Oct. 15, 2001 -- Don E. Duckett, Ralph Eikenberry, Gary Barg, and Paul Lindsley have never met, yet they have walked in each others' shoes. They are all caregivers for a wife or relative.
The National Family Caregivers Association says that results of a recent survey it conducted suggest that about one in four American adults served as caregiver for a family member in the last year. The best current estimate is that 22 million Americans are family caregivers, and of those about one in five are men.
"I'm sorry, but there's nothing more we can do."
No patient wants to hear that. No doctor wants to say it. And with good reason: It isn't true.
It is true that in the course of many illnesses, cure ceases to be an option.
But no hope of a sure cure does not mean no hope at all. It certainly does not mean there is nothing more to be done.
When you receive the information that your illness is serious, a palliative care team can help you handle the news and cope with the many questions and challenges...
Don E. Duckett cares for his wife who was diagnosed in 1996 with Pick's dementia, a type of rapidly progressing dementia that usually is diagnosed in middle-aged people. Duckett's wife was 56 when she was diagnosed.
"From the time of diagnosis patients usually live for five to seven years," Duckett tells WebMD. But during those years the patient becomes progressively more confused, frustrated, and angry. Memory fails, the patient can no longer bathe or dress himself or herself. They become incontinent. "Incontinent. When she was diagnosed, I didn't even know what incontinence was," says Duckett.
Eventually communication stops and the patient becomes silent. "My wife stopped talking a year ago," says Duckett. "I can't tell if she needs something, or if she is ill or in pain."
Sometimes All You Can Do Is Cheer
For Ralph Eikenberry, life as a caregiver is different. In his home in Forrest Village, Wash., Eikenberry, 74, tackles his share of the household cleaning tasks, while in the background his wife Margie, also 74, practices with her Hawaiian dance troupe, the Forrest Village Tutus. Eikenberry says he likes to watch the women dance because it gives him the opportunity to cheer on his wife's efforts because "so far caregiving for me is being a cheerleader."
Margie Eikenberry was diagnosed with Parkinson's disease four years ago. "It was a terrible shock for both us because we had both been remarkably healthy," says Eikenberry. When the shock subsided, Eikenberry, like Duckett, sought out information and support. For him the major resource has been the Parkinson's Foundation. "It recently came out with a guidebook for Parkinson's caregivers, and that is very helpful. We also have a Parkinson's center at our local hospital, and that is a good resource," says Eikenberry.
Although Eikenberry's caregiving responsibilities have not progressed to the stage described by Duckett, he says that it is still a full time job. For example, the couple takes a daily two-mile walk. "If I notice that Margie's gait is not right I will tell her to lengthen her stride, increase her arm swing," says Eikenberry.