Watching Momma Die

A little less than two years ago my mother, Mirma Palosi, passed away at the age of 88. The passing of an 88 year old woman is usually of little note except to family and friends and the passing of anyone 88 years old is not to be unexpected. While her actual death is not newsworthy the manner in which she died bears telling.

During her 88 years my mother pretty much lived her life on her terms, as she saw fit. Working at a physically demanding job at the Sugardale Meat processing plant she supported three children without any help from anyone including her ex-husband. She retired from Sugardale in 1983 and possibly could have not worked again. But being a person that liked to keep active she found that retirement was not for her and after a few years went to work at the Massillon Kmart where she eventually finally retired at the age of 87 in January of 2008. In truth my mother worked until age 87 not only because she wanted to but also because she needed the money to pay for her bingo addiction. It was not unusual for her to drop a hundred bucks or more at bingo. We never said much to mother about her gambling habit because we figured that she was independent, paying her own way and not hurting anyone. Besides, it made her happy and after supporting the three of us she deserved to do what made her happy. She also derived great joy from her grandchildren and two great-grandchildren. Even in her eighties she always had a twinkle in her eye and was a vibrant fully alive human being.

All that changed shortly after her retirement. At the time of her retirement she said that she was feeling tired quite a bit and that it might be time to slow down. In the months following her retirement her tiredness increased to the point where she became concerned and mentioned it to her doctor. At first he gave her some vitamin B and a prescription or two to help her feel better. When that didn’t help he ordered blood tests to try and figure out what was making her tired all the time. When the blood tests showed an high number of abnormal white blood cells her doctor referred her to the cancer center at Aultman hospital. The doctors there ordered more tests after which she was given an appointment to see an oncologist at the center. Her appointment was on July 24, 2008. When it came time for her to go to her appointment she asked me to go with her and as the eldest son I agreed to do so. However I did so with a little hesitancy since two years before I had taken a similar trip with my wife down the same long hallway to the same Aultman cancer center. As we entered the hospital we didn’t have to ask directions to the center since I was all too familiar with the center from my many trips there with my wife. I quite likely could have made the walk with my eyes closed.

When we were called back to see the doctor I was pretty sure the news was not going to be good. In a professional, almost abrupt manner the doctor told us that her tests showed that she had chronic myelogenous leukemia (CML), a cancer of the white blood cells. The doctor said that with treatment he had many patients survive for up to five years. At age 87 most people would be content with an additional five years, especially with good health. However as we would soon learn that any additional time for a person with CML comes with a price. A price that I am not sure was worth it. The first drug the oncologist prescribed was a drug called Gleevec. As usual the prescription came with the obligatory list of possible side effects. These lists of possible side effects are most likely prepared by the drug company’s attorneys with the intention of not only informing patients taking the drug of possible side effects, but also to protect the drug company from possible law suits. In my mother’s case the side effects listed turned out to be visited upon her in a most terrible way. Shortly after starting her drug therapy my mother developed severe pain in her legs. She quickly lost her appetite and was unable to do much including going to her precious bingo game. She stopped driving and family members did all her errands and took her places that she needed to go to. Trips to her primary care doctor and the oncologist became more and more frequent as she sought relief from the debilitating side effects of the drug she was taking. Trying to fight these side effects involved taking more and more drugs to try and make her feel better, but nothing helped. Eventually the oncologist switched my mother to a new drug - Sprycel. Sprycel did help the pain in her legs a little but not her other symptoms. Her appetite continued to diminish. She now could hardly eat or drink anything without nausea. Mom was a small woman to start with who never weighed more than 120 pounds in her life. Within two months of starting her drug therapy for this horrible disease she was reduced to less than a hundred pounds. I remember joking with my mom that she shouldn’t have retired. As long as she was working, even into her late 80’s she felt fine, but as soon as she retired this sickness was befell her.

In February 2009 a new phase in the progress of the disease started. In early February I got a call from my sister saying she had taken mom to the emergency room. Mom’s inability to eat or drink had weakened her to the point where she needed hospitalization. Once in the hospital she was given fluids to rehydrate her and oxygen to help her breathe better. This was the first of a series of trips to the emergency room that were to take place in the following months.  About this time, mom sensing what was to come started to give away her most prized possessions to members of her family. Mom never had a lot and what she wound up giving to her grandchildren and great grandchildren were mostly trinkets of only sentimental value. I think giving family members these items was mom’s way of hoping these small material things would help her loved ones remember her. During this time the family tried to keep mom active as much as possible. My sister would take her shopping and I would take her to lunch with her sisters which she enjoyed very much even if actually eating a meal was a struggle for her.

Around June the trips to the emergency room became more frequent and the duration of her hospital stays became longer. She really needed to be in a nursing home where she could get constant care, but mom was an independent woman for all of her 88 years and we acquiesced in not forcing her to go into a nursing home. She wanted to stay in her home and remain independent to the end.

In the middle of July mom called me and said that she needed to go to the emergency room again and would I take her. As I drove to pick her up I called the immediate family and told them that I was taking mom to the emergency room again. By this time we had all gotten used to these trips and we thought this trip would turn out the same as the trips before. We expected that she would be given the usual treatment and be sent home in a week’s time. And indeed it did seem that was to be the case. After a couple of days of treatment she had perked up to the point where she was sitting up in bed, was smiling and talking and even a little of that old twinkle was back in her eyes. When I walked in to see her on the third day she was in such good shape that I promised I would personally take her to her favorite bingo parlor after she got out of the hospital. It was a promise that I would be unable to keep. A couple of days later a little before 7 AM I received a call from her primary care physician; he had just gotten to mom’s room as he was making his rounds and he found her to be having great difficulty breathing. He had called the rapid response team to take her to the intensive care unit and said that I should get down there as soon as possible. I quickly called the immediate family and headed to Aultman hospital. When I arrived at the I.C.U. I was met by a group of doctor’s and a business representative of the hospital. The doctors explained mom’s condition to me and said that she had 16 hours or so left. They asked if mom had a living will and if I had a medical power of attorney to make decisions for her. When I left home I had a bad feeling about this call and jammed both documents in my pocket which I now presented to the doctors. Mom had left specific instructions that we were not to keep her alive by extraordinary measures - especially any sort of artificial life support. She had also told us that she didn’t want a large group of people standing around her bed in her final hours. This was a request that would soon be ignored. It wouldn’t be long before all the children and grandchildren would be surrounding her hospital bed.

When I entered her room I found her asleep, breathing slowly and wearing a clear plastic oxygen mask. She must have sensed my arrival as she awoke and looked at me with alarm in her eyes. She futilely tried to remove the mask and the nurse came in, told her to keep the mask on and tried to calm her down. Mom reached up, grasped the side of the mask and managed to move it enough to say something to me. In a voice just barely audible she asked “How much longer?”  I wasn’t able to answer her. All I could do was reach out, touch her hand and say “try to rest.” I wish I could of thought of something inspirational to say, but I couldn’t. All I could do was to hold her hand as if that might comfort her. As I held her hand I remember thinking that it was like I was just holding a skeleton of a hand encased in a loosely fitting glove of skin. This terrible disease had wasted her away to almost nothing - literally not much more than a bag of bones. During the next few hours the rest of my family arrived and filed into the room.  Around this time the nurse started giving mom morphine to ease her pain and she drifted off into unconsciousness. As the hours went by her breathing became slower - at times stopping for a brief moment in a preview of what was to come.  Daytime turned into darkness as family members would filter in and out but I stayed by her side - the dutiful eldest son. Late in the evening we were able to contact the priest from St. George’s Greek Orthodox Church and shortly before midnight he administered the last rites. Mom had often told us that she didn’t want a priest to give her the last rights. This was the last of mom’s instructions that I would ignore.

As I watched the sun rising out of the window in mom’s room her primary care physician came into the room, looked at the monitors and in a surprisingly matter of fact manner said, “It won’t be long now.”  He then turned and without saying another word walked out of the room. I stood there awhile looking at the monitors wondering what he saw and I decided to go tell the other members of the family who were in the ICU waiting room that if they wanted to say a finale goodbye they might want to come into mom’s room. Some of them had gone down to the cafeteria for breakfast and as others went to get them I went back to my mother’s bedside. As I walked into the room I stood at the foot of her bed and looked at her. After a few moments I looked up at the monitors just at the exact moment her brave heart beat its last. The lines of the monitor went flat as if to officially let me know that the end was there. It was the only time I had ever been present at the moment of death of someone and I remember thinking how casually her life left her. There was no death rattle, no involuntary body spasms to dramatically signal the end of her life. If I had to pick any words to describe that moment they might the words from the Peggy Lee song “Is that all there is?”

The actual moment of my mom’s death at 7:50 AM on July 23, 2009 was anticlimactic. In reality I had been watching her die for almost an entire year. She died one day short of the one year anniversary of the day we received her diagnosis of having CML. For 87 years mom lived life as a  fully alive human being. Her vibrancy and joy in living was taken from her in a way she did not deserve. This insidious disease that  took her life was not worthy of her. The slow, painful withering away of one who lived so fully was not appropriate. She deserved better. Now her suffering was finally over and maybe as people are prone to say - she is in a better place. I don’t know if that is true or not. All I do know is - we miss you mom.