How We Got Here....
Hi, my name is Karen Martin and I want to share some of the story of my book, Memorable Loss.
Do you know someone living with dementia? Most of us will be able to answer yes to this; more people are being diagnosed each day and it is a disease which affects over 850,000 people.
This means that dementia is not only about the person living with the disease – its impact is far more wide-reaching. Memorable Loss is a story of friendship, and how an Alzheimer diagnosis challenged, changed and deepened my friendship with Kathleen.
Not much is written about friendship, about the depths of love we can feel for someone who isn’t related to us. Kathleen was a much-loved extension to our family and her journey with dementia became ours too.
I think this fact will resonate with many other people who love someone living with Alzheimer’s. Whether you are walking alongside a spouse, a parent or a friend, you try and walk together.
Memorable Loss is about our path. It is an honest account from Kathleen’s initial symptoms, diagnosis and then the decade-long progression of the disease. Its honesty means that I do not gloss over the hard bits, the helplessness I felt, and the confusion and reduction that Kathleen experienced. But it also shows humour, tenacity and friendship. At its heart is our love for one another and the gentle hand of faith that sustained us both.
This book is a testament to Kathleen. She showed faith and grace throughout her life, and no less so in dementia. It is a researched non-fiction narrative – a compelling story that embraces factual information and up-to-date science that can help you to better understand the neurological and psychological changes that accompany dementia. I came to such research very late in journey. I might have done better by Kathleen if I had known then what I know now. Understanding what your person living with dementia is experiencing will better equip you to respond.
With information we can all be more empowered. With faith, we can all ask to be empowered and encouraged. In Psalm 55 we are asked to cast our cares on the Lord, and he will sustain us.
Nobody’s dementia journey is the same, but I hope Memorable Loss will help you negotiate your path.
Here’s an extract to whet your appetite ahead of its release on July 11th:
Kathleen was moving house – from a bungalow where she had lived for more than twenty years to a wonderful care home a few miles up the road. This is an account of the packing process:
‘Good morning. All set for more packing?’ I asked.
‘Certainly. I’ve been busy already.’
This was hopeful. My worry meter oscillated to a positive swing once more as I wondered whether Kathleen had managed to make a connection between the suitcases, the boxes and her impending move. Perhaps the wrench of leaving her home could be managed well after all.
I followed her into the hall. A pile of vests on the floor by the airing cupboard were testimony to Kathleen’s busyness. Vests we had neatly packed the day before.
Steering Kathleen into what had been a firmly shut spare room, the now wide-open door revealed that every case and box we had filled in the previous days had been opened and the contents scattered.
‘I’m doing very well,’ Kathleen announced proudly.
‘You are indeed,’ a slightly hysterical laugh escaped my lips. ‘What is it you’re actually doing?’
‘I found all these boxes and cases this morning. I’m enjoying sorting them out and putting everything into its right place.’
‘That’s great,’ I said, keeping my voice bright and arranging my face to match her obvious pleasure.
My Alzheimer’s learning curve got a little steeper as I contemplated how to play this one. I had thought my system fool proof – everything had been precisely labelled so that I could reassure Kathleen that all the important things had been packed. Notes had been our way of making sense of the everyday for a long time, and until now they had pretty much worked. I had assumed we were creating a ready-reference guide to make the packing and removals process easier. But it was clear that she had forgotten all about Bluebell House. It was also clear that she had been at it since the early hours, testimony to a disturbed sleep pattern common in dementia. Finding this treasure trove in her spare room had given her hours of pleasure.
We managed the boxes, the re-packing and the eventual move with far more success than I ever imagined possible. Memorable Loss shows how love, faith, humour and honesty sustained us both. I hope it can help you too.