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Doctors do a great job of keeping people alive. But, Karch and others say, doctors are not as good at caring for caretakers, whose needs may in some ways be as great as those of the sick patients.
The main thrust of the office visit with Mr. X and his wife was why we shouldn't reverse the decision the neurologist had made: that his Alzheimer's would make him unsafe on the road. Mr X pleaded pitiably to be allowed to drive, while his wife discretely urged me not to comply--while trying to not incur his anger.
The strain on Mr. X's wife was very apparent. She was there herself to be seen for fatigue, aches and pains that she thought were a form of the flu--but which I interpreted as psychosomatic manifestations of stress. Her husband was persisting with a plan for a long-distance trip, and she was exhausted by the thought of it.
Hidden patients"Hidden patients" is the term coined for caregivers in an article titled "Practical Guide to Caring for Caregivers," published in American Family Physician.
Many experts in the field lament the rather poor job physicians do, and this guide encourages doctors to bone up on their skills.
Up to 47 percent of caregivers were found to be depressed in one study, the authors say. And caregivers have been found to have decreased immune function as a result of stress.
Caregivers also suffer a significant financial burden. It's estimated that an Alzheimer's patient for example, requires 70 hours of care giving per week. By 1990-dollar amounts, says the article, it was calculated that a caregiver provides $34,517 of care annually.
Caregiver burden is obviously linked to the number of elderly needing care--a number that is growing, thanks to various factors, says Karch, who owns a business called Home Instead Senior Care.
Karch made this point at a recent startup meeting of the Fredericksburg Regional Chamber of Commerce's Health Care Council. This initiative by the chamber--to assess and address such deficiencies in health care in the local area--fills me with hope. Maybe, working together, we can provide some clout to stand up to the insurance companies and governmental agencies that control allocation of money to facilities for the elderly.
Hopefully, we can advocate for those people who generally aren't very good at having political clout--the ones getting shafted.
"Virginia really doesn't care about the seniors" Karch said, basing his criticism on the fact that Virginia ranks 48th in expenditure for long-term care per capita. Added to that, the greater Fredericksburg area has only 20 percent of the number of nursing home and assisted-living beds it needs, Karch said, citing numbers extrapolated from the 2000 census.
The situation is compounded by a growing number of caretakers being part of the "Sandwich Generation," squished between the needs of caring for their children and their parents.
I see this frequently in the office, and it's harrowing. As the elderly patient gets more demented and sicker, the family gets more flipped out. The situation is often worsened by the trend of insurance companies putting the squeeze on hospitals and demanding shorter hospital stays. Not infrequently, I see people sent home without a workable home-care plan.
Guilt and griefThe most tragic scenario I see is the devoted couple that has tended to each other's often escalating needs over the years, and been each other's devoted companion. And then one dies, and so often the other has to uproot, give up the house, leave friends and possibly pets, and move to some completely strange place.
It's no surprise that statistics show surviving spouses have a very high death rate shortly after their partner dies.
Bereavement can be complicated for the caregiver--because of feelings of guilt. The authors of the guide I mentioned note the paradoxical emotions caregivers sometimes have while their spouses are alive.
"The primary caregiver can have trouble accepting family members' support, while at the same time resenting a perceived lack of support."
Guilt, they say, is often the impediment to accepting help--and guilt is thought to be what makes some caregivers have such a hard time with grief.
Doctors need to be alert to the needs of overburdened caregivers and ask screening questions about whether they feel overwhelmed, resentful, depressed or guilty. Doctors also should be alert to signs of extreme frustration manifesting as elder abuse.
Strong family and social supports are almost essential to caregivers. The authors of the guide urge doctors to ask their caregiver patients, "Have you been offered help?" And, all importantly, "Have you accepted?"
Sadly, with the growing elderly population--in part because we're so good at keeping people alive--there will be ever more of the Mr. and Mrs. X's. Hopefully things can be improved if the chamber's Health Care Council, together with Karl Karch's war on the deficiencies of elder care, catch the attention of our legislators. And hopefully, we bumbling doctors can learn to take better care of the caretakers.
DR. PATRICK NEUSTATTER can be reached at
Email: pneustatter@prattmed.com.