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The Right to Live

One Story at a Time


My mother turned eighty on March 8, 2000. We had a party for her, nothing lavish. Friends and relatives from far and near came to celebrate with her. She was the belle of the ball in every way. She was lovely and graceful in a floor-length lavender chiffon and sequin gown. She loved her party and seemed to float on an air of happiness.


Mom was a bright and spunky lady, with a sometimes quirky sense of humor. She was a good friend, always ready to help others. She lived alone, about 100 feet from my back door; she was independent, maybe too much so. She loved to go and do. She was extremely active and healthy for her years; I never managed to think of her as old, she was just simply too vibrantly alive.


Friday, November 17, 2000, Mom went to the hospital in the big red taxi (Aid Car). She had had a small stroke on the right side of her brain. Saturday and Sunday, November 18th and 19th, she had two other small strokes, also on the right side. We were informed that it was all a part of one stroke and it was now over.


Thanksgiving Day, November 23rd, my son, Sean, and I drove to my daughter Kathy's home to join the rest of the family and spend a couple of hours in celebration. We thought we had something to be truly 'thankful' for on this Thanksgiving Day. There was cause for cautious jubilation.


To go back a bit, Sean had taken a week away from his business in Seattle to spend sixteen hours a day in the hospital with his Grandmother and then come to my home to crash for a few hours. My eldest daughter, Kathy, made the drive from Kirkland to the hospital each day or evening to spend an hour or two, with or without her children and husband. My daughter, Wendi, and her little son, Kole, made the long drive from school in Bellingham twice. My nephew, Lawrence, from Salem, came with his young family to spend most of a day. Mom really lit up when one of the 'little people' came in her room. I spent every spare hour between work and school and a dab of sleep with her. (Mom was so proud of me for returning to school; I could not allow myself to quit or fail, she would feel responsible. So I did my homework at her bedside.). My family at home was totally neglected. My brother, Phil, incapacitated with a large tumor surrounding his brain stem,* phoned once or more daily from Oregon. I believed that worry about Phil was part of the reason Mom was in the hospital. My brother, Wendell, phoned once or twice daily from Tennessee and his two grown children, in cities as far away as Paris, France, phoned often. Mom was showered with love and support.


Mom had made steady improvement since the Monday before Thanksgiving; she was weak on her left side and her speech was somewhat impaired, but there was nothing wrong with her hearing or sense of humor. Her dark blue eyes would twinkle and we got great "wouldn't you like to know?" grins in answer to some questions. She was newly fascinated by the colors and patterns of fabrics. Wednesday, the day before Thanksgiving, she walked from one side of her bed, around the foot, and to the other side, fifteen long feet, supported by Sean on one side and Mike, her physical therapist, on the other. Thanksgiving morning, before we left for Kathy's, Mom walked forty-five feet in the same manner. These were tremendous strides forward. And they gave us real reason for our cautious jubilation (actually we weren't so cautious; we were positively jumping with joy). The prognosis was that she would eventually recover, at least ninety-five percent if not fully. Our only lingering concern was that she hadn't eaten since the previous Wednesday. With the strokes, she had lost her swallow reflex. We were waiting to see when, not if, it came back.


I had not known until the previous Sunday evening, November 19th that Mom had a “Do Not Resuscitate Order.” My brother Phil, as her power of attorney, had a copy. I only found out about it because the doctor approached me about putting a feeding tube into her stomach. I requested that they wait as long as absolutely possible because Mom would equate a feeding tube with dying. I explained to the doctor that everyone she had known who had had a feeding tube put in had died shortly afterwards. The doctor then asked me, “What does the “Do Not Resuscitate Order” say?” Gad, I didn't even know it existed. What did it say? I had no idea. Phil was to send a copy. [He did better; he made the long, arduous, extremely painful drive, lying in the back of their van on an improvised bed, over “Do not travel unless absolutely necessary” snowy mountain passes to see his mother. He brought the “Living Will” with him (I did not see it). He was able to spend all of Sunday, November 26th, with her.]


The day after Thanksgiving the hospital speech therapist cautiously gave Mom a couple of bites of pudding. She didn't like the taste but she could swallow. He then brought in a variety of very soft foods. It was wonderful to watch this non-potato lover eat half of the small bowl of mashed potatoes and gravy; at first I fed her, then she rather messily fed herself. She was game enough to try, with a wrinkled nose, a bite or a sip or two of everything. Nothing tasted good, but we hoped with practice she would find hunger again.


On Saturday, Sean and I thought that she was not doing as well as she had been; she still didn’t have an appetite and very little was going into her tummy. She seemed more confused. We reminded each other and ourselves that the rapid advances we had been seeing could not happen every day. Give her time.


Sunday evening, November 26th, Mom had a massive stroke on the left side of her brain.


She had been scheduled to be moved the next morning, Monday, to an In Hospital Physical Therapy Unit at Good Samaritan Hospital in Puyallup. Now, she could no longer qualify for the unit; she would not be able to spend three hours a day working in physical therapy. She was never going to be able to go into physical therapy; she was not going to recover, ever. Strokes on both sides of the brain precluded any possibility of recovery. Should she live, she would be a vegetable, not might be, WOULD be. That Monday, the last day she spent in the hospital, was eventful for two reasons: It was the first day that they put nutrition in her I.V. (Why did they wait so long? I had thought that nutrition had always been in her I.V.); it was the first day that a family member had not been with her constantly, and that morning some creep stole the one karat, three diamond ring that she wore above her wedding ring. It had been the last gift to her from my father.


When I arrived at the hospital after work, early Tuesday afternoon on November 28th, I was informed that in a half-a-hour mom would be transported to a care facility. It felt like someone kicked me in the gut. The previously kind and welcoming nurses and staff acted like “get your dying garbage out of here; we need that bed for the living.” Mike, mom’s physical therapist, happened to be in the nurse’s station at the time and he was kind enough to read me the salient points of her “Living Will.” The hospital had her transported to the long term nursing home that I had previously selected for her final recovery stages. Not for this! She was transported with a hydration I.V. – I had been told, “The I.V. is the only way for us to give her pain medication.”


Mother's Living Will was very specific: "Do Not Keep Me Alive by Artificial Means": "No Resuscitation": "No Stomach Feeding Tube": "NO HYDRATION". Wednesday afternoon I discovered they were giving Mom her pain medication under her tongue. What happened to the only way for pain medication to be administered was in the I.V.?? I thought and I prayed, and I thought some more. This was in violation of what my Mother had specified. I had been told that death by dehydration was painless. How could anyone know?? Painless? Why give her pain medication?


I did know that my super fastidious mother, who had wept in abject humiliation because she had soiled herself in the hospital, would not want this ‘life.’ It had happened so fast. She had no more than indicated she had to 'go' than Sean had pressed the call button, opened the portable commode, and gotten Mom onto her feet when yellowish-brown, yuk ran out of her, down her legs, and into a smelly puddle on the floor around her feet. Tears ran down Mom’s cheeks while the kind and gentle nurse cleansed and tried to reassure her. No, this lady who couldn’t stand being dirty would not want to live this life. This proud and independent lady deserved better.


Friday, December 1st, I made the most difficult, lonely, heart wrenching decision anyone should ever have to make. Remove the hydration. I knew that in requesting this I was accepting, perhaps even hastening Mom’s death. I was informed that to do so would necessitate moving her to another ward; Medicare would no longer cover her care, and when it ceased her other insurances would also stop. But, "We are in violation of her Living Will." - "Please remove the hydration." Later that day they put her in the Hospice ward. I did not know what hospice meant. I do now.


Early Saturday afternoon when I went to see her after school I found she still had an I.V. - "Oh God, doesn't it ever get any easier?" - "Why does my Mother still have an I.V.?" - "Aren't you administering her pain medication under her tongue?" I had to make that awful soul tearing decision all over again. "Please remove the hydration, it is against her express wishes; it is in violation of her "Living Will"." "LET HER GO WITH AS MUCH DIGNITY AS ABSOLUTELY POSSIBLE!” I also prayed, "Let it be soon, Lord, let it be soon. Take her home soon." (I had been told that one man, dehydrated when he arrived at the nursing home hospice unit, had lived for forty-one days without food or hydration.)


I spent the next six days, after work, after school, after a few hours of sleep, sitting beside mom, holding her hand, doing homework. I was determined she would not die alone. Most of the time she was totally inert; other than a small squeeze of the hand there was no reaction. But there were times when, at some level, she responded to a touch or a voice. Saturday, December 2nd, after I had succeeded in having the hydration removed, I took her hand but instead of just letting me hold it she lifted my hand to her cheek and rubbed it against her face. Thinking it was an involuntary movement, I removed my hand. When I took her hand again, she repeated the same action. It was almost as though she were thanking me. Imagination? Wishful thinking?


She responded with a deep sigh and a listening attitude to prayers said by her Minister or the Sister at the facility; she seemed more peaceful afterwards. Sunday, December 3rd, when my children came to visit (after we had gone to the funeral home to make future arrangements) she responded with a slight movement to our voices, and once tried to open her left eye.


On Wednesday, December 6th, she made an effort to sit up and opened her left eye. There was no one at home in the eye, but still: "Did I act hastily?" “Did I believe the experts too readily?"  "Oh God! Did I make a huge mistake?" I was told, "No, you didn’t make a mistake." "This behavior is normal for the dying." "Yes, at some level they probably are aware, but most of the movement is involuntary and it is actually not a good sign, particularly the jerky attempt to sit and the opened eye."


There will always be the agony of never really knowing if I did the right thing.


I sat there day after day, listening to her labored breathing, wiping the drool from her chin, swabbing out her dry crusty mouth, cleansing her mucus matted eyes, putting salve on her lips, cream on her hands and feet, and breathing the stink of her gradually decaying living body. I finally gave her permission to, "Go Home, we (those who would remain) will be O.K." But I knew she was waiting for the one person that she loved the most in the entire world, my brother Wendell.


Wendell finally came, late Thursday afternoon, December 7th. He hadn't been sure if he could go in to see Mom, but he did. I told him, “You have to give her permission to "Go Home;” you are all that she has been waiting for.” I know he thought I was nuts and didn't know what I was talking about. Besides, I had no right to tell him what to do with “His Mother,” but it had to be said. He had to know! He returned on Friday to spend a short while with her in the morning and again in late afternoon.


Saturday, December 9th, 2000, at 3:30 a.m. my Mother went Home to her Lord. As she did everything in life, she left quietly, in private, so as not to distress those she loved while they were sitting beside her. She has now rejoined her beloved husband, Wendell, and their little son, Hal Lynn. God had a new angel for Christmas. He must have needed her.



I do not believe in euthanasia.

*Postscript: The Lord is often good to us in ways we cannot anticipate. At the time this was written it was thought that my brother Phil might not survive the diagnosed tumor he had. It would have killed my mother to have had to bury another child. When mom died, we thought that if all did not go well with Phil (he was failing rapidly, while the medical profession dithered around) his Mother would be waiting 'there' to ease his way. Phil did not have a tumor; he had an enormous undiagnosed abscess in his middle back that had invaded his spine. A fourteen-hour surgery put him on the long, long road to recovery – disabled but alive.