There’s a Dog in the Garden
When Alison Shaw’s beloved Mum was insistent that she could see a dog in the garden, it was clear something was very wrong. Alison shares with Jules Badger about the heartbreak and the hope of caring for a loved one suffering with Lewy Body Dementia (LBD), the testing of her own faith, and why she wrote a book about it.
Alison Shaw felt compelled to write There’s a Dog in the Garden when the manager of one of the dementia care facilities where her mother lived suggested to her that ‘a book would be of huge help to so many—there are lots of clinical books about the disease but very few personal accounts’. That phrase stuck with Alison.
‘I wrote the book to be a comfort to others, to be educational, and to provide some idea of how this disease presents at different stages. The unique part of our family’s story is that because Mum and Dad were living with us when it began, we could track the progression of the disease. It was tough—and the book is honest and raw.’
Since its publication in 2019, Alison’s book has been picked up as a training tool for dementia care facility staff, but it’s the feedback from the loved ones of those suffering with LBD that continues to move Alison deeply.
‘Most people are immensely relieved just knowing that someone else understands. Someone ‘gets’ what they’re going through. Often only very close family members see the day-to-day struggle and agony. Readers say the book helped them feel less alone on the journey.’
LBD explained
So, what is LBD? There are over 200 subtypes of dementia, and LBD is one of the top five (Alzheimer’s disease is the most common). Abnormal protein deposits in the brain called ‘Lewy bodies’ (discovered by Frederick Lewy) disrupt the brain’s function. Characterised by frightening hallucinations and confusing delusions, LBD is a unique neuro-degenerative disease. Changes in personality and temperament mean sufferers can become aggressive and lose their social filter, resulting in inappropriate comments and behaviour.
‘Accepting that Mum was different was so hard,’ explains Alison. ‘People would say to me, “oh that’s not really your Mum.” But, actually, this is my Mum. I’m looking at her face and hearing her voice. Mum has a brain disease that’s changed her personality and who she is, but she’s still my mum, still someone I love.’
Alison adds, ‘That’s what was so upsetting and all consuming. I was so worried that I would forget who she was. Of her 80+ years LBD was just 7 years in my mum’s beautiful life. LBD didn’t define who she was. It was important to hold on to that perspective during those awful years, because at times it was pretty brutal.’
Ambiguous grief and loss
There is no cure for LBD, making care the primary task. When this becomes long term, families are confronted with ‘ambiguous loss’—loss without a clear resolution or sense of closure. Although dementia sufferers are physically present, psychologically they become increasingly absent. This leaves loved ones in a state of unresolved grief. For Alison and her family this reality was confronting.
‘Everything in you wants to fix it, but you can’t. Learning to live with ‘this is just how it is’ while dealing with ambiguous loss was overwhelming at times. You’re also so often living in a state of shock because of unpredictable behaviour. There was no easy way out, no answers and no miracle medication. Those complex feelings were a real assault to my faith,’ explains Alison.
From why to where
The final chapter of the book is titled ‘Questions of Faith’. Alison holds nothing back in her honesty about her struggles but also the hope she found in God’s Word, testifying to a pivotal moment of grace in her own faith journey.
‘There came a time when I had to move from asking why, “Why has this happened, God?” To asking where, “Where are you in this God?” We all want to know why, but the more I did that the more I inadvertently pushed God away. But my need for God and for the comfort of his presence became far greater than my need for an answer. Strength has always come from my faith in God—why would this be any different? Pressing into God and his Word built up my resilience. It wasn’t a case of Alison, you can do this, because honestly, I couldn’t. It was too hard for me, so God enlarged my capacity to love and endure. And that’s the difference for us as Christians! I needed help and God didn’t disappoint.’
There was a time when Alison was very distressed that her mum had lost her own connection with God. Major Janee Sawyer gave Alison a verse which brought her great comfort—especially when she added dementia to the Apostle Paul’s list!
‘For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth or anything else in all creation—[including dementia] will be able to separate us from the love of God that is in Christ Jesus our Lord’ (Romans 8:38–39).
See review on page XX for details on how to purchase this book.
Pull quotes:
‘I wrote the book to be a comfort to others, to be educational, and to provide some idea of how this disease presents at different stages.’
‘Of her 80+ years LBD was just 7 years in my mum’s beautiful life.’
‘…God enlarged my capacity to love and endure.’
