Brother, do you love me? The call for help that sparked a nursing home rescue mission | Down syndrome

0

Jhey, there were only five words, separated by four tiny dots and four spaces: “brother. do. you. to like. me.” But when, in November 2020, that text from Reuben Coe, who was alone in his room at a Dorset nursing home, arrived on his brother Manni’s phone in Andalucia, there was little he could do about it. Manni had to get him out.

Soon the 48-year-old travel guide was packing his bags, saying an indefinite goodbye to his partner Jack and flying to Britain on a one-way ticket. He picked up Reuben, 38, with Down syndrome, from home, where he had a 10 per cent chance of recovering from the terrible isolation that had hit him, and took him to a cottage in a village near the Jurassic Coast.

Over the next 26 weeks, he had only one goal in mind: to try to help his brother, who at the time was non-verbal, withdrawn and depressed, get better. But what came to fruition was a journey that is still unfolding. The brothers have published a book, featuring Manni’s writing and Reuben’s drawings, they are touring the UK, and Reuben – who Manni says is now around 75% of his old self and getting better day by day – has a new home.

Sitting in an emerald green armchair in the middle of a South West London theater, Reuben is quick to communicate. Showing me a newspaper photo of the queen lying in state, he said quietly, “I miss her.”

Manni, left, and Reuben Coe. Photography: Andy Hall/The Observer

On the floor next to him is a blue tote bag, to which he then carefully hands over the newspaper, and on him at all times is a narrow brush, which he sometimes uses to stroke his skin or the chair. He often looks up at the dramatically lit scene, dressed in forest landscapes, which instantly reminds him Jack and the Beanstalk. Before I arrived, they were dancing around the auditorium to The beauty and the Beast, Manni says. Later in the evening, Reuben, who loves theatre, films and musicals, will appear on stage at the Normansfield Theater at the Langdon Down Center in Teddington to a packed house to thunderous applause.

The book, published this month by Little Toller Books, tells the story of their journey together during Covid and how they wrote and charted their path through one of their biggest challenges. Their images and their words communicate with each other but also express the voices of two intertwined individual lives. It also describes their life growing up in the Yorkshire Dales, then Berkshire, with their parents in a family of four brothers – a life that “revolved around the church”, writes Manni. At one point, they lived in the nursing home run by their father.

Originally, there were no plans to share their writings and drawings publicly, says Manni. Reuben’s boldly colored felt-tip drawings – which include Joseph’s technicolor dreamcoat, numerous lions and the lamppost of Lion, the witch and the wardrobe – were a means of expression and communication at a time when words were not available.

Every night he would draw a picture for me, give me a kiss, whisper ‘night brother’, then hand it to me upside down, so there was a big reveal,” Manni says. “And that’s how we communicated – he communicated with me through drawing.”

And for Manni, who has always written, it was a form of therapy. “Writing about it gave me hope because I realized there was a narrative and I wanted it to be a happy ending,” he says, his voice cracking with emotion. “So if I wrote it down, it gave me the inspiration that we could push this to a happy ending.”

Their six-week tour, which will take them to bookstores and festivals in England and Wales, will culminate at the Hay Festival with Sally Phillips interviewing them, after Manni approached the actor during a chance meeting at a restaurant . The first thing Reuben intends to tell her is that she Miranda slogan “support with”.

How does it feel to share such an intensely personal journey? “We’re still getting used to it, because we’ve had a very quiet year,” Manni said. “It’s like we take it outside. So it was a very private thing and now it’s becoming very public.

Reuben is clear on why they are doing it. “Helping people,” he says.

Manni adds: “We think we can. We believe that what we have experienced will help other people. They have already contacted people who have read the book. “It’s a story that so many people identify with,” Manni says. “Not just people who have someone in the family with Down syndrome or a sibling, but anyone who has been isolated during lockdown – and there were many of us. Covid has not gone away. Some people still live it.

Prior to September 2018, when Reuben was living with his brother and girlfriend in Spain, he was “talkative Cathy”, Manni says. “Still the life and soul of the party.” He didn’t use many full sentences, but he was a good communicator.

He regressed clinically, then improved, before regressing massively when he was admitted to a nursing home in February 2020. Family Zooms made everyone feel further away, not closer. A photo taken during Reuben’s lockdown shows him staring out of his bedroom window, one hand against the glass.

One of Reuben Coe's drawings from his book
One of Reuben Coe’s drawings, based on The Lion, the Witch and the Wardrobe, which features in his new book. Photography: Manni Coe

Manni spent almost two months visiting him every day during the summer, but returned to Spain with “huge doubts”. It wasn’t until a November selfie of Reuben roaring like a lion that gave him hope. “It was a defining moment. It was there that I saw that he was ready to fight and that he had found courage. Shortly after came the text – my brother. do. you. to like. me. – which will inspire the title of their book.

The text wasn’t a question, Manni said, it was a prompt. “It was Reuben’s way of saying ‘Come on and get me out of here. If you love me then show me the color of your love. Is that what you meant Reubs? Reuben raises his finger in agreement. The color of their love is probably a red rainbow, he says.

But when Manni picked him up from the nursing home, Reuben wasn’t well. “When I got him out of the house, he was totally non-verbal. And that’s how the drawing happened. He communicated by drawing.

They started going for walks, gradually increasing the distance, and Reuben saw a therapist, who joined their Covid bubble. “She came to the house once a week and also started helping Reuben recover physically, as he was suffering from muscle wasting and was very weak as he hadn’t been anywhere in months,” Manni explains. “And she started working on her expression.”

On Fridays, they put on musicals and staged them live on Instagram. And one day, Manni decided to pretend it was Christmas, with a tree and decorations. The therapist came up with music from his favorite movies – Lord of the Rings, Mary Poppins, Chitty Chitty Bang Bang – and started doing finger dances that Reuben would follow. Another central element of life that Reuben lacked was touch. “No one has really touched it for months, and that’s where the brush comes from, for the feel. It’s pretty heartbreaking,” Manni says.

Describing their first hug when they were reunited, Manni says it was “simply amazing”. He says Reuben told him afterwards, “I needed this” – to which Reuben raises his finger to show me he agrees.

This isn’t the first time Manni has had to take Reuben out. The first dates back a few years when he was sent on a visit to Spain dressed in his pajamas. “We called it Dirty Sheets,” he says. “And Reubs was obese, massively overweight. You were in the wrong place, were you Reubs? »

Their experiences showed Manni that nursing homes are only as good as the quality of the people who work there. “The two negative experiences we had, it was all down to staffing issues, understaffing, not enough people for too many tenants,” he says. Of the first house he had to get Reuben out of, he adds: “They took care of him but they didn’t take care of him. There is a big difference, I think.

Drawing by Reuben Coe from brother.do.you.love.me.
Aslan by Reuben Coe drawing by brother.do.you.love.me Photography: Reuben Coe

Caring, he believes, should be a well-paying career. “It’s a special gift, and so many people who are gifted caregivers have to move on just because they can’t make it work financially.”

When Reuben was ready for a more independent life, Manni and Jack strongly considered inviting him to live with them again, but felt the best option was for him to be somewhere where he could create his own. community.

They found a place for her in a newly built house in Dorset, where there are no common areas or hallways, but individual private spaces that residents can invite themselves into. Reuben has his own rental agreement and is encouraged to be as independent as possible. After a period of transition, Manni returned to his life in Spain.

Saying goodbye after their time together in the cottage was desperately painful. But now Reuben says he feels at home there. In a list of “good things” he compiled before moving in, he wrote, “I’m home now.” Manni is working on his next book, a prequel to this one, about when they bought the house in Spain.

Manni and Reuben often re-enact a scene from The neckor Purple, one of their favorite movies, where two estranged sisters find themselves in a field of purple flowers. After reuniting to embark on their tour, Reuben gave Manni a picture of a lavender field. “It was the reunion of two siblings.”

brother. do. you. to like. me. by Manni and Reuben Coe is published by Little Toller (£22). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply

Share.

Comments are closed.