I have a client in respiratory distress.
I’ll put you through to Urgence Santé.
What is the nature of your emergency?
My client is having difficulty breathing due to a lot of secretions. She has ALS.
She has ALS. It’s a progressive neurological disease. She can’t cough up the secretions and she can’t swallow. We’re trying to suction her but she’s in distress.
Is she conscious?
Can she speak?
No. But that’s because of the ALS. Her muscles are paralyzed.
We’re sending first responders and an ambulance. Do you have a defibrillator on hand?
No, we’re in her house.
Does she have asthma?
No, she has ALS. Her respiratory muscles are weakened.
Okay, stay on the line until the ambulance gets there. Don’t give her anything to eat or drink.
She’s on a feeding tube right now. We’ll detach it.
Ten minutes later, a big fire truck pulled up in front and three firemen entered the house and asked the same routine questions as the dispatcher. They meant well but seriously, nobody knows what the fuck ALS is beyond the ice bucket challenge. Same questions with the ambulance technicians but at least they were well-equipped with monitors and oxygen and wheels to transport the patient to hospital.
This all happened yesterday morning, on a day my boss happened to be tagging along on my visits. I’d already warned her this last visit would be emotionally intense but I didn’t bank on it being an emergency situation.
It was very, very scary for all of us, but especially terrifying for the client who was absolutely frantic and unable to communicate with us except through panicked eyes as she tried again and again to clear her airway. Any sound coming from her throat was a good sign, even if it was only a deep guttural moan, as it meant she had an airway. But it was on and off because her tears kept gushing and then there’d be even more secretions to clear.
Kudos to everyone present for remaining calm: the worker who took care of the suctioning, the client’s husband who sat next to her and held her hand as we waited for help to arrive, my boss for her compassion under the circumstances and all the emergency personnel who showed up and did their best.
If this had happened in a hospital setting, we would have called a code and more than enough qualified people would have shown up “stat” to assess and treat the situation. Eventually there’d be a shift change, then another, and yet another. Home care isn’t like that because a lot of times, there’s just you and a cell phone. When your shift ends at 4:00 pm, it doesn’t mean the clients are okay or that you can flick off a switch in your head and stop worrying about the ones who are more fragile and at risk.
My boss said I handled it well, that I remained calm. But inside I was freaking out. All I wanted to do was bawl. Not because it was an emergency situation and I was scared shitless, but because my client was suffering intensely and there was nothing we could do to help her breathe.
Not surprisingly, I couldn’t sleep last night. My client’s tears haunt me. The last thing I said to her was that she would be okay, that the hospital would provide relief and help her breathe easier. But as I said those words, in the back of my mind, I hoped they were true.
Because ALS is so much more than the ice bucket challenge.