“Ich hab mich verloren” (“I am lost.”) The words of Auguste Deter – the first person ever diagnosed with dementia – came back to me as the wonderful Dr Jennifer Bute, told us about her decade of living with the condition.
“If a person is lost, they need to be found,” she said.
When a child claims: “My father is not the same person. He has become a stranger – it’s not true. You have to find them. Happiness can involve risk.”
The second bi-annual Kicking the Bucket Festival is taking place in Oxford from 22 October to 13 November. I was lucky enough to be invited to visit and speak at two of its events at the Friends Meeting House in St Giles on the 31st October and 1st November. St Giles is a majestic boulevard and, when I arrived, it was covered in a light carpet of autumn leaves and bathed in bright sunshine – a wonderful setting in which to talk about life and death.
‘Whose death is it anyway?’ was a panel discussion about honouring the end of life wishes of people with dementia. This can be a difficult area because, by the time a person with dementia reaches the end of their life, they may be unable to discuss their wishes. Equally, it’s a little crass to hand them a copy of ‘What Funeral?’ on the day they get their diagnosis. The right time to discuss end of life with someone who has dementia, was one of many the issues up for debate.
I’d met my fellow panel members over dinner the previous evening – a fine pink steak, profiteroles and good conversation. We were; Maeve McKeogh , a consultant in palliative medicine; John Killick, a poet; Jennifer Bute, a GP with dementia; Hazel May an Occupational Therapist specialising in dementia who’d nursed her father through dementia and cancer and me – a lawyer. The conversation fizzed and crackled.
John spoke of his work with poetry through which he helps people with dementia capture their thoughts and words. I reproduce a couple of his poems below. Maeve reminded us of the importance of avoiding labels. We should talk less about the problems and, instead, search for solutions. We need to focus on how people can be helped to achieve their goals.
Think of your mind as a motorway. If there is an obstruction ahead, look for a detour. “I can’t remember how to cook,” Jennifer told her husband. “Work it out” he replied – and she did. Ten years on from first learning she had dementia, she continues to ‘work it out.’
“It’s hard, as your memory fails,” she said. “You have to keep pushing and working to make your brain work – but you have to do it.”
The BeeGees said that “Words are all I have…” but the simple fact is that there is nothing more important in life than a hug. All care plans should include one. The warmth and touch of another person is sadly often neglected. Yet it’s so simple and, however advanced a person’s dementia, will always be appreciated. Just holding someone’s hand and giving it a gentle squeeze can light up a heart.
“You are the first person to touch me in 15 years.”
These were the words of an elderly man who had his hand held by an audience member . Two hours on a Friday morning, dancing around the human soul, all expertly choreographed by Hazel, our panel chair.
Saturday arrived and the theme was: ‘I can’t die yet – I’m not ready.’ Taking the opportunity to think and plan ahead so that when we die – as we all must – our loved ones can concentrate on remembering the good times and less on the paperwork. Liz Rothschild, Lin Worthy and I shared our thoughts on the pre- and post- death issues we should all consider.
For instance, wouldn’t it be easier for all concerned if, before we died we shopped around and found a good undertaker? Why do we leave it to our loved ones, who often stumble through the first door that presents itself and go no further.
Kicking The Bucket is the brainchild of Liz Rothschild who runs the Westmill Woodland Burial Ground. She has a warm smile and a twinkle in her eye – just the kind of person to be running a Green burial ground and a festival that seeks out the best in both life and death.
The festival incorporates 42 events running over three weeks. A cornucopia of film, theatre, conversation, song, dance, debate, spooky stories and puppets, not forgetting both Soul and Sonic Midwifes.
We only have one chance to get death right. Kicking The Bucket makes a valuable contribution towards helping us achieve that.
The poetry of John Killick
John has spent many years working with people who have dementia. He listens to their stories and helps turn them into poems. Here are two examples
I don’t know what to do
I want to go home
I can sit here but
I don’t seem happy any more
I don’t know what to do
I want to but
I can’t any more
I want to lay
I don’t know when it’ll be
I want it so let me have it
Don’t make it so hard for me
Oh World, I don’t know what to do
I want to see my sunset
I want it as it was promised
I’m waiting for the hour
I want to see my sunset good
It’s your feelings, isn’t it?
it’s not catching
it would be like a river
with its whirlpools
and you’re pulled in
the thing pulls you down
down down down
so that you could drown
you can’t save yourself
not unless you’ve something around you
something attached to something
we’ve got to keep going