Wednesday, November 10, 2004

Death Watch

This may sound strange, but the extended wait for Palestinian leader Yasser Arafat's impending death has me thinking about my mom's death.

In some ways, the two situations are in stark contrast. Virtually the whole world is aware of Arafat's hospitalization and coma. Nobody was aware of my mom's final hospitalization and coma except a few family members, a couple of caretakers and health care professionals, people at the cemetery and funeral homes, and the small congregation at the 5 PM mass at St. Michael's. Arafat is reportedly on life support. My mom wasn't. Arafat's power and money are already being fought over. My mom had none of either, and there was no controversy over what little she did have. Arafat's coma has dragged on day after day, marked by rumors and speculation, and by reports of a brain hemmorhage and that the coma has deepened. My mom's coma ended in death less than 24 hours from the morning her caretaker was unable to wake her up.

 But beyond that, there are deep parallels. Nobody seems to know what caused Arafat's condition, but they've reportedly ruled out cancer and poison. They didn't know what the problem was with Mom, either, but they had a few suspicions. There were decisions to be made: life support or not? Is it too soon to make specific funeral plans? Who will wait with the patient, and when? How do we balance family and personal concerns - love, protectiveness, grief - with external forces of the world's demands? Most of all, the fact of impending death was assumed, but in the meantime there was a period of waiting, introspection and practical arrangements to be gone through, with no clear idea when the waiting would be over.

Here's the story that you know is coming.

It was a Sunday morning in the middle of December, 2002. I was on my way to church when my cell phone rang. John was on the line, reporting that Rosa had been unable to wake Mom. When the paramedics arrived, they decided to take her to St. Joseph's Hospital because it was closer than Tucson Medical Center. This was handy for me, because St. Joe's is next door to St. Michael's. I actually got there before the ambulance did. I sat there crying, as I hadn't cried in all the previous medical emergencies. Even before I saw her on the gurney, looking shrunken and alien, not like herself at all, I knew this was the end.

My Mom (standing) with Aunt Flora, circa 1990. Photographer unknown. It had been a tough couple of months, in a very tough year. The previous Christmas, she'd been depressed and hopeless at a nursing home after a colosomy. Since then she had been in and out of two apartments, two rehab and nursing facilities, and finally in an adult care home. She'd stopped walking, stopped reading, stopped everything except smoking and tv and daily visits from me. Since her birthday outing to a Tony Bennett concert on October 6th, she'd lost considerable ground, being only half-conscious for days or weeks at a time. On Thanksgiving I'd watched helplessly as she repeatedly brought her empty fork to her mouth, saying that she couldn't see the food. She'd been to a neurologist, a psychologist, a psychiatrist and her family doctor, who had different opinions about the right mix of drugs. The neurologist's contribution was almost certainly a major factor in her flopping like a rag doll in my car or her wheelchair, but she'd been catatonic at least once before, probably as an escape from a life she no longer enjoyed or wanted.

As I waited in an ER cubbyhole with Mom, they put her on an IV, started tests, and asked me questions. Her breathing was slowing. Did I want her on a respirator? I didn't know. I only knew that she wanted a DNR (Do Nor Resusitate) order, and that she didn't want a feeding tube down her throat, because of the way her sister Flora had spent the last months of her life essentially choking. The doctor told me that once she was on a respirator, it was hard to get her off it again. As I tried to remember where I'd left the living will (at my office at work, it turned out), I did my best to match what I remembered of her preferences to the questions at hand. No respirator, I decided.

The doctors suspected either overmedication or a stroke in the back of the brain. I was sure it wasn't overmedication, because we'd discontinued the one from Dr. F. They tested anyway. Nope. Stroke, then. It wasn't her first one. I had to push to get a straight answer on the prognosis. No, she wasn't going to wake up, much less recover. Yes, she was going to die, some time in the next couple of days.

I spent the rest of the morning and most of the afternoon in the ER, except for a nervous hike over to St. Michael's to tell Father Smith what was happening. He came by shortly thereafter. He'd already given her last rites once, but he prayed over her again. At five I walked back over to St. Michael's for the half hour Mass. Father Smith dedicated the Mass to her.

Eventually I tore myself away from the hospital for the necessary tasks that lay before me. I had to go to the office to find the living will, and make a copy for the hospital. When I looked it over, I knew I'd made the decisions Mom would have wanted. I finally reached my brother, who would fly out the next day. (He actually didn't fly out until Tuesday, and my mom's estate paid for the ticket.) I had something to eat, and talked to a nurse on the phone. Mom had been moved to a room. The nurse would call if death seemed imminent, but I probably had time to sleep. Visiting hours were over anyway. I also had a paper and team presentation due the next evening for the last class of my first University of Phoenix course. I tried, but I couldn't concentrate on the paper enough to improve it much. My last conversation with my mom had been mostly me complaining about my UoP instructor.

I was back at the hospital first thing in the morning. Dr. Lorenz (Mom's doctor and mine) advised me on the phone to skip class, but that meant an automatic full grade reduction. I left a message for my instructor explaining the situation, but said I'd be in class. When I got to the hospital room, a nurse told me it wouldn't be long. As I talked to my stepmother on the cell about my dad's $1100 airline ticket - he'd be arriving in Tucson during my class - a different doctor waited to talk to me. He threatened to move my mom to hospice if she didn't hurry up and die. Bed space was needed for people with a chance of survivial, and hospice people were trained in pallative care. I could not believe the gall of this guy. My mom was in a coma, and not expected to last the morning. She didn't need pallative care - meaning painkillers. She needed about as much further time in his precious hospital bed as a hooker needs at the No-Tell Motel.

After that lovely conversation, I called the funeral home and the cemetery as the Lord's Prayer blared from the hospital's public address system. It was very surreal and upsetting. Then I rushed back into Mom's room. I tried to look at my paper for class, but it was hopeless. Dr. Lorenz had suggested that I talk to Mom,and give her permission to die. I felt weird about doing this, but I did it. After a while, it was evident that Mom was hardly breathing at all. I went into the hall and found the nurse / P.A.  "I think this is about it," I told her.

She came in and used her stethoscope. "I think you're right," she said. We chatted for a minute or two, I forced out a few more words of love directed at Mom, and strained to see any sign that Mom was or was not still breathing. It was exactly like my dog Noodle's euthanasia the year before, insofar as I could not be sure what I was seeing. I looked to the nurse to confirm what I almost knew. My mom was dead. Sad as I was, I was also terribly relieved. Two years of hell had just ended.

Karen

Ruth Anne Johnson tribute page

1 comment:

ondinemonet said...

Hello :)

Hi. I lost my Mother a year ago this past week to Alzheimers and like in your case only a few people knew. I wasn't told until she had been gone for nearly 6 weeks. Long story. Anyway, I think I can realte to what you wrote. It's is a stange feeling. Please know I am so sorry for your loss, but I can understand the feelings of relief. Take care.

Always, Carly :)