The author Rebecca de Saintonge talks to Stephen Tomkins

Rebecca de Saintonge had been married to Jack, a church minister, for six years before he gradually started to show worrying symptoms. At first he was diagnosed with Parkinson’s disease, but after seven years of deterioration he became one of the first people in the UK to be diagnosed as having dementia with Lewy bodies (DLB).

For ten years, Rebecca faced the ever-harder challenges of both maintaining their relationship and avoiding her own collapse under the demands of the disease. She survived by doing something that astonished her: she 
took a lover.

Her book One Yellow Door (Darton, Longman and Todd, 2015, £8.99) tells the powerful and moving story of her relationships with these two men, Jack and Nicholas, and how her faith was devastated and reborn.

When you think of Jack now what comes to mind?
It’s been nearly 20 years but the grief is there still. He was the most extraordinary personality. He was very funny; he could make you laugh by the way he put on his hat – a bit like Tommy Cooper. But we were only married six years before he became ill, and by the time he died ten years later I had forgotten what the real Jack was like. That is a tremendous grief for me. Writing the book brought back memories of when he was alive and well, and that has been quite sad.

Can you describe what the disease did to Jack?
DLB is a particularly cruel form of dementia. Jack remained gentle and he always knew who I was, but the brain slowly closes down, and the dementia comes and goes so the person will appear perfectly normal for a while, then two hours later be sitting in an almost catatonic state. Even when the dementia is well advanced, every now and again the person comes back.

Jack and I were so close I didn’t know where I ended and he began. We understood each other without words. That was the awful thing for me: because he always knew whether I was there, I couldn’t ever mourn, as I never knew when he was going to come back and be able to reconnect with me and sense that I was distressed and grieving, so I always had to hide it with a forced buoyancy. The passion in my life was that he should never know the cost to me; I believe that love should be a free gift, so I didn’t want him to know what I was suffering.

It must be so hard when you’re trying to learn to let go of someone you’ve lost and they keep coming back
You’re absolutely right. I cannot tell you the pain of it. Can you imagine? They’re still there, and you love them, and you somehow have to just let them go. I can’t describe it. It was devastating. It was devastating.

And we had always shared everything, there wasn’t a thought in my head I couldn’t share with him, and now I couldn’t share my distress, my anger, my pain, my frustration, my love. The marriage, in a sense, was now transformed into something completely different – something that’s even more committed, more loving, because the price of that marriage is no longer joy and companionship, but pain and distress….

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This is an extract from the March 2016 edition of Reform.

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