We need hope as much as we need air and food. The Scriptures are full of references to being hopeful, to sustaining hope. Romans 12:12 says, “Rejoice in hope, be patient in tribulation, be constant in prayer.”
I see it with my friends Ruth (89) and Paul (91), now four years into Paul’s journey with dementia. Paul was a pastor and evangelist, and was spiritual father to many students in his large church in Hull. They’ve been married for 63 years, and as they near the end of their pilgrimage this hope is holding their souls firm and secure.
Which is why the Alzheimer’s Society’s new film, ‘The Long Goodbye’ makes me so angry. It is the WORST video I have ever seen about dementia. It emphasises death and is so totally without hope or direction you have to ask why was it made? What’s its purpose?
It begins in a gloomy room with the son’s funeral eulogy for his mother, who died of dementia. He lists the moments that marked the progress of the disease, calling them the times his mother died. When she no longer knew how to cook; when she didn’t recognise him or his father, and a few other instances. It harks back to the dark days when people believed the person with dementia died bit by bit, until only an automated shell was left, and they were treated abominably.
The film ends with the narrator repeating that when you have dementia, you die again and again and again and again…
But the evidence is that the person remains. Get a copy of the little book written by Professor Graham Stokes, formerly head of medical care for BUPA, with case studies of people sometimes in the deepest dementia ‘coming to’ momentarily and behaving as themselves. ‘And still the Music Plays,’ is available from Amazon.
Also, the dementia trailblazer, Professor Tom Kitwood (Lois Alzheimer’s Chair at Bradford University) mentions the phenomenon in his seminal work, ‘Dementia Reconsidered’. Also available from Amazon.
One of the most moving examples was told to me by a missionary, Joanna, who had been visiting her father-in-law, a former pastor and preacher, who was dying with dementia. He was slumped in his chair with his eyes shut and not responding. She sat next to him and read some Scriptures, and prayed. Then she sang quietly, ‘Jesus loves me this I know …’ And when she finished heard him say, ‘again.’ So, she sang it again, and when she finished the same thing happened as he said ‘again.’ Except this time he joined in. His regular carer came through the door at this point and Joanna told me her chin almost dropped to the floor in amazement.
And in the last few weeks a colleague told me about his uncle, in the final stage of dementia. He was the only unbeliever in his family. Then one afternoon, with the family around, he regained lucidity and came through the fog, fully present. There was a little discussion and he accepted Christ as his Saviour, and prayed a little prayer before the fog came down. He has since gone to be with the Lord.
There are many more accounts like this, that show that the person remains. They may lose capacity as the disease progresses, and they may appear to be different because their brains are not working properly, but they do not die bit by bit.
Hope is essential in dementia, as it is in life. Walking across the garage forecourt after church my eyes were drawn to the 2 inch typeface headline in the newspaper rack – ‘New Wonder Jab Will Prevent Dementia’ it said. Inside the paper it continued, ‘New Hope in Fight Against Alzheimer’s.’ I read the article and saw that it was aimed at encouraging people to take part in clinical trials, but like so much in this particular approach, I thought held little promise. But at least it is holding out hope!
So, don’t watch ‘The Long goodbye’. It’s inaccurate, creates fear and is completely without hope. It is ungodly.
Instead, as Romans 12:12 says, ‘Rejoice in hope, be patient in tribulation, be constant in prayer.’ Our hope is not based on the outcome of a clinical trial, but on solid, proven evidence! As a Vicar once said to me at a crucial moment, ‘Lou, they never found His body!’
For, echoing many of the messages pinged to my phone by friends and family this morning – HE IS RISEN!
thank you, I am a caregiver to my veteran husband who has Parkinson’s dementia, we are both Christians and have found it difficult to relate to anyone what we are going thru. My husband still prays beautiful prayers, but other than that has a hard time making any sense at all and does not read anymore. I am his source of reading and we have speakers we enjoy however his attention span gets less and less. Loved the story about Jesus loves me, will do that not only with my husband but my brother who is in a nursing home with same diagnosis. Will be searching out more of your articles.
Hi Jaclyn,
Have a look at my books on our website. http://www.pilgrimsfriend.org.uk. Or on Amazon. Our website says more about them. You may find ‘Dementia: Pathways to Hope’ helpful.
Also, tomorow, my Zoom at 2:3 on Spiritual Support for People Living with Dementia. Register here: https://www.pilgrimsfriend.org.uk/events/the-effects-of-spiritual-support-in-dementia-care
Louise