The Emotional Toll of Being a Caregiver

If I only knew what I was getting myself into when I had my first child 32 years ago...

I tried to prepare to be a good parent. I read parenting magazines cover to cover every month. That is the only help parents had back then – the internet was not available to the public. There were no mommy blogs or social media support groups. No funny tweets about parenting.

I read my magazine to learn about colic, teething, potty training, and other developmental stages.

But no one talked about the emotional side of taking care of kids. I had very little help from my family. And only a few friends, who were busy with their own small children. I was on my own.

There are the basics of parenting - being sleep deprived, recovering from C-sections, having colicky babies, etc.

But raising kids with chronic health conditions is a different ball game. The emotional toll on a caregiver is tough, especially when you do not have family or friends that can help. In fact, we were also caring for aging parents as well as our kids.

Healthy kids versus chronically ill kids

My middle son was hospitalized at age 5, and a respiratory therapist told us that he had asthma. What?! Later, my other 2 kids and I were diagnosed with asthma. Who knew? I had been living with asthma my entire life and did not know what it was like to breathe well.

In addition to the basics of caring for kids (school, parent-teacher conferences, swimming lessons, T-ball, dance, Scouts, etc.) we had countless visits to the pediatrician, the after-hours pediatrician, the allergy and asthma doctor, urgent care, and the emergency room (ER).

My kids missed a lot of school thanks to illnesses and also environmental triggers like wildfire smoke causing asthma flares. It was even worse when they were in the hospital (12 times). They would be in the hospital for 3 days to a week, and then would be discharged on oxygen and need another week or so to recover and regain their strength.

Besides sick visits, my kids also had allergy shots. That meant I had to carefully plan their schedule so they were not active 2 hours before allergy shots or 2 hours after (to minimize the risk of anaphylaxis.) All 3 kids had allergy shots, but they were all on different schedules. So, I would just haul all 3 of them to shots twice a week, and whoever needed shots would get them.

The emotional and physical toll as a caregiver to children with asthma

I was exhausted from constant worry and trying to protect them from their asthma triggers. We were germaphobes long before COVID came along.

Through all of that, I had to set the tone. I learned early on that if I panicked, my kids would panic. I had to stay calm in the ER and at my kid's bedside in the pediatrics ward of the hospital. I would be matter-of-fact and explain what was going on. We would talk about nurses, doctors, and respiratory therapists. We would talk about what each person would do to take care of my kids.

My kids knew all about stethoscopes, chest X-rays, and breathing treatments. Through it all, I had to stay strong to make medical decisions about my kids (and my elderly family members). My body could only take so much, and I started having migraines and heart problems.

Do not get me wrong – we had a lot of fun times, and some healthy times too! And we learned to ask for help and focus on our mental health.

My kids are adults now but still need medical help from me from time to time. As I tell the younger moms, you do not stop being a parent when your kids turn 18!

What about you?

I would love to hear from other caregivers. What have been the hardest problems for you to deal with? What are the good memories?