This was the fifth surgery for my now 8-year-old daughter with special needs. We adopted Naya at the age of 3, knowing her delivery had been traumatic, knowing she was highly premature, knowing she had mild cerebral palsy and other potential complications from the early and difficult birth. She was in a NICU for four months before she went to a children’s medical care home, where we met her for the first time. Because of these early medical experiences, all medical appointments thereafter (and we’ve had many, from basic checkups to double hip surgery) have caused tremendous anxiety on her part. Five surgeries only added to those heightened fears of all things health-related, and she was given a diagnosis of medical PTSD (post-traumatic stress disorder), along with six other mental health diagnoses, in 2018. All of her surgeries have required anesthesia, all have required at least one night’s stay at a children’s hospital (no outpatient procedures are allowed because of her medical history), and I’ve been with her 24/7 for all of them. Recovery has not always been smooth, and we’ve seen countless doctors, therapists, and specialists in between. Then there’s the exhaustion of difficult everyday behaviors: She is prone to self-injurious behaviors consistent with a child on the autism spectrum, and she is often oppositional and defiant, particularly when she’s in pain. She requires round-the-clock care, as she needs support and assistance with many basic daily tasks — and nearly constant supervision on account of balance issues and impulsivity. During the appointment, I mentioned some aches and pains, high levels of stress, and sleep disturbances — particularly nightmares, after which I’d jump out of bed in a panic and run across the hall to check on my sleeping daughter. “That’s awful, to be so worried about your daughter like that,” my doctor said. “As her caregiver, you really need your sleep. And I’m concerned that you may also be depressed.” Depression? I didn’t expect the “D” word. I knew I was tired, stressed out, and had limited drive to do everyday things. And while that lack of drive wasn’t my norm, it had become my norm since adopting my daughter. I just assumed it all went with the territory of motherhood. She wrote a prescription for Prozac and I started taking it as soon as it was filled, eager for results. But the medication made me so exhausted I could barely keep my eyes open, whether I had slept well or not. At my follow-up appointment I told my doctor that the medication didn’t seem to be a good fit. “I need to be ‘on’ for my daughter’s needs, and to do my work,” I said. “And being that tired all day makes me feel even more depressed.” She looked at my weary face. “Do you want to be like a duck?” she asked. I looked at her, confused. She continued, “You know, do you want everything to just roll off your shoulders?” After years of catastrophizing a number health crises with my daughter, years of worrying that her team of doctors were missing something, years of anxiety — day and night — that something was terribly wrong, this sounded like the solution I’d needed. “That sounds amazing,” I said, letting out a deep sigh. My doctor prescribed Zoloft, and for the past few months, the antidepressant has been incredibly helpful in restoring my mental health so I can respond more calmly to Naya’s ever-shifting moods, intense behaviors, and changing health needs.
How I Missed the Signs of Caregiver Depression
As a writer in the healthcare space, caregiver burnout and depression is a topic I’ve covered for years. I witnessed it in my first job at a nursing home, and in my own family when my grandparents needed care for dementia and strokes. Yet I still missed the signs of caregiver depression when it happened to me. This is not uncommon — even for people like me who are already well-versed in caregiving challenges. With over 43.5 million caregivers providing unpaid care to children and adults, caregiver depression is a complex challenge facing a huge segment of the population. According to Denise Likar, vice president at SCAN Health Plan’s Independence at Home division (which provides home and community-based services to eligible seniors), caregivers of all ages tend to normalize their feelings as “just part of the job” and carry the burden in isolation while trying to deliver necessary care. Denise M. Brown, owner of CareGiving.com and a longtime family caregiver, believes this isolation is fueled by the focus on the person receiving care. “The family caregiver just gets lost in the healthcare system, the family system, and the community system,” says Brown. Guilt plays a part too, Brown believes — even to the point of blocking the road to help. “They may think, ‘Given what’s happening with my career, I shouldn’t feel overwhelmed and stressed.’ Because they may judge these normal and understandable feelings, they may suppress them even further,” she says. According to the April 2019 AARP Public Policy Institute report, Home Alone Revisited: Family Caregivers Providing Complex Care, 7 out of 10 family caregivers are performing medical and nursing tasks, shouldering the practical and emotional burdens of pain management alongside basic daily care. They do this care primarily on their own, teaching themselves how to manage incontinence, prepare special diets, and other complex healthcare tasks. And as the report states, most of these caregivers feel they have no choice but to provide that high level of care — out of a feeling of familial obligation, financial strain, not knowing what resources are available, or being overwhelmed at figuring out how or where to start. “Caregivers often do not take advantage of services available to them,” says Karl Pillemer, PhD, a gerontologist at Cornell University. “This may seem baffling to other people, who have trouble understanding why they would not use programs available to them. But someone helping a person with dementia [or any other chronic illness] often wants to use limited leisure time to relax, exercise, or sleep.”
What Are the Signs of Caregiver Depression?
With these levels of stress and constraint on leisure time, it’s no surprise to Likar and other healthcare professionals that caregivers are highly likely to experience depression, which often leads to burnout. The Cleveland Clinic defines the correlation this way: “Caregiver burnout is a state of physical, emotional, and mental exhaustion. Stressed caregivers may experience fatigue, anxiety, and depression.” Knowing the signs is vital to identifying needs and accessing support sooner. Common signs of caregiver depression and burnout, per Denise Likar, include:
Lack of energy and difficulty with motivationOverwhelming fatigue and sleep issuesBecoming unusually impatient or irritable with the care recipient or othersDifficulty coping with everyday tasksWithdrawal and isolation from social circlesThoughts of abandoning the care recipient or “running away” to escape from the burden
“What’s different about a caregiver is that these symptoms often go unnoticed or are easily blamed on just being tired or busy,” says Likar. “People fighting feelings of depression may not always feel there is a solution so they don’t bother getting care. However, solutions do exist and that’s why having those open conversations is so imperative,” she adds.
What’s Helped Me: Healing From Caregiver Depression
Besides taking an antidepressant, I also see a reflexologist, massage therapist, and a counselor on a monthly basis. Talking to a counselor has been tremendously helpful, as I’ve been able to work through my emotions and come up with healthier coping mechanisms for the stress of caregiving. My reflexologist is the mother of a special needs child as well, and we usually spend the first half of my session talking about our stressors and encouraging each other before she begins to work on my feet. I also take several energy-boosting vitamins every day, and have cut back significantly on my workload. As often as I can, I go to the gym with two other moms whose children have significant special needs. My husband and I take advantage of monthly respite programs offered by our church, where our daughter is assigned to a trained and caring one-on-one volunteer. There’s a registered pediatric nurse on site during these events to ensure the health and safety of all children in attendance. We’re also part of an extensive network of adoptive parents and attend special needs parenting support groups offered in our community. And to keep our marriage and other social relationships healthy and growing, we have a number of reliable babysitters whom we call regularly to watch our daughter so we can go out and enjoy one another’s company.
Finding Support to Prevent Caregiver Depression
The saying “It takes a village to raise a child” is certainly true, and it takes effort, time, and constant maintenance to keep that village strong (and expand it). But what I’ve learned this past year is that a caregiver often needs a village of her own: a system of life-giving self-care routines, regular caregiving breaks, connections to professionals and friends who check in, and a tremendous amount of resources — human, virtual, and physical — to support her on those days when she just can’t get off the couch, when she isn’t sure where to turn next, or when she can’t envision another day, month, or year of care. “The unrelenting tasks and responsibilities means you are so focused on what to do that it’s hard to look up and focus on how you feel,” says Brown. If you’re experiencing any of the signs of caregiver depression, or feeling a sense of desperation or hopelessness to the point of self-harm or other extreme measures, reach out to a trusted professional in your circle immediately — a family doctor, a therapist, a support group leader. Tell your spouse, partner, or a close family member about your feelings so they can offer support. Do not dismiss these symptoms just because you think you are too tired or too busy. “Connecting with others who understand and talking out the feelings to supportive listeners can be a great first step,” says Brown. While it’s just a starting point, one simple phone call could make a life-changing difference in helping you identify or prevent caregiver depression — and get you on a path to healing and support. Listed below are several free help lines across the spectrum of age and care needs:
Alzheimer’s Association Helpline: 800-272-3900The National Alliance on Mental Illness (NAMI) Helpline: 800-950-NAMIOffice on Women’s Health (OWH) Helpline: 800-994-9662National Suicide Prevention Lifeline: 800-273-8255Family Caregiver Alliance: 800-445-8106Eldercare Locator: 800-677-1116
If you’re experiencing caregiver burnout, fatigue, or depression on any level, reach out today: The person in your care needs you to be at your best, and your own health is valuable.
