Out of the abyss of despair
Out of the abyss of despair . . . I reflected on that title and wondered if it were overly-dramatic. But after my husband’s diagnosis with Lewy body dementia in 2013, I spent two years spiralling deeper and deeper into despair and resentment and negativity.
In 2012, we were living and working in the Pilbara on the doorstep of the magnificent Karijini National Park. Weekends and vacations were spent exploring Karijini’s breathtaking gorges and other treasures of the Pilbara and the Kimberley. Life was a great adventure for us both.
But as I became concerned about my husband’s well-being, it became clear that we needed to be closer to medical services. Reluctantly, I resigned from a job I loved.
It took me three years to adjust to not going to work. I missed the social contact. I missed the intellectual stimulation. I missed making a contribution and I missed feeling relevant.
At the time of diagnosis, I knew nothing about dementia and I had never heard of Lewy body dementia. I asked the neurologist what we could do. My question implied, what can we do to delay the progress of the disease and what can we do to maintain quality of life. But my words were, ‘What can we do? ‘ The neurologist replied, ‘Nothing!’
Fred & Penny on the River Cam, 2007
Farm visit at the care facility. 2018.
Discovering a new talent, 2016.
Not satisfied with this, I embarked on an internet search, which took me to the University of Tasmania’s, Understanding Dementia MOOC, which I enrolled in and I subsequently enrolled in their Bachelor of Dementia Care. My aim was to know something of the mystery of this dreaded disease; to know what its trajectory might be, so that I would be better able to support Fred.
I cannot emphasise strongly enough, the need to become informed. Confronting as it is, there is no substitute for knowledge.
I felt isolated; a hostage to Fred’s illness and I grieved for the myriad of losses in our lives. I had given up work, moved across the country to live in Victoria, left friends and social connections in WA.
Every aspect of my life had changed. I grieved for the loss of companionship and the loss of unfulfilled plans and hopes and dreams.
Travel was one of our retirement plans. Further adventures exploring the wonders of Australia’s outback. I still experience a pang of irrational resentment whenever I see a caravan on the road.
I have kept a journal throughout this journey and in October 2014, I wrote: There is no future; no light at the end of the tunnel; no hope. I don’t like the negative person I am becoming.
But, in 2015, I had the opportunity to become a member of the reference group for a pilot dementia friendly community project in Beechworth. This turned my life around – I was validated, no longer invisible. I made new social connections, forged new friendships. From the dementia friendly community project, I became co-convenor of a carers support group. I was given a voice, as an advocate for people living with dementia and their carers.
Early last year, on the basis of my lived experience, study and community involvement, I was offered a casual position as an educator/facilitator for Dementia Australia – further expanding my professional and social networks.
If it were within my power to change Fred’s situation I would but, for me, dementia has unexpectedly evolved into a social experience – and this has strengthened my capacity to care for Fred.
I have found humility and solace in the incredible generosity of spirit of others navigating a journey similar to mine.
I have learned that you don’t know how strong you are until being strong is the only choice you have.
Enjoying a drumming session with granddaughter, Josie and friend Wanasai.
In 2016, Fred was admitted to care. For the first 16 months, he came home every day and now that that is no longer possible, I visit for several hours each day. I am an integral part of the Glenview community, becoming an active volunteer, a member of the fund raising auxiliary and a member of the board. I know all the staff, all the residents and those families who visit regularly.
Gradually, I began to rediscover the old me; the positive, optimistic me. I learned to accept where we are right now. To treasure the time I still have to make a difference in Fred’s life by just being there for him and I am convinced that if I didn’t spend that time with him, his cognitive decline would have been much more pronounced.
I have found unimagined reserves of patience, tolerance and humanity. To quote Rachel Marie Martin from her book, The Brave Art of Motherhood:
Sometimes you have to let go of the picture of what
you thought life would be like and learn to find joy
in the story you are actually living.