a care-giving journey – part 2

Here is the second of three extracts from an interview by Tom and Karen Brenner, which was published in two parts on Bob de Marco’s Alzheimer’s Reading Room blog: http://www.alzheimersreadingroom.com/

How did your mother’s dementia affect your life and the life of others involved with your mother?

Mum was a powerful magnet who drew us together as a family

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.

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!

The family painted mum’s coffin with things that were significant to her … music, her final blessing, and more.