The Trach Discussion

Yup! We are there. To trach or not to trach, that is the question. I could have gone my whole life without ever talking or thinking about this. But let’s face it, my life has been hijacked by ALS and this is the topic of conversation these days. So, here we are.

First, for those of you that don’t know what the heck I’m talking about, a trach (tracheostomy) is an invasive surgery that creates a hole (!) in the windpipe where a ventilator tube is placed.

Minke’s pulmonary function is declining and declining rapidly. They told him that if he goes below 50 percent, the urgency for the tracheostomy becomes imperative. In December, Minke’s pulmonary function was at 75 percent. In March, he dropped to 65 percent. That’s a BIG drop in a short amount of time. Hence, the conversation.

Plenty of people with ALS (PALS) decide not to get the trach. There are also plenty of people who decide against the feeding tube as well. It’s an individual and personal decision. Some people decide to have, “no holes” in their ALS journey.

But, in deciding to get the trach, the PALS needs to accept that they are putting additional and tremendous responsibility on their caregiver.

Having a trach requires care 24/7. Molly and I would have to be extensively trained on the care of the trach BEFORE Minke comes home from the hospital. They ask the spouse to spend 24 hours with their PALS while they are still in the hospital, so the spouse can be trained under the supervision of a respiratory therapist. Once Minke comes home from the hospital, Molly and I will need to care for the trach site round the clock, maintain and clean all the supplies, tubes, hoses, ventilator, and cough-assist machine, as well as suction secretions from the airway multiple times an hour. Did I say STRESSFUL?

However, having a trach can also extend one’s life anywhere from 2 1/2 to 5 years. So … why are we even having this discussion?

Because I am petrified.

Will I be able to do it? To step up? Will I be able to handle/manage the quality of care Minke will need? I’m already finding everything about this caregiving stuff overwhelming. Now, we are adding more to the mix. I fear I will lose my already lost mind.

I’ve been doing a deep dive into researching everything I need to know about this surgery. I’ve been asking my fellow ALS spouse caregivers to share their experiences. One of my fellow caregivers did a video chat with Minke and me the other morning. Her husband is a Vet with ALS. He was diagnosed in 2015. In 2018, his pulmonary function went down to 20 percent and he went into respiratory failure! They found themselves in an emergency situation and so, to save his life, her husband had a tracheostomy. That was in 2018. Now it’s 2023 and he is still very much with us. A pretty powerful testimony for getting one, don’t you think?

But … but … but …

But with the type of care it requires, I can just forget about having any kind of life, right? I already don’t have much of one. I don’t do anything but stay home and care for Minke and Zelda and occasionally the highlight of my day is getting out of the house to grocery shop.

I can forget about having any kind of career. My writing has already been put on the way-back burner and I can’t possibly keep up with any other type of work while being a full-time caregiver.

So, I can forget about everything and just do whatever it takes to keep Minke with me for as long as possible. As long as that’s what he wants. And Minke wants the trach. To refuse him, to say that we are not on the same page, and flat-out refuse to be here if he gets one … well that’s just plain selfishness. And remember, I told him I would catch a grenade for him. And now, one more grenade has been tossed at me.

I’m gonna catch it.