Strive to Thrive, Not Just Survive
A mom’s mental health journey in the first year after her son’s life-limiting diagnosis
A diagnosis disrupted the daily rhythm, injected uncertainty, and tested my mental health. My world was turned upside down when I went from being a geriatric and palliative care nurse practitioner to the mother of a palliative care patient. Previously an organized professional, I barely recognized myself as a young mom of a child with severe medical needs. My postpartum blues stretched into a clinical depression. My sleep patterns were a mess due to my child’s care needs, my anxiety, and my bad habit of googling diagnosis information at odd hours. I ate enough to function, but the food had little taste. I cared for my children’s needs. I just about managed, but I was in a complete state of overwhelm. I found some dark thoughts floating around in my mind. I needed help.
finding mental health support
Finding mental health support is not a simple task. Recognizing you need more support, along with finding the energy and time it takes to actually find support, are two big hurdles. I was lucky enough to have an appointment with my son’s palliative care team around the same time I was able to admit to myself that I needed help. They asked me how I was doing, and I was honest and burst into tears. I said I was scared. They explored what type of support I needed; and, within a week, I had an appointment with a psychiatrist to discuss antidepressant medications and another visit to a grief counselor, who became a weekly relief valve for my pain, loneliness, and confusion. This allowed me a space where I could forgive my shortcomings, recognize my strengths, and grow into this new story.
Research clearly shows that rates of depression and anxiety are elevated among parents and caregivers of children with complex care needs.
Research clearly shows that rates of depression and anxiety are elevated among parents and caregivers of children with complex care needs (1). This is no mystery. I see many contributing factors: grief, chronic stress, poor sleep, caregiving burden, potential loss of work to care for the child, financial stress, social isolation, and spousal relationship problems. Which of these factors rings true for you? It is an intimidating list, enough to make any parent angry that they have been dealt this hand. However, by naming the contributing factors, there is an opportunity to mitigate each one - not completely, but enough to improve quality of life and, perhaps, reduce caregiver depression and anxiety.
ADJUSTING TO A DIAGNOSIS
The initial state of adjusting to a diagnosis is fraught with grief, both anticipatory and immediate. As a part of postpartum depression, I felt no natural bond with my child. He was spastic and foreign. I had to mourn the child I had imagined I would have - one who would walk and talk, who would play soccer or sing in the school play, who might even get married someday and lead a family into the next generation. The initial grief feels so heavy. I still carry that grief, but I am stronger for it. I am thankful to have had a therapist to help me on this journey. I also found a low-dose antidepressant helpful. I now know how to work with many of the difficult emotions that I experience as a part of this rare journey. When I see a peer of my child doing a task my child will likely never be able to do, sometimes it hits me - a wave of grief knocks me sideways. It is familiar now. I can turn towards the pain, and think, “yes, welcome back grief;” and with time, a good cry, a compassionate hug, or some vigorous exercise, the wave eventually passes. In addition to the soul squeezing pain of those perceived losses, the day-to-day care is extraordinary.
Poor sleep is common in early parenthood; however, when you add in the medical complexities, caregivers experience significantly more prolonged sleep disturbances. In fact, research has found poor sleep quality to be one of the greatest predictors of depression in caregivers (3). The reverse is true too; improve your sleep, improve your wellbeing. My child wakes multiple times most nights, as he struggles to roll over and clear his airway of normal secretions. Our solution, for now, has been to sleep next to him, so that his nighttime waking does not trigger me to have to get out of bed and walk down the hall. Additionally, when he is sick and needs hourly attention, my husband or I will take turns sleeping in a different room; so that, at the very least, one of us has had decent sleep. I am the first to admit that co-sleeping is not a sustainable solution; so we will continue to reevaluate how we can support our son at night and string together restful hours. Any suggestions are welcome!
peer supports: the most precious type of cheerleader
Completing all the care tasks, appointments, follow up, and phone calls for a child with complex needs can be akin to a full-time job. A job that requires physical strength, organization, familiarity with medical language, mental tenacity, and unprecedented levels of compassion. Oh, and did I mention there is no paycheck? There are few coworkers, and no quarterly review when someone can sit you down and tell you, “You are doing a good job!” Or at the very least, “you get to keep your job.” My solution to the many frustrations of this “rare mom job that I cannot change” has been finding peer support.
Finding peer support has been an absolute game-changer.
Finding peer support has been an absolute game-changer. I can correlate the timeline of when I started to shift from surviving to thriving with the time when I started to find other like-minded rare moms with whom I could connect. These are other parents who are facing similar challenges and can offer their own solutions, knowledge of local resources, and consoling stories of caregiver burden and bouts of grief. I am not alone in sensing that support groups have enabled me to find an increased sense of power and a sense of belonging (2).
Now, when I celebrate a milestone (eg. changing my child's g-tube independently at home), or I complete a difficult task (eg. 48 hours EEG, IEP meeting, appealing Medicare decision), or I am surprised by an unexpected hospitalization, these peer supports are the most precious type of cheerleader. They get it - the grief, the uncertainty, the burden, along with the expansive love, the restless advocacy, the uncalibrated perseverance. When they say, “good job,” you just know that they know what it means. They see you, and you are enough.
So, you there, you who are reading this. You, who are giving your precious love and time to someone with a rare disease. You, who are tired. You, who are physically sore from all you carry. You who are worried, sad, or even angry. I see you, and please know you are enough. You are strong enough. You are smart enough. The ways in which you are showing up for your family today are enough. You are enough.
HERE’S A LIST OF A FEW HELPFUL RESOURCES:
(1)Dellve, L., Samuelsson, L., Tallborn, A., Fasth, A., & Hallberg, L. R. M. (2006). Stress and well‐being among parents of children with rare diseases: A prospective intervention study. Journal of advanced nursing, 53(4), 392-402.
(2) Law, M., King, S., Stewart, D., & King, G. (2002). The perceived effects of parent-led support groups for parents of children with disabilities. Physical & Occupational Therapy in Pediatrics, 21(2-3), 29-48.
(3) Mori, Y., Downs, J., Wong, K. et al. Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life. Orphanet J Rare Dis 12, 16 (2017). https://doi.org/10.1186/s13023-016-0563-3
