‘I live for seeing him, but I know there’s no going back... no hope’

Cindy is reading aloud to her husband Chris. The novel she’s sharing with him is The Book Thief by Markus Zusak.

As Cindy’s rich, lovely voice recounts the tale of Liesel, a nine-year-old German girl and what befalls her family and neighbours as the Second World War breaks out, Chris mostly sleeps.

Sometimes he’ll wake, occasionally making little noises. But nowadays he snoozes a lot – even missing the cake, candles and singing of Happy Birthday when he reached 68 the other day. Had he been awake, says Cindy, he wouldn’t have registered what was happening.

As Cindy reads, Chris’s special mattress hisses occasionally as the pressure changes to avoid bedsores. He has been cared for in this North Yorkshire nursing home for the last decade and bedridden for five years. Cindy visits for up to eight hours, six days a week.

Nearly 15 years on from the day he was diagnosed with early onset dementia, Cindy says his illness is in its final stages. A devoted couple who met on a bus from Ripon to Harrogate when she was nearly 16, Cindy says she still loves John as much as she ever has. “He’s still my handsome boy. He doesn’t look his age, does he?” she says proudly.

Cindy has consented to part of the story of Chris’s illness being used in a play by Leeds writer and producer Brian Daniels. She says “Like me, you don’t know about dementia until you have to know. Maybe we should understand a bit more before it happens to us.”

As she speaks, Cindy strokes Chris’s hand and hair. He sleeps with a half smile on his face. They’ve been together 51 years and married for 45.

Chris graduated from working as a car mechanic to building up his own successful garage business with a sales and rental arm. They had two children, and apart from the occasional holiday, Chris worked hard every day for his family. When Cindy prised him away they travelled widely, developing a particular love for the Greek Islands. She shows photos of her younger, nut-brown husband twinkling into the camera lens.

“Looking back, he always had a bad memory. You get used to it, and I would say: ‘Well, I’ve got a good memory for both of us.’ But once, for instance, we were frightened to death by an earthquake that woke us in the night while on holiday in Cephalonia. The next morning Chris didn’t remember it.

“In his late 40s he started to get up, shower and go to work in the middle of the night. Then he’d go to a local social club for a Friday night drink and have to come home again because he couldn’t remember the password for the door. He began to get cross with me for no reason, and swear as he’d never done before. If he had a few drinks at a party he’d tell the same story 15 or 20 times. That’s part of the dementia, I know now.”

At this point Chris was losing his grip on the business, too. It took a long time to persuade him to see the doctor, and they were shocked when Chris could answer only two of a battery of 30 questions designed to test his memory. A consultant confirmed the diagnosis, and told the couple to sell the business, take a good holiday and enjoy the next couple of years. He predicted that Chris had about 10 years.

Chris spent two years at home with Cindy, his mood swings becoming increasingly alarming. She had to tie him to her in bed to stop him wandering, banging doors, and attempting to leave the house.

“Chris used to say to me ‘I’ll never leave you’, and even though things got very tough, I never wanted to leave him. I have always told him we’re in this together. I live for seeing him, but I know there’s no going back... no hope.”

Once the illness got to the point where Cindy was beyond coping, Chris spent a spell in a mental health unit before he was found a place in a nursing home.

Chris can’t do anything for himself now, and the lashing out and swearing have long since subsided. Cindy devotes herself to helping with his care, and continues to love him by being there as many hours as she can – although her own health isn’t great, as she has a chronic form of the lung condition sarcoidosis.

“Chris used to do everything for me, and was a wonderful husband and father. He did all the paperwork and now I do the bills and I look after him. Thank goodness I have had great help from wonderful people at the Carers’ Resource Centre in Harrogate. People say: ‘Oh, you’re very brave’, and it’s nice that they think that, but I don’t feel it. They don’t see the tears I cry at home.” She knows that soon she must face the future without Chris.

“I don’t really think about that day too much though. He was my mum and dad, brothers and sisters... imagining life without him is frightening.”

Cindy agreed to help Brian Daniels with his play to increase awareness of early onset dementia, which is thought to affect around 17,000 people in the UK. EOD is dementia diagnosed in those under the age of 65.

“I got the idea for a play about living with a partner’s early onset dementia when it happened to a very bright, sociable couple I knew,” says Brian. “It was very sad to see the dramatic change it caused. Her partner kept a journal of the experience.”

The stories of Cindy and Chris and this other couple are intertwined in Don’t Leave Me Now, which will be performed next week at West Yorkshire Playhouse in Leeds. During his research Brian was struck by the heavy stress the illness puts on partners/carers, who lose their loved one to the disease long before they actually die. “I wanted to write it because often people don’t realise the hardships people live through. It seems that in many cases those affected are in denial of the symptoms for a long time. Who can blame them, in a sense, because once they realise what the diagnosis means they know the only way is down.”

PLAYWRIGHT KEEN TO HAVE FEEDBACK

There will be two “script-in-hand” performances of Don’t Leave Me Now by Brian Daniels at West Yorkshire Playhouse, at 4pm and 6pm on Friday, September 27.

Space is limited, but he would like an audience of people with a particular interest in dementia to attend. They will be asked for feedback afterwards, with a view to including some of their ideas and observations in the final script. Admission is free, but please book a seat by emailing [email protected]

For more information about dementia go to www.alzheimers.org.uk or call the helpline on 0300 222 11 22. Anyone concerned about their or a relative’s memory should contact their GP.