A smile hides the grief as gran Ray watches husband slip away

Dementia’s cruel hand on James, 56

Her husband James, who is only 56, is losing his six-year battle against dementia.

For seven weeks, doting dad and granda James has been lying in a bed in St Andrew’s Hospice, where nurses talk to him, sing to him and shower him with kisses. They also administer his end-of-life care.

James, says his wife of 31 years, was never ill in his life. A workaholic electrician who built their stunning home in Bon Accord Crescent, Shotts, with his own hands, James is a doting family man who adored life with Ray and daughters Charlene and Dana.

The couple had recently returned from a surprise holiday in Spain with 24 friends to celebrate James’s 50th birthday when he began to lack co-ordination, his confidence dipped and he seemed nervous, edgy.

He had recently lost his brother and mother and Ray was recovering from pneumonia. She thought it had all been too much and suspected James was having a breakdown. He was referred to a psychologist.

“That went on for two years. I could see the decline. He started to twitch. I went to the psychologist and said: ‘ You are wrong. There is something going on,’” said Ray, 54.

James was subsequently referred to a neuropsychologist and, three months later, was diagnosed with an unlabelled form of dementia.

He had ‘alien hand syndrome’ – his right hand acted seemingly on its own, would not do what his brain instructed and simple tasks like operating a mobile phone or buttoning his shirt were beyond him.

Then came the diagnosis of corticobasal degeneration (CBD) – a rare brain condition that currently affects only 100 people in the UK. It is caused by increasing numbers of brain cells becoming damaged or dying over time and the only research into the condition is done during post-mortem.

“By that point, he was not being treated for anything. He became psychotic. His personality changed. There was anger, violence, frustration and suicidal thoughts,” said Ray, whose husband was being cared for by the early on-set team.

“He actually got sectioned in November 2016 and was in Wishaw General for eight months. I had to fight to get him home and I cared for him here since June. He was sent home without them noticing that he could not eat or drink. I had a time of it trying to get them to recognise how ill he was. He deteriorated so much cognitively and in terms of balance, but he was mentally stable. He lost his ability to walk. I was in such turmoil trying to get James a care package to stay at home. It’s so difficult with under-65s.”

That is when Ray - whose husband received care at home from Macmillan nurses - became acquainted with Shotts and Wishaw Friends Together (SWFT), which offers the adult community a variety of activities to help tackle feelings of loneliness and isolation.

The project rescued her. The team there were, and still are, her salvation.

Ray, who has been on leave from her job with a pharmaceutical company for seven months, said: “If not for SWFT, I have no idea where I would be. They continue to support me. They keep me right in dealing with third party services. They attend meetings with me. Our daughter, Dana, got married in September. She and husband David brought the wedding forward so James could be there. We could not get transport arranged because there was no ramp outside. Getting Better Together put on a disabled mini bus and driver to get James to the wedding and back home. They decorated the bus and the whole wedding party travelled in it so we could all be together.

“James is in and out of consciousness now. He is taking absence seizures. His eyes will be open, but he drifts in and out of things. He can barely speak, but when he is talking I can pick up words. Even if the hospice tell me he has not been having a good day, he perks right up as soon as he hears my voice. Because I cared for him at home, this is a transition period now. His heart is still beating and he is still there, but I am grieving.”

There is back-up for Ray from a variety of agencies. But when it comes down to the real support, she says, it comes from SWFT and Getting Better Together.

“What they have done is phenomenal. To come up and sort out the wedding and make it possible for James to be there is something I could never repay them for,” says Ray, who has three grandchildren - Mia, Jack and Harry.

Ray admits she is a different person to the one who embarked on this turbulent journey six years ago with the man she loves - the man she met as a 19-yearold at a disco, the man who secretly arranged their whirlwind wedding in Gretna in 1987, the man renowned among his large circle of friends for