The Hardest Job a Man May Ever Have
Isolation and Loneliness Are Common continued...
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
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
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."