On Dec. 31, 2016 my sister and I helped with my mother’s decision to have no further treatment of the pneumonia that would result in her death around 10am on Jan 1, 2017. She had been admitted Thurs. evening, the 29, for slight pneumonia in her right lung, that had improved some on Friday, when my dad was sent home with a cough and sore throat. He fell overnight and ended up at the ER in the same hospital around noon on Sat. the 31st, while the ICU tried to get one of us on the phone about my mom. I was the one to talk to them from 3,000 miles away in NC, learning from the nurse in Santa Rosa, CA that mom now had pneumonia in both lungs with a staph MRSA type infection. NOT good for an 85 year old quadriplegic of 14 years. The nurse was direct with me and I knew the course of treatment. Intubation with meds could lead to lifelong ventilator dependence, not a good choice, nor one I thought my mom would make. The nurse, Liz, said my mom had indicated she was “ok” with the intubation treatment though, kind of a surprise to me (Our family had discussed these decisions many times over the years, even before her paralysis, and there was a great chance that once dependent on a ventilator it would not be easy to get her off the vent since her lungs had already started to atrophy, she had diminished lung capacity, as well as polyps or dark spots that had been detected on one of her lungs). Meanwhile my sister found out my dad in the ER was not seriously hurt, and would be sent home that evening with meds, no pneumonia, to rest. We all agreed that mom’s choice was good – until the nurse called me a few hours later that evening and said mom had changed her mind and saying, “This is stupid.”

Things were getting worse. She was much sicker, the treatment wasn’t working, she was miserable, and her doctor had talked to her about future life on a vent. Her evening caregiver had stopped in for a visit, and mom had said many times to her, “This is stupid,” about the treatment options, how sick she was, and how horribly things were going. The nurse said she thought I should make arrangements to get dad back to the hospital for mom, as they’d been together too long for him not to be with her when she passed. I told her I’d have him there within the hour, and get my sisters there as soon as possible. After calling my sisters, each a 3 and 8 hour drive away, I called dad to explain I had a friend coming to get him, so he needed to pack a few things and be ready to be picked up in an hour. I told him mom had changed her mind and didn’t want any more treatment and was going to die that night, and that my sisters were on the way to be with them. I explained that mom was struggling too much to breathe in a body that made her feel she was encased in concrete and she just couldn’t do it anymore, she had no fight left. He understood. I think he was out of fight too.

An hour later he was at the hospital, the nurses there were helping keep mom comfortable, palliative care was ordered, my sister arrived about an hour and a half later to help take over in the room so dad could just be there. The nurses supplied support, food and coffee; the doctor made mom comfortable with morphine and nitro tabs; my sister helped her with mouth swabs and cool rags, Frank Sinatra music and calming words. She and dad sat with her all night, calling once in awhile to keep us updated and to let us talk to mom so she knew we were there with her. Around 10am my sister called to say mom’s breathing was barely perceptible. We were there to tell her it was time to leave, we were letting her go, and she left us. It was sad, but it was so freeing for her, and us. After 14 years she could once again get her own glass of water, blow her own nose, wipe her own butt, walk across the room and out of it if she wanted.

We have to let go, more easily, more simply. Just because we can hold on, doesn’t mean we should.

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