October 7, 2001
[Cleveland Heights OH]
Dear Aunt Mildred,
[Anoka MN]
I drank too much coffee yesterday and was up half the night. I tried to write but only cleared the last letter off the computer to start this one. I just couldn't get my thoughts organized but I couldn't get unconscious either.
On August 9th we had a relatively simple morning. We had all slept fairly well and Nat in particular slept late. We fixed a special breakfast of eggs and fruit and toast with all the jams and jellies out for people to use up those already running low. The ICU wouldn't let anyone in until 11 AM, so we had time to catch the mail before we left for the hospital. The dogs were properly walked and we sent e-mails to our friends telling them what happened.
The ICU was easier to get to than Jean's room at Lakeside. It was located in a section of the Lerner Tower (Lerner owns the Browns but gets his money from MBNA credit operations), a newer building with better air conditioning and less comfortable seating. Families were required to sign in to the waiting area and keep their ruckus down insofar as practically everybody was there to watch someone die. We knew there would be plenty of us soon, so we nailed our turf as one of the former counseling rooms that sat ten.
Andy and I went in first, I think. She hadn't changed in any way. The chest heaved in its regular fashion; the screen showed no changes. Her eyes, which had been open since the day before, were now glazed over and liquid-like. Nurses explained that they apply a clear paste to keep the eyes from drying. What we thought might be tears was science, more precisely, medicine. To me it was comforting. Had they been tears, I would have been shattered to know she could feel but not move.
We talked to her on the possibility she could hear and understand but without conviction. Nurses stated she was responding to nothing--not even pain stimulation as we had been mistakenly told. Somehow I knew she was already gone, that she had died when her heart stopped on Wednesday. She was still cold and clammy. The only comfort was thinking this horrible event would soon end.
I can't remember how many people came to see Jean that day. So many said they were sorry they hadn't known she was ill until it was too late. Several grown men cried in my arms. It puzzled me how those removed from the scene could feel so broken and we, who had been in the thick of it, were feeling relief for the first time in a week. Everyone who went in emerged visibly upset. Jean was so grotesque, so swollen with tumors, and felt cold as the dead anyway. For me these days had more the character of a wake than a hospital visit. We simply told and retold the same story.
Interestingly, my niece Jennifer, who had been so distraught when she first saw Jean on Sunday, had calmed considerably in the presence of her cousin Nathaniel and kept close by us. It was easiest for her to visit as her job was very nearby and her apartment was on campus. I can't remember what occurred all that day except for the visit of Pat Ross, an artist friend of ours from when our children went to school together. Pat had become a Patient Relations Specialist (read: she mollified complainers). I had met her husband Curtis again the previous year; he had become a teacher for the Cleveland schools. She gave us discount tickets for the hospital food service and free parking privileges. I had run into her in the halls earlier that week (I think Monday, August 6) and told her to see Jean as soon as possible while she could still communicate.
I received your letter of 10/6-7 and by now some of your questions should have been answered.
Visitors took up most of our time Thursday and nothing special happened. We said good night to Jean, whose condition was unchanged except for needing more blood pressure medication to keep her functioning. I'm not sure what we did Thursday night. I think Andy's girl friend came up from medical school in Akron and we got some videotaped movies to watch. We tried for something lighthearted and ended up with murder mysteries.
Friday we knew was decision day. Sunday I had given the hospital a copy of Jean's living will. They knew as we did that all criteria for terminating supports were already met. Jean was in a coma from which she would not emerge and she was suffering from a rapidly progressing terminal illness. No one knew if continuing pain medication was needed since she wasn't responding to any stimulation.
Ms. Park came again to visit Jean. She had been there Sunday trying to give us all some hope. She had known Jean only briefly as the lady of the house who had recently taken a leave of absence from work because her back hurt so much. A month earlier Jean had helped her sign a lease for Andy's room. Jean had been more active then. When Ms. Park moved in, she knew Jean as the lady who sat in the lounge chair most of the day, exhausted and in pain. Now she was at the ICU and Jean was clearly without hope and unconscious. What a vast change. Ms. Park brought her some miniature Korean shoes to pin to her gown as the most important gift a Korean visitor could give--the greatest wish for someone's good in life. She left in tears.
Visitors continued. Most knew the end was very near. No one asked about recovery. Andy had arranged for us to meet with the director of the Neurological ICU one floor up. It was often this doctor's job to counsel families to terminate life supports on brain-damaged teenagers hurt in auto accidents. Often in such cases the body looks perfect but because of the brain damage there was no possibility of recovery.
We [Andy, Emily, Peter, Nat, and I] met with the neurologist in a room adjacent to the ICU waiting area. He reiterated Jean's brain had been without oxygen for twenty-four minutes, four times longer than is common with injured persons who regain consciousness. Even with cardio-pulmonary compressions keeping the blood flowing to the brain in a diminished capacity, the oxygen level of the blood was way too low to keep the brain from beginning to die. He clarified were it his wife, mother, or daughter he would not hesitate to withdraw supports. We asked a few questions and he left us to decide.
Everyone understood there really was nothing we could do to help Jean live but we could help her die. I don't think anybody thought we were moving too soon. We had been told that most people who recover do so in 48 hours. We had waited that long with no sign of change.
I told the rest of the family that whatever their vote the decision legally was mine alone as Jean had appointed me her power of attorney. Jean had made her living will very clear and made her intentions very well known. Even if they had all voted against my choice I at least would honor their mother's wishes. Andy said we all wished the same so that a year from now none of us would regret the course chosen. The vote showed we all agreed anyway. We told the doctors that we had decided to withdraw supports as soon after each of us had spent some time alone with her.
[I learned later that Andy had dressed in his performance tuxedo and gotten permission to bring in his huge double bass to play an hour-long concert as a special gift to his mother that morning. No one in the ICU complained. The music was somber. Many patients, visitors, and staff were openly in tears.]
Each of the family went in, some taking longer than others. Nat was there for almost an hour. We got worried about him and sent the hospital chaplain in to see if he was OK. The chaplain returned to assure us Nat was fine. Everybody did this his own way. My own visit was very brief--I knew I had lost Jean on the eighth--this was just two days of mechanical perpetuation.
The nurses told us they'd need a few minutes to prepare her for the procedure before we would be allowed to go back in. Andy and the other doctors were confident we wouldn't be waiting long because so many systems were losing ground even with the supports. Andrew, Emily, Peter, Nathaniel, Rita (Peter's girl friend), Jennifer, and I formed a circle around her bed as the nurses turned off the ventilator and closed the IV drip.
It took eight minutes. Her breathing unassisted was irregular, halted occasionally, then suddenly restarted. Her heartbeats varied also, never quite recovering the pace from the ventilator's push. No one spoke. We watched the lines on the screen as the factors resolved. We watched her face, somehow less strained, more natural, paradoxically more lifelike. The nurses had closed her eyes. I could imagine her sleeping.
Unlike the movies where the failure of the heartbeats sounds a signal, the machine simply went silent. The doctors and nurses were watching a remote screen at the central desk and knew when to come in. "Time of death--5:17 PM" was all he said, but we felt he was sorry for our loss. We filed out quietly, first kissing the remains, cold and clammy as it had been all during the process of death.
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A neighbor brought over supper, a delicious slab of salmon with an excellent cream sauce. We fed everybody except Jennifer who decided to stay at her apartment for the night. Rita invited us to her house to use the swimming pool.
Andy had called John Roisum while we were making our goodbyes to Jean for the last time and he set about getting a flight from Atlanta. We also heard from our pastor, John Lentz, who told us he would be flying into Cleveland Saturday morning. His wife Deanne would drive their kids home with the car in another day or so.
I went to the pool. Everybody seemed to be having a good time. I knew I hadn't a pair of trunks that would fit me comfortably so I stayed out while the young people frolicked. Rita has a son, Evan, who's in first grade, a cute kid. Rita stays with Evan's grandmother in a fairly sumptuous house (pool, remember?) because the grandmother wants to watch Evan grow up. Rita once lived on Tullamore, our old street where she spent her childhood as friends with Peter.
Eventually the bugs began biting and I tried to go home and watch TV and get some much needed rest. Peter ran out of the pool and chased me down the walk. "Wait. Pop, stay here. You can watch TV here," he pleaded. Andy had told the others I was not to be left alone. Rather than get everybody upset I watched for a while over there until Emily decided to walk home with me.
I didn't sleep well, but since we had planned a large meeting at our house, I had to get up and get things ready for a brunch at our dining room table. Friends had offered to help with funeral arrangements and I took them up on it. Jeanne's (Andy's girl friend) mom, Mary Jo Piunno-Lackamp, who had served as a hospital chaplain and grief counselor, some friends from church, Carolyn Vrtunski, a forensic psychologist, and Katherine Eloff a lawyer specializing in domestic law, had all agreed to meet with us at 10 AM to a feast of donuts, fresh bagels, cream cheese, jams, jellies, coffee, fresh-squeezed orange juice, and fruit.
I related what I knew of Jean's wishes: that she be cremated and possibly buried at the new mausoleum at Lakeview cemetery. Together we selected a reputable funeral home [Brown-Forward] and started discussing the memorial service. Emily and Carolyn would work on flowers and the order of the service and Jean's favorite hymns. Peter, Nat, and I wanted to speak. Andy and Emily would play some music.
As they were leaving, John Lentz pulled up about 11. John is a thin, energetic man in his early forties who was selected to be our minister because of his dynamic leadership and intelligence. He had come to express his regrets and to gather some ideas for memorial remarks and to set a date. We settled on Wednesday night at 7 PM. He agreed that would be no problem. He talked a little of what we might say but left the ground wide open since we would meet again before the service. Andy had spent some time checking on Jean's insurances. Confident we were in good shape for what we could afford we hauled off to Brown-Forward about 1PM.
I was drained emotionally and defensive with offensive humor. I couldn't take Judy Forward's questions seriously. After all, I had a two-day jump on everybody else. I had been grieving. I knew Jean wanted to be cremated. But you just can't be cremated. You have to wear something. And you have to be in a container to be cremated. Then they sweep your cinders into an urn. [What they didn't tell us was that the bones don't burn and have to be ground up in a kind of Cuisinart-shredder.] We looked at 145 different urns one might buy--every thing from humidors to cuspidors with jewelry boxes in between.
Ultimately we selected a rosewood box that I said looked like "Honey, I shrunk the casket."Almost everybody got on me for that. Andy chided I should watch not to say something I'll regret. Well, we hadn't discussed containers and most urns do not look like dignified resting places. Cookie cans were more up Jean's alley. And they talked us out of dispersal: for one, Jean never mentioned it, and two, Peter wanted some place "to go see Mom." Nobody was in the mood for my stating that "Watching grass grow over a patch or staring at a marble door ranked as 'seeing Mom'." Remember, I said, this is not Jean; this is Jean's ashes. Even her cold and clammy soon-to-decay remains was not Jean. The only place for the believer to go was to prayer. I was no Egyptian. I needed no mummy to last the eons.
Dear Aunt Mildred,
Today is the 15th of October and I still haven't finished. I shall send you what I have written so far including the service, eulogies, minister's remarks and the obituary.
Love,
Jim
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