Developing Strategies: Discovering What Works
Deb Bunt, Author, Living Well with Dementia
5th February 2024
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“You don’t get diagnosed on a Monday at half past ten,” Peter says, “and become a dribbling wreck on Tuesday at nine a.m. No, you’ve had several months – maybe years – to develop coping strategies. Nothing should change at the moment of the official diagnosis. But everything did for us as a family. I walked into that doctor’s surgery six feet tall, I got my diagnosis, and I walked out five feet tall. And yet nothing had changed other than someone had told me something. It would have been better if the GP had said, ‘Yes, you have this condition, but you still can cycle, garden, walk, talk. Get the practical things done (Power of Attorney, Advance Care Planning) and then just carry on living your life.’ Had I been told that, well, then I would have missed the twelve months of depression that followed. You know, the GP planted a depression seed which quickly grew into a depression tree. It cast a shadow over my life. Every time I moved, it seemed that more branches grew. To survive, I had to find an axe and remove some of those branches. I had to find a way to let the light in.”
Over the five years that I’ve known Peter, I’ve seen how the shadow of depression is never that far away, sitting just beyond his shoulder, waiting for its moment. He has to move fast to keep ahead, and his determination to remain upbeat is nothing short of miraculous. I’ve also seen changes in his condition, yet, as his short-term memory deteriorates, Peter continues to find solutions to new obstacles that this presents.
“We have to adapt to work with the changes in me,” he says. “We mustn’t stop doing, but we must change how we do things.”
Some things are simple to tweak, and modern technology has its part to play in facilitating this. Peter has added reminders on his phone of tasks that have to be done routinely: take medication, feed the fish, make tea for the wife, put the rubbish out.
We’ve made Peter laminated cards, each with different local destinations printed on them. He attaches the cards to his bike so he knows where he is going and whom he is meeting. This way he retains his independence.
When we’re driving to events, I give him a piece of paper with a couple of bullet points, explaining our location and our audience. He is saved the potential embarrassment of constantly asking where we’re going and what we are doing.
Inevitably, there are some strategies Peter refuses to adopt: he feels it is degrading and patronizing – perhaps infantilizing – to have stickers on cupboard doors with pictures of cups, plates, pots, or pans. Instead, he has opted for see-through cupboard doors. Peter will try to find a more pertinent solution to suit his personality and to maintain his pride. His bathroom cabinet is organized so that he starts from the top and works his way down.
“That way,” he says, with the merest of winks, “I don’t brush my teeth with shaving foam…”
From the pre-diagnosis days of using post-it notes as reminders, to the techniques we now use, Peter constantly finds ways of circumventing the obstacles.
When Peter and I first started to do our presentations, I would stand by his side while he talked. He would call me (amongst other less printable epithets) his ‘plug-in and save’ device, but in truth, I was more of a safety net, a reassurance, offering little more than that. He would cover everything from diagnosis, to the depression right through to his determination to make a difference and find a sense of purpose in his life. On the whole, his talk flowed. Only occasionally would I have to interject, prompting him about the more recent events, or providing details about our books (neither of which he has ever read), or even reminding him about his first cycling challenge across the country and the place in Wales from whence he cycled (Aberystwyth) – an oversight which is entirely understandable given the inexplicable paucity of vowels in the word.
However, over the last year, as Peter’s memory has changed, he finds it harder to make reference to the more recent events.
“Long-term memories are like raging torrents,” he says, “but short-term memories are just a trickling stream.”
Rather than searching for that elusive trickling stream – and probably failing to find it and then run the risk of retreating from all activities – Peter has entrusted me to find its source. To this end, we have devised a question-and-answer session when we deliver our talks. This way, I can lead him to the trickling stream and guide him over it.
Inevitably, this involves me in much more active talking. We have become a bit of a double act (someone once called us the Two Ronnies of the dementia world which I have chosen to take as a compliment).
Peter says that it’s up to other people to enter the world of those living with memory impairment. Thus, it’s incumbent on me to accept he doesn’t remember our short-term plans or our more recent activities. This acceptance on my part is an essential precursor to entering his world.
I try to imagine what it’s like to enter Peter’s world, to be invited to a party yet to be the guest who knows no one. You can see faces, but none is familiar; you can hear the words, all of which make sense in their individual form, but none of which is applicable to your understanding of the narrative. Rather than avoid going to the party, I would like someone to work out how to make me feel welcomed and comfortable. If someone were to say, “Ah Deb, this is George, he was telling me about his job in Saxmundham at Waitrose. But he fell off his bike last week so he’s had to take time off,” that would enable me, at the very least, to join in the conversation even if I really didn’t know George. I know enough about Waitrose/Saxmundham (and I certainly know a thing or two about falling off a bike) to make my own anodyne contribution to the conversation. This way, I would not be left standing on my own and feeling isolated.
Isolation is a dreadful enemy to Peter. It feasts voraciously on others’ inability to put themselves into his world. Peter’s isolation army marches relentlessly ahead of him, uprooting the familiar and burning the landscape until he is left, a solitary figure, in a barren wasteland. It’s up to us to provide the ammunition to combat this enemy incursion; it’s up to us to keep him company, to walk with him, and to allow the plants and trees an opportunity to grow and flourish again.
As I attend more events with Peter, I have noticed a curious by-product: my own confidence levels have changed. A self-proclaimed creature of considerable timidity and low self-esteem, working with Peter has infused in me an unexpected confidence.
Yes, of course, dementia absolutely and ruthlessly strips a person of many things, but Peter’s dementia is also adding layers of confidence and purpose for me. With the recognition of his diminishing memories comes his determination to create something positive. Peter will not relinquish his memories without a fight; he refuses to let them disappear permanently. Instead, he is passing them over to me so, as ever in our poignantly symbiotic relationship, I can be the beneficiary and the holder of these precious things.
As we form and reform our strategies to suit Peter’s changing needs, he and I will continue to stand side by side on the stage, not so much like The Two Ronnies but more, I hope, as two close friends doing their best to ensure that the branches of the dementia depression tree are continually cropped and the light is allowed to shine through.
Written by Deb Bunt, Author, Living Well with Dementia.