Snow
by Pat McQueeney
NOTE: As part of the sabbatical project I have written a 75-page draft of my mother's last days. At this point the draft is a factual record of events, drawn from fairly contemporaneous journal entries. I'm still too close to events and too emotionally engaged to give the material a writer's perspective. Below is a draft of an article-length memoir culled from journal entries.
In typical eastern Kansas fashion, our mid-December weather was fluctuating dramatically. Only yesterday I had been comfortable in a sweater sitting with my family at the Lawrence Country Club watching ominous clouds herald the weather change that was now slowing my drive. This morning I was straining to see through the steadily falling snow as I trekked the bone-chilling two miles across town to Mom's room in the Palliative Care unit of Lawrence Memorial Hospital. "Focus," I reminded myself, as my thoughts vacillated between grim reality and my other—analytical and perpetually paranoid—thoughts. "Mom might well not be with us on Christmas" competed with "What should I wear to gain the respect of the staff?" "Mom looks uncomfortable on her side" fought with "Are there questions the doctor is expecting me to ask?" "Got to get to the hospital" battled with "Just my luck to have a wreck." My lack of focus on Mom's plight filled me with guilt—as if more attention to her would restore her health. I was noticing, however, that I seemed to need the mental escape that my wavering thoughts afforded.
Somewhere recently I heard a writer comment that in crisis her inner voice emerges as a sort of coping mechanism—as an explanation or critique or comment on what is difficult for her to deal with overtly. Hearing that was a relief because her inner voice matched what I think of as my Other Voice. Ever since my mom, Millie, first went to the nursing home in June, 2007, when situations have been stressful I find myself constructing the narrative that I am observing while, at the same time, being in the middle of the situation as a participant. Over these months, I've been operating from two perspectives at once: while I was engaging in events as the daughter and caregiver, I was also viewing and analyzing these things through the lens of an outside observer. Part of that is the English major in me, I know, but part of it is a way to control my environment, I think--environments that have frequently felt foreign over the past year. Dealing with her nursing home environment was like dealing with a foreign culture. Now, Palliative Care was yet another foreign world as Mom lay dying from the aftermath of a massive hemorrhagic stroke she had suffered December 10.
The Saturday before Mom's stroke, the two of us enjoyed an afternoon with Santa at her nursing home's Christmas party. I brought a goody bag of gifts for her: hand lotion, a bracelet, a pin, gum, candy, and Kleenex in a bright green Christmas oval box. The afternoon was so pleasant for her that she asked me to write the recreation director a thank-you letter for such a nice event. The note sat on my kitchen table at 6:00 a.m. the next Monday as I rushed out the door to the ER. The Sunday after the Christmas party had been foggy with danger of black ice, so I had stayed home, but Mom and I chatted three times on the phone, the last time when she called me at 7:30 p.m. to say that the aide was helping her get ready for bed. She reminded me that she had had a good time the day before, but told me that she had a headache now. We parted with a "Love ya," and that was our final conversation. She uttered only broken, slurred phrases to me in the days after.
Now, on this Saturday,
December 15, I sat in the chair at the side of Mom's bed in Palliative Care knitting on a
muffler she wanted to give to her hair stylist at the nursing home. I couldn't
help but admire how these rooms were furnished for the families as well
as to accommodate the dying. A double hospital room had been re-painted a soothing pastel
green and turned into a large single-bed room with a fold-out couch, reclining
chair, computer, microwave, refrigerator, and restroom with
shower. In hopes that sounds would be soothing to Mom, who moved in
and out of consciousness, music was often piped into the room, either via the cd/tape
player or the local cable station, which was playing holiday music most of the
time.
The stroke's damage had been "devastating," to quote the doctor's under-the-breath comment to himself. He and the social worker had met with my brother and sister in law, John and Ann, and me the previous Thursday to discuss her/our options. The day before, Dr. Barr had apprised me of the seriousness of her condition: barring a miracle, the damage done to her brain and speech and swallowing could not be repaired, especially in her 97-year-old body. She could survive only with life support.
"This is when those pieces of paper have meaning, Pat," the doctor had told me in his clinical tone. He was taking care to maintain a neutral voice, but the irony of his statement was lost on neither of us. He knew my profession--that I am someone who pays careful attention to the function of "pieces of paper," as he put it. Although he was giving me no help in the decision making, I trusted him because over their 15 years as physician and patient I had witnessed what had become a mutual admiration society between this man my brother's age and Millie. He admired her toughness and candor, and she trusted him, even to the point of revealing feelings to him that she would to no other. More than once I waited until we got to his office to ask a question that I knew she would answer only for him. Occasionally, he and I would intuitively move to a good cop/bad cop routine to help her. He had really wanted to get her to 100, and she had had the confidence that they could do it together. "This is a decision you and John have to be comfortable explaining to his sons now," he reminded me, "and ten years from now. Spend some time talking it through, and call me if you need me," he said, as he walked away to continue his rounds.
I'm not good with things medical. I don't like pills, and I avoid doctors whenever possible. Throughout Mom's years of deteriorating health, I did my best to provide for her, but I always felt a bit guilty that maybe I wasn't developing the expertise in geriatric medicine that some of my caregiver friends were cultivating. I guess I thought that if I studied it, I would be confirming that she was having problems. That's not very logical reasoning, I realize, but, put bluntly, I couldn't deal with it. Most of my caregiver friends did not live with their parents. Mom and I were together 24/7 except for when I was at work. It was enough to deal with the day-to- day matters in our life together. Over the 29 years that we shared a home, I had become an advocate for her and a reliable meds monitor, a great friend, and a loving daughter. But my Other Voice always challenged me that I could do more and always questioned whether doctors and professional caregivers thought a responsible daughter ought to know more about medical matters than I did.
I'm not sure that additional education would have mattered much on this end-of-life issue, though. In fact, I had done quite a bit of reading on advance directives while grading student papers about the debate spurred by the Terri Schiavo case a few years ago. At a family dinner, my younger nephew, Michael, who is my power of attorney for medical, raised the end of life issue. "So, what's it going to be, Aunt Pat?" Michael asked, somewhat flippantly, but with a certain seriousness as well. After discussing the complexity of the Schiavo case, we agreed that less is more. Mom was in the middle of the discussion and in total agreement. So I had the information, the intellectual side of the equation, and I had her living will that she had signed 15 years ago. But logic doesn't account completely for the emotion of making that decision for someone who is still conscious.
I was especially grateful during this time to have John, my brother, with me. Six years younger than me, he assumed responsibility for the family business--an industrial distribution operation--while I took care of Mom after Dad died in 1978. John always found it difficult to deal with Mom's health matters, but he did his best during these last days. After spending Wednesday talking with John, struggling with myself, second-guessing my motives, and considering the finality of it all, a long phone discussion with a close family friend, Sister Pat Lynch, gave me peace and placed me in the same mindset that my brother had had from the beginning: "We need to think about her, Mary Pat, not ourselves." In the end, it was science that confirmed the correctness of this moral decision. The MRI that the doctor shared revealed that parts of her brain had basically exploded. I had never viewed an MRI before, but when I saw the damage, I knew I was seeing something horrific. There would be no recovery, and she definitely had never wanted extraordinary means taken to keep her alive in this sort of situation. We agreed that she would enter the comfortable environment of Palliative Care at Lawrence Memorial and continue to receive hydration until after her grandsons' last visit. After that, hydration would be removed, but she would be made comfortable with sedatives through this last stage of her life.
Being Gram to John William, 27,
and Michael, 25, was the most important thing in Millie's life. And they
viewed her as an anchor in their lives. She was on their speed dials, with
each one checking in at least once a week, Michael with "Hola Grammie" and John
with "So, how's the wonderful world of Grammie?" But now John W. was in San
Antonio training to be a McDonald's owner operator, and Michael, a partner
with his dad, was in Asia on a business trip. After several international
phone calls, it was arranged that John W. would fly from San Antonio to Dallas,
meet Michael, returning from China, and together they would fly to Kansas City on
Friday December 14. Ryan, Michael's fiancée, would meet them, and the three would come to
Lawrence. That would bring together the children and grandchildren, except for
Katie, John W.'s wife, who was eight months pregnant and unable to travel.
That last visit occurred mid-morning. Mom recognized the boys, and even said to Michael, "You're back." As she struggled to speak to him I thought of only a week before. I had been in her room when Michael had called from Seoul, South Korea. She had cradled the phone in her hand and chatted with him as she would with a neighbor, asking about time and date differences, weather, food, and all those things grandmothers ask about. Today, she had great difficulty forming any word because her tongue was swollen and had taken on the shape of a cigar. Still, she managed to speak with Michael and John W. as well. Soon she grew tired, though, and we left, never to be together as this group again.
Not knowing that at the time, John W. and I drove to the Lawrence Country Club, meeting the others for lunch. On the way, he commented, "You know, Aunt Pat, we have no right to ask for more than we got. Ninety-seven years. We got a lot." He was right, but it was difficult to deal with, and I knew he was saying that to convince himself as much as to console me. Our lunch was pleasant, though quick as we watched the cold front roll in. John would make it safely to San Antonio that day before the weather shifted too dramatically. But, as the cycle of life would have it, he would miss Gram's funeral when his first born, Jack, arrived on December 26, twelve hours before Mom was buried on December 27.
After the stress and fatigue of the day before, on Saturday the steady, wet snow was a welcome, soothing sight out the windows that formed one wall of Mom's room. This top floor view was pretty and almost relaxing, especially through the lights of the fiber optic Christmas tree sitting in the windowsill—one Ann and John had purchased at the hospital gift shop. The symbolism of the snow was not lost on me as I sat there. Friday had had a finality to it that was strangely calming to me. We had needed to get the boys to her, and that was done, and John W. had gotten back to Katie. So now I was ready: what would happen would happen. Just like the snow that I couldn't control, I would try to embrace the fact that what was happening now was beyond me, I decided. I was out of my environment, and I knew it.
While soothing, the snow reminded me of how isolated I was. Here, at this moment it was just Millie and me, though I took consolation that the specially trained staff was always just a few steps away. After a week of tremendous stress and rapid-fire, life-altering decision making, I took the occasion to enjoy the solitude and to tend to her in the best ways I knew how. I spent much of the afternoon alternately knitting and stroking Mom's face or rubbing her hands with the lotion she had received at the Christmas party. She looked so fragile lying there. She had been scheduled to get a perm on December 17, so her hair was longer than she liked it, but as white as always. And her face was amazing--not a wrinkle. Most of the time she slept, but, occasionally, she would grip my hand, and she always smacked her lips when I put my peppermint-flavored lip balm on them. These things I knew how to do well.
Still, I wasn't accustomed to this world of being the patient's daughter, and I was uncertain of what was expected. Some of my friends had told me that they camped out with their parents when they were hospitalized. I had noticed that the daughter of the woman in the next room wandered up and down the hallway in her flannel pj's at night. Was round-the-clock presence expected? If it was, I wasn't going to meet expectations. By this point in the year, I was exhausted from having tried to negotiate the nursing home culture while working full time teaching community college English. John and Ann lived in town and were doing their part, but he had a business to run (though his employees eventually banned him from the office until Millie no longer needed him), and Ann had family matters to attend to. While my Other Voice created dialogues of what people were thinking about my care for Mom and what a conscientious person would ideally do, I decided that I would be useless if I collapsed. I ignored what others might do or think and developed a routine of being at the hospital for Dr. Barr's rounds and then returning later in the day. I concluded that there was nothing I could do overnight that this staff couldn't do better, so I returned home just before bedtime each night for a late supper and bed. In between, I finished my students' finals that week, walked my dog often for our mutual benefit, updated family and friends, and began to plan a funeral.
Adding to my disorientation that Saturday afternoon was the sense of alternative reality created by the television view juxtaposed against the scene out Mom's windows. As the cable played its carnival-like music--surreal enough--the channel's city camera panned to nearly the same angle that I had as I was looking out Mom's window. What I saw on television was what I was looking at out the window. The real and the virtual were colliding. The dimmed lights in the room and the fiber optic tree cycling through its array of shades only added to the illusion. If only this all were as fictional as it felt at this moment.
Sometime late in the afternoon vestiges of fiction ended. As I was curled up knitting in a corner, the nurse entered, and, as usual, checked Mom and then moved to check Mom's i.v. drip. The i.v.? There should have been no i.v. I had been consoled that invoking the advance directive was a group decision and that we had finalized it on Thursday. John, Ann, and I had discussed it, and we had talked with John W. and Michael as well. The issue was resolved. But there the i.v. was—dripping its life-sustaining liquid. My understanding had been that Friday was to have been the last day that Mom would receive hydration—that, once our family gathering was over, Nature would be allowed to take its course. Suddenly, in the midst of this quiet, snowy, almost hypnotic Saturday afternoon I was brought back to reality by that clear bag of fluid. I realized that that piece of plastic was what the living will was all about, and that the actual implementation had fallen to me. At that moment, I felt as alone as I ever want to feel. "Excuse me," I said to the nurse, "I thought hydration was going to be ended by now." Even as I asked, I wondered, "What do the nurses think about this? Am I seeming like some sort of ghoul to this person?”
"Oh, I didn't know," she said. "I'll check the orders and follow up with Dr. Barr's service, if necessary." As this nursing team so often was, she was sensitive to the significance of my inquiry. She appeared to understand that I desperately didn't want to revisit this decision, and she didn't appear to be judgmental. Soon she returned with a "no problem" authorization from Dr. Barr's partner, who was on call.
"No problem," he had said. On the one hand, "no problem" uttered by someone who had never met Mom trivialized this life-and-death decision terribly. More realistically, though, Dr. Barr likely had apprised his partner of the situation in advance. And perhaps Dr. Barr, ever the ethicist, had intentionally not filed the order so as to make me think about the act one more time, rather than allow the decision to occur passively.
"No problem." So simple. The i.v. drip stopped.
The snow kept falling; the music kept its soothing cadence; and the fiber optic tree filtered its aurea borealis light show across the walls of the dimly lit room. I sat for a while more, lulled by the music and the snow. Finally, I got up and did the only things I knew to do: I brushed Millie's hair ever so gently, rubbed her face, and put cream on her hands.
Mom died December 20, 2007, two days after her 97th birthday and two hours before the anniversary of her mother's death. She was buried December 27, twelve hours after her first great-grandson, Jack, entered the world. (She had announced in September that she would not be here when Jack, my dad's namesake, arrived.)