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Carol's Story

Today would have been Mother's 71st birthday.  My sisters and brother and I would have called her this morning to wish her a happy day. She and my Dad would have gone out somewhere to eat this evening, nowhere fancy, maybe even just the .cafeteria. Those of us who live close would have stopped by their house later to take her some flowers.  This weekend we would have gathered for a family celebration. 

Diane, my sister, would have been in charge of the dinner, calling Mom frequently to ask her advice.  Tom, my brother, would fly in from Atlanta, and be responsible for the roast, which he does almost as well as Mom.  Shelly, my younger sister, would drive in from Dallas, and would be checking with Mom on which brand of food coloring is best for the Red Velvet cake, our family tradition.  And I would be running to my parent's house at the last minute to borrow the big CorningWare casserole for the potatoes.  We would give her the presents we picked out for her, and she would chide us for spending money that we should be saving for our children, her grandkids.

The gifts would have been sweaters and elastic waist slacks and perfumes and pottery from Slovakia, and probably a picture of my son Ben in his football uniform.  And after dinner and cake and presents, Diane would have gotten out her Karaoke machine, and we would have cranked it up, taking turns singing out of tune.  Mom would not have sung with us, she only did that once, with her sisters at the family reunion in '95, but she would have sat back and smiled at us making fools of ourselves.  Then we would have played Charades, and she would have gotten exasperated at Dad for not guessing her clues to "Brigadoon." Then someone would have brought out Trivial Pursuit, and Mom would surprise us with the answers she knew, especially those about old songs. She would have had a good birthday, and we would have been so blessed to have celebrated another one with her.

My parents were working-class folks. Dad was a meter reader for the water company, and Mom stayed home with us until we were old enough for her to go to work for a mail-order catalog.  They never went to college, but always did the best they could for their 4 children. They weren't especially demonstrative in their feelings for their family or each other, but we knew there was love.

They had their struggles and arguments, and there were some tough times. Mom suffered from arthritis since her 30's, so Dad spent a good deal of time and energy helping her and making her comfortable. Occasionally, Mom was a bit demanding and critical of Dad's efforts. Even though Mom never complained of pain, we knew when she was in a flare-up because she'd be impatient, and in a bad mood, a change from her usual cheeriness.

After Mom was diagnosed with primary stomach cancer, and then a recurrence 3 1/2 years later, Dad was more of Mom's caregiver than ever before.  However, I saw Mom soften in her relationship with Dad during this time.  It was as if she realized how precious her time was, and she wanted to make sure Dad knew how much she appreciated his devotion to her over the years. Together, they faced her cancer, just as they had been facing her arthritis-- with hope and determination, countless doctor's appointments, and drugs that took their toll on her body.  By Easter, it became apparent that the radiation was not helping, and in fact, caused a perforation in the wall of an internal organ, resulting in a leakage of waste material.  That was difficult for my Mother, who had always placed a high value on cleanliness.  But she accepted it as a new fact of her life, just as she had accepted the arthritis and cancer.  Never once did I ever hear her utter the words "why me?". She always found a way to manage whatever hardship came her way.  I know her faith and prayer gave her the strength to do that.

We could see her condition was deteriorating, and her doctor had no new options to suggest. I had always expected him to lead us to hospice when the time was right. I thought that's what all doctors did. But we finally had to bring up the subject of hospice ourselves before he addressed it, and then it was definitely NOT a wholehearted endorsement from him. There appeared to be a denial of sorts on the part of the doctor.  It's seemed almost an arrogance at admitting he couldn't change what all of us must do sometime--die.

The real turning point for us was the night Mom and Dad got no sleep because her pain was so bad, in spite of the Duragesic patch (that replaced the morphine) and the Darvocet she took for breakthrough pain. None of that was effective.  When I saw her the next morning, it was horrible.  I had never seen my Mother in agony like that.  And it was that morning, thank God, that hospice entered our life.

The intake evaluator arrived, and even though she would not be Mother's regular nurse, she had an immediate positive impact on the family because of what she did to relieve Mom's pain.  It's coincidental that it turned out our assigned nurse is the mother of a girl I taught with several years ago.  Actually, I don't think it's a coincidence at all -- just the Lord's Hand at work.  He was guiding us, even in the darkest days.

That afternoon she was visited by the hospice doctors and they were so very kind.  They showed us compassion and understanding, and had a much better management of Mother's pain. The hospice doctors told us Mom would be out for a while after they got her pain under control, and it was obvious that she was not very alert.  She was so groggy and confused most of that day. At one point she told me her head just felt so heavy, and she did goofy things like pump soap out of the dispenser without her hand there to catch it, and just dropping toilet paper on the floor when I handed it to her after she went to the bathroom. But the most important thing was that she was not in pain.

We lost a little piece of Mom every day that went by, and by Saturday she was mostly non-responsive, even when Tom, and Shelly and little Maddie got here from their homes out of town. That was extremely difficult to witness, but we took comfort in knowing that she was at home where she wanted to be, in her own bed, surrounded by the people and the things that she loved. We gathered the family and kept vigil.

Then 2 days later, she had a rally, I call it a miracle. She woke asking for coffee! Mom was able to drink, and converse with us for most of the day! She came back to us for a week of laughing, chatting, and visiting.  She was able to talk to us about the things that she wanted us to know.  During that time, Mom told us she was ready to go, and it was the first time she had spoken about it. It gave the rest of us permission to talk to her about dying, and how we would miss her, and what we wanted to thank her for. We had some good talks and some good cries. She visited with dear friends and her sister came to visit from afar. It truly was a miracle! At the suggestion of her hospice nurse, we arranged a special graduation ceremony for my daughter Meghan right in Mom's bedroom. Meg wore her black robe that she would wear the following Thursday night with the rest of her classmates.  The head of the high school came to Mom's house as a special favor to us, and presented Meghan with her actual diploma, with all of us looking on.  Mom beamed through her tears from her bed, as she watched the graduation of her oldest grandchild. It was a wonderful moment we will always treasure.

It seemed that each day after hospice came in was a different experience.  There was a time during those 5 weeks that Mom became very angry that she hadn't died yet, and she conveyed that she felt betrayed by God. That saddened me deeply because she had such a strong relationship with the Lord. At one point Mom became untrusting of any of us giving her medicine, Dad included.  She was certain we were mixing it all up. There was a time when she didn't recognize our faces anymore, and kept trying to get up out of bed and "get on the bus." All these changes happened over a period of weeks for her.  I really believe dying has similarities to the birthing process, and we go through a "labor" of sorts as we die. And this was my mother's labor.

Mom kept wondering why she was still here. She was so concerned over the toll this was taking on the family.  Our priest and the hospice nurse kept telling her God must know of another person whose life Mom needed to touch before it was time for her to go. And so I began looking around at who that might be. I thought it might be Mom's friends or relatives who came to visit, but they came and went and still Mom lingered. The final week of her life, the only people around Mom were the hospice nurse and us, her family, and so I decided it must be one of us who had an issue that needed to be addressed by Mom before she could be at peace.  Yet still Mom hung on, and now she was clearly suffering from some pain and discomfort, even though she had returned again to that near-comatose state.  She couldn't move, talk, eat or drink, and she grimaced and moaned whenever she was moved or touched.  That was so hard to witness, and made us feel so helpless.

Then, on what turned out to be the last day of her life, our hospice nurse came for her daily visit, and brought with her a stranger to us, a young intern who was doing his hospice rotation, something recently added to the training of doctors. This was obviously his first hospice experience, and he seemed ill at ease to be there, but he watched and listened as our nurse compassionately cared for Mom and for us.  I had a sudden realization (I believe it is God speaking to me when that happens) that this stranger whom Mom had never met was the ONE whose life she was supposed to touch before her work here was done.  And then she died later that same day.

I am convinced that God sent that young doctor to Mom's bedside to help him learn how to deal compassionately with the dying patients and their families he will encounter in his future.  It enabled me to give some meaning to Mom's suffering and death, even when it seemed to serve no purpose. I believe my Mother was able to reach out to someone even at the end of her life.

During the last days of her life, she was not able to talk.  But she let Dad and her children know how much her husband had meant to her. My sisters and I were changing her, which caused her pain, and her face was contorted in a grimace.  My Dad walked by in the hallway outside of her bedroom, and she heard his voice and began to smile.  We saw this change in her countenance, and realized how dear he was to her if she could find comfort in the sound of his voice.  On the evening she died, we were taking turns sitting with her. My sister had just come into Mom's bedroom to send Dad out to eat his dinner, when she noticed Mom's eyes open wide to follow Dad as he left the room.  Recognizing that Mom seemed to want Dad to come back, my sister came to get him.  The rest of us followed, and Mom drew her last breath minutes later, with all of us surrounding her, and Dad kneeling beside her holding her hand.  There was a sense of beauty in this saddest moment of our lives.  Mom was gone, but we had helped her leave this life with love and dignity. I find so much comfort in that now.

We called Kay our hospice nurse, who came immediately. She took care of all the notifications, including the funeral home.  She helped my sisters and I bathe Mom for the last time, something we had been doing for Mom in her final weeks.  She read a special verse as my family gathered around Mom's bed with our priest, who led us in prayer.  She explained what would happen when the men from the funeral home arrived. It was still very difficult to see my Mother wheeled out of her home for the last time. And then, unbeknownst to us, Kay went back into Mom's room, straightened up and smoothed the bedding, and laid a bouquet of flowers on Mom's pillow. We didn't even see it until Kay had left sometime later. My brother went into the bedroom for something, saw it and called us in one at a time.  It was so beautiful to see blossoms where Mom had just laid her head.  It gave me such peace to have this lasting vision of where Mom had died, instead of the memory of her suffering there, left now as an empty space. I will always be deeply grateful to Kay, our hospice nurse, for this simple gift that meant so much to us.

This grief is harder and more complicated than I anticipated. It broadsides me sometimes, stunning me over and over again that my Mother is not here, in spite of the peace I have about the way she died.  So today Mom would have been 71.  Dad leaves this morning to visit my brother Tom in Atlanta, and Mom will be in his heart, and Tom's too. She never got to see Tom's new place after his move there, but she was so proud and excited for him.  Diane, my sister, will probably visit the cemetery with her young son, Sammy.  She'll talk about Grandma "Bush" (short of Babush, the Slovak word for Grandmother), and show him pictures of her to help him remember. Shelly, my younger sister, will most likely be thinking of how much Mom would delight in seeing how Maddie has grown, and how she would love hearing the news of the new baby on the way. I will take flowers to the cemetery and contact some special people in my mother's life, to thank them for what they meant to her. We all will be remembering how much we love her on this day, and how much we hurt missing her EVERY day.

In Loving Memory of Martha Brlansky Sax November 11, 1928 - June 10, 1999

copyright 2000 Susan Peticolas Lahti

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