Initially, I found it very hard to accept that mum was living with dementia. I knew very little about the condition or what to expect, and frankly I found it terrifying.
For some it seems elusive but as Alice Ashwell has explained in this two part interview with Tom and Karen Brenner, Alzheimer's care and dementia care gives to each of us the opportunity to live a meaningful and purposeful life.
This is part two of an interview with Alice.
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By Tom and Karen Brenner
with Alice Ashwell
Alzheimer's Reading Room
4. How did your mother’s dementia affect your life and the life of others involved with your mother?
Initially, I found it very hard to accept that mum was living with dementia. I knew very little about the condition or what to expect, and frankly I found it terrifying.
At that stage I was in full flight as a ‘busy adult’ and reacted really impatiently to mum repeating herself and phoning me umpteen times a day to ask the same question.
I now understand far better what she was going through and that she couldn’t help what was happening. But then it just drove me nuts!
I dreaded visiting as I hated the way I reacted, and would come home feeling like a real heel. At that stage visiting mum felt like a duty ... and that in turn made me feel extremely ungracious.
A turning point for me was reading the book ‘Contented Dementia’ by Oliver James. I really started to appreciate what mum was going through, and that my attitudes and behaviours were not helping.
I finally started to lighten up, to enter her world, and to stop trying to ‘correct’ her. Menopause probably helped too!
Something shifted within me, and I was finally able to slow down and realise that, after a lifetime of striving and ‘doing’, I had a lot to learn about simply ‘being’. That was the beginning of an amazing adventure with mum.
Week after week, she led me on a journey ‘from head to heart’ – teaching me how to be present, opening my senses to simple pleasures, and introducing me to the gentle art of communing.
Mum’s increasing frailty and vulnerability were her gift to me. Sure, I could describe her dementia journey as a period during which I ‘put my life on hold’ in order to be close to her.
But life wasn’t ‘on hold’ – we were journeying together into some of the most profoundly beautiful territories of the life cycle.
Over time, as mum lost the ability to recognise people and to speak, her remaining friends visited less often. Many had passed away, others were infirm, and others no longer knew how to communicate with her. So it was a blessing that she was able to spend her last four years in a dementia care home with the most wonderful staff. And she gave as good as she got, as they say!
When she passed away in January this year, the carers told us that every morning when they woke her she would open her arms to them and say, “I love you so much!” Love was her essence – dementia did nothing to diminish who she was in her heart.
How to Get Answers To Your Questions About Alzheimer's and Dementia
And how about the rest of our family?
Mum was a powerful magnet who drew us together. Each year, my brothers would arrive from London and Kathmandu to spend time with her – and delightfully with my sister, her children and me.
Without mum we might have drifted apart, but she was not going to let that happen!
In January, when it became clear that mum was slipping away, we gathered around her one last time. Over the course of the next couple of days, each one of us received a final hug from those now-tiny arms. Despite having been unable to speak for some time, she uttered her final blessing two days before she died: “That’s lovely – well done!” Indeed, well done mum!
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5. What are some of the lessons you learned from your mother’s dementia that you would like to share with other caregivers?
Fundamentally, I learnt that mum’s journey was also my journey.
As long as I chose to resist what was happening to her, the journey for me would be rocky, uphill and unpleasant. But once I surrendered to the process and accepted that we would be exploring a new world together, I found there was so much to learn.
The old rules of time, space, relationship and truth no longer applied.
In their place were the gifts of learning to live in the present moment; seeing familiar people, places and things with new eyes; being able to shift identity (e.g. sometimes I was her daughter, other times she needed me to be her mother); and being released from the tyranny of accuracy!
Despite the memories and capabilities that fade away, the essence of the person remains. In mum’s case, some of the things that dementia wore away, like memories of hardship and pain, and the constraints of social expectations, allowed her to rediscover a sense of spontaneity and joy that we had not seen in her before.
And finally, dementia allowed mum to receive.
Having served others all her life, at last she was in a position to be served. Dementia allowed us the opportunity to honour and care for our mum in ways that we would not have been able to had she remained ‘independent’ for the rest of her life.
I’ve come to think of these lessons as mum’s ‘dementia blessings’.
Read part one - Can you tell us about your caregiving journey with your mother?
A special thanks to Alice Ashwell for sharing her insights and words. And, thanks to Tom and Karen Brenner for bringing this story to us.
Alice Ashwell lives in Cape Town, South Africa and cared for her mom who lived with dementia.
Tom and Karen Brenner are Montessori Gerontologists, researchers, consultants, trainers and writers dedicated to working for culture change in the field of aging. They are authors of You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. This book earned the Alzheimer's Reading Room seal of approval.
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