For a full year following my parents' deaths -- five weeks apart, in a nursing home 1,200 miles away -- I fell prey to clinical depression. Although I did everything I could to give them the best possible care, I never budgeted time for myself. I didn't realize that by ignoring my physical and mental health during two years of intensive caregiving, I was setting myself up for a breakdown that would take another two years to recover from.
According to the Family Caregiver Alliance in San Francisco, more caregivers are hospitalized due to burnout and stress-related illness than due to worsening medical conditions. The reason is clear: Caregivers tend to put themselves last.
Despite its many rewards, including sharing love and developing inner strengths, caregiving can be overwhelming. Especially when caregivers expected to do this work for the short term and find themselves in for the long haul, self-care is often left out of the equation.
Rx for your mental health
Just as airline passengers are admonished to put on their own oxygen masks before helping others, caregivers must look after themselves first. Signs of overload include feelings of isolation, stress, guilt, depression, helplessness, anger, and resentment.
"Even the most dedicated workers need an occasional vacation, and this is especially true of caregivers," says D. Helen Moore, MD, a gerontologist at the University of South Florida. "A burned-out caregiver cannot provide quality care."
Geriatric social worker Suzanne Alexander offers these tips to relieve the stresses of caregiving in these predictable situations:
- Overload. When I first began caring for my parents, there were only a few personal care tasks to do. Gradually, I took on more and more, and became responsible not just for their meals and baths but also for their home care, housing modifications, and legal and financial affairs. I became overwhelmed without realizing what was happening.
Alexander recommends periodically taking a deep breath, stepping back, and assessing what your loved one's needs are today and will be in the future. Make a list of tasks and priorities, ranked according to what you need to do personally and what you can delegate. "Maybe it's important for you to take Mom shopping, but it's not so important who takes her to the senior center," she says.
- No time for yourself. Juggling the demands of parent care, a full-time job with a long commute, and my own marriage and housekeeping, I never felt I could take time for myself. Lost in the role of caregiver, I became unbalanced and lost my health.
Alexander says, "Make a list of what your needs are, starting with the personal. Protect the time you have with your spouse and children. If you get on a treadmill, it's easy to find every minute scheduled, [with] nothing left for you. You need to find something that feeds you -- a walk, reading, solitude, dancing, exercise -- and schedule that in."
- Trying to do it all. Because I had been entrusted with my parents' care, I didn't believe anyone else should take on the tasks. I truly believed that no one else could care for my parents as well as I could. I was wrong: They were well-cared for by others, but in a different way.
"Learn to accept and ask for help, especially from family, friends, and community resources," Alexander says. "If your siblings aren't pitching in, call a family meeting and talk about how you'd like to delegate tasks."
- Isolating yourself. As the months of caregiving proceeded, I became more withdrawn. I didn't feel I was ever doing enough for my parents, because I was so overwhelmed by taking on everything myself.
"The American character is 'I can do it by myself,'" Alexander says. "If people offer help, let them do so -- even having someone bring over a casserole one night. Offer specific things they can do, whether it's vacuuming, cooking, or watching your loved one so you can have some time to yourself."
One long-time caregiver offers this advice: If you find you urgently need human contact, invite over two friends or relatives who've volunteered to help at the same time. One can cook and look after your loved one while you and your other companion talk, take a walk, and savor your freedom -- then take a walk with your other friend when you come back.
- Not setting limits. Whatever was asked of me, I complied. I never felt I could say "no" without being perceived as selfish or resentful. The fact was, my parents never felt this way about me: It was something I projected onto them myself, and it was false.
Alexander advises caregivers to learn to say "no" in cases where they used to say "yes," in order to protect their time and energy. (You may not want to keep writing for that weekly newsletter, for example.) Set reasonable expectations: Don't try to be all things to all people. You can say no without putting someone out of your heart; it's not selfish to take care of yourself in order to give the best possible care to someone else.
- Lack of a support network. Always being reactive rather than proactive, I was not aware of community resources that could help. Because I didn't know any other caregivers, either, I felt frustrated and helpless.
Alexander says, "Find support groups -- informal or formal -- where you can express feelings that you are uncomfortable with, such as frustration and resentment." For example, you may want to find Internet bulletin boards on caregiving and online caregiver "buddies" to connect with other people in your situation. "Being able to express your anger, loneliness, and occasional despair will help you cope."
- Poor health. My lack of self-care became a vicious cycle: Too tired to exercise, I stopped altogether. Then I couldn't sleep well, which made me anxious. To calm down, I had a shot of vodka every night, and then didn't feel like cooking or eating.
"Watch out for destructive ways of coping such as drinking too much, misusing medication, or overeating." Alexander advises. "Seek medical advice or treatment if you are experiencing changes in your health such as blurred vision, stomach ailments, or high blood pressure."
- No social activities. Because I felt exhausted and isolated, and because my peers couldn't relate to what I was going through, I stopped socializing. That only increased my depression and hopelessness.
Says Alexander, "Try -- no matter how difficult it is -- to have a life outside your caregiving duties. Take a caregiver 'vacation.' Use respite care to take breaks for some soul-nourishing activities such as an evening out, quiet time to read and write letters or e-mail, or a weekend get-away. (Respite can mean short-term care in your home or at hospitals, senior day care, or residential care facilities.) Don't feel you need to handle everything alone."
- No time out. Because I never stopped working or thinking about my parents' needs, I never took a break from my responsibilities. I completely forgot how to relax, which only deepened my tensions.
If you find yourself continually tense and irritable, experts advise using relaxation techniques such as deep breathing exercises, music, nature walks, massage, visualization, and going to the gym. Going to a gym or playing golf can do worlds of good. Studies show that a positive outlook can do more for health than we realize.
- Work/family imbalance. My employer didn't have a family-friendly policy, so I never felt comfortable expressing my need for flexible work arrangements or time off. That pressure increased my health problems and resentment.
Alexander advises finding out if your employer has an employee assistance program (EAP) you can use to find out about counseling and other support programs that may be in your benefit package.
Some federal and state laws offer employees assistance in maintaining their caregiving responsibilities. You may qualify for benefits under the Family and Medical Leave Act (FMLA). FMLA allows employees to take up to 12 weeks of unpaid leave to care for an ill family member. Some states also offer paid leave for caregivers. For instance, in California, working caregivers may receive 55 percent of their wages for up to six weeks of leave per year.
But what if you reach the point where you feel you just can't give any more? In this case, experts suggest, you may need to hire help from a home health agency. Or you may need to consider placing your loved one in residential care -- especially if you cannot find adequate or affordable in-home care services to replace your own care. In the most desperate situations, you may want to speak with a family or grief counselor or hire a care manager to organize and monitor your loved one's care. Good self-care is largely a matter of awareness: Never lose sight of the importance of putting your own health first. Experts advise you to look at the situation realistically and to be forgiving and patient with yourself.
"We caregivers often struggle alone for years thinking this is just part of our responsibility before we reach out for help," says Suzanne Mintz, former president of the National Family Caregivers Association, whose survey found that most caregivers wait four to five years before seeking support.
"We remind caregivers that your whole life is not caregiving," Mintz cautions. "You are separate from the person with the illness. You choose to be there because of your love or sense of duty, but as an individual, you have a right to wellness and to love yourself. When you have to be a caregiver, you have two choices: You can fall apart or you can find inner strength."
In my case, regaining my health took an understanding that what I had done for my parents was good enough: That the measure of love and devotion I gave was more important than finding the right home health agency. Handling these crises gave me the inner strength to understand that every act of kindness counts, and that we're never truly alone.
Family Caregiver Alliance
Has an online support group for caregivers of brain-impaired adults.
Has a Support Center at which you can post your current struggle, journal pages, or a memory of your loved one.
Offers brochures and fact-sheets on issues including self-care and bereavement.
National Family Caregivers Association
Offers brochures on everything from self-care to bereavement.
Dr. Helen More. The Seven Secrets of Successful Caregiving. University of South Florida, Tampa Fl.
Nabil Hagag. When Cancer Strikes: A Tribute to the Family Caregiver. Nova Science Publishers, Inc.: 287 pp.
Steve Reed. Pebbling the Walk: Surviving Cancer Care giving. Blue Heron Pub: 160 pp.
Joy Loverde. The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help. Times Books: 272 pp.
Chris Adamec, et al. The Unofficial Guide to Eldercare (The Unofficial Guide Series). Hungry Minds, Inc.
AARP. Caregiving in the United States. http://www.aarp.org/research/housing-mobility/caregiving/fs111_caregiving.html
Department of Labor. Federal vs. California Family and Medical Leave. http://www.dol.gov/esa/whd/state/fmla/ca.htm