My mom died early in the morning on December 21st. Everybody wants to die peacefully in their sleep. Everyone wants to hear that someone they love died easily. I've been lying pretty steadily to my mother's friends and relatives. If you want that, stop reading now. Read my lie and stop: Yes, it was easy and peaceful. I miss her very much.
The truth is: My mother's death was the most horrific thing I have ever witnessed. I have never seen suffering that intense (and I've been a part of 11 drug-free births). Listening to her take her last couple of breaths may well have been the most beautiful sound I've ever heard. I miss her immensely, but no one in their right mind would wish even one more second of life upon my mother.
Her pain control had never been great. On average, I'd say the last two weeks of her life were spent at an 8 on that infernal pain scale. (See here and here for irreverent explanations of the pain scale. Language warning on the second link.) The hospice team took us slowly through a gamut of meds. We started with Norco (a codeine and acetaminophen mix), moved to long-acting morphine pills, then to liquid morphine, Fentanyl patches and finally a Dilaudid IV pump. Each time Vlas, the hospice nurse, visited he would call the doctor and increase the meds. (He advocated for my mom compassionately and aggressively. God bless him.) And none of it worked until we got to the Dilaudid pump. It, combined with six Fentanyl patches, knocked her out and allowed her to rest peacefully. We had the pump for two days.
They give you a booklet that explains the signs of death. Several books actually. And the yvil sister and I read them and read them. A week prior to her death my mother was doing everything that indicated that she could die any minute. (Except the mottling of hands and feet—that woman died with pretty pink hands and feet.) The waiting was excruciating. (I am not a good wait-er under the best of circumstances.) The hardest was the death rattle that went on for days. She would stop breathing for 15-20 seconds several times an hour. I found myself holding my breath with her, hoping there would be no more. Hoping she'd die peacefully in her sleep.
At about 2 am, the death rattle changed. I could tell death was near. I prayed my sister would be able to sleep through it. Not likely. Mom began moaning, and that moan turned into a noise that was as loud as a scream, but not as shrill. After about forty minutes, Y came in.
The Dilaudid pump allowed four extra doses an hour at the press of a button. I have never been so precise before in my life. Fifteen minutes, press. Fifteen minutes, press. I slapped our last Fentanyl patch on her (for a grand total of seven 100 µg per hour patches).
My mom had bought a book, years ago, about how to kill yourself in a dignified manner in the event of an incurable disease. She'd had me read it and asked if I would be very angry if she chose that route. She never got to that point while she was lucid. (Very disturbing, that book.) I pulled that out now. Not to kill her. (I'd already had to reassure Y that Mom would never have wanted her to go to jail for any reason, ever. Even though she'd said "kill me" days before.) I pulled the book out to figure out how much liquid morphine is lethal, so that I could give her as much as I could without actually hastening her death. I quickly determined that liquid morphine was hard to get to a lethal dosage once you've been taking it for a while and that the lethal dosage was quite high, well beyond any amount we could get into her. I began giving the dose that had been prescribed for breakthrough pain, slowly because she couldn't swallow and it had to be absorbed under her tongue. All the while: fifteen minutes, press; fifteen minutes, press; fifteen minutes, press.
Three and a half hours later, the moaning/screaming/death rattling subsided into mere moaning/death rattling. A half an hour after that it stopped altogether.
When she came to confirm death, the hospice nurse asked why we hadn't called for help. They could have increase the dosage of Dilaudid the pump was giving her. In hindsight, we'd had time, but at the time we didn't know.We thought we were minutes away. Additionally, the night hospice team sucked. And the night dispatch nurse sucked even more. (Had a couple of prior attempts at nighttime advice to confirm that one.) It would be an hour before they could get there. And the pump took more than an hour to set up originally. Additionally, we were too busy giving her the pain meds we had and holding her hand.
I felt betrayed by the hospice literature. By all the people who had had sweet peaceful deaths. By everyone who had ever touched my mother medically. I'd never heard of anything like this. I felt like my sister and I were dumped into the middle of a complicated surgery, handed a bunch of scalpels and sutures and told to figure it out. I still am in shock. It's been two weeks and I am still in shock. My mother-in-law hadn't died like that. My aunt hadn't. My uncle hadn't. They all died of similar diseases. If I had some sort of way to forget, I'd take it. But I don't. I get to be sucked back into the memory at random moments. To dream about it.
Finally, I just decided to write it. To get it the heck out of my head. To save innocent bystanders who are politely wondering how I am doing. (The answer to that is just fine, most of the time.) To provide a cautionary tale to others. (Ponder long and hard about dying away from medical personnel. Weigh the risks of heinous medical interventions against the risks of dying with a sudden increase in the need for pain meds with all help at least an hour away.)
Don't worry about me. I have an amazing group of friends who have been there for me this whole journey. I will heal. I don't know how many times I will have to tell this story before it loses it's power, but I know that it will. Eventually it will become a memory, instead of a reality. Thank you to those of you who made it this far—thank you for holding my virtual hand while I've told my story.