I found myself pondering the human existence. Now, that sounds far more grand than it actually was and probably appears a touch pretentious as well. Well, I make no apology. Watching a loved one grappling with dementia does prompt questions about identity, theirs and our own. Who are we, if not the sum total of our experiences and relationships? And, if those relationship ties are fractured and those experiences forgotten, who are we then?
While in Sri Lanka, I had the enormous pleasure of meeting a special lady. Lorraine Tamitegama runs the Lanka Alzheimer’s Federation with her husband. They’re about to open their first day care centre dedicated to dementia care. They founded the Federation ten years ago and have done so much to raise awareness of Alzheimer’s in Sri Lanka. Lorraine spoke passionately of the work still to be done, in Sri Lanka and next door in India where it’s reckoned there are one million people with a form of dementia. She also told me a heartbreaking story about how one farming family had responded when one of their number had developed a form of dementia. Unable to cope when this family member became incontinent, they’d taken to tying him up in a chair outside all day every day so he didn’t foul inside the house. What price dignity? It made me realise how “lucky” we are at home. If you want to learn more about Lorraine’s work, go to www.alzlanka.org.
And so, back home. Frank Sinatra once extolled the virtues of travel but concluded it was so much nicer to come home. That has always been my experience but I have to say that however much I wanted to see Mum, that feeling was mixed with concern for what, if any, changes I might notice. It’s very difficult to be objective about a loved one with dementia when you speak to her every day and see her regularly. Seeing Mum for the first time in three weeks, I was able to see unmistakeable signs that the disease is taken an ever-stronger grip. Little of what she said to me made sense last Friday and I was struck by someone trying, in vain, to make sense of the world around her. What must that be like? We take so much for granted – those memories and shared experiences I mentioned earlier – and how can we cope when those are slowly but surely taken away from us. But, and there is a but, the hug she gave me when I walked in will stay with me for a long, long time.
You see, she’ s still my Mum.