Writing in the real world

The story of my mother's death is many stories. For my sister, perhaps, it is the final act of the decades-long fading away of my mother's emotional presence in our lives, the painful mystery of her lack of connection (was it the soul-wounding divorce of her parents when she was four, her alcoholism, her temperamental distaste for conflict, her growing inability to remember not only the train of a conversation but also the details of our histories?). For my brother the doctor (a phrase that recalls My Mother the Car), it is at least in part an object-lesson in the medical ethics of end-of-life issues: how to determine competence to make medical decisions when gravely ill patients suffer from some degree of dementia, how to manage communication between medical staff and family, how to weigh terminal care documents in emergency situations. I start here, now, from the safe distance of my own professional analysis, looking at and thinking about the written record of that week in April.

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It started with emails, from me to my brother and sisters spread across the country, hundreds of miles away, keeping them up-to-date on her brief hospital stay for pneumonia and apparently-related atrial fibrillation:

Sat, 29 Mar 2008
Hi, guys--

Latest word is Mom is (supposed) to be discharged tomorrow afternoon. I talked to resident again this afternoon and he said she was doing fine medically, though still on meds to regulate heart rate. PT and social worker, though, feel that she needs to go into rehab for "a while" because of all-round weakness and cognitive impairment.

Wed, 2 Apr 2008
Hi, all--

Mom seems to be settling in, looking a bit stronger every day. She was sitting up in chair and fully dressed when I went in this am and she's getting up to go to bathroom and move around the room. We had the intake conference this afternoon--I was surprised (and dismayed!) to find out that her ETI (estimated time of incarceration) is 4 weeks!! Which seems like a long time to recuperate from a 4-day hospital stay...but I guess that will give them some time to assess where she goes from here

Mon, 21 Apr 2008
Hi, guys--

It's been an eventful day--finding out a few things about Mom I should have known earlier. I finally got a chance to talk to nurse practitioner today. Apparently they did a chest Xray a week or more ago after 1st course of antibiotics to find pneumonia hadn't cleared up, so she got put on 2nd course of antibiotics, this time of augmentin. I found out from her roommate that she's been having diarrhea for a week or so--I had talked to nurse a few days ago and they gave her some kaopectate and said that was a common side effect of the antibiotics. Diarrhea has been continuing, so they're worried about C. diff.

Tue, 22 Apr 2008
Hi, guys--

Mom was transferred to ER and admitted to hospital last night because CT scan of abdomen showed inflammation of colon (pretty much entire colon involved) and she had white count of, I think, 29.  She's on IV fluids and combo of two antibiotics, which may take care of C. diff. but not damage to colon caused by C. diff. toxins.  Surgeons may want to recommend colectomy if damage is great. JD thinks she's a very poor candidate for surgery because of COPD and dementia, that best possible outcome is a nursing home and bed-to-chair existence, and that she wouldn't want such aggressive treatment (though we don't think she's really competent to make that decision now for herself).  The main attending said she's probably going to get quite a bit worse before/if she gets any better.

As writing teacher I  might try to define, perhaps, my  email-style here:  more workmanlike than usual (for me) with its informational intent, more attentive to grammar and punctuation than usual (for others), studded with my standard, lurching parenthetical asides. (And contrary to my demands for student research papers, I note my own reliance on wikipedia.) As daughter and sister and caretaker, I was simply grateful for the convenience technology affords.

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Because surgery was not considered an option, the medical students on the geriatrics service had been scouring the literature and offered this somewhat unconventional option: in euphemistic terms probiotic therapy (the med students offered my brother and me xeroxes of peer-reviewed academic articles, but I was interested to see another blog-genre). In plainer language, a stool donor would offer a sample that would be (through some sort of enema-like process) inserted/implanted/infused into my mother's damaged colon in order to replace the "good" bacteria which had been wiped out by her courses of antibiotics; in cartoon-like fashion these good bacteria would attack the nasty C. diff. bacteria. It sounded reasonable, sort of. And I was the chosen donor. There's a nice symmetry to it, I said to my brother, laughing, as we walked down the basement corridor in the hospital, looking for the stairs up to Au Bon Pain and our frappuccinos and almond croissants. After all, she breastfed me. I saved it up, that nugget of a connection, kernel of a poem, idea for a lead.

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On Thursday afternoon my brother and I were still emailing, but this time side by side on the two computers in the surgical waiting room. We had called our sisters to explain that, despite a heated confrontation and our stated wishes to the contrary, the surgeon was in the process of removing Mom's colon, having obtained from her what he considered to be an informed consent. (If I don't take our your colon, you will die. Do you want me to take out your colon?, to which she replied Well, everybody's got to die. Then OK, I guess so.) In order to prevent monopolization of the computers, the browsers were set to shut down every fifteen minutes. We composed fast explanations to co-workers and supervisors to explain our absences and look for coverage. The hands of the waiting room clock were frozen at one o'clock; I kept flipping open my cell phone to make sure that time was passing.

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I had for years known that I would write about her. When I talked to my students about what we used to call the rhetorical modes, I invited them to imagine a mysterious something appearing in the class and asked how we would come to know about it, how we would describe it to others who had not been so fortunate to be in class for the big day. The mysterious something I imagined would always be her. I would describe the dining room her world shrunk to after my father died: the red chair she sat in to watch baseball games, the corner cabinets filled with Spode china and silver serving pieces she never used anymore, the bags full of other folded up bags and paper for recycling that she'd torn into palm-sized scraps (she was the best recycler in town, the sanitation crew had told her), the plastic bins of extraneous medical equipment (tubing for her oxygen concentrator and my father's catheter, empty pill bottles, old eyeglasses), the jugs of sherry tucked at her feet (one empty and the next freshly opened). I would narrate stories conjured from her box of photographs and the hints she'd given me that would explain the sadness she wouldn't talk about and didn't seem to understand.

As my mother's memory failed (so that a few weeks before her death she could not name a picture of an octopus or a tennis racket) and conversations became an endless loop of reminders and reassurances, I started stockpiling books about Alzheimer's (which she did not have, as far as we know) and cognitive science: source material for the capstone research paper I imagined writing some day.

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After two days in the trauma ICU, they get her off the ventilator. By then she has been pumped full of a dozen liters of fluid so that her face and fingers are swollen tight, and I have learned to read the significance some of the pastel numbers on the monitor, the drip rates on the IV poles, volume of urine produced per hour, values of her white count and the pH of her blood. But my brother repeats, Treat the patient not the numbers. My sisters fly in for the weekend to see her. My mother's eyes are open, a few times someone claims she squeezed his or her hand, her forehead furrowed in pain or confusion seems to smooth when I talk to her, but I am not sure that she's there, really.

When her oxygen levels drop the next day (Sunday) and the doctors want to put her on a BiPAP machine, a hockey-mask like contraption that will mechanically support her breathing, we say that is enough and that her DNI wishes should be honored. The surgeon says the operation has been a success and that we seem upset at how well she is doing. Doctors crowd her room, voices raised. My brother demands an Ethics Committee hearing, which is scheduled for the following day, then postponed until Tuesday.

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Back at my house that evening, my brother and I try to collect our thoughts on paper, to figure out how to make the argument that our mother should be allowed to die. We don't put it that way, quite. The social worker has told us that we need to speak for her, to explain what we know of what her wishes would be in this circumstance, to speak from the heart. The Committee will be health professionals, lawyers, ethicists, lay people. Audience and purpose and genre have sudden and sharp significance.

I can only manage to scrawl some details on a yellow legal pad about her loss of dignity and independence, fading connections to people and the world and some questions: what constitutes quality of life? what would be acceptable to her now? what would have been acceptable over the totality of her life? is it my judgment to call this  unsatisfying? what was she like as a person? My brother, on the other hand, through several drafts carefully builds an argument that describes her love of playing bridge and gardening, of Irish music and literature (fitting in a quotation from The Tempest that he double-checks in Bartlett's Quotations as she taught us during so many dinner table disagreements), and he repeats what she has said to us about not wanting to die in a hospital room on a ventilator, about not wanting to fight as hard as her mother did in the aggressive treatment of her lung cancer, as our father did in his last year of life, walking up and down in the driveway, then back and forth in the living room with his catheter bag and IV pole. My brother breaks down several times as he reads the statement to the Ethics Committee, who support our position without debate, several of them hugging me on the way out to say, You're doing the right thing. Your mother would be proud of you.

After they unhooked the lines and machines, I stroked her gray hair, remembering her hand on my teenaged head after we stopped saying that we loved each other. My brother put his arm around me and said, Here we are again. She died in about half an hour.

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My brother drafted her obituary from his Ethics Committee statement. We passed it back and forth between the four of us by email, correcting and adding and changing and editing as our parents would have wanted.

Comments

[joanna]

I don't have a comment--I wish there were an emoticom for bearing witness. It sounds like you're blocking out (as in planning, not avoiding) what you want to write about but are too understandably exhausted to write in any but a detached way. Sending positive thoughts to you,
J

[Holly]

Thanks, Joanna. You're right about the detached part--I don't feel like I've dealt with everything on an emotional level yet. My brother, sisters, and other family and friends are getting together next month on the Maine coast to scatter ashes and have a memorial gathering. Perhaps that will help make things seem more real. (And I am planning on taking a seminar on memoir-writing this summer, so you're right about the blocking-things-out aspect.)

[Elizabeth]

I am sitting here weeping at this entry, so touched by your perfectly narrated story of forwards and backs, ups and overs and throughs. It's a mirror to what we did with my husband's father, but didn't have the presence of mind to have an Ethics review--we could only watch his struggle at the edge for another painful 5 weeks.

I've read most of your blog today, another English Teacher Without An Office-type person, another CRWT grad.

Thank you for your writing.

[Holly]

Thanks for the comments, Elizabeth! The thought of yr having to go through five weeks (!!) makes me sick at heart. I am so grateful that my brother is a doctor--without that insider's knowledge of how things work I don't know what I would have done or how I would have gotten through it. He's started to write about the experience himself, hoping that he can educate people about these difficult end-of-life situations.

[windshield repair]

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