Nursing a parent, spouse, other relative, or friend through the painful progress of a terminal disease is not a road best traveled alone. The Complete Bedside Companion offers warmth, encouragement, and the medical, legal, financial, and emotional advice you need when caring for an ailing loved one.
Drawing on the experiences of dozens of ordinary people who have cared for relatives and friends ill or dying from cancer, Alzheimer's disease, heart disease, stroke, emphysema, diabetes, AIDS, and other serious conditions -- along with the practical wisdom of distinguished medical, legal, financial, and psychological experts -- this sound, compassionate guide provides field-tested advice on every aspect of caring for the sick including:
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Rodger McFarlane, one of America's most respected consumer advocates for the sick, currently directs collaborative research between the American Association of Health Plans and Lotus (IBM), evaluating experimental medical treatments on behalf of customers of the managed care industry. He is the former Executive Director of the Gay Men's Health Crisis (GMHC) and Broadway Cares/Equity Fights AIDS.
Nursing a parent, spouse, other relative, or friend through the painful progress of a terminal disease is not a road best traveled alone. The Complete Bedside Companion offers warmth, encouragement, and the medical, legal, financial, and emotional advice you need when caring for an ailing loved one.
Drawing on the experiences of dozens of ordinary people who have cared for relatives and friends ill or dying from cancer, Alzheimer's disease, heart disease, stroke, emphysema, diabetes, AIDS, and other serious conditions -- along with the practical wisdom of distinguished medical, legal, financial, and psychological experts -- this sound, compassionate guide provides field-tested advice on every aspect of caring for the sick, including:
-- Doing battle with insurance companies
-- Managing symptoms such as nausea or pain
-- Exploring experimental and alternative therapies
-- Maintaining cash flow and coping with bills
From Chapter 1 -- The Hospital and the Medical Team, Who's Who and What's What
When It Is Most Important to Be at an Ailing Loved One's Side
Aunt Kitty immediately got on the phone to my younger brother David, who was relaxing on the beach in California after having completed his peak business season. David runs his own firm, designing seasonal showrooms and corporate displays for large companies. He works like a madman from September to mid-January, then divides the rest of the year between traveling and freelance design assignments. Since my brother was on downtime, he was able to fly to Mobile the next morning. "I got there the day before Daddy's surgery," David remembers, "and stayed for the two weeks that he was in the hospital."
Meanwhile, I set about delegating my work duties among my staff at Broadway Cares/Equity Fights AIDS, so I could spend all of May caring for my father. A smooth recovery from bypass surgery can range from a couple of weeks to several months. Between David and me, we had Dad's hospitalization and surgical recuperation covered. Even if subsequent medical problems developed, we could at least get him home and on his feet, and arrange for his future care before I left town. It also gave us a chance -- as a family -- to tend to the bills, the bank, the house, and the lawyer, something we would later come to appreciate. For Bob, Mary, and Kitty, our timing was perfect. It was also the best use of the limited time Dave and I had. We both kept our trips short, because the two of us quietly suspected that Dad might be needing us more in the months ahead.
Admittedly, my brother and I enjoyed an extraordinary degree of flexibility personally and professionally. What if your life more resembles that of my other brothers'? Bobby, the eldest, lived eight hours away in Shreveport, Louisiana, with his wife, Karen, and their children, Aaron and Lorna. He visited Dad in the hospital but wasn't in a position to take extended time off from work right then. John, the youngest, came right away as well. But he was as on active duty in the Army, and he and his wife also have a young son and a daughter.
Upon learning that someone you love is gravely ill, your first impulse is to drop everything and rush to his side. If you live a distance away and have to ration your trips, dashing there at the onset may not be the wisest investment of time unless the person is not expected to survive the immediate storm. With medicine ever more able to pull patients through critical episodes, what begins as an acute crisis frequently stretches out over weeks, months, or longer. Even terminal patients may experience intervals of reasonably good health, during which they require perhaps a single care partner or remain self-sufficient -- for the time being.
Generally, the sick person most needs family and friends around during times of transition: when the doctor delivers the diagnosis; during major hospitalizations; at the start of intensive outpatient treatment (kidney dialysis, cancer chemotherapy, radiation therapy) expected to produce unwanted or debilitating side effects; upon being discharged from the hospital in a condition that will require her to rely on assistance with the activities of daily living; upon entering a nursing home; when death appears imminent.
And if circumstances don't permit us to be away from home for every one of these critical junctures, then we prioritize. Yes, it would be wonderful to hold our loved one's hand as the doctor is outlining the diagnosis and prognosis, but I can provide comfort and emotional support over the phone if need be. I can call the primary physician for a long distance briefing on the sick person's condition, and I can begin alerting family and close friends and neighbors. When pondering the best time to visit ask yourself, When can I be most useful?
Copyright © 1998 by Roger McFarlane
Continues...
Excerpted from The Complete Bedside Companionby Rodger Mcfarlane Copyright © 1999 by Rodger Mcfarlane. Excerpted by permission.
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