Avoiding Caregiver Burnout
Are you a primary caregiver to a spouse, parent, grandchild or other loved one? If so, you may be at increased risk for significant health problems—a potential side effect of caregiving, especially when you try to take on too many stressful duties without help.
The demands of being a caregiver can take a toll on your health and well-being. That's because many caregivers shortchange their own needs. But you don't have to go it alone. Today, more resources are available to caregivers than ever before.
On the other hand, caregiving can be a rewarding experience if you have the right support, knowledge and self-care tactics to depend on.
Caregiving has been called the fastest growing unpaid profession in the United States. According to the Family Caregiver Alliance, more than 65.7 million Americans-29 percent of the U.S. adult population—provide care to a family member, friend or loved one
who is ill, disabled or aged. For many of these caregivers, their role may include
a variety of challenging tasks, including bathing the person they're caring for, preparing meals, escorting him or her to doctor's visits and managing medicines.
Many caregivers enjoy the close company and forge deeper relationships with the family members they're responsible for. But it's a hard, sometimes overwhelming, job.
The average unpaid, or informal, caregiver is a 46-year-old female with a full- or part-time job who spends about 20 hours a week caring for her mother. But of those caring for a loved one older than 65, the average age is 63—onethird of whom are in poor health themselves. A 2007 Swedish study reported that 18 percent of people older than 75 were involved in the care of others.
According to a Gallup survey, 72 percent of caregivers provide for a parent, a step-parent or a mother- or father-in-law. The same poll found 67 percent cared for someone older than 75.
Among the chronic conditions for which people may require care are cancer, stroke, multiple sclerosis, arthritis, diabetes and Parkinson's disease. And almost 15 million people care for someone with a form of dementia, such as Alzheimer's disease—a condition that contributes to some of the highest and most exhausting demands placed on caregivers.
The demands of caregiving
Not surprisingly, the stress and strain of caregiving can take a heavy toll—both physically and emotionally. Many caregivers are so busy caring for others that they often neglect their own emotional and physical health. Studies have indicated that caregivers may be at a greater risk for depression and chronic illness, including high blood pressure, cardiovascular disease and an impaired immune system, than noncaregivers. In one study, caregivers 66 and older had a 63 percent higher mortality rate than noncaregivers their age.
The mental toll is often the greatest burden. An estimated 30 to 40 percent of dementia caregivers experience depression and high levels of stress. They're also more likely to require antidepressants, anti-anxiety drugs and similar medications than the general population. Caught up by competing demands of time and energy, by perceptions of burden and by fears for the future, virtually all caregivers at some time suffer from loneliness, exhaustion, anxiety and sadness. If these problems are left unaddressed and not identified by a family doctor, severe depression is almost inevitable. Therefore, a caregiver's mental and physical health has to be a top priority.
Neglecting yourself may in fact hurt the person you're trying to help. Research suggests that the well-being of both the caregiver and the person being cared for are deeply intertwined. If you can get help relieving your caregiving burden, you may be able to provide more quality care to a loved one with Alzheimer's disease, for example, which may lead to less troubling behaviors typical of someone with dementia. Helping your loved one improve his or her self-care may in turn help ease some of your physical and emotional stress.
10 signs of caregiver stress
You may at times feel overwhelmed by the emotional strains and physical demands of trying to balance care-giving with work and family. Even healthy individuals have trouble coping with certain problems. And knowing that your loved one has a degenerative disease like Alzheimer's that won't get better can contribute even more to your mental burden.
Below are some signs and symptoms of caregiver stress:
1. Denial about the disease and its impact on the person affected
2. Anger toward the person you're caring for
3. Social withdrawal, not wanting to stay in touch with friends or participate in activities you once enjoyed
4. Anxiety about facing another day and what the future holds
5. Depression, feelings of sadness and hopelessness
6. Exhaustion and feeling that you barely have the energy to complete daily tasks
7. Sleeplessness, trouble falling asleep, waking repeatedly at night, having nightmares and stressful dreams
8. Irritability or emotional overreactions, such as getting upset or crying over minor incidents
9. Lack of concentration, trouble focusing and completing complex tasks
10. Health problems, such as backaches, headaches, high blood pressure, weight loss or weight gain and getting sick more often (colds, flu)
Sure signs of burnout
Once you become emotionally depleted, you may shortchange your own needs, which can lead to burnout. One component of the pain of true burnout is emotional exhaustion, a feeling of being overextended and depleted because you've given so much and received so little in return. You may, find yourself saying things like, "I have no more to give" Serious burnout may require professional help.
The following signs point to caregiver burnout:
1. Excessive use of alcohol, medications or sleeping pills
2. Appetite changes
3. Depression, feelings of hopelessness and alienation
4. Trouble falling or staying asleep
5. Difficulty concentrating
6. Frustration and anger toward the person you're caring for, resulting in neglect or rough treatment
7. Thoughts of suicide
Burnout can affect your ability to care for your loved one. If you're experiencing any of these signs, consider getting professional help. (If you have thoughts of suicide, don't hesitate—seek help immediately.) You may at first feel guilty about asking for help. But you owe it to both yourself and the person you're caring for to get treatment. You'll feel better, and the quality of care you can provide will improve.
Understanding your emotions
People have different ways of handling their emotions. Some will experience each feeling intensely; others won't. Sometimes people think that certain feelings are unacceptable—that they shouldn't have such feelings or that no one could possibly understand them. Sometimes they feel alone with their feelings.
You might have mixed feelings. You might both love and dislike the person you're caring for, or want to keep a family member at home and, at the same time, put him or her in a nursing home. Having mixed feelings might not seem logical, but it's certainly common, particularly with caregivers of people with dementia.
There's no right or wrong way to handle your emotions. What's important is recognizing how you feel and having some understanding of why you feel the way you do, because your feelings affect your judgment.
Self-care can't be relegated to the bottom of your list of priorities. For some caregivers, a few simple steps can help preserve well-being. If you're suffering from caregiver stress, try these tips to prevent your stress from becoming burnout:
1. Ask for help.
Avoid being the sole caregiver. This may mean asking adult children or siblings to help with groceries or car rides. Family and friends, members or your place of worship, governmental agencies such as your city or state Area Agency on Aging Office, and local volunteer organizations are all potential sources of aid and support for caregivers. Some hospitals and support organizations couple new caregivers with experienced caregivers or social workers. Together, they help you coordinate assistance from family and friends.
2. Let it all out.
Talk to a family member, friend, clergy or counselor about what you're experiencing or seek a local support group. Research shows that those with emotional outlets and the support of family or friends report less stress and fewer health ailments than those without such connections.
3. Get up to speed.
Specialized health organizations such as the Alzheimer's Association or the American Cancer Society can provide detailed information about the disease your loved one is facing. These organizations can also help you get in touch with support groups in your area.
4. Remember your health needs.
Remembering your own doctor appointments and when to take your medicine can be difficult enough without having to juggle someone else's schedule as well. Keeping a calendar of your appointments, writing yourself reminders or take your medicine can be cues to help you stay on top of your health issues.
5. Get moving.
Physical activity is good for the body and the brain. Endorphins, released in the brain during exercise, promote feelings of well-being. Getting 30 minutes of physical activity, such as walking, on all or most days of the week, along with regular, well-balanced meals high in vegetables, fruits and whole grains and low in fat will help you stay fit and avoid excessive weight gain.
6. Enjoy a hobby.
Carve out some time each week to do something you enjoy, such as reading a book, watching a movie or gardening. Ir you can, take periodic breaks from caregiving—go on a short vacation. This may mean asking other family members to step in for a few days or contacting a respite care provider to come to the house to assist your loved one. Making time for yourself is critical; one afternoon a week may be all you need.
Seek professional help
If you're not sure what you need or feel overwhelmed by the logistics of caring for someone at home, talk with your doctor. He or she can recommend local support services or refer you to a social worker, a nurse or an occupational therapist who can evaluate the patient and his or her residence and make recommendations for in-home medical care or safety renovations. Insurance may cover the cost of an in-home assessment.
Visiting nurses and home-health aides who are paid by the hour are the most common source of in-home medical help. The Eldercare Locator (www.eldercare.gov), a service administered in part by the federal Administration on Aging, provides lists of local qualified home-healthcare companies. Rates and responsibilities vary widely. If you hire in-home medical help, take advantage of your access to professional know-how. Most home-health aides can teach you helpful skills, like how to change a catheter drainage bag, give a sponge bath or change bandages.
Short-term respite care provides programs that send a healthcare professional to your home for temporary care of your loved one. Short-term stays in an assisted-living facility or nursing home can also be arranged.
Adult daycare is another option and is often less expensive than in-home help. Some facilities offer organized activities for adults and have medical staff on site. However, complaints about neglect, theft and mental and physical abuse have been reported, so research a facility carefully before you commit to it. Check the center with the Better Business Bureau and ask the center for a list of references.
If you can, talk to families you meet in the parking lot or during a visit to the site, stop by the center at different times of the day and watch how the staff interact with participants.
Taking advantage of the whole range of help and community support available can significantly lighten your emotional load. Caregivers whose own health needs are met and who get the support they need do a better job for themselves and the people they care for.
Despite the challenges of caregiving, research finds that between one-third and one-half of caregivers are doing quite well emotionally. In addition, many caregivers report they're rewarded by the whole process. They also readily admit that they feel they've been able to "give something back" to a loved one who provided for them and believe they're fulfilling an important familial duty.
The positive effects of caregiving: What the studies say
Surprisingly, the few studies that have followed caregivers over the long term have reported that caregivers tend to feel better emotionally over time. This finding suggests that many people have the resilience to tap into their innate psychological strengths and use external social and financial supports in times of difficulty to adapt to and overcome many problems.
Overall, studies investigating the health and life spans of caregivers have been conflicting. One study found that family caregivers who endure substantial life changes and chronic stressors suffer poor health and increased risk of premature death. Other studies suggest the opposite: Caregiving can preserve health and reduce risk of death. Reasons for the positive results vary, with researchers suggesting-that-healthier family members are more likely to take on the caregiving role, and that caregivers become more active when providing help and support to others.
The latest study to look at long-term caregiving, led by experts at Johns Hopkins and published online in October 2013 by the American Journal of Epidemiology, suggests certain subsets of informal caregivers may live slightly longer than noncaregivers with similar backgrounds. The researchers found an 18 percent reduced rate of death among the caregivers they studied over a six-year period: Caregivers lived nine months longer than noncaregivers.
The data for the review were taken from a large stroke study and limited to African-American and white caregivers mostly from the south, ages 45 and older. The data didn't specify the functional abilities of the care recipients, the type of care provided and whether caregivers were living with those they provided care for—all important factors that can affect a caregiver's physical and emotional response. Most caregivers reported low or moderate caregiving strain—a situation less likely to apply to caregivers with more chronic stressors as a result of caring for people with dementia and similar diseases.
Even so, certain factors contribute to caregiver resilience. According to the paper's authors, caregiving can have a positive effect when:
1. Caregiving is done willingly.
2. Caregiving is done at manageable levels, and highly stressful situations are avoided.
3. The individual being cared for can willingly express gratitude.
As the researchers point out, altruistic behavior, especially among caregivers who appear to willingly provide help to family members with relatively low levels of need, might improve health.
Where to turn: Recourses for caregivers
These organizations provide assistance and information for caregivers, such as education and advice, support groups, online communities, public policy, financial resources and help in finding services and programs for older adults and their families
Eldercare Locator: www.eldercare.gov
Family Caregiver Alliance: www.caregiver.org
National Alliance for Caregiving: www.caregiving.org
Lotsa Helping Hands: www.lotsahelpinghands.com
Next Step in Care: www.nextstepincare.org
Alzheimer's Association: www.alz.org .
National Association of Professional Geriatric Care Managers: www.caremanager.org
Caregiver Action Network: www.caregiveraction.org
Medicaid Program of All-Inclusive Care for the Elderly (PACE) www.cms.hhs.gov/PACE/LPPO.list.asp