Why caring is a relative matter

ABU DHABI // Fatma Dhaheri has an unofficial full-time job - caring for her grandmother, who suffered a stroke three years ago and is paralysed on one side of her body.

Along with her mother, Ms Dhaheri, 26, devotes much of each day to all that entails, including trips to and from hospital, providing basic hygiene that her grandmother can no longer manage and feeding her several times a day. "I have to do it," Ms Dhaheri said. "Someone must do it." The UAE is a young country, with less than 10 per cent of its population over 65 and an average age of 30. Services for the elderly vary from emirate to emirate, and there is little available in the way of long-term care.

Families like Mrs Dhaheri's with ageing members are forced to navigate difficult choices. Many of the elderly are cared for at home, with the task most often being carried out by daughters and granddaughters. "In the Arabic culture, one family member must volunteer," said Dr Hanan Sheikh Ibrahim, a geriatrician at the American Hospital. "The house has three generations in it. They go to their traditional room and sit and have their coffee and share their experiences. I am impressed by how much they care here. That is the cultural difference."

Not everyone, however, can do what Ms Dhaheri has done. And as more women enter the workforce, it is placing a strain on the traditional social practice. Many quit their jobs, others hire untrained people to provide care. Sometimes it is easier to leave their elderly relatives in hospital for extended periods. "We keep them here and they stay, sometimes for months, just to have access to the nursing care," said Dr Ashraf Alghul, the chief of general internal medicine at Mafraq Hospital in Abu Dhabi. "That is not the way it should be, but at least it ties in with the family."

Complications from heart disease and diabetes, which can lead to permanent disability, usually bring older people into the hospital. "Sometimes they might have a stroke but not come to the emergency room for two days," Dr Alghul said. "It is really sad." These patients can develop difficulties moving and spend the rest of their lives in bed or a wheelchair. The hospital does what it can to train family members and helpers in how to care for elderly patients. The set of daily tasks could be complex, Dr Alghul said.

"The family members, the daughters, must learn how to inject insulin, how to put nutrition through a feeding tube, how to take care of a tracheotomy [an opening in the neck for breathing]," he said. "This needs well-educated people." The ideal situation, he said, would see trained nurses available to care for the patients in their homes as well as additional facilities built for those who need a greater level of medical supervision.

"It is a shame to take your mother or father to a nursing home," Dr Alghul said. "It is an embarrassment to the family. "We still don't have a fully equipped nursing home in the UAE. We should call them rehabilitation centres where they can stay for short periods of time to get extended nursing until the family knows how to take care of them at home." There is little in the way of long-term care in the UAE. One such facility is The Old People's Home in Sharjah, which has 50 beds and only 35 patients. For them, it is a place of last resort.

"It is for people who don't have family," said Mariam al Qatari, the director of the home. "Maybe they were never married or never had a son or daughter. Maybe the family cannot take care of old people. Maybe they don't have the money." Some hospitals employ home-care teams to liaise with families in caring for elderly relatives. They spend up to six weeks training the primary caregiver, whether it is a member of the family or hired assistance.

Depending on the level of care required, a nurse from the team will visit once a week or once a month to assess the patient. "Patients with major medical problems need 24-hour nursing," said Jacqueline Hardwick, a senior charge nurse of clinical case management at Tawam Hospital. Tawam's home-care programme is available to all Emiratis through the thiqa insurance programme. Similar programmes can be found at other hospitals in Abu Dhabi, but not all have developed home-care systems. In Ras al Khaimah, health clinics send nurses to the homes of bedridden patients; in Dubai, care is privately organised.

While these programmes do a lot to assist families, Ms Hardwick worries that it is not enough. "It is a problem in this country that we do not have step-down units or nursing homes," she said. "If we did, a lot of patients could benefit from those facilities." Cultural changes in recent years were also affecting the traditional practice of familial care, she said. "Ten years ago, when I first got here, it was very family-orientated," she said. Because the UAE is growing, more people have jobs outside the home and the younger generation is less interested in looking after relatives.

"They want to go out and work," Ms Hardwick said. "They want to live their own lives." Ms Dhaheri, who cares for her grandmother, has no paying job, so she has the opportunity to help. She finds time to go out and visit friends when others are available to watch her grandmother. "It does require a lot of strength and fortitude," she said. "I didn't know that after the stroke she would end up this way."

Although her grandmother needs to be supervised 24 hours a day, Ms Dhaheri does not see her as a burden on the family. The idea of leaving her permanently in a facility horrifies her. She would miss all the time she gets to spend with her. "Mentally she is good," she said. "She has a sense of humour, and jokes and talks a lot." @Email:amcmeans@thenational.ae