I am 67, and I was diagnosed with dementia eight years ago. I believe I am living well with dementia.
God has blessed me in ways that I could never have dreamt of eight years ago. Opportunities have been opened up for me (and my husband, Timothy) to be involved on the public stage as an advocate for people living with dementia, and for dementia research, and I have had amazing experiences. This is my story.
I completed my general nurse and midwifery training in Melbourne, and later I gained a tertiary degree in Nursing Administration. I worked as a general nurse, and as a nursing advisor in the Health Commission of Victoria.
I was in my 30s when I married Timothy and moved to Adelaide. It wasn’t long before there were four little boys in the family, and I became a stay-at-home parent. Timothy and I have been active members of Bethlehem Lutheran Church, Adelaide, ever since we moved to Adelaide after our marriage. We have a wonderful church home group of loving, supporting friends.
In 2006 I re-entered the paid workforce, working in the aged care sector coordinating and facilitating services and programs for people with disabilities, for the elderly and for people living with dementia.
In 2011 I started experiencing memory problems of my own, and in 2012 I was given a ‘probable’ diagnosis of Alzheimer’s, which now seems to be Lewy Body Dementia.
I have always been open and honest about my diagnosis – I feel very little stigma attached to the dementia diagnosis. I have very good doctors and specialists, and I was diagnosed early. I so wish that this was the case for everyone living with dementia.
Some of my problems at work included:
- I started to keep numerous notebooks simultaneously
- I started to forget the names of work colleagues
- I had been good with numbers. Now I had difficulties with rosters, budgeting, financial reporting and report writing
- I became stressed about work.
At home I was finding simple things a bit harder:
- I wrote lots of lists
- I had to concentrate harder on simple tasks
- Following plots in books or on television became difficult, as did following embroidery instructions and knitting patterns. I’d get muddled, lose my place or forget what I’d just been doing.
Obviously, this is not what Timothy and I had anticipated for our later years. I resigned from my work, we had to change homes, and Timothy become my carer. But we committed ourselves to God’s loving care and continued to give thanks for our blessings.
These days things just take longer to do. Cooking can be challenging – my family and I have a good laugh when things go wrong.
While my cognitive changes are not so obvious, I am now more troubled by other aspects of Lewy Body Dementia. My balance and spatial awareness are not the best, and I’ve had the occasional fall. I have bad nights where I act out my dreams (I hit Tim quite frequently in my sleep!). My organisational skills and decision-making have also been affected.
More recently my initial symptoms seem to have settled, and, in some ways, improved. I have started to read, embroider and knit again – things I never thought I’d enjoy again. I’m putting this improvement down to adjustments that I have made in my life. These include:
- change to a more Mediterranean diet
- doing lots of crosswords, puzzles, sudokus, and mind games
- involvement, when possible, in balance classes and specific exercises, under the supervision of a neuro-physiotherapist
- and voluntary work of various types.
Some days are still a struggle. It is reassuring to have Timothy’s love and support, and that of our sons and family members.
As I said, I could never have dreamt how God would direct my life. For many years now I have been involved in speaking publicly as a consumer representative about my personal story and dementia in general. I have been invited to attend and to speak at many different events, including at Parliament House in Adelaide and Canberra.
I am a member of several national dementia committees, and through these various commitments I have met amazing people who have been involved in dementia advocacy and research.
As well as my dementia work, I am also a volunteer at Wantok Place – the LCA International Mission museum of PNG artefacts in North Adelaide that Timothy set up and now manages. We live a simpler life, but still manage some travel within Australia, including trips with good friends, and happy family gatherings.
I am well aware that other people’s experience of dementia will be quite different from mine. I do know that God has directed my experience of dementia in ways that have been a blessing to me, and hopefully to others. The trials and the heartaches are still there, but God lifts me up daily, and although I do not know what the future holds, my heavenly Father is already there, and he will surround Timothy and me with his love and will lift me up finally into his loving arms. “In everything we give thanks.”
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