Last week, we discussed the subject of compassion fatigue in the healthcare industry with Jessica Dale, a parent of a brain tumor survivor or “brain tumor mom” and expert on the subject.
This week, we discussed her personal experience as a parent of a child, that is now a young adult, survivor of a pediatric brain tumor. We asked for tips on how to avoid pitfalls that families of children and adolescents with special health care needs face.
Jessica is a registered nurse, TEDMED Research Scholar & grant recipient, Certified Compassion Fatigue Professional, Certified Trauma Professional, Certified Grief Counseling Specialist, & REBT Coach. Her doctoral degree is in health care science and research; her cumulative doctoral work is focused on transitional and supportive care for medically complex and fragile children and youth. She started her career in the healthcare industry with her sights set on nephrology, but after her daughter’s two brain tumor diagnoses and their personal healthcare journey, she began to focus on the issues that impact patient outcomes as related to traumatic diagnosis, such as; trauma informed care, compassion fatigue, grief, and care coordination. She has now completely shifted gears professionally to focus on those clinical issues that she identified through experiencing her daughter’s diagnosis. She focuses her work on compassion and its role in healthcare.
Caregiving and Compassion Fatigue
We spoke with her about the concept of “compassion fatigue,” among both healthcare professionals and caregivers. Caregivers and family members of pediatric brain tumor patients are at high risk for compassion fatigue. It is imperative that they have access to the appropriate support and resources to help strengthen their resilience.We asked Jessica about her experience parenting a child survivor who is now an adult with ongoing conditions as well as her thoughts on how to reduce the load as a caregiver.
Jessica’s Personal Experience
The struggles we face as parents of children with complex medical needs will continue from their initial diagnosis well into adulthood. While our challenges may be different than families whose children do not face medical uncertainty, we must still consider our family units as “normal”.
Despite having two of our five children with medical needs, one a type 1 diabetic on an insulin pump and continuous glucose monitor, and the other a pediatric brain tumor survivor with all the challenges that accompany it, we see ourselves as a “normal family.”
Every family, despite the diagnoses and challenges should still have the goal to raise their child into an as functional adult as they can be. They may not reach all the same milestones as others or at the same time, in fact, there may be some milestones they may never reach. That being said, you still need to have the shared family goal of helping them obtain their highest functional capacity. Without structure, rules, and guidance, we may impede a child’s ability to develop into a healthy, functional, and/or independent adult. By not instilling those things, you are not doing them any favors, so to speak. In fact, you may be contributing to the exact opposite.
As a parent of a child who has experienced challenges such as a brain tumor diagnosis, you may be prone to being too lenient. This is normal as we tend to be overly empathetic and want to cradle and protect them because we know they have struggled and suffered so much. We try to do everything we can to eliminate any further discomfort. We need to remember that even though we want to protect them, part of normal childhood development is developing the ability to deal with adversity, to listen to or follow instructions, and to be responsible for one’s actions.
For example, I would tell my daughter to clean her room and every time she would say, “tomorrow… I am too tired today.” After several days of telling her, I became frustrated which quickly transitioned to guilt. “How could I be frustrated?” I asked myself. “Of course she is tired, she has a brain tumor, what kind of mother am I?”
I would then clean her room myself because I felt guilty for being frustrated and I wanted her to be comfortable. Eventually I shared my feelings of guilt with a therapist that specializes in trauma. She asked me how often I made excuses for my messy room when I was 15 and how many times I told my parents I would do chores later, only to find an excuse to do anything but my chores. This can be a difficult paradigm shift for parents of medically complex children, and it is one that may take conscious effort. We need to remember that some of the behaviors we see in our children are not related to their diagnosis, but part of normal childhood behavior.
As parents we need to remember that it is our job to equip our children with as many skills as we can to help them become successful adults. The definition of success will vary from child to child, but we need to remember the end goal, which is to help them reach their optimal level of independence and functionality. Children learn from infancy how they can influence their caregivers based on their actions, with or without a brain tumor. While it can be difficult for the entire family, we need to remember some behaviors and feelings are part of typical human development and we need to respond accordingly.
Pediatric brain tumor survivors are almost five-fold more likely to live with their parents as adults, less likely to hold a job, and less likely than their peers to attend and complete college. Many outcomes are related to pathophysiology of the disease and the side effects from treatments. However, some can be related to failure of the parents to foster independence. In doing so, we are reinforcing codependent traits in our children. It’s tough, I know. It’s hard for us to take our hands off the wheel, so to speak; we are so afraid to let go, but we need to, a little at a time. We can help our children develop their own beliefs in their abilities or self-efficacy by starting small.
One way is to involve them in the healthcare decision making process as much as possible. We should engage them in their care planning and health outcome as much as they are emotionally and cognitively able. This can be as simple as having discussion with them about why they take a certain medication and asking them to explain the consequences of not taking it. Have your child help set up their medications and set reminders for scheduling dosing times. We can supervise and remind them to complete these tasks, but by having them participate, they begin to take ownership for their health outcomes.
We involved Zoe from her initial diagnosis and treatment plan when she was 14. She decided the day of her initial brain surgery and was involved in all the care planning discussions. When we shifted to focus on independence, we started small. She decided when to take medications during a certain time window and what day to go to the doctor. Now, 5 years later, Zoe goes to many of her appointments alone and goes to all her lab draws by herself. I used to go to all appointments and during the lab draws would tell the techs where to draw (due to the challenging vasculature common with this tumor). Zoe also used numbing cream before her lab draws because the fear of the pain associated with the labs would cause her to become very anxious. Over the course of a year or two I started pulling back; I attended the appointments with her, but she would have to speak for herself. I would only intervene at the end if I needed to clarify or advocate for her. After a slow transition of about a year I no longer attend lab appointments and she no longer uses numbing cream. She is confident in her ability to advocate for herself and has practiced breathing techniques to help her breathe and meditate through the discomfort. I also no longer attend primary care appointments. I followed the same transition plan as I did with her labs. I slowly stopped “driving” the appointments (which was very challenging as a healthcare professional) and required Zoe to speak to her doctor, only intervening if needed to, to assure her health care needs were being met.
This gentle shift allowed me to eventually wait in the clinic lobby during appointments to where we are now. We have maintained a well-established relationship with her providers and Zoe has signed a release of information allowing me to discuss care if necessary. I have yet to attend any appointments in three years as far as primary care is concerned. I also no longer attend neurology appointments and only attend the neuro-oncologist visit as he orders and reviews her MRI’s. I still attend all appointments where there is a chance of upsetting news being delivered because I still want to support, comfort, and guide her during the difficult times. I still attend all appointments at St. Jude’s while she is under their care and part of a clinical trial.
It’s important to remember that independence can mean very different things to different people. For some it’s living on their own and being self-sufficient and for others it’s the ability to dress themselves in the morning. Families need to set goals that are unique to the child and their circumstances.
Progress doesn’t have to be an “all or nothing approach” Despite my education and experience and my spouse being a physician, we still have our struggles and moments of what we consider parental failure. For example, last summer, I said to my daughter, “I can’t be responsible anymore! You have to do it!” Between my work as a nurse, being a parent to our five children, and trying to support my widowed mother, all while completing my doctoral degree full-time, I had completely depleted my caregiving capacity. I began to feel resentful, as if I cared more about everyone else more than they cared about themselves. I reached the point where I wanted to give up, and I did. I stopped helping with medication reminders and set up.
Months later, when we attended my daughter’s appointments, many of her labs, which had been normal for years, were no longer normal. It was painful knowing if I had continued to set up medications every night as I had been, her labs would likely have been normal, but I wanted her to be responsible for her health outcomes. She had to be the one to tell her doctors, as an adult, that she was not doing what she needed to (adhering to treatments) and she had to hear, “your lab results are abnormal.” It was also hard for me, I felt like a terrible mother and an even worse nurse. I hated to see her suffering in any way. But the experience caused us both to reflect and grow. She had to accept that she was ultimately responsible for her health outcomes, and I had to accept that perhaps she was not ready to do it all alone, just yet.
I often say, as a parent of a child with a life changing diagnosis, all normal feelings are magnified. All parents feel guilty from time to time, but we (parents of children who are medically complex) REALLY feel guilty when we choose not to or cannot help our children experience “normalcy.” Just remember that success is a journey, not a destination and it is as unique as the individual.
And If I can impart one last thing regarding caregiving, it’s to remember to be gentle with yourself and that it’s a fluid process that ebbs and flows. You can make great strides and slide backwards all at the same time, and it doesn’t mean you are failing.
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