The second time that Mary almost died was in the early hours of October 3, 2014 – 10 1/2 months after diagnosis.

She woke me up at midnight complaining the nose pillows on her bipap were leaking. By this time, she had been completely dependent on the bipap to breathe for several months. I spent about an hour adjusting straps, but it was still leaking, and she said, “this is getting scary” as she started to go into a panic attack. I went to the kitchen to find a new set of nose pillows. I managed to replace the first one and attach to the side strap, then I went to switch the tubing to the new nose pillow from the old one and COULD NOT get it to connect. I usually made all those changes when the bipap was off; with the air pressure on, the tubing would not connect.

By 10 months in, Mary had lost strength in her hands and arms, and she discovered she could no longer hold the nose pillow to her face while lying down. I grabbed the nearby ambu bag and started bagging her while trying to get the mask back on, only to discover that she no longer had the arm strength to push down hard enough on the ambu bag to get air – that had been her plan if her mask failed – and that the ambu bag was not really an ambu bag but one modified as a breath stacker, so it was not very effective. I was standing over her at 1 am, bagging her and trying to figure out how the hell this was going to turn out.

I had her activate the Lifeline alarm she wore on a chain around her neck. The monitor was in the living room, and I heard a voice call out, “Mary do you need help?” I yelled “Yes!” over and over, knowing that even if they didn’t hear me, they would send paramedics and an ambulance. A minute or so later, I hyperventilated her and ran to unlock the door (so the paramedics wouldn’t kick it in again), but I completely forgot to turn off the burglar alarm. I went back to bagging her before I realized that, and I couldn’t stop bagging her again. A few minutes later, four burly guys (2 from our volunteer fire department and 2 paramedics who had been here a few times before) arrived. They were trying to ask me what was wrong and I was yelling directions at them over the screaming house alarm, the bipap patient disconnect alarm, and the barking dog.

I told the fire captain to grab the other ambu bag from the kitchen and take over bagging her so I could turn off the alarm and fix her nose pillows. The paramedics got on it, saw her O2 saturation was 76 (definitely not good) and added a bit of oxygen while I quickly detached her feeding tube (oh goody another alarm going off) so they had room to work. With the extra help, I was finally able to attach the nose pillows the rest of the way and slide the bipap mask back on her face. At that point her O2 sats jumped back up to 100, I got all the alarms turned off, and made sure she was ok before finishing up paperwork with the EMTs. As I told them, I just needed another set of hands.

It was after 3 am when I crawled back under the covers. The new plan was for her to mention the nose pillows were leaking BEFORE the evening caregiver left at 10 pm, so that we would have two pairs of hands to take care of it. The paramedics suggested we keep O2 on hand so she could recover more quickly if something like that happened again. I also started to keep a complete back up mask and tubing, already assembled, with her at all times so that a switch out could happen much more quickly.

This type of thing happened frequently, although not with such close calls. People don’t realize why family caregivers are always so stressed and exhausted. I was too exhausted to tell anyone about it. I had no energy to call anyone. My days were sleep-deprived, food-deprived, stressed, worried, physically and emotionally exhausted. It is nearly impossible for ONE person to care for someone with this level of advanced ALS, even with (unreliable) paid caregiver help. “Call if you need anything” asks the impossible. Please check in with family and friends who are family caregivers – don’t wait for them to ask for help. They may not be able to.