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.
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.
Isolation and Loneliness Are Common
For Duckett, the most difficult aspect of his role as caregiver is the total isolation. "This encompasses both the person afflicted and the person who cares. One is not able to get out and mingle in society. Friends don't come around anymore."
Eikenberry and his wife are trying to avoid the isolation that Duckett describes by going public with her disease. He says it is tempting to try to "manage within ourselves," but they decided to be "quite open with it because Margie behaves differently and friends will notice. If they don't know what's causing the difference, they will make up reasons for it."
Duckett, who lives about 35 miles outside of Tacoma, Wash., says he has been helped greatly by an outreach program from a local hospital, Good Samaritan. "They sent a nurse who does an assessment and who helps me access the services that I need," says Duckett. He says, too, that the nurse urged him to get involved in support groups. He did this but found that most of the group members are women. "I felt I didn't belong, so I tried to start a group for men, but that didn't pan out."
Realizing that his caregiving responsibilities are likely to increase with time, Eikenberry says he has already investigated support groups and identified two local support groups for Parkinson's caregivers. He says, however, that he doesn't know if he'll find other men in those groups.
Paul Lindsley, an executive at Opryland Hotel in Nashville, Tenn. is in his early 30s, but he is still facing the caregiving challenges described by Duckett and Eikenberry. He is a caregiver for his 32-year-old wife, who has multiple sclerosis. He also serves as the state representative for the National Family Caregiver's Association.
Lindsley says his wife was diagnosed before they were married, so he went into the marriage knowing full well that he was likely to be both husband and caregiver. His wife has a type of MS called relapsing/remitting disease, which means that the disease can be dormant for many months and then flare up, creating extreme fatigue and affecting balance, movement, and vision.
Learning to Seek Help and Support
In his work with NFCA, Lindsley regularly speaks at caregiver conferences and conventions. Because MS "mostly hits women, many times men become the caregivers," yet in most instances the audience at these meetings "is usually women with very few men." To Lindsley that suggests that many male caregivers are struggling to cope by themselves without the benefit of a support group.
That doesn't surprise Miami-based Gary Barg, who has become a self-styled expert on caregiving.
While many male caregivers care for spouses and partners, Barg was introduced to caregiving when he moved to Florida in 1992 to help his mother take care of his grandparents. His grandfather had Alzheimer's disease and his grandmother had a variety of illnesses. Both were in and out of hospitals and nursing homes. Barg says that caregiving in those circumstances is "like hanging on to Jell-O."
But the experience led him to a new career: he and his mother publish a bimonthly caregivers magazine. He says that when he started his publication he estimated that about 15% of caregivers are men but now he thinks that it more likely that 20%-25% of caregivers are men.
Men, says Barg, often have a difficult time adjusting to the role, but he says it may be easier to be a caregiver for a partner or spouse than for a parent. "When it comes to changing diapers or bathing, it is very difficult for a man to visualize doing this for his mother," says Barg. But he says, too, that men are changing because society is changing. Younger men are more comfortable in nurturing roles than their fathers were.
"Being a caregiver is probably easier for a man who is 30 to 50 than it is for a 50- to 80-year-old man," he says.
But regardless of age, Barg thinks that men may be particularly vulnerable to the depression associated with the 24/7 job of caregiving. He says that even a cursory scan of chat rooms will turn up ample evidence of this.
Caregiving can be overwhelming, which can often trigger depression, says NFCA founder Suzanne Mintz. So it is especially important for caregivers -- both women and men -- to seek help, usually by arranging respite care, meaning a person who takes over for the caregiver for a specified number of hours. Respite care can be arranged through local or national agencies, and for those lucky enough to qualify, respite care is paid for by state or federal programs. In Duckett's case, the nurse from the local hospital helped him arrange for respite care "and eventually I qualified for 100 hours a month," he says.
But even with the help of respite care, the years of intense caregiving have taken a physical toll from Duckett; he developed heart problems at the same time that his wife's illness progressed to point where caring for her at home was no longer possible.
Both sad and determined, Duckett seems to speak for many men when he says, "She is in a nursing home now. I know I am going to lose her. I can't stop that. But I'm doing all that I can to get help for other caregivers, especially men."
There are several resources available for caregivers. They include:
Eldercare Locator, https://www.aoa.gov/elderpage/locator.html;
Alzheimer's Association, https://www.alz.org/caregiver;
Family Caregiver Alliance, https://www.caregiver.org;
National Alliance for Caregiving, https://www.caregiving.org;
National Association for Home Care, https://www.nahc.org;
National Caregiving Foundation, https://www.caregivingfoundation;
National Family Caregivers Association, https://www.nfcacares.org;
National Hospice and Palliative Care Organization, https://www.nhpco.org;
National Information Center for Children and Youth with Disabilities, https://www.nichcy.org;
National Mental Health Association, https://www.nmha.org;
National Stroke Association, https://www.stroke.org;
Rosalynn Carter Institute National Quality Caregiving Coalition, https://rci.gsw.peachnet.edu;
The Well Spouse Foundation, https://www.wellspouse.org.