The third time Mary almost died was only a few weeks after the first time.
I had taken a bad fall at work on Tuesday – luckily, I hadn’t broken anything, but rewarded myself with a “minor head injury”, a mound of paperwork, and a doctor’s order to stay home for at least a day. Luckily, the caregivers showed up the next day and I was able to rest. Then on Thursday morning, the caregiver and I were getting Mary ready for a trip to the eye doctor when we had another incident with the power and air flow on the bipap going out and NO ALARM! Neither of us were looking at Mary when it happened, and it took a few seconds for the caregiver to see what was going on and tell me, then what felt like forever to switch the power supply back from battery to the wall outlet. I had to call and cancel the eye doctor appointment because Mary absolutely refused to go back on the battery power or even to leave the house.
I then called the ALS clinic to let them know what had happened and ask about switching from the bipap to a Trilogy with a better alarm, and to ask for oxygen for recovery from situations like this. They called back with a message from the pulmonologist, who was concerned that she was decompensating so quickly (she had zero ability to breathe independently), and told Mary that if she still wanted a trach the time was NOW.
Mary said she thought she had more time. I told her the ALS doctor had suggested she do it back in August, but apparently she hadn’t registered or remembered that. I finally told her that if it was me and I had no mobility, I wouldn’t want a trach, but that I would honor her wishes. Now, I thought, she will face the decision. She began to look more seriously at the issue and doing some research to decide whether or not to get the trach, and I found some other people with ALS who were living on a trach and ventilator for her to email with about their experiences. I hoped that maybe she would actually finish telling her old friends what had been going on, the ones she hadn’t even told yet that she had ALS.
I posted in a Facebook support group, “How long can we do this? I am overdone, physically and emotionally, and the roller coaster never stops. I’m a wreck. How do I sleep not trusting the alarm to go off on the AVAPs if the power goes out? How do I keep doing my job with a smile on my face when I keep getting punched in the gut?”
To trach or not to trach…. a decision we struggled with for nearly a year. A decision we argued about, cried about. She stilll didn’t make the decision at this point. She got the Trilogy a few days later, and with the additional settings and alarms, and the internal backup battery power, she became more comfortable with it and yet again delayed making a decision and reaching out to old friends.