Life in the Trenches

The reality of caring for a medically fragile loved one.

By Mary Latini

It could happen to anyone. One day we are moving along in life with our biggest care in life being what to barbecue and who to invite. Then, in a snap, an accident, or a debilitating illness occurs and our life becomes an incessant vigil of care for a loved one. No-one is immune, but unless it’s in our face, most are unaware what a family goes through. Many families struggle in silence and don’t really reach out for help because help is limited, and we are used to standing strong and being independent. For our family that moment was when our son had his first status epilepticus seizure.

We were already in a routine with our two boys, James a precocious toddler of 2 years and Kevin 6 years old navigating autism. We had settled into our happy home life and it’s routines. The children stayed in their rooms and we stayed in ours. All the usual tasks that graced a busy home, Shopping, cooking, dining out, little excursions, movies, were all on autopilot. My husband ran a home improvement business and I taught piano. Sometimes we would call a sitter for some adult time, or take a ride out East.

A call changed everything. I was getting ready to go out Christmas shopping with my mom and the “baby.” The voice on the other end told me that our son Kevin had a seizure and we need to meet them at the hospital. I thanked the school nurse and assured her that they must be mistaken because my son didn’t have seizures. I dragged my feet going to the hospital because I assumed there was no emergency. As far as I knew People recovered within minutes from seizures and I just needed to sign him out and take him home. I arranged for my mother in law to come and watch James and I drove off obliviously into the worst nightmare of my life.

When I arrived at the emergency room I expected my son to be sitting up in one of the partitioned bays. Instead I was directed to the big blue doors that said “Acute Critical Care.” My son was intubated and still having a violent seizure. His face was pale, his lips a disturbing blue. He was surrounded by no less than 10 medical team members. I was not prepared for this. I helplessly stepped up amid the tubes and kissed his forehead staining his grey cheeks with my salty tears. Apparently status epilepticus seizures lasted for hours and could be fatal. I was not prepared for what this would mean for our lives and everything in it.

Fast forward a year and Kevin was having no less than 100 seizures a month. We were so very fortunate to find an organization Angela’s House, to help care for Kevin and give us some respite from his medical care. Oxygen tanks, Seizure drugs, ambulance rides, hospital stays all at unpredictable intervals made our routine lifestyle turn into an F5 tornado.

For years we had no one to watch Kevin overnight. My husband and I took shifts staying with him, because if he seized he could die. Incontinence added to our laundry load, no less than 6 loads a day. Holding onto students and practicing the piano for me became almost impossible. My other son got caught up in this whirlwind and at a very young age learned how to operate the oxygen and to administer a blow by to his brother during a seizure. This was not what I planned to teach him at that age but nonetheless quite impactful! Going out to eat was a pipe dream. Our very small home became a lot smaller as nurses, therapists, O.T.’s and P.T.s were routinely part of the landscape and part of our new family. My main concern became a balance of keeping the caregivers happy so they would stay, and keeping my two boys safe. Updating the landscaping, painting, fixing holes in the walls, that could wait.

What became apparent was that we could no longer take anything for granted. Getting out to shop, having a steady income, dining out, sleeping, thinking, our privacy, and our relationship all out the window. What really grabbed me was that we were, by far, not alone in this, there were others. Each one struggling to hold onto little pieces of their lives. Once the initial shock of a debilitating illness clears, so do the calls, the helping hands, the friends scatter, invitations to family events disappear and you become an outlier. You realize that your stuck.

The scary part is that no-one cares as much about your family member as you do, and the minute you’re not watching, the care slacks.. so putting a person you love into a home becomes completely unthinkable.

There is not much you can really do for a family in this situation. Let them know you care, don’t stop calling, you may be the only one. The journey is theirs and they will one day emerge from it, though a little bedraggled, somehow stronger, wiser and more grateful.

For us years have passed. Our home has not fully recovered from the neglect and abuse withstood by the shift in priorities, nor has our marriage. However, We are slowly crawling out of the cave that imprisoned us for so long into the sunlight and even have a new grill.. not sure what we will make tonight but at least we are filled with gratitude that we are free to shop, cook and enjoy each moment.