Chapter VI:

Caring for Yourself,

the Caregiver

Part VI:    Caring for Yourself

It’s not the load that breaks you down. It’s the way you carry it.

—Lena Horne, singer, actress, civil right activist


We all need to follow this instruction of self-care at each juncture of the caregiving journey, especially when we’re facing stressful situations and challenges. Many of us can recall the often-cited instructions given to airline passengers in case the cabin pressure drops: Put your own oxygen mask on first— before you try to help your children. You can’t take good care of your loved one if you’re not taking good care of yourself. 

Beyond taking care of someone’s physical needs, a caregiver’s job may include multiple roles as medical coordinator, patient advocate, personal assistant, bookkeeper, financial manager, housekeeper, shopper and driver. Not only must caregivers learn how to manage these roles but find the appropriate boundaries between their role as caregiver and their roles as a spouse, adult child, or friend. Effective care management often means “care-partnering,” sharing family responsibilities with financial advisers, elder care lawyers, social service providers and health-care professionals. Juggling such caregiving while also taking care of children and holding down a job frequently leaves caregivers reeling from stress, leading to fatigue and sometimes more adverse health conditions.

And what adds to this emotional toll is a feeling of “invisibility” that many family caregivers say they experience. They become so immersed in the role of caring for loved ones that their own lives become invisible—not only to themselves, but to society overall.

During my 20-year caregiving saga, I faced many of these challenges, and along with my brothers, felt the daily stress that accelerated as Mom’s health declined. It was hard to maintain my emotional balance as my family faced critical transition points in our mother’s care needs. I had to come to terms with a cauldron of feelings:

  • Sadness and grief. Witnessing the decline of a parent or spouse can be difficult to watch, especially as you try to hold on to vivid memories of the vital person they once were.
  • Anxiety and fear. You question what the future holds, wondering, “Where can I get help?” “Can we afford all these caregiving needs? “What will I feel when I lose my loved one? “
  • Anger. You may feel angry toward your loved one for “putting you” in the role of caregiver—or angry toward other family members for not helping out as much as you think they should.
  • Guilt. You may feel guilty for an assortment of reasons—for example, that you’re “not doing enough” to make your loved ones happier or to improve their situation. Or maybe you feel guilty for neglecting your own children and spouse—or for enjoying your time away from caregiving responsibilities.

Like many other caregivers, I had to readapt my work schedule; create a more flexible home life with my family; rethink my exercise routines and social activities; and be prepared to realign plans at a moment’s notice.

My experiences were far from unique. A recent study found that:

  • Half of all caregivers say the burden of caregiving is “frequently” or “sometimes” too much to handle.
  • More than half (55%) of caregivers feel isolated.
  • More than one in five (22%) have been told by a health professional in the last 12 months that they suffer from depression, nearly twice the rate in the general population.
  • Overall, 39% of caregivers report needing respite care within the past 12 months—but only half that number say they’ve received it.

Caregiving can take a physical toll, such as back injuries from constantly lifting a frail senior out of bed or a chair. And new research has linked caregiver stress to the weakening of a person’s immune system and depression.

What, then, should caregivers do to make sure they’re taking care of themselves?

First, watch for early warning signs of burnout. Among the symptoms, experts say, are:

  • chronic fatigue; constantly feeling sick or run down
  • persistent irritability or depression
  • sleeplessness, even if you sleep through the night
  • difficulty concentrating
  • frequent headaches or gastrointestinal problems
  • weight loss or gain
  • loss of interest in normally pleasurable activities
  • neglecting your own needs

One helpful resource is The Caregiver Health Self-Assessment Questionnaire.

Devised by the American Medical Association, this questionnaire helps analyze your own behavior and health risks and, with your physician’s help, you can make decisions that will benefit you and your care recipient. You can download the questionnaire from the American Geriatrics Society’s Health in Aging Foundation's website:


Second, here is a checklist of self-care guidelines to help you to be an effective caregiver for the long haul:

  • Be realistic about your expectations. Take things one day at a time and recognize that you can’t do everything—nobody can. Accept changes as they occur. And establish your own limits so your loved ones and siblings won’t have unrealistic expectations, either.
  • If you’re working, talk to your supervisors. Letting your boss know about your situation is usually a good idea; it helps them understand your desire to remain a valued and conscientious employee while balancing work and family needs.
  • At the same time, separate your office work from caregiving responsibilities, using your breaks as much as possible to address outside issues. Keep your professional identity—your work can be a respite from caregiving and boost your self-esteem.
  • Consider potential options with your employer, such as flexible work hours, working split shifts, job-sharing, adopting a telecommuting schedule, or scaling back to a part-time position. (Be sure to adjust your budget to accommodate reduced income.)
  • if your employer offers time off specifically for caregiving, you might consider taking a leave—or if necessary, a short-term arrangement during an emergency or acute caregiving time.
  • If you’re nearing retirement yourself, ask about possible phased retirement options, where you’d work part time for a period before full retirement.
  • Take care of your own physical health. 
  • Make sure you maintain a good night’s sleep as a priority. Don’t compromise; lack of sleep deprives us of our ability to cope.
  • Eat properly—three balanced meals a day.
  • Get out and exercise regularly.
  • If your health needs change, don’t ignore them; see a doctor.
  • Stay mentally active and become “stress-hardy.” While it’s important to keep your mind active in your later years, strive to be relatively stress-free.
  • Stress is among the leading causes of age-related disease, so your ability to adopt “stress busters”—activities like yoga or meditation—will not only help you feel better and do well as a caregiver, but live longer. Practices like meditation or yoga may help you reduce blood pressure, anxiety and stress, depression and insomnia.
  • Watch out for signs of anxiety and depression and don’t delay getting help from mental health professionals if you need it.
  • An excellent resource for dealing with feelings of grief and loss while still caring for an elderly loved one is the work of Pauline Boss, a ground-breaking researcher and educator whose most best-known book is Ambiguous Loss: Learning to Live with Unresolved Grief.
  • Allow others to help with caregiving responsibilities. Create a list of tasks or responsibilities and widen the caregiving circle, identifying family members and friends who could help.
  • When people offer to help, take them up on it. The next time someone asks, hand them a list of what needs to be done and ask them if they could do something on that list.
  • Consider assistance with tasks in your personal life, like picking up groceries, which can free you up to go to work or provide caregiving that only you can do.
  • Find support from professionals. Many issues will arise that require additional information, expertise, and resources, so don’t hesitate to reach out to organizations and professionals with experience in caring for older people.
  • Be open to using new technologies. Telehealth and devices that can help you care for your loved one.
  • Consider working with a patient advocate who can help you learn how to communicate effectively with health providers.
  • Share thoughts, feelings and questions. You are not alone. Talk informally with trusted friends, perhaps a member of your religious community.
  • Consider joining a caregiver support group (either in person or virtual) that can help you relieve stress and anxiety, exchange ideas or provide useful tips. (See "Caring for the Caregiver Resources" below)
  • Make Time for Yourself. You can’t be a good caregiver 24/7, so take time out to indulge yourself in something enjoyable every day, even if only for a few minutes.
  • Take breaks every day. Try going for a walk, making a cup of tea or calling a friend.

Finally, give yourself credit for doing the best you can, every day. Even when you’re exhausted, remember why you’re caregiving—it is a love, a privilege and responsibility to care for those who cared for you, doing the right thing to give back.


Caregiver support groups offer a safe, confidential, and comfortable place for caregivers to talk about the experiences of caregiving, share resources and ideas, and help care for each other. There are dozens of support groups throughout Nassau and Suffolk counties, sponsored by town and local government, social service agencies, adult day care programs, houses of worship, hospitals, nursing homes, libraries, senior centers, “Y’s,” and other non-profit organizations. While some groups address general caregiving issues, others are focused on caring for loved ones with specific medical conditions, such as cancer, Parkinson’s disease, or ALS (Lou Gehrig’s disease). And because managing the daily needs of dementia patients can be especially stressful for family caregivers, many organizations have created caregiver support groups specifically focused on their needs.

Groups are usually free and hold regular meetings, but there are different formats to consider. Groups are frequently led by a trained facilitator who may be a health-care professional, social worker, psychologist or clergy member. Others may be peer-led groups. Whatever the format, these groups can be invaluable emotional outlet for caregivers to share their stories and find badly needed help—I’ve seen it first-hand.

At the same time, I also know that joining a group may not be easy. It often takes considerable planning to carve out time from our busy work and family schedules, and many caregivers (me included) can feel self-conscious speaking about deeply personal issues in front of strangers. But keep an open mind. Look for a group that you think you’ll be comfortable with—and don’t feel obligated to stay if it doesn’t fit.

Here are some resources for Caregiver Support

Here are resources specializing in support for families caring for loved ones with dementia


Respite care is short-term care provided by a trained companion to give family caregivers temporary relief from their responsibilities. This allows caregivers to have a short break so that they can do tasks outside the home, while feeling that their loved one is safe.

Respite services are provided in a senior’s home or in a supervised environment, and may include companionship, meals, minimal assistance with personal care and medication reminders. Counties and other organizations have programs that provide respite care at reasonable costs.

Many social model adult day city programs, home care agencies and hospitals provide respite for caregivers. Assisted living facilities frequently offer respite care for families who may need a place for their loved one to stay for an extended period. (Medicare does not pay for respite care. Private pay, and at some facilities, Medicaid, are accepted.)

Here are some resources for respite services


As I mentioned earlier, family caregiving doesn’t end with the death of a loved one. There are a host of pragmatic tasks that need attending after the funeral, settling the estate, tying up financial, legal, and household matters. At the same time, the need to care for yourself also continues, and while your emotional challenges may shift, they are no less critical in your caregiving journey.

The foremost challenge is, how do we grieve when our loved ones are gone?

First, do not suppress your grief. If you never expressed tears, you wouldn’t know how much you loved the person. Remember the often-cited quote from English writer and director Jamie Anderson: “Grief is just love with no place to go.”

A confluence of overwhelming emotions often surfaces after the death of a loved one. Sadness and grief, of course—and paradoxically, a sense of relief that your caregiving duties are over.

The loss of any loved one is painful for a caregiver, but bereavement experts note that the loss of a spouse or partner is often the greatest emotional loss people experience in their life. A surviving caregiver may feel guilty for being the one still alive—and angry at their partner for “leaving them behind.” After years of being a couple, being alone can leave the surviving spouse feeling scared for the future and concerned about their day-to-day safety. Many couples traditionally divide up household chores, like doing the bills, making meals, taking care of yard work and car repairs, so it will take time to rethink how to manage these tasks.

What can caregivers do now to continue taking care of themselves—whether they’ve lost a spouse or a parent they were caring for?

“You need to figure out how to move on,” says Lisa Strahs-Lorenc, a specialist in bereavement and grief counseling who lost her husband to pancreatic cancer. “Our loved ones would want us to live our lives. You need to create a new chapter and discover your own journey.”

If you’re a widowed caregiver, focus on taking small steps. Get up and get dressed; make a plan to use your time and figure out what is best for you.  Having lost your soulmate, you may wonder, “Will I ever be happy again?”  But don’t look at happiness as the goal, says Lisa, the author of Pancreatic Cancer: Families Move On. “Life goes on in ways that may surprise you. There is life now.”

At the same time, experts say, wait before making any big decisions, like moving or changing jobs. As you get stronger, revisit your legal and financial affairs—a new will, advance directives, and a durable power of attorney.

If you’re the adult child of a surviving caregiver, recognize that your own role as a caregiver may change significantly, beginning with this period of transition for your loved one. Your first challenge is to make sure that your widowed parent is taking care of their basic daily needs.

Are they exercising regularly, getting enough sleep, eating right? Widowed people may lose interest in cooking and eating. Sometimes eating at home alone feels too quiet, so perhaps suggest turning on the radio or TV during meals or having lunch with friends.

How do they plan to stay active? Are they staying in touch with family and friends, in person or online, who also may be grieving and welcome a chance to share memories? And while it may be initially difficult to socialize with people who were “couple friends” with you and your spouse, you can still embrace friends who are there for you—and make new friends.

There are many other ways to encourage your loved one to continue being socially active (see "Promoting Social Engagement—with some caution" from Chapter II).

  • Visit the local library.
  • Volunteer for a local organization or group.
  • Take an exercise class.
  • Join a singing group.
  • Take a class at a senior center, college or community center.
  • Visit with members of their religious community.
  • Offer to watch grandchildren.
  • Adopt a pet.

Remind your loved one that they don’t have to be alone; it’s OK to ask for help. They can join a bereavement support group, often offered through hospice programs such as the Northwell Health Hospice Care Network ( or VNS Health ( They can also seek professional help from a grief counselor or therapist.

“Sometimes after losing a loved one, families disconnect and don't grieve together as they should,” says end-of-life doula Susan Capurso, who offers families personalized grief ceremonies and life celebrations of their loved ones ( “It takes time for the whole family to adjust. Open, honest communication is important.”

Susan also has created a “Healing Garden Bowl” (, a unique gift that friends and family members can offer to caregivers—a customized collection of stones, each with a special message. “This is a heartfelt message that goes beyond the individual messages on the stones,” says Susan. “It's a therapeutic tool to help them heal and find peace through their journey.”

Finally, find ways to celebrate your loved one for who they were—and who they still are today. There are lots of ways to keep memories alive, including online memorial websites like The Eternal Portal (, where you can post virtual candles and flowers. Families can create special rituals and ceremonies, like planting a tree in their loved ones’ honor.

 “Celebrate your lost loved one, let them live inside you, for yourself and for future generations,” says Lisa Strahs-Lorenc. “Memories never end. Memories never die.”