The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid. Do not be discouraged (Deuteronomy 31:8).
I am with you always, to the very end of the age (Matthew 28:20).
Though I walk through the valley of the shadow of [dementia] I will not fear, for Thou art with me – Thy rod and Thy staff they comfort me (Psalm 23).
What a privilege it was to present “Discussing Dementia 2: On Caring” at St. Peter’s Anglican Church in Tamworth last weekend. Nearly 160 people journeyed with me as we explored what it means to be a carer.
Since posting “Discussing Dementia 2: On Caring” on 30th April, I am able to provide some additional resources. Once again I have linked these to the Summary by using the section numbers e.g. Section G is “Where is God in dementia?” Sub-section G.11 is “A Carer’s story #2”.
On Friday night two people spoke about their journey:
C.5 – A Carer’s Story: Karen Gurney.
Karen’s father Bob was diagnosed a year ago with Alzheimer’s disease.
G.11 – Where is God in dementia? Rev. Rod Chiswell.
Rev. Rod spoke about his mother’s faith in her journey with dementia. Betty Chiswell was wife to Bishop Peter Chiswell. They faithfully served God in the Armidale diocese.
On Saturday morning we heard from these carers:
C.5 – A Carer’s Story: Geoff Bennett.
Geoff’s wife Helen died in October last year from Lewy Body dementia. Geoff spoke by me by phone and I transcribed our interview. This includes a very moving poem addressed to Geoff’s wife.
G.11 – Where is God in dementia? Karen Gurney
Karen shared about where she has seen God at work in her journey with her father’s Alzheimer’s disease.
I have also managed to find some clips to watch or listen to about people who are well worth exploring: Christine Bryden (who is living with dementia) and Rev. John Swinton (theologian and dementia expert). Here are these links:
Christine Bryden – “All in the mind” radio program:
I recently came across a wonderful definition of dementia by Dr. Allen Power. I included this in the “Discussing Dementia 1: An Overview – Recap” (section B.2 – “What is dementia?”). Traditionally the definitions of dementia are medically (clinically) based e.g. “Dementia is a form of brain damage”. While that’s true, it’s certainly not the whole story. Allen writes:
“I began to define dementia simply as ‘a shift in the way a person experiences the world around her/him’. Once I did that, a whole new world of insights opened up for me” (p.18).
He also touches on the almost entirely negative presentation of dementia in our community and media e.g. “The dementia epidemic”; “The dementia tsunami”. He writes:
“The Alzheimer’s WA volunteer project which connects newly diagnosed individuals with volunteer opportunities in their community is one I always point to as a powerful antidote to the ‘tragedy narrative’ around dementia” (p.19).
Here’s the article in full:
God’s call on my life is to “be a bearer of hope and joy”. If I can help to reframe that existing “tragedy narrative” – the story of “tragedy” – into a “God is always with us narrative”, then I am fulfilling God’s call on my life. I am also helping His kingdom to come in the lives of those living with dementia, and all who are called to care.
Let me end as I began with the words of the Psalmist: “Though I walk through the valley of the shadow of [dementia] I will not fear, for Thou art with me – Thy rod and Thy staff they comfort me”.
What is our hope and joy in dementia? That God is with us! That He will never leave us nor forsake us. That even in the darkest times God provides for us. That is the Good News.