Spotlight on Dementia
Have you ever heard a conversation that stops you in your tracks?
I had that experience last weekend as I drove to share Holy Communion with a housebound couple from the church. I was listening on the journey to a podcast called ‘The Mid.Point’ with Gabby Logan.
She describes ‘midpointers’ as people between 38-53 and it’s often a time when people are taking stock of their lives and what’s important to them. Her guests are usually interesting and inspiring people who have maybe excelled at something and become quite well known, but often change direction as a sporting career finishes or other opportunities arise.
She introduced, at the end of the show, a man called, Charlie Starmer-Smith and I found myself transported in my imagination back to when I was 15 or 16 in a boarding school in the midlands of Ireland. At around 5pm on a Sunday, before we went over to tea, we would gather in the common room to watch Rugby Special. It featured highlights from games played over the weekend at the top level, including internationals, and we loved it.
The presenter and the voice of rugby at the time was a man called Nigel Starmer-Smith. He had played rugby for Harlequins and England and the Barbarians and he knew his stuff. His commentaries were knowledgeable, informative and had a way of teaching you things you didn’t know about the game. His infectious enthusiasm and excitement at thrilling passages of play were put together with words and descriptions that were enthralling to listen to as you marvelled at the skill and hard work of the top players.
Charlie is Nigel’s son and, as he told his story to Gabby Logan, it was hard to hear and yet it inspired me enormously. I had no idea that the Starmer-Smiths had been through so much tragedy and heartbreak as a family. Charlie’s sister died when she was just 16 from a rare blood condition. His brother died when he was just 19 from a type of lymphoma.
In 2016, Nigel was diagnosed with Dementia and, having commentated on the world rugby 7’s in the spring, he could not put a sentence together by the autumn. The speed with which this cruel disease progressed meant it took Nigel off his feet and into a nursing home with specialist care.
More tragedy visited the family when Nigel’s wife, Ros, was diagnosed with advanced bowel cancer last February. She stayed with Charlie and his family while receiving chemotherapy but, sadly, the disease progressed and she died earlier this year.
During lockdown, Charlie had turned to music as a way of processing all he was dealing with. He was interested in writing songs and, with his mum’s encouragement, he decided to write a song about his Dad. She encouraged him to send it off to a competition running on BBC radio 5 live for songs recorded during lockdown.
Charlie was reluctant, but she persuaded him and BBC Radio played the song and he went on a breakfast show to speak about his Dad and the impact this disease has had upon their family. A leading producer heard it and invited Charlie to record an album in Abbey Road Studios and all the proceeds from this single are going to Alzheimer’s UK.
I was struck by the dignity of Charlie in this interview and, when I downloaded the song and listened to it, it touched something very deep within. It’s raw, it’s powerful, it’s full of emotion and captures the heartbreak this disease brings to so many families. It’s estimated that 850,000 people in the UK are suffering with dementia and, if you think of all the families that are affected, that’s a huge amount of people carrying this heartbreaking burden.
I loved the way Charlie went outside his comfort zone to send his song in. I loved the way it honours his father and all the beautiful times they shared together. It’s also very honest in documenting how this disease seems to rob people of so much.
Over the course of 25 years in the ordained ministry I have encountered many special people who have suffered with Dementia. I have seen it in my own family.
One of the thing which continually humbles and inspires me is the tenderness and love with which carers support their loved ones. I have seen people making those daily visits to nursing homes, brushing people’s hair, playing their favourite music, reading them things which mattered enormously to them when their brain was fully functioning. I’ve watched people show old photographs, watch old movies together, patiently offer drinks and pureed food to loved ones who are struggling.
I’ve seen people’s personality change, too. It’s hard and sometimes frightening to see the rage and frustration and bewilderment and paranoia that can well up and overflow unexpectedly.
Everyone is doing their best to make those connections, to rekindle the spark that made someone who they were. There are occasional glimmers and flickers, but then there are also lots of instances of exhaustion and frustration and overwhelm. Carers are stretched beyond their human capacity and then eaten up by guilt and recrimination when their patience snaps.
It might be hard to see where faith comes into all of this. I think of a God who watched his own son suffer and die and in the loneliness and isolation of that experience He never left Him. I think of the words of Melanie Grimsley, who shared with us recently, who spoke of her belief that, in the worst of her suffering after the car fire that devastated her life, He was with her in that suffering. I have no idea whether Charlie has a position on faith, but he has kindly agreed to come and talk to me on the podcast, hopefully in the new year.
At this point, I just wanted to share his story with you, to salute what he has done and encourage you to download his magnificent single, ‘Spotlight’, with all proceeds going to the Alzheimer’s Society.
The link is here.
It strikes me as a modern day psalm – full of realism, honesty and anger and a genuine searching for meaning in the midst of much anguish and suffering.
We’d love you to pray for him and his Dad, Nigel, and all his family as they navigate this very difficult disease.
We look forward to our final guest this Thursday in the series in which people have been sharing why faith is important to them. This week we welcome Dorothy Callan, who speaks of her experience of blindness and all the difficulties she has encountered. She is an extraordinary lady and, if you can’t join us at 7.30 pm in church, the service will be live streamed on the St. Finnian’s YouTube channel and available as a recording later to watch.
Much love to everyone,