Debilitating illness or injury can bring life-changing role reversals for couples, parents and their children or siblings where one becomes the primary caregiver while the other is incapacitated or dependent for all basic needs, including giving medications, food/feeding, clothing, shelter, bathing, doctor’s appointments and exercise or therapy.
Caregivers, the unpaid and vital workforce in the healthcare spectrum must take care of their health and seek out, accept and demand the help as they take care of others. A decline in their health will compromise the caregiver’s ability to provide care.
The Centers for Disease Control estimates there were 53.4 million caregivers in the U.S. in 2004 who provide an estimated $257 to $389 billion worth of unpaid care each year. Caregivers who provided the most intense caregiving reported substantially poorer health than non-caregivers or those with modest caregiving responsibilities.
Studies have shown that caregivers are at increased risk for health problems, due to the stresses of providing for a dependent and sick loved one while carrying on his/her own personal responsibilities, which may include work, household chores, children and outside commitments. Stress can lead to elevated blood pressure, glucose levels and cortisol in the body, increasing the risk for hypertension, diabetes and obesity. Higher levels of depression are also reported among caregivers.
As the population ages, changes in the health care system and expansion of home care technology, the demand for caregivers is expected to grow. An estimate by the Department of Health and Human Services and assistant Secretary for Planning and Evaluation in 2003 estimated that the number of family caregivers will increase by 85 percent in the first 50 years of this century.
In St. Louis, caregiving is top priority for the Perry family. 63-year-old John Perry remains the rock of his family as his very special pebble, 58-year-old wife Madelyn, became his boulder following a stroke in 2007.
“It shook the foundation of our family but the good thing is it brought us all together. Just as he had been there for us, we all wanted to be there for him,” said Madelyn Alexander, his stepdaughter. “We kind of took turns to give my mom a break because when he came home, he needed around-the-clock care and could not be left alone.”
Perry’s caregiving team includes the two Madelyns and five other children and their spouses, but primarily it is his wife, who eventually quit her job to take care of him fulltime.
“They were showing me so much in the hospital that when he came home, it almost came automatic. They showed me how to give him a bath, get him in and out of there; how to clean him up; how to do his exercises,” Madelyn Perry said. “We had to have a physical therapist; an occupational therapist and a speech therapist come to the home for about six weeks.”
His recovery has been gradual and miraculous. He spent two weeks in the hospital and four weeks in rehab. The stroke affected both sides of his brain and he has regained some ability to talk and walk—with his wife at his side to for balance.
“The more I read about this particular stroke that he had and the things that could have happened and the things that may happen, that gets me more worried and I am constantly checking on it. I wake up during the night to make sure he is breathing. If he is too quiet, I go in and check in to make sure,” his wife explained. “I am forever looking at him…That’s the biggest thing – it scares me that he might have another stroke. If I could stop that, then I think I could sleep. Every once in a while, I may take something to help me go to sleep.”
In addition to little sleep, Perry admits the only exercise she gets right now is running up and down the steps. They used to get some exercise in the park and at one of their favorite stomping grounds – Sam’s Club.
“You know, Sam’s is big!” Perry said which made his wife burst into laughter. “She had me walk to the back of the store and we walked around those freezers and we opened all the freezers. I wanted to sit down.”
As she has fretted about her husband, John Perry was on “lock down,” for fear of falling. She wouldn’t let him answer the door or the phone and would stand outside the bathroom when he went in. Their five-year-old-granddaughter-turned-sentry, Madison, served as a lookout.
“She’s got the baby doing it too!” Perry mused. “She said, ‘Dad, are you supposed to be up there?’”
Perry said he tries to do some things for himself rather than bother his wife.
“Sometimes you get into trouble, too,” his wife quickly pointed out.
“A caregiver, you couldn’t ask for a better person,” he said.
Daughter Madelyn, who works for the American Heart Association, is profoundly aware of the importance of caregivers taking care of themselves.
“The one thing I am always on my mom about is taking care of herself first because she is the primary caregiver,” Alexander said. “We have a close-knit family and we told her, ‘in order to take care of him, you have to take care of you.’”
It took a while before it happened, but now when John Perry is resting, his wife does something pretty unusual for a caregiver – nothing. Instead of running to the grocery or washing dishes, she uses that time for herself.
“I give myself a luxury bath every once in a while when he takes his nap. I lie down on the couch and watch TV and do nothing,” Madelyn Perry said. “Every time he eats, I eat. I try to make him eat healthy—no salt and avoid the fatty stuff. Just about every now and then I may slip a little bacon and eggs in the morning, but I eat no pork and very little beef.”
She seasons her food with smoked turkey and bakes a lot more. Healthier food choices are important for both of them.
“She also has high blood pressure, so she makes sure that when she checks his blood pressure in the morning, she also checks her own,” Alexander said.
Perry’s steady recovery and regaining of movement has been going so well, it surprised his 85-year old cousin who was comparing illnesses with him at a recent family reunion.
“Cousin Laura asked, “‘Baby can you do the Huckabuck?’” and Perry said in amusement, “When I was well, I couldn’t do the Huckabuck!’”
