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 intense years of caregiving, I was creating a breakdown that would take another two years to rectify.

According to the Family Caregiver Alliance in San Francisco, more people are hospitalized because of caregiver burnout than because of an exacerbation of 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 for caregivers who are expected to do this work for the short-term and find themselves giving long-term care, self-care can get lost in the equation.

Just as airline passengers are admonished to put on their own oxygen masks first, caregivers must look after themselves. 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 Susik, a gerontologist at the University of South Florida’s Suncoast Gerontology Center. “A burned-out caregiver cannot provide quality care.”

Geriatric social worker Suzanne Alexander offers the following tips to relieve the stresses of caregiving:

1)Overload. When I 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 in the future. Make a list of tasks and prioritize them according to what is important for you to be personally involved in 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.

2)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 imbalanced 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 and there’s nothing left for you. You need to find something that feeds you — a walk, reading, solitude, dancing, exercise — and schedule that in.”

3)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 believed that no one else could care for my parents as well as I did. I was wrong: They were well cared for, 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.

4)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 longtime caregiver offers this advice: If what you urgently need is 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.

5)Not setting limits. Whatever was asked of me, I complied. I never felt I could say “no” without being perceived as being selfish or resentful. The fact was, my parents never put this belief on me; it was something I did to myself, and it was false.

Alexander advises caregivers to learn to say “no” to things you used to say “yes” to in order to protect your 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 is not selfish to take care of yourself in order to give the best possible care to someone else.

6)Lack of a support network. Always being reactive rather than proactive, I was not aware of community resources who 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.” (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.”

7)Poor health. My lack of self-care became a vicious circle: 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, then didn’t feel like cooking or eating.

Says Alexander, “Watch out for destructive ways of coping such as drinking too much, misusing medication, or overeating. Seek medical advice or treatment if you are experiencing changes in your health such as blurred vision, stomach ailments or high blood pressure.”

8)No social activities. Because I felt fatigued 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.

Alexander advises, ‘Try-no matter how difficult – 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 email, 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.”

9)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.

Experts advise that if you find yourself continually tense and irritable, use relaxation techniques such as deep breathing exercises, music, nature walks, massage, and visualization. For men, 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.

10)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 only increased my health problems and resentment.

Alexander advises finding out if your employer has an employee assistance program (EAP) where you can inquire about counseling and other support programs that may be in your benefit package.

But what do you do if you feel you just can’t give anymore? 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 supplant 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 of the importance of putting your own health first. Experts advise you to be realistic about the situation as well as 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, president of the National Family Caregivers Association, whose 1999 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 your can find inner strength.”

In my case, regaining my health took an understanding that what I did 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. The courage and tenacity that I developed in handling crises gave me the inner strength to understand that every act of kindness counts, and that we are never truly alone.

Beth Witrogen McLeod


  • Beth Witrogen McLeod is an author, journalist, speaker and consultant on caregiving, end-of-life issues and renewal at midlife, especially for women. She is a double Pulitzer Prize nominee, and has won many national and regional awards for her work. She has written for Good Housekeeping, SELF, Family Circle, and The Wall Street Journal, among others. Her latest book is Caregiving: The Spiritual Journey of Love, Loss, and Renewal

    Her expertise grew out of personal experience caring for her parents who were simultaneously terminally ill 1,200 miles away. With a father dying of a rare form of cancer and a mother with Lou Gehrig's disease and dementia, McLeod learned firsthand about the traumas and blessings of this mid-life rite of passage. She turned her experiences into a passion for public service, first writing and producing an award-winning newspaper series, "The Caregivers," for The San Francisco Examiner in 1995. It was nominated for a Pulitzer Prize. She developed a weekly column for The Examiner that often appeared on the New York Times Syndicate Web site. Honors for the series included National Hospice Organization, Pew Charitable Trusts, American Legion Auxiliary, Society of Professional Journalists, and many regional and local social service organizations.

    Beth is an Empowering Caregivers featured expert: learn more about Beth