When stress become great, who will care for the caregiver?
It creeps up when you're not paying attention. The maladies of old age emerge insidiously, with a creaky knee here and a senior moment there. There's too much living going on to worry about the why behind routine aches and pains or a lost set of keys. Rarely do active middle-age adults stop and notice the arrival of the grimmest age-related conditions. But last week, iconic University of Tennessee basketball coach Pat Summitt, 59, disclosed that she has been diagnosed with early onset Alzheimer's disease. Concerns about memory lapses she attributed to her arthritis medication led the nine-time national championship coach to her doctors, who suggested additional tests for the degenerative brain disease. Summitt announced she will continue coaching while undergoing treatment to slow the deterioration of cognitive skills."I've got a great staff and great support system, and I'm going to stick my neck out and do what I always do," Summitt told The Washington Post. Often, though, individuals and their loved ones reach a point at which the burden of daily living becomes too much to handle. Or worse, lives are turned upside down by a stroke, a serious fall or a scare related to memory loss. Either way, families usually hit critical mass when the medical, emotional and financial demands of grave illness and the associated stress implode. Suddenly, they need help. "You don't plan ahead. You're not expecting your husband to have a heart attack. You don't expect to have a heart attack," said Kim Linder, founder of Senior Holistic Living and host of The Caregiver Hour radio show on WHNZ (1250 AM). Florence R. "Pat" Herman, 80, lives with a list of ailments, the most serious being her inability to walk without help. Until a year ago, she and husband Bernie, 87, felt they could juggle everything: doctor's appointments, cleaning and cooking, and helping Pat get around. The Clearwater couple's two adult daughters saw stress was taking a toll on their parents and suggested they get a professional caregiver to run errands and help Pat bathe. Pat Herman said the arrival of caregiver Carmelita Sowma allowed her husband to worry less about her care. "He was excellent, but he got tired," she said of their decision to hire a caregiver from the local Home Instead Senior Care franchise. Bernie Herman, a former district attorney in Massachusetts, worries about what could have happened if he and his wife hadn't hired Sowma. The last thing either one wants is to end up in a nursing home. "It would have been horrible, the consequences if we didn't have this intervention," he said. The National Family Caregivers Association estimates 65 million people, including 1.7 million in Florida, provide some kind of care for a disabled, elderly or chronically ill family member. The family member, on average, spends 20 hours a week in that role. Many caregivers aren't prepared for the weight of responsibility they will carry, said Susan Reinhard, senior vice president for public policy at AARP, the senior advocacy group. That's a big reason caregivers report higher levels of stress, depression and poor health. That pressure will only increase with advancements in medicine and treatments, and with aging baby boomers who are averse to staying in hospitals and nursing homes, experts say. "What I see is that people get out of the hospital and they want to go home," said Julie Krol, owner of the Home Instead franchise. "They do not want to go to a rehab facility. … They want to get home sooner, so they need more care" when they get home. Last month, AARP issued a report detailing the complexities of family caregivers. For example, a person getting discharged from a hospital today can need catheter tubes instead of bedpans, and a dozen or more medications a day, including drugs given by injection. "It's becoming more complicated for caregivers because of these demands," Reinhard said. St. Petersburg physician Margarita Nunez has seen relatives, including her father, struggle as caregivers. Despite her training as a doctor, she is surprised by the expectations medical professionals have for a patient's loved ones. "The technology is so advanced and things change so much that it's overwhelming," she said. It's critical that caregivers ask for help, said William Haley, a professor in the School of Aging Studies at the University of South Florida. In turn, medical professionals should consider how a caregiver can help maintain or improve a patient's health. "It really makes it incumbent on health care providers to prepare caregivers … teaching them procedures, but also preparing for the emotional part of caregiving," he said. Family members should watch and practice treatments such as injections while at the hospital, and they should be given a phone number for 24-hour access to the medical team. Confidence can benefit the physical and emotional health of the patient and the caregiver, Nunez said. "No one should take anyone home if they don't understand the instructions," she said. After a family gets home, caregivers need continued support, Haley said. The best places to start include local Area Agency on Aging offices and finding a geriatric case manager who is trained to navigate the social, emotional and bureaucratic challenges facing the chronically ill and elderly, he said. Linder, who is holding a daylong symposium for caregivers next month in Clearwater, said caregivers undervalue their own physical and mental health when paying attention to another's illness. Caregivers should approach care for themselves and their loved one in a more manageable way, she said. "You are not looking at planning the next 10 years," she said. "Instead, think of three months. … Try to plan things in baby steps."
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