The Mountain. {Part 13}

Author’s note: This story, at its essence, is about a mountain and the people who loved it. It is inspired by our experiences with the legal system, which are a matter of public record. However, I have fictionalized the details of this story  and the characters (except for my family), both for narrative convenience and for privacy reasons.  Also, I am not an attorney. If you are, and if you read this story and note that I have used the words “district court” when I should have said “appellate court,” well — perhaps, you should read a John Grisham novel instead. My point in telling this fictionalized account is not to discuss the finer points of the law, but to relate some of the life lessons learned by two ordinary people who were trying to achieve a modest dream and found themselves at the mercy of our nation’s legal system.

To read the previous installments, click here.

Twenty-four hours after my mother’s doctor told me she was going to die and to call my family, the visitors had come and gone from the ICU. I was alone again, watching the respirator pump oxygen into her lungs and fielding the occasional phone call from a friend or family member. Despite familiar movie and television images of matriarchs passing away while surrounded by large and loving families, I concluded dying was a lonely business indeed.

As I sat for hours in the ICU, I realized I had no information about my mother’s final wishes. She had told me she had a small life insurance policy, but who knew where the paperwork was. My sisters were more than a little disorganized and I didn’t think I could count on them for answers. Had Mom made any funeral arrangements? What were her burial wishes? I chided myself for not asking the hard questions months or years earlier.  I had often accused my mother of living her life in denial, but here I was sitting in the ICU with absolutely no idea about her final wishes and never once broaching the subject with her.

As the hours stretched into a handful of days, my mother’s organ functions began to improve. Her doctors and nurses seemed sincerely surprised she hadn’t died yet and was, instead, responding to treatment. On her fourth day in ICU, she opened her eyes and woke up. She was a little groggy at first, but then she started talking.

No one was more surprised than her attending physician. He told me he never would have guessed she could come back from complete organ failure given her age and condition. A day later she was moved to a regular room and was passed to a different doctor who would assess her recovery needs.  Mom was 80 years old and had just dodged a fatal bullet.

I had now been off work two weeks – one of which had been scheduled for vacation and a second one to attend to my mother. I called my boss and told her that to everyone’s surprise, my mother had not died. I said I would need another few days to figure out her prognosis and recovery plan. Unfortunately, as the days stretched into another week, answers were hard to come by. The good news was Mom hadn’t died. The bad news was no one could believe it and she wasn’t exactly bouncing back. All her existing health issues seemed to have been magnified as a result of her organ failure. She was no longer on the verge of death, but anything resembling health (or the modest state of health she used to enjoy) seemed long gone.  Nobody told me she was terminal, but I began to fear she would be bedridden for the rest of her life.

Looking back on my mother’s weeks in the hospital, the whole episode seems draped in a mysterious, stultifying haze. I often wonder if I am particularly ill-equipped to deal with serious health issues, or if everyone except medical professionals experiences feelings of ineptitude and incoherence in a similar situation. As August approached, Mom was still hospitalized with no end in sight and I attempted to go back to work. For days upon days, my routine was thus: I’d swing by the hospital around 7:00 am and stay until 9:00 or 10:00 am; then I’d go to the office and work for a couple of hours and return to the hospital to spend my lunch hour (or two) with her; then I’d return to the office to work a few more hours and go back to the hospital from around 4:00 pm to 10:00 pm. Then I would drive the hour home, sleep four or five hours, and start all over again.

During my mother’s illness, the preparations for our upcoming trial were more intense and demanding than ever. At one point in the middle of the summer, Mr. Mom and I made a pact to divide and conquer: he would deal with the lawsuit and its attendant stress without offloading on me; and I would deal with my mother’s illness and its attendant stress without offloading on him. It was the most lonely and difficult time of our married lives, but we were in survival mode and couldn’t see another way through it. There were days when he needed a shoulder to lean on – so great was the stress of the lawsuit. And I certainly needed a sounding board as I grappled with my mother’s health crisis without any input or assistance from any other family member. But each of us were stretched to our limits, and keeping the lines of responsibility sharply defined seemed the only way to eat the wild and very large herd of elephants charging through our lives.

Eventually, my mother’s doctor said he could no longer keep her in the hospital and talked about releasing her. She was still weak, terribly ill, and clearly unable to care for herself. I reached out to a hospital social worker to help me assess her options. She suggested a skilled nursing facility that we hoped would help my mother transition from the hospital to a longer-term solution. While Mr. Mom had been swimming in the deep end of trial preparation, I suddenly had to dive into the murky waters of Medicare, nursing facility options, Powers of Attorney, Social Security, and every other medical, financial and administrative detail related to my mother’s life. It was a crash course in “real life” and I was grossly unprepared and ill-equipped to navigate the unfamiliar territory. A year later, I would wonder why in the world no one had written a book titled “How to help your parent die,” filled with all the how-to advice and administrative details I had to figure out practically overnight.

In the middle of it all, I kept thinking I had to pace myself for the long haul. I had to tend to my job and I had to think long-term about my mother’s care. One day, my boss – who had buried both her parents and her husband – took me to lunch. After eating, she held my hand and looked me in the eyes and said “Joan, your mother is dying. Please don’t think about work. Do what you need to do in these last days with your mother and don’t worry about anything else.”

I thought she was so sweet for releasing me from work guilt, but I didn’t for one minute think she knew what she was talking about.  My mother was supposed to die and she didn’t. She hadn’t exactly bounced back, but she wasn’t dying, I thought. She had lived when the doctor said she wouldn’t, and now I simply had to pace myself for the next year or three of her health care needs. As a longtime manager, I knew the limits of the Family Medical Leave Act and knew I needed to conserve my time off. I continued to try to split my time between my office and my mother.

On one day that I will never forget, my mother was suffering from a terrible intestinal condition and she had an accident as I was helping her from her hospital bed to the potty chair. Because I had an important meeting later that day, I was dressed in a white linen suit and white sandals. The nurses had long gotten used to me caring for my mother’s toilet and hygiene needs so I hadn’t bothered to buzz them. My mother was horrified and embarrassed, but I told her not to worry. I cleaned her up, went to the nurses’ station for fresh bedding and remade my mother’s bed, then stepped into the restroom to clean myself up. Miraculously, I hadn’t gotten so much as a speck on my white suit. I left the hospital a couple of hours later to participate in what turned out to be a contentious and wholly unpleasant meeting. After it concluded, a co-worker pulled me aside and commiserated with me about the “shitty” attitudes of our colleagues. Then she asked me how I had injured my leg. I looked down and realized I had failed to clean some of the residue of my mother’s accident off my calf and it had hardened into what looked like a large and unappealing scab. I wanted to cry but I laughed instead. “Shit at the hospital, shit at work,” I said. “It’s all the same shit.”

As soon as Mom was released to the skilled nursing facility, she went downhill fast. In a matter of two weeks, she was transported three times by ambulance back to the ICU. It seemed like she was in a cruel purgatory – too sick to live, too well to die.  In the mean time, both my sisters had been hospitalized. I felt like a pastoral worker, making the rounds to the afflicted members of my flock, day after day after day. I was so consumed by my mother’s illness, I barely asked about my sisters’ conditions when I visited them. Despite seeking out little information, I could tell each sister was also terribly ill.

By late August, my mother had continued to deteriorate. One morning after she was transported yet again to ICU, she seemed especially frail and frightened. The doctor pulled me aside and said she was in a hopeless cycle and, rather than go back to the skilled nursing facility, she should consider hospice. I knew that was a code word for death. Still, I thought, she could linger for a long time. I told myself I needed to prepare for a months-long ordeal and I asked the doctor to send in another social worker who could talk to me about hospice options.

My mother was frail, but she sensed the gravity of the situation. She pulled her doctor close and asked him “What do you think? How sick am I?”  He responded that she was very, very sick. He said he had exhausted every remedy at his disposal and there was nothing left to do. “Well,” she said, “how long do I have?” The doctor thought for a long time then said quietly and slowly “It’s hard to say. Maybe a month.”

“Maybe a week.”

To be continued .  .  .

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Comments

  1. I hear you on the need for a book on the topic of assisting a parent through the process of dying – because it is so often a long drawn out process with so many decisions needing to be made. Problem is, everybody is in such different circumstances, covering the many options might make for a pretty daunting page count. (You ought to write it anyway.)

    I recognize your schedule as one I followed for 5-6 weeks the summer my mother died. Up early to the hospital, work for a few hours, lunch at the hospital, work for a few more hours, back to help with hospital dinner hour, home to collapse for a few hours of sleep. Weekends split between trying to get EVERYTHING done at home then a similar attempt to get EVERYTHING handled for another week at the hospital. It is brutal. On everybody.

    My own Mom died the night before she was slated for transfer to a Rehab unit where they were going to work to strengthen her prior to being released back home. Fact is, most physicians often can’t really tell if a patient is going to die, much less when. There are always outliers who survive against all odds and then others who surprise everybody and slip away unexpectedly. My Mom did both by turns. Always the over-achiever….

  2. Maridel says:

    Joan, Your sharing of this story is cathartic. My Mother’s death was sudden and she had everything in place. I had very little to do besides empty her apartment of personal belongings. This still feels strange to me.

  3. What an incredibly trying and sad time in your lives. 😦

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