Excerpt from Jody Gastfriend’s “My Parent’s Keeper: The Guilt, Grief, Guesswork and Unexpected Gifts of Caregiving”
As caregivers, we may ignore advice to take care of ourselves, but we do so at our own peril. We each have to replenish our reserves of strength and compassion or else our well will run dry. Caregiver stress is real. It can result in illness, addiction, depression, and social isolation. According to the American Psychological Association, caregivers report significantly higher levels of stress than the general population and perceive themselves to be in poor health. They are more vulnerable to chronic health problems and physical injury. And they are less likely to sign up for a Pilates class at the gym, which they have no time to join. They are less inclined to seek preventive health measures at exactly the age when those measures can be life-saving.
It’s easy to run yourself ragged when you are a caregiver. It happens when you don’t consciously protect yourself from all the risks. The tightness in your chest, the frequent spats with your spouse, and the Ambien you pop to sleep through the night may be signs that something is amiss. When did you last say no to something you needed to do so you could say yes to something you wanted to do? It’s not easy when you are the one. The one to take your mother to the doctor, get the kids to soccer practice, shop, cook, pay bills, and manage to show up to work once in a while. That was me. To the casual observer, I looked like the poster child for a working mother and devoted daughter. I was frequently asked that annoying question, “How do you do it all?” “One day at a time,” I would answer with an offhand chuckle. But despite the upbeat façade, I was burned out. I was angry at my husband, who traveled for business, because he wasn’t around to help more. I tried to hide my stress at work because the concept of “work-life balance” had not been discovered yet. But most of all, I was frustrated with myself for trying to be all things to too many people. Somehow, I was going to have to lower the bar and let things go. There just wasn’t enough of me to go around.
Risks of Not Refueling
If you look up the term burnout in the Merriam-Webster dictionary, you will find the following definition: “the time when a jet or rocket engine stops working because there is not more fuel available.” Applied to the human condition, burnout refers to “exhaustion of physical or emotional strength or motivation usually as a result of prolonged stress or frustration.” If we were all jet planes, we would simply put more fuel in our tanks and carry on, no worse for the wear. But we’re not. We are complicated creatures who need more than just food and water to thrive in this world. As caregivers, our tanks may be depleted, but we keep going anyway. And eventually, we simply wear out our parts.
Dr. Barry J. Jacobs, author of The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent, describes the typical signs of burnout as fatigue, irritability, sleeplessness, feelings of helplessness, and withdrawal from activities and social contacts. Jacobs warns that isolated caregivers are particularly vulnerable to burnout and more at risk for depression. They cut themselves off from friends, family, and other supports because they don’t have time for that stuff. They keep going until they can’t anymore. And then what? They land in the emergency room with a herniated disc—or worse. Healthcare professionals try their best to intervene, but that may be after the damage is done.
Social Worker to the Rescue
As a social worker at a home health care agency, the referrals I received from the nurses had a similar theme. The family caregivers were barely holding on. Resources such as money, supportive siblings, and paid help always seemed to be in scarce supply. There was the adult daughter who had left her job to move in with her frail and chronically ill mother. Both women were lonely and depressed. There was the fifty-year-old man caring for his wife with metastatic cancer, overwhelmed with fear and grief, struggling to hold on to his job and raise his three. And I will never forget the daughter of a woman with chronic obstructive pulmonary disease who continued to sneak cigarettes, even though she needed oxygen therapy to breathe. One day, when the daughter left the house for an errand, her mother uncovered a hidden stash of cigarettes, lit one up, and set the house on fire.
One after the other, I heard their stories and did what I could to offer guidance and support. These caregivers felt frustrated and alone. I sympathized, humbled by their fortitude, courage, and vulnerability. But at the same time, I had no idea what it was like to be in their shoes. I was barely thirty years old. I had one child, a new home, and had not yet been tested by life’s fragility. My world had just begun to expand. Yet, through the souls of these tired caregivers, I could see what happens when your world unexpectedly grows smaller. These people had relinquished a part of their being in order to care for someone else. They could barely carve out time to go the dentist, get a haircut, hang out with a friend—let alone care for themselves.
How could I, in my role as social worker, help them retrieve what had been lost? I wanted to throw out a lifeline and make meaningful recommendations within the two or three home visits most insurance plans allotted. I needed to offer tangible assistance without ignoring the emotional issues that impacted their well-being. Yes, there were concrete things I could offer from my grab bag of supports. I arranged for home health aides to provide respite care, connected caregivers to local support groups, and found case management programs through the state home care agencies (now called Area Agencies on Aging). I helped one woman get a ramp installed so she did not have to literally lift her mother in a wheelchair to reach the car. Through the American Cancer Society, I found a volunteer to transport the woman with cancer to medical appointments, which provided some relief to her husband.
Although I was not able to wave my magic social worker wand and make it all better, I was able to make a modest difference. When people open themselves up to support and connection, change can occur and burdens can be lessened. I learned as much from these caregivers as they learned from me—important lessons that were helpful when I assumed a caregiving role within my own family. If you tip the scales toward too much self-sacrifice, you unknowingly put yourself and the person you care for at risk. You need to recognize that feeling overwhelmed and exhausted may be important signals that your system is on overload.
To read the full chapter you can purchase the book here: https://yalebooks.yale.edu/book/9780300221350/my-parents-keeper
