October 19, 2017 marked Matt’s last day at Kessler as an inpatient in their traumatic brain injury unit.
Earlier in the school year, I had made a commitment to volunteer at G’s and H’s school for one day every month. October 19th was my designated day. I’d debated whether to cancel or not. Canceling would mean disappointing G and H, who always looked forward to the day I was supposed to come in. Not canceling meant I couldn’t spend the morning with Matt and I hated the thought of him spending too many hours alone.
Ultimately, my decision came down to logistics. Matt’s therapy schedule shifted due to discharge procedures. He was busy all morning with therapies. I went to G’s and H’s school and told Matt I would see him in the afternoon with both kids in tow.
A friend texted to ask how Matt was doing, how he was feeling about coming home. I told her that I wouldn’t see him until later, but I thought he was okay, though I’d gotten a number of phone calls from him already that morning that made me nervous. I wrote that it seemed as though the change in routine was leaving Matt feeling unsettled.
I suspect unsettled is a barely adequate word to describe Matt’s state. I don’t know how it must have felt to be inundated with new information when his short term memory was still recovering from trauma. I can’t imagine the difficulty he faced in attempting to make sense of a new schedule when his ability to logic had been so recently compromised. I promised Matt that he didn’t need to worry about anything; I would handle the logistics and the paperwork—I was handling the logistics and paperwork. I told him I would make his outpatient appointments and pack his things and ensure every I was dotted, every T was crossed.
But anyone following along with this story knows by now that Matt was our family’s planner and scheduler. He coordinated our trips and made our reservations and planned our departure times around the certainty that I would be running ten minutes late. I was the one who booked the wrong hotel room and forgot to read the reviews on the new purchases. As a result, telling Matt to surrender control of his own schedule to me was akin to telling the sun to stop rising in the east so the moon could take over. He simply couldn’t.
And he couldn’t believe that the struggle to keep track of all the moving parts of his discharge wasn’t universal. If he was struggling, then he assumed everyone (me included) was struggling.
In December, when Matt’s mental state began to decline, this assumption evolved. He assumed his reality was everyone’s reality, and anyone who disagreed was wrong. And that evolved assumption became a source of ongoing friction between us. It became the reason I used the term involuntary gas lighting to explain our conversations and the reason I once called a friend, almost in tears, to confirm scissors weren’t pencils. This evolved assumption made our hard days almost impossible. But I’m getting ahead of myself.
For now, it’s enough to introduce this topic, which, along with the idea that we had to renegotiate our relationship, will dominate the posts in the next few weeks. So I’ll end with this thought:
I’ve said before, and still maintain, that I truly don’t know whether the hardship that defines many of our last months was unique to us because of the nature of our relationship, or whether all brain cancer patients and caregivers experience a similar struggle. I know only that I wasn’t warned to expect this challenge. I know only that sometimes I couldn’t tell if I was losing my grasp on reality due to a potent blend of stress and exhaustion.
I know only that I hope sharing this part of our journey helps another caregiver who may also be struggling to remember which way is up when everything in her world looks completely sideways.