I have not borne the brunt of care for my mother, that responsibility fell to my pop and my sisters who live in town. So the tiny bit of work I did at the end of my mother's life was minor. I happily did it because I felt that I owed my mom for straightening out my life during my teenage years. A week of turning, medication, and diaper changing every four hours doesn't begin to repay what my mother did for me. Two of my sisters and my pop cared for my mom for two years, running back and forth to chemo sessions and altering their work schedule.
The most difficult thing I've discovered from this experience and speaking to others who have lost their parents in this way is the contradictory feelings you end up with about the parent's quality of life. Once my mom sunk into her coma with no hope of return we lost our mother. She had stopped taking water or food, and could physically last only so long. I watched my family grieve with difficulty, because my mother wasn't dead, but she was gone. Neither alive nor dead, my sister Zee joked that writers of zombie movies must have been hospice nurses in their last life because coma patients so closely resemble the undead.
This wasn't creative hyperbole on Zee's part, merely observation. My mom's eyes were rolled back to their whites, her eyelids were half-open unless we closed them, her features were sunken into her skull, and occasionally she'd open her mouth and moan something that would have been scary, even if it didn't possess the creepiness of being my mother's voice. Zee had it right on, I think.
Over time my sisters and I moved into her room. While she lay on her hospital bed, we played cards on her and pop's bed. This was convenient for the every 4 hour schedule, but it also was our way of closing ranks and supporting each other. Epic battles of Skip-Bo were played, followed by similarly hard-fought competitions of the 70's Parker Brothers game, Gambler.
I did a cursory probability analysis of this game in order to win and discovered that there are two unlikely bets you need to pursue aggressively:
- Whenever you roll doubles, you should take your option to roll doubles a second time to win $500. Since $1,000 is what you need to win, and you don't have to risk any money to do it, you have infinitely good return on investment. In addition you're going to roll that second doubles one time in six. Those are good odds to win the game.
- Whenever there's a sweepstakes and the six dice are rolled, you should take the option to win $200 on the chance that any two adjacent dice will have the same number. The odds are the best on the board, given the payoff and the investment of $10. Do this three times and you've got half the game won.
After a few days it was really hard on everyone else. When the hospice nurse would show up everyone would complain that she said "one more day". This seems morbid, but living in a coma is not living. For the family of a comatose terminally ill patient, you experience the bizarre contradiction that you are wishing for a loved one to die, but you feel awful for doing so. Every time someone would say, "I wish it was over", I would say, "Intellectually, yes, but emotionally, I can't wish for my mom to be dead."
There are some elaborate rituals that families construct to try and encourage the family member to leave peacefully. One day we all gathered around her bed, told her how much she meant to us, and that it was ok for her to leave. We all then left the house with one sister hiding out in case of trouble.
No that didn't work.
I played a lot of music that reflected my black mood, some of it that encouraged her to let go, some that just comforted me. Here's the playlist. (Sam had a hand in some of these since she became obsessed with the Garden State soundtrack)
1. If I Have To Go - Tom Waits
2. Call Me - Aretha Franklin
3. I Say A Little Prayer - Aretha Franklin
4. Dragging Hooks (River Song Trilogy: Part 3) - Cowboy Junkies
5. Kentucky Ave - Tom Waits
6. Kentucky Ave - Tom Waits
7. What Am I To You? - Norah Jones
8. Georgia On My Mind - Ray Charles
9. Don't Give Up On Me - Solomon Burke
10. Somewhere Over The Rainbow - Ray Charles
11. Tea For The Tillerman - Cat Stevens
12. A Whiter Shade Of Pale - Procol Harum
13. I Hope - Dixie Chicks
14. Teardrop - Massive Attack
15. In The Waiting Line - Zero 7
16. Don't Panic - Coldplay
17. Theme From Schindler's List - Itzhak Perlman
You can listen to 30 second samples of these songs on Rhapsody here.
The last nights before she died, I slept in her bed while mom slept in the hospital bed next to me. We ensconced pop on the couch where he wasn't woken up by the every-four-hours routine. If anyone had earned himself a break to be just a griever and not a caregiver, it was him. I'd wake up throughout the night and stare at her sheet, looking to see if she was still breathing. The night after she died, I was still unable to sleep after 2am medication time.
As the week goes on I become more relaxed about the entire process. I know it will end, but my sisters, even the one who lives out of town, complain loudly about the way this process is dragging on. We master a sort of black humor with the hospice nurse that is only appropriate in the shared confines of grief. One of the lessons I'm learning about grief is that you have to let people vent. They may say what you think are inappropriate things, but barring the presence of psychopaths in your family, they are only trying to give voice to a set of conflicting emotions.
I spent a lot of time this week teaching myself to think before I responded to things someone said that were obnoxious, since I was walking around half-cocked. One good example was when I was displaced from my bed for the arrival of a relative not a daughter of my mother. I bitched about it loudly once, but sucked it up since it's not my house.
After that I moved to my parent's bed and spent the nights next to my mother. Upon reflection on the first night, I realized I'd been given a gift in getting to be so close to her, for so long at the end. The ability to help out my pop by placing myself into the primary caregiver role at a time when he really needed it was rewarding as well.
I wouldn't trade those nights for all the comfortable beds in the world. After that I realized I was walking around waiting to vent my grief by yelling at someone, and I strove to count to ten before responding to perceived obnoxious commentary.
Most of my self-awareness came about because I knew this experience couldn't have gone on forever. I have no idea what happens to people who have family members in a coma without an attending terminal illness. I suspect they lose hope most of the time.
I'll post two more items, the text of the eulogy speech my sisters and I will be delivering at my mom's memorial celebration on Tuesday, and the text of the extended biography to be read there as well.
