Caregiving

Dear WholeFamily Counselor: My mother seems to be at an early stage of Alzheimer's, though the doctor says it is too soon to tell. She used to keep an immaculate home, but now it's often dirty and when I try to hire help, she often cancels them (though the first time I brought someone in, she let her work). There are other ways I have tried to offer to help her, such as making doctor appointments, but she insists she doesn't need help. My father is not much help.

Read about how David, the patient and Rachel, the wife feel. Read Part II and see how Sabina, the cargiver, Janet, the daycare center director and Bernard, the son, feel. David: I feel lost. I know I'm in a familiar place. I know these people around me, but I can't seem to remember their names. They're always asking me to do things, or not to do things -- and I'm always disappointing them. That woman, the one who calls me "dear", but seems so tense and nervous lately -- she's not my mother, but she's very central in this place.

Read about how Sabina, the cargiver, Janet, the daycare center director and Bernard, the son, feel. See Part I about how David, the patient and Rachel, the wife feel. Sabina, the caregiver: I don't know how to manage that man. He's really very difficult. I came to be a caregiver from the Philippines. My sister and my aunt are also caregivers and they found me this position. I thought I'd have to help an old man walk, and go to the toilet; maybe feed him, and dress him, but this man is not disabled physically.

Harvey, 58, an insurance salesman, is married to Janice, 53. Janice's 79 year-old mother, Martha, suffers from Alzheimer's. Martha lives in her own apartment with live-in caretakers, Gloria and Joseph, a Filipino couple, both in their 30s, who look after her but need constant supervision. Harvey is upset because his wife spends so much time with her mother, and she has even quit her job as a travel agent so that she can spend more time looking after her mother every day. Harvey and Janice have three children, Benny, 14, Jason, 16 and Rita, 17, all in high school.

Jenny, 55, a piano teacher, married with two grown children and three grandchildren, and Iris, 61, a retired librarian, married with no children, are the daughters of Ruth, 81, who has recently suffered a stroke and is recovering slowly in a rehabilitation hospital. It is anticipated that she will be able to return home in a month or two. Meanwhile, her case is being managed by a rehabilitation team consisting of a social worker, her doctor, a psychologist, a physiotherapist and a speech therapist. Iris, recently retired, visits her mother every day and stays for a few hours, while Jenny, who teaches four days a week at the local conservatory, comes twice a week for an hour or so.

The club room in a suburban nursing home gradually filled up with elderly women and one old gent. Some came laboriously into the room on walkers,others used canes, but most entered slowly on their own steam. They didn't talk much to each other and one gray haired woman promptly fell asleep.

The differences of opinion between the two sisters about their mother's care in the drama, "Babying Mom", is not unusual. Aside from the average sibling rivalry that's being exhibited, (yes, it exists and flourishes even at the ages of 61 and 55), there are the two different situations in which they find themselves, reflecting their different needs and personalities. Jenny is pressured by the many responsibilities and conflicting loyalties that make her day so full. She probably feels a little guilty that she can't give her mother as much attention as her sister does.

In response to a family crisis, Harvey and Janice are struggling to keep their family from changing, Harvey by trying to convince Janice that she should be home more and Janice by enlisting Rita to "fill in" for her.

One of the most common problems faced by adult children of aging parents is the dilemma, "How much do I owe my immediate family, the nuclear unit, vs. how much do I owe my aging parents, especially if they are in need?" As we can see from the dialogue under discussion, a great deal of misunderstanding and conflict can arise around this question. In certain cases, especially among traditional cultures, where generations live together, it is accepted that the daughters and daughters-in-law naturally assume the task of caring for the elder members of the extended family. Since there are usually several female adults in these households, childcare, parent care, cooking and housekeeping can be divided up and the stream of life goes on undisturbed.

Even though it's inevitable, death and dying is just as mysterious and elusive a subject in the modern world as it was in prehistoric times. Professional people who work with the dying seem to us both heroic and saintly. Yet the hospice or oncology department staff see nothing unusual about their work. "We do what has to be done," they say matter-of-factly. Bris Bird is a nurse in a palliative care unit. She has vast experience working with terminal patients, both in the hospital setting and through home care service.

It's an ugly subject. It shouldn't exist. It's one of those taboo issues we like to sweep under the rug, ignore, and pretend doesn't happen. Unfortunately, abuse of the elderly, like abuse of women or children, is a fact of life which might be increasing throughout the world. "Abuse takes one of four forms," explained professor of social work, Howie Litwin. "There is physical abuse, the 'battered grandma syndrome,' which includes blows, burns or even restraints, such as tying a patient to his chair or gagging him.

Q: Both my wife and I are in our late sixties. I worked hard over the years, so that we could have a comfortable retirement and enjoy the time together. But my wife has had Parkinson's disease for many years, and in the last year, there has been a rapid decline. A woman comes in to help for a few hours a day, but most of the caretaker load falls on me. I loved her and cared for her for many years when she was still a person I could relate to. But today she's entirely changed. She doesn't even always recognize me. I simply can't take care of her myself anymore.