"Putting my mother in a nursing home was the hardest decision I ever made. Ever," said Cynthia Cooper, recalling the day just over 3 years ago when she knew her mother could never return home.
Her mother, Frances Zaft, had lived in her own apartment in Randolph, Mass., with minimal outside help until, at age 88, she underwent a hysterectomy. She sailed through the surgery, only to develop a major infection a few days later, leading to a prolonged hospital stay and transfer to a rehabilitation facility. Weak, debilitated and depressed, she needed help with dressing, going to the bathroom, even getting out of a chair.
"The only alternative to her going to a nursing home would have been moving in with me," said Cynthia. "That would have meant my husband moving out. She needed so much care."
For people like Frances, who require skilled nursing care as well as physical therapy, a nursing home is the only answer. Currently, 24 percent of Americans over the age of 85 live in a nursing home. According to projections by Peter Kemper and Christopher Murtaugh, published in the New England Journal of Medicine in 1991, 43 percent of Americans over the age of 65 will live in a nursing home for some period before they die.
They face a series of challenges: Choosing the right home, finding ways to make life meaningful in their new surroundings and, ultimately, making decisions about how they will die. As Cynthia found out, the process can be a complex one.
Because her mother was a patient in the New England Sinai Hospital, the social work department there matched her up with a home. "It was clean and the care was good," Cynthia recalled, "but my mother wouldn't eat the food there. There was no Jewish-style cooking, nothing she was used to. That's when I realized I had to arrange for her to be admitted to the Hebrew Rehab Center in Boston."
Adjusting to nursing home life was not easy for mother or daughter. Frances lived in a double room and complained that her first roommate was downright nasty to her. Occasionally, a lost male resident wandered into her room to use her bathroom.
"My mother was miserable at first," Cynthia said. "But she had a wonderful nursing assistant. She literally brought my mother back to life. She made such a difference in her mental stability. And, frankly, in mine."
But that wasn't the end of the decisions Cynthia would make about her mother's care. When Frances arrived at Hebrew Rehab, the facility social worker asked her choose a health-care proxy the person doctors would turn to for help in making difficult medical decisions if Frances were unable to make her own. She readily selected her daughter.
Cynthia's decision-making abilities were put to the test early on in her mother's stay. The nursing home physician asked Cynthia whether cardiopulmonary resuscitation should be attempted if her mother's heart stopped and she was not breathing. "We had talked about what my mother would want in terms of medical care if she got sick again. Whenever a friend developed a problem and had an operation or a procedure, I would ask my mother, 'Would you want that if you were in her shoes?' Mom told me that she wouldn't want me to keep her alive with machines. So I knew what she wanted."
Many family members don't find this decision an easy one, even though, according to a 1989 study by Don Murphy and colleagues in the Annals of Internal Medicine, the odds of a nursing home patient surviving a cardiac arrest are less than 3 percent. And the rare elderly survivor, reports a 1996 article in the Archives of Internal Medicine, often can no longer dress or walk independently.
Back in 1998, Cynthia thought any medical intervention short of CPR would make sense for her mother. She hoped Frances ultimately would regain her strength and emotional well-being. Her goals for her mother were simple: To keep her going and to help her remain as independent as possible.
Then Frances did what one of about every 300,000 people over the age of 65 do each year she broke her hip.
She was rushed to the hospital for surgery. During her mother's brief hospital stay, Cynthia discovered even first-class hospitals often are not the best place for elderly nursing home patients.
"The hospital stay was horrible, really horrible," she recalled. "It was the weekend and the nursing staff was minimal. My mother was in pain. Everyone was in and out and no one seemed to care. No one knew her. Then she 'sundowned' she became so confused every evening. She refused to eat. She was incontinent in the bed. I came and found her in soiled sheets and she looked at me and said, 'Where were you?' It broke my heart."
Cynthia decided then and there to avoid hospital care for her mother in the future if at all possible.
"I called the doctor and told him it was time to concentrate on comfort. He said he could write a 'do not hospitalize' order. Mom would still get medicines like antibiotics and fluid pills if she needed them. But if she got sick, she would be treated in the nursing home, in her own bed, with nurses who knew her."
Achieving comfort in the nursing home is not always easy. A 1997 report by the Institute of Medicine revealed between 40 percent and 80 percent of nursing home residents experience pain regularly, mostly because the staff may be reluctant to use narcotics to relieve suffering. Cynthia said she made sure to speak with the nursing home physician to get the message across that controlling her mother's symptoms especially her pain was her primary goal.
Good care to the end
Nursing homes are not always good places to die, though 24 percent of Americans over the age of 65 do just that, according to a 2000 report from the Rand Center to Improve Care of the Dying. Not only is pain control often inadequate, but doctors generally don't get involved in care. Some families draw on support from a hospice program, which often will send a nurse to make recommendations about symptom management and provide a personal attendant for several hours a day as the end draws near. Hospices typically offer counseling to families as well as to patients.
For Cynthia, the center's chaplain has been invaluable.
"I sit with Cynthia and her mother whenever I have the chance," says Hali Diecidue, who, together with a full-time rabbi, offers religious services, pastoral counseling, study groups and sing-alongs to the residents. "We don't feel we have to talk to Frances all the time. Often it's enough just to be with her."
Smaller and non-denominational homes do not have their own chaplains, but most have relationships with clergy who visit regularly. For many family members of nursing home residents, their own minister, priest or rabbi provide support.
Despite the decision to avoid hospitals and limit diagnostic tests, Frances Zaft is very much alive. She sits in her wheelchair, her white hair neatly coiffed, her clothes clean and attractive. She wears a beaded necklace, a gift from her grandson. Often she dozes. Periodically she looks through her large round glasses and asks, "Can I have corn on the cob today?"
Cynthia Cooper knows her mother is on the last leg of her journey through life and she wants to make whatever time her mother has left as comfortable and meaningful as possible. At this point, says Cynthia, "it's the little things that count. Mom is wearing navy blue slacks and navy blue shoes. She should be wearing matching socks. Touching matters those moments of physical contact.
"Treating my mother with respect counts," Cynthia says. "She may have trouble hearing and seeing. She may have difficulty following your line of thought even if she can hear you. But she's not 'honey' or 'dear.' She's a person with a family and a history. She's Frances Zaft."