Chapter VI:
Caring for Yourself,
the Caregiver
It’s not the load that breaks you down. It’s the way you carry it.
—Lena Horne, singer, actress, civil right activist
THE DEMANDS OF CAREGIVING:
A LIFE-JUGGLING ACT
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:
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:
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:
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:
(https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-interactive).
Second, here is a checklist of self-care guidelines to help you to be an effective caregiver for the long haul:
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.
LOCAL CAREGIVER SUPPORT SERVICES
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.
RESPITE CARE SERVICES
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.)
CARING FOR YOURSELF
AFTER YOUR LOVED ONE IS GONE
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).
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 (www.hospicecarenetwork.org/hospice-services/) or VNS Health (https://www.vnshealth.org/hospice-care/). 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 (https://susancapurso.com/). “It takes time for the whole family to adjust. Open, honest communication is important.”
Susan also has created a “Healing Garden Bowl” (www.HealingGardenBowl.com), 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 (www.Theeternalportal.com), 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.”