Ticket Please: The Caregiving Rollercoaster

It is a perfect day for a trip to the amusement park. The weather is warm and sunny, not a cloud in the sky. Family and friends are joining you for a day of carefree fun. You enter the park, WOW! The sights, sounds and smells overwhelm you. The laughter and screams are deafening. The planning begins: what rides to ride on, what places to eat, what shows to enjoy, so get your map ready!

You spot Kiddie Land and with a ticket in hand and a child by your side, get ready to be “just a kid.” You hand your ticket to the ride operator and she tells you, “No, your ticket is not good here.” You exclaim, “Well what do you mean? I want to be in Kiddie Land!” She points to where you and your child will be going.

It is the rollercoaster.

You feel like you can’t breathe. It is not just a typical rollercoaster; it’s the coaster that’s never been tested. It’s the fastest and highest, with more plunging drops, more twisting loops, more jerking motions, and you will be riding in the dark, so you won’t know what comes next. Sure, some of your family and friends agree to ride with you, but some may not. You have no choice in the decision–you must ride.

So let’s meet and conquer the coaster of caregiving.

How many emotions can you feel in a day of caregiving for a child who is medically fragile? I lost count. With the medical, emotional, and behavioral needs they may have, I can’t imagine how many emotions our kids may trigger daily. Your child may have unseen needs or she may have very apparent needs: trachs/vents, feeding tubes, adaptive strollers, communication devices. He may have many diagnoses or he may be undiagnosed. Whichever the case, you feel a spectrum of emotions.

My journey on the caregiving rollercoaster started over 17 years ago, years before my very own special princess with complex needs was born. I am a pediatric nurse; I love and was always passionate about infants and children who are medically fragile. I still feel that way today.

The big difference is that as a nurse, I am able to leave my caregiver role after my shift is over. I didn’t know of the DME and insurance wars I would be faced with. How hard it is to fold up an adaptive stroller in the rain. The impossible task of managing therapies, schedules, and life-maintaining equipment every day, 24 hours a day.

I did not appreciate or realize the emotions many of the caregivers I dealt with professionally until I lived them myself. I look back on many of the families I have been fortunate to have cared for. They have helped me become the parent caregiver, not just the nurse for my daughter. I can look back at the confidence of the mom standing up to the physician and telling him something was wrong with her child or what her child needed. I remember the enthusiasm of parents when their child had a “good day,” or the optimistic parent who hopes the next drug, surgery, or equipment may make life easier for her child.

But I have also seen the pain and helplessness of the parent whose child will not get better. That the best thing they can do is give their child a quality life full of love. The anxious mom waiting for a CT scan, lab results, or the long wait for their child in surgery.

Many times we try to hide the feelings of jealousy, hopelessness, and resentment. What kind of person would feel jealous or resentful of another person’s child who has accomplished something that we wish for our child? We grieve, we are human and it is acceptable to feel like this, because we will appreciate and be overjoyed by our own child’s accomplishments, no matter how small.

I am that mom now; I am still learning how to balance being my daughter’s caregiver instead of her nurse whose shift ends in twelve hours. She is not just my patient who is on oxygen, tube feedings, parental nutrition, and catheterizations. In my nursing world, my daughter as the patient would scare me.

Many say that I am lucky I am a nurse, that it must come easy. The answer is no. No matter how many procedures, therapies, or medical decisions you make professionally, it does not make it easier when it is your own child. My biggest struggle is the world of palliative care we have entered. No nursing school prepared you for this journey with your own child.

I go to work after caring for my daughter during the day. By choice we do not have a home nurse. This is a personal decision and maybe one of the few decisions we can truly control. I continue to work with infants and children who are medically fragile, so I am on the 24-hour caregiver rollercoaster.

I can say truly I can relate to my families better since I am now a rollercoaster rider. At the end of the day, you have periods of accomplishment no matter how big or small. Getting AFO’s on without breaking a sweat, winning an appeal with an insurance company, or just making it through the day.

The motivation comes when you look at your child in the brief moment of peacefulness knowing you did all you could do that day. The way he or she may look or respond to you is all you need to get back on the caregiver rollercoaster.

So next time you are at the doctor’s office, hospital, or out in the real world, if you see a fellow rider on the rollercoaster, maybe smile and nod because we are all on this ride together.