It’s an unfortunate paradox: Family members who devote countless hours to caring for a loved one may wind up becoming so worn down — physically, mentally and emotionally — that they may need care themselves.
Pamela D. Wilson, a leading expert in the caregiving industry, addresses this problem in her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes®. Caregiving can become such an overwhelming burden that family caregivers may become susceptible to what Wilson calls “compassion fatigue.” Symptoms of compassion fatigue include a sense of hopelessness, stress, anxiety, sleeplessness, and a persistent negative attitude. Another term used to describe this state is “caregiver burnout.”
Those who experience compassion fatigue or caregiver burnout often feel consumed by guilt. “We feel guilty that we can’t do it all, but the reality is that we cannot do it all,” says Wilson, a Lakewood, Co.-based care navigator who has helped thousands of family members and professional caregivers with the challenges related to healthcare and aging.
Wilson observes that adult children are often thrust into the role of caregiver out of necessity — with little or no beforehand discussion. “So many times, caregiving comes about by what I call ‘implied consent.’ You agree to pick up your parent’s medication and then do their grocery shopping, and all of a sudden, caregiving becomes this 10-hour a week job, then 20 hours and then 30 hours. The caregiver is left wondering, ‘How did I get myself into this?’ ”
The Burden of Caregiving
In her book, Wilson uses a well-known term — “caregiver burden” — to describe the negative impacts on physical and mental health that caregivers may experience, including more frequent episodes of anxiety and depression. In some cases, the burden of caregiving can break up marriages or jeopardize caregiver jobs.
“What you see in the research is that caregivers may become more physically, emotionally and mentally sick than the person they’re caring for,” Wilson says. “If you’re the main caregiver and something happens to you, who’s going to take care of your loved one? Somehow you have to set boundaries and say, ‘Okay, I have to go get my own medical care. I need to make sure that I’m taken care of.’ Because if you don’t, then you’re going to end up being a care recipient yourself instead of a caregiver.”
In some cases, an illness such as Parkinson’s disease or dementia can cause the care recipient to lash out at the family caregiver, saying hurtful things that add to the emotional toll. “It’s very difficult, when you’re a family member, to put that into perspective and say, ‘This is not my mom or dad yelling at me. It’s this horrible brain disease that is making them do this.’ And yet, as family members, we take it personally,” Wilson says. “It’s this cycle of guilt and anger and love and hate, and the caregiver gets overwhelmed to the point of exhaustion.”
Taking a Break
To maintain a healthy lifestyle, it’s important for caregivers to occasionally step away from their caregiving situations. As Wilson explains it, “It’s a logical point to say, ‘I can’t do this. I need to take a break, I need to sleep well, eat well, exercise, maintain my social relationships, so that I can continue being a caregiver and I don’t hate my loved one for what this is doing to me.'”
Maintaining social relationships is particularly helpful in alleviating caregiver stress and depression. “Even just calling a friend or going out with someone for a cup of coffee is extremely important to a caregiver’s wellbeing,” Wilson says. “Take a day off. Go to a movie. Do something to get your mind off your caregiving situation for a while.”
Who fills in for the family caregiver when he or she is taking a break? Wilson reports there are several options, including professional in-home caregivers and adult day programs. The latter, which can be paid for privately or even through Medicaid, is the less expensive of the two options. “Most adult day programs are in the range of about $70 per day,” Wilson reports. “That’s what you would pay for about three hours of in-home care, whereas you can have up to 10 or 12 hours in a day program for the same amount.”
For the daily rate, adult day programs offer participants socialization activities as well as providing meals and help with medication. “It’s somebody else to watch over your loved one either one day a week, or even five days a week, to give you a break when needed,” Wilson says. “A lot of caregivers want to keep their loved one in the home, which is great if they want to be there, but there’s also a degree of isolation, which is negative for the caregiver and for the care recipient. An adult day program is a great way to get that socialization for the care recipient while allowing the caregiver the opportunity to go out and socialize as well.” Caregiver support groups might also provide vital socialization for both, as some offer services for the care recipients while the caregivers meet.
If a longer break from caregiving is needed, Wilson suggests checking into the respite programs offered by many assisted living communities. “Many communities will allow you to do a week or a month of respite, and they’re not requiring you to agree to move someone in.”
To further relieve the burden of caregiving, Wilson urges family members to explore the resources in their community. She recommends seeking out the services of care navigators, such as herself, by doing an online search for the words “care navigator” or “care advocate.” Also check out the resources available from support groups such as the Alzheimer’s Association and the American Cancer Society.
Establishing a Positive Relationship
By taking a break from caregiving and setting boundaries around how much care they are willing to provide, family caregivers are in a better position to establish a more positive, meaningful relationship with their loved one rather than just focusing on the mundane tasks associated with caregiving.
“Anyone can clean a toilet, change the bed or make a meal,” Wilson says. “But not just anyone can reminisce with a parent about childhood years, write down favorite recipes or document family history,” Wilson says.
It’s important to maintain perspective while caregiving, specifically by keeping in mind that the loved one who currently requires so much care will someday be gone from your life. “If you can focus on your relationship rather than on a list of all the things you have to do, it can help get rid of any anger and frustration you may be feeling,” Wilson concludes.
CHIME IN: Have you experienced (or are currently experiencing) compassion fatigue or caregiver burnout? How did you get the break and refreshment you needed?