Breathing Space London

mindfulness for health

The Guardian

The Guardian, 15 December 2007

'I've had a glimpse of who I used to be'

Marlene looks after her ageing parents; Seema's four-year-old autistic son is a full-time job; Linda left the rag trade to care for her mum. So what happened when they all went on a Buddhist retreat for carers to enjoy a bit of R and R? Yvonne Roberts reports.

On a clear winter afternoon, a line of women moves slowly around a lily pond on a farm in rural Suffolk. The aim is a walking meditation, trying to focus on the rhythm of their breathing while taking note of nature - the breeze in the trees, patterns of sunlight. It's moving to see such a diverse group attempting an activity so different from their lives in the East End of London.

In the centre of the pond is the figure of one of the five Buddhist deities, Akshobya, associated with unshakeable patience and calm. The women taking part in this exercise are all carers - and 48 hours earlier they were strangers to each other and to Buddhism.

The physical and mental effort of caring for relatives who may be fractious, demanding and manipulative or simply dependent and grateful, inevitably takes its toll - especially when, as emerges over the three days of this carers' retreat, family relationships have never been easy.

Vajrasana near Ixworth in Suffolk, formerly Potash Farm, belongs to the London Buddhist Centre (LBC). It sleeps more than 30, offering comfortable, if basic, accommodation. In a huge barn, a circular meditation room has been created from hay bales and cement, within which a golden Buddha sits.

For the past four years, the LBC has run Wednesday-to-Friday carers' retreats at Vajrasana. "The aim isn't conversion," says Vidyadaka, one of the leaders. "It's about making the carers feel cared for. It's surprising how rarely that happens."

Tower Hamlets and Waltham Forest social services foot the bill, so the retreats are free. They've proved to be so successful (95% approval rating is the norm), there are hopes of expanding the scheme. So, how did Heather Hawkes, Marlene O'Hankewu, Seema Kapoor, Linda Hughes and Theresa Smith fare?

The five women catch the Suffolk coach at the LBC on Wednesday afternoon. Theresa, 47, who has forgotten her antidepressants, is not untypical when she says she was in two minds whether to come at all: "This is right outside my comfort zone." Her 20-plus tattoos give a glimpse of her life so far - good times and bad. Now, she says little. Except that she has had only one four-day break in the 10 years she's cared for her mother, Rose.

Rose has arthritis, osteoporosis, diabetes, emphysema and mobility problems. She goes to a day centre for four hours, twice a week, and Theresa receives a couple of hours' counselling. The rest of the time, they are together.

"I don't know why but if I want to do something without her, she makes me feel guilty. It's always been like that."

Linda, 63, is immaculately dressed, her lime green top matching her handbag. She used to work in the rag trade until she gave up work 10 years ago to care for her stepfather and mother. Her stepdad has since died. "He was always horrible to me but it didn't mean I had to behave in the same way to him, did it?" she says, adding, "so how far is the nearest off-licence from this farm?"

Heather, 57, is a market researcher and "a multiple carer". Her oldest son, Russell, 25, has a learning disability. They live in Essex. Heather's mother, a widow in her 80s, lives in Bethnal Green, east London. She is registered blind. Heather visits her several times a week.

"I've decided this is 'me' time," Heather announces. "No point in feeling guilty. Whatever's on offer, I'll have."

Seema, 41, is the single mother of Kailash, four. She shows a photograph of a boy with a big smile and beautiful eyes. He's autistic with severe speech and language difficulties. He has no sense of danger; sleeps very intermittently and his fascination with moving car wheels - for instance - means taking him out is a challenge.

"He can't understand why he can't touch," Seema says. "His anxiety is so intense at times that the equivalent for us might be like witnessing a car crash." She is a graduate in biological sciences, a former green-haired punk and animal activist, and a reflexologist. Paid work has temporarily ceased, she says, while she concentrates on Kailash. Seema makes it sound like a privilege.

Marlene, 60, who is originally from Madras, didn't see her parents for 20 years. In 1995, when they arrived in the UK, she began to care for them as well as her husband and two children, all while working full time. Marlene has diabetes herself. Her last break was four years ago. "They are my family," she says. "It's what you do."

Marlene later tells how her parents had always disapproved of her marriage to Cosmas, her Nigerian husband. Then in 1999, Cosmas, a multi-linguist, began to demonstrate signs of dementia. Marlene's parents, Frank and Ada, were living with Marlene and her family in their two-bedroom house. Until Cosmas was placed in a home in 2001, Marlene found herself carer to the three adults.

After a two-hour journey, including a stop for a smoke and to pick up a couple of miniature bottles of wine for Linda, we turn into Vajrasana. Waiting for us is an LBC team of eight. The two leaders are Mahananda (meaning great bliss), 60, a former French teacher, and Vidyadaka (meaning aesthetic wisdom, unbounded creative energy), 35, a former graphic designer for MTV.

During their stay, as well as rest and relaxation, carers are given free massages and reflexology sessions. They are also taught to meditate as a way of relieving stress. The first day ends in the shrine barn. The bell tinkles, the women close their eyes and begin to meditate. "That was lovely," says Linda. "We didn't even fidget."

Mahananda announces that the next night, there will be some entertainment. "If we'd told you earlier that you'd be asked to sing or perform a poem, you'd never have got off the bus."

That evening, and for the remainder of the retreat, the carers talk. Jo, in her early 40s, and her husband, David, 61, have been together for 11 years. He now has early onset dementia and a number of physical and respiratory problems that require oxygen and 24-hour care. She works as a volunteer at the centre, helping during retreats.

"We pay for 60 hours' care a week, and I do the rest," Jo says. "I've still got the boxes packed from the last time I decided to leave." Last year, Jo's respite care was cut so she was unable to go on holiday. She gives me the notes she made for a talk she gave on a previous retreat. "When David and I met, we had fun, we went shopping in his sports car. Now, we go shopping with his wheelchair. It's not what I signed up for."

Jo has a beautiful, operatic voice but now she's a carer she can't afford the £40 an hour for lessons. She began an English degree as a mature student but had to give it up because of David's deteriorating health. "I make sure I have lots of interests," she says, "otherwise I'd go mad." Somehow, her humour remains intact.

Heather asks for Jo's advice. She says her mother has brief help in the morning and evening. She also had a sitter for 90 minutes in the afternoon, but as a result of a social services reassessment, the afternoon visit was axed, though her glaucoma was no better. "The person you care for may have good days and bad days," Jo warns. "But if you mention the good days, they take the help away."

Seema has had to fight too. Kailash used to get four hours' care on a Saturday until social services removed the funding without consultation. "I was gutted," she says. "Sometimes, I'm so tired it's like an out-of-body experience. Four hours made a difference."

She and other parents formed Families with Autism and campaigned against the decision. Some, including Seema, had a favourable outcome, but others are still without support. The same carer has now been rehired. "It might only be four hours - but it's my lifeline. Why should we constantly have to battle?"

Heather says that before she married, she worked for an airline. She saw the world. "Now, when I go and see my GP, he offers me antidepressants, but they aren't going to make my son independent overnight. They aren't going to give my mum back her eyesight. They aren't going to make it easier for me to be in two places at once."

On Thursday evening, almost everyone joins in the entertainment. Mahananda plays his accordion; Jo sings; Heather, in Barbra Streisand mode, belts out Evergreen, while a chorus of carers sing the Everly Brothers. Then there were poems, more songs and laughter. Much later in the evening, Theresa sits outside in front of Akshobya. "For the first time in my 47 years, I've just seen two shooting stars. I love this place," she says.

She wanted to be a radar operator in the navy but her father had an accident so she became his carer until his death when she was 15. "Then my mum needed help, so I left school and had three jobs. One way and another I've been a carer ever since."

Theresa has married three times, each relationship ended in domestic violence. She has two adult sons and a grandson on whom she dotes. She lives on £150 a fortnight. The next non-carers' retreat at Vajrasana costs £70. She says she's going to try to raise the money.

On the final morning, Mahananda and Vidyadaka ask for reactions. Unlikely friendships have been forged, and some are close to tears as they say goodbye. "When I arrived," Theresa reports, "I didn't like myself very much. For the first time in my life, I'm beginning to think I'm not so bad. Thank you."

Heather says she's never had an experience like it. "I realise now how much I've shut down. The retreat's given me a glimpse of the person I used to be. It's someone I miss."

Back in London, Marlene visits her ageing parents. Frank and Ada now live in their own flat. Ada has early onset dementia. She's been offered a day centre but refuses to go without her husband and there isn't a place for Frank. Marlene visits her parents every evening after work and on Saturdays.

"I was worried about the retreat because I'm a Catholic not a Buddhist, but I was really pleased I went," says Marlene. "When I came home, Mummy and Daddy were happy to see me. And I was happy to see them."

Linda, meanwhile, calls on her mother, Katie, 87, who lives in the same block of flats. Katie has Parkinson's disease. She goes to a day centre twice a week and church on Sundays. Linda's friend Angie has helped Katie with medication and meals and company while Linda was away.

"You look 10 years younger," Angie tells Linda. "You should have stayed a week."

"I wish," says Linda. "The retreat's been good for me. Before, I could be a bit snappy, now I'm calmer. I'd go again."

Katie smiles, happy to have her daughter home: "I've got an angel in church looking after me and I've got a daughter who cares. I'm lucky."