We are sitting at the dining room table overlooking the patio. The trees in front of us have the beautiful shades of autumn. We are eating two types of chowder and shrimp cocktail. This is the best meal, my father says. He is eating heartily. I’m glad. Trying to fatten you up, I tease. When we are finished we retire to the “living room” a few feet away. He looks around the room and says he is pleased and comfortable with the new apartment. We brought most of the furnishing minus a few geisha dolls and an array of angels and madonnas. The apartment has a more masculine feel. It feels uncluttered and relaxing. He looks more rested these days. I notice a quiet air about him. He is in deep thought. I still miss her a lot he says. He shakes his head. This time he is not laughing or smiling. He is no longer in the denial stage of the grief process. He has accepted that my mother, his wife is no longer living as we are. But where did she go?
Where does any living thing go after what we call life? Temple Grandin asked this same question. I recently viewed the HBO film about the well known woman with autism who went on to become a PhD graduate in science and animal rights advocate. I also went to hear her lecture on autism and was inspired enough to read her book on the subject. People “on the spectrum” are characteristically socially awkward. They have a neurological wiring that is different than the general population yet two scenes in the film touched on a universal theme. The first scene she witnessed a cherished horse’s death. But where did he go? The young Temple asks. In the second scene she is at a funeral for a beloved teacher and mentor. She is leaving the funeral and her mother tries to teach her the socially correct behavior. Temple says He’s not there. Where did he go?
I have asked my self this same question so many times. My Catholic upbringing told me that people go to heaven after life on earth. But where is that? What is that? Science tells me that matter cannot be created nor destroyed. So where does the spirit go? I sit with my father and talk about my mother. Her urn is bright and colorful so representative of her personality. The urn is set on the Asian themed curio in a prominent area of my father’s apartment. It holds the last physical matter of what we knew as my mother. The room is permeated by her spirit. In order to answer the question where do we go we must ask ourselves where are we now and what is our purpose? What is life? What is life after life. For now I just respond to my father, I miss her,too. Stay healthy,Dad. I need you around for awhile longer.
“So this is the way it unfolds. In the absence of what people like my grandfather could count on- a vast extended family constantly on hand to let him make his own choices- our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.” – Atul Gawande, “Being Mortal”. As I read these words from Dr. Gawande’s bestseller their importance resonated with me. After all, I had spent the last last three months ruminating over every detail of my mother’s death. I wondered if the medication had been restarted earlier would the outcome be different. I thought about her doctor’s words stating that we are putting band aids on the problem and how I thought then just put the f-ing bandaid on! And yet I knew the doctor was right so I agreed to consider his plan. I agonized over whether we had done too much in the case of the PIC line or too little by not being aggressive enough. Dr. Gawande states “At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality- the courage to seek the truth of what is to be feared and what is to be hoped…But even more daunting is the second kind of courage- the courage to act on the truth we find… One has to decide whether one’s fears or one’s hopes are what should matter most.” But whose fears or hopes? The patient? The family’s? The medical team? He is referring to the patient but the patient does not exist in a bubble. It takes a village to help the elderly.
The courage I needed was in the truth I would find. The truth was in the conversation that started back in 2008. It was just another ordinary day. I had invited my parents over for dinner. They appeared happy and looked forward to a good home cooked meal that I jokingly slaved over. My father usually gave me “5 stars”. “Dessert comes with the meal” was my usual quip. On this occasion my mother told me they had been to the attorney to discuss their health care plans. Information was often passed to me on scraps of paper with my mother’s handwriting. Today she had a blue folder. The contents were typed on paper with a letterhead. This was serious stuff. My parents told me that I would be in charge of health care decisions for them. I was their youngest child but due to my RN license and my close proximity to them I was the obvious choice. We discussed what they didn’t want: no tubes, no machines. They told me they were to be cremated. They had made all the arrangements. My job was to carry out their wishes. My parents were in good health at the time. As I nurse I understood the importance of designating a health care proxy. I was glad that they were proactive in their health care. They started the conversation that all families should have before a crisis when there is a pragmatic plan without the emotion attached. This piece of legal paper and the subsequent conversations with my parents about end of life choices has saved my sanity. I know without a doubt that I upheld my obligation to my mother. “Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships,establish their legacies, make peace with God, and ensure those who are left behind are okay. They want to end their stories on their own terms. The role is,observers argue, among life’s most important, for both the dying and those left behind.”
I would consider my mother’s “dying role” to be from September 2015-April 2016. During this time my mother was on a carousel of hospital, rehab, home. Each step of the way we were confronted with the question of whether or not my mother was safe at home with an 89 year old caregiver, my father, her husband of 63 years. My honest answer to myself was safe enough. I certainly understand the importance of safety. It is always the focal point of national guidelines for nurses. However my conversation with my mother convinced me to focus on putting life into her time on earth rather than time into her life on earth. Elderly people want to spend time with family. Studies show they spend more time being and less time doing. My mother enjoyed the company of family. At home,in the familiar surroundings, she felt safe and secure. Sure she ended up on the floor and couldn’t get up. My father made her comfortable with blankets and pillows until help arrived many hours later. When I saw my mother propped up on the floor with a snack in front of her she looked like a kid at a sleepover. Imagine my surprise when I read about a similar scenario in Dr. Gawande’s book. This was the new normal in my parents’ life. I called it The Adventures of Mae and Wil. The point is that although those in charge of patient aftercare in nursing home rehabs and hospitals saw my mother’s situation as less than optimum I believe they were using the wrong criteria. The criteria that I used was What does my mother want? What can my father do safely? We got extra services and kept my mother home. She was living her life as she chose.
The last month of my mother’s life was difficult for the family. We knew it was the end of the carousel ride. Coming to terms with your mother’s mortality is gut wrenching and heartbreaking. My mother was aware that her life was coming to the end. She told her children she loved us. She said she was happy. She had many family members come to spend time with her and pray with her. She saw in her great-grandchildren the legacy she was leaving behind. My mother left this world in peace. She knew she was loved. She left on her own terms.
“For human beings, life is meaningful because it is a story. A story has a sense of whole, and it’s arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute – by – minute levels of pleasure and pain miss the fundamental aspect of human existence. A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves. Unlike your experiencing self- which is absorbed in the moment- your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works as a whole….and in stories, endings matter.”
A few weeks ago I was listening to a local radio show which has personal stories that reflect the greater human experience. I thought about my own experience over the past few months visiting my elderly parents and witnessing my mother’s steady decline. I grabbed my iPad and started writing and the tears streamed down my face. I hit the send button. It was carthartic. I was happily surprised when I received a response from the radio program host stating my essay was accepted for reading and broadcast. This would be a great tribute to my parents. I was hoping that the nature of the essay would fast track it for Mother’s Day. I would be able to play the podcast for my mother. I was contacted for a schedule date. April 25 would be perfect! Just 2 weeks before Mother’s Day.
My mother spent most of April in the hospital. She had lots of visitors. We all knew this routine of hospitalization,rehab, home then repeat was a good indicator of my mother’s failing health. I think she had nine lives. She kept rebounding. She had such a joy of life. April 24 I was at work. I got the call from my sister, then the doctor, then my spouse. It was time to start the vigil. I left work to sit with my family and say goodbye to the most loving mother. April 25 @ 0245 my mother had her final breath.
Obviously I postponed my appointment for the reading of the essay. A couple of weeks later, I rescheduled. I asked myself why I wanted to do this. Why do I need to do this? Why do I need to tell my mother’s story?
I was walking in my neighborhhood and stopped to talk to a neighbor. I informed her of my mother’s passing. She shared her story with me about her own loss a few years ago. We were happy to remember our mothers and our interactions with them. It felt good.
I returned to work 2 1/2 weeks after my mother died. A coworker stopped to offer her condolences. She told me how she followed my mother’s progress on facebook and loved the pictures I posted. She told me of her experience as her own mother passed last year. We shared a connection. We became part of the same club. We were unified.
I realize this is why I want to share my mother’s story. No one will ask How is your dead mother? But as daughters we want to tell the world. We want to say this is where I came from. This is who I am. This is the greatness I can become. Here is her smile. Here is her laughter. Here is the goodness she has left for the world. Here is my mother’s story.
Are we out of the woods yet? Are we out of the woods yet?
Are we in the clear yet? Are we in the clear yet?
I have this Taylor Swift song running through my head like a soundtrack of my new life. The last thing I say when my head hits the pillow is “just make it through the night, Ma.” The first thing I do in the morning is check my phone to make sure I didn’t miss the dreaded phone call. Then I breathe a sigh of relief. My life was not always so symbiotic with my mother. It just happened 8 months ago with a simple call from my father. He said my mother was in the hospital. That was an unusual occurrence then. Now it’s the new normal. My mother has spent equal time at home and in the hospital/rehab over the fall and winter. Now the hospital is her primary place of residence. Our relationship has always been close. Now it is like a folie du deux. That’s when twins share the same psychotic delusion. Only in my case it’s somatic. Now that my mother suffers from declining health I sometimes feel the same ailments. Her symptoms stem from a broken body. Mine are from a broken heart. I feel tightness in my chest. I have shallow breathing. I am fearful of death. I cry when she says “it’s not worth it. I can’t do this anymore.” She is old and tired. I know she has lived a good life. I just can’t let her go. The past few months have been teamwork. We have carried each other to the finish line.
My family asks how my mother is doing. I don’t know how to answer. How is she doing compared to what? What time frame are we using? Are we talking about physical health, emotional well being, lab reports, vital signs? Are we comparing this morning to now or comparing last week to today? The other day a coworker asked how she was and I instinctively said fine. Then I said, not really fine, actually she not fine at all.
I used to be the planner of the family. I know what day I am taking off 6 months from now. I have tickets months in advance. I am not spontaneous. I don’t like surprises. I like consistency. I walk the fine line between stability and stagnation. I like order and structure. An elderly parent in poor physical health throws all semblance of routine out the window. I can’t tell you what day would be best to do anything. I don’t know what I’ll be doing tomorrow. My day revolves around visiting my mother. This week she was at the rehab, the ER, PCU, SICU,ICU, and now we are waiting to find out if she will be transferred to another unit. We have dealt with fluid in the lungs, dehydration, rehydration, pneumonia, low blood pressure, high blood pressure, unstable blood sugars. Then after receiving the information from the medical team, the phone calls are made to family members. How is she ? Are we out of the woods yet?
When I entered ma’s hospital room I expected her to be well rested and eager for company. After all, it was 1 pm. Everyone had a late start after the long night in the ER. The nurse was giving her meds in apple sauce. Ma was having trouble swallowing. Pretend it Ruby Tuesday’s seafood trio, I joked. A little smile came to her face. She had a few bites of pudding and barely sampled her entree. She fell asleep. By now the rest of the family was surrounding her bed. The vigil was about to begin.
Ma is one month shy of her 88th birthday. She has lived with heart disease since her 50’s. She is a tough woman. Never complains of pain or discomfort. Just let her rest awhile. I watched her breathing for 7 hours. Just don’t stop breathing. I held her hand. I whispered words of encouragement. I need you to get better,Ma. I want to take you home. She would mouth ok or smile. When she opened her eyes they seemed to dart across the ceiling. She didn’t focus on my face. She received a phone call from her sister. She listened and made a few audible sounds which my sister relayed to my aunt. When the CNA rolled her from side to side she didn’t fully wake up.Ma was always a light sleeper and she was one step from comatose. My sister and I played music on my phone. We sang along to Sweet Caroline. My brother cringed at our rendition but Ma’s mouth would move in attempt to sing the refrain. My brother was hoping we would refrain from singing, but did enjoy ma’s attempt.
Ma had the signs of life. She was breathing, her vital signs were ok, her skin was warm and dry, her kidneys were functioning. She just wasn’t alert. We say she has the Irish gift of gab but today she barely spoke. I had resigned myself to the fact that Ma might not make it out of here. I could tell from my family’s tears, look of worry, and moments of silence that we all felt the same way. Ma appeared to be at the brink of life and death.
Visiting hours were over. I couldn’t bear the thought of Ma dying alone. I decided to talk to the nurse frankly. I expressed my fears to her and asked if the doctor indicated any concern that she might not make it. Despite the high lab values in the ER indicative of congestive heart failure and critical blood sugars the nurse said she was medically stable. I said if my mother makes it out of here we would bring her home with services. She already has a medical bed and we would buy her the intermittent air compression mattress to maintain her skin integrity. I mentioned the price tag of $2000. At this moment, my ever frugal mother, opened her eyes and said, clear as day ” what are we talking about? What’s going on now?” After all the emotion of the day my whole family broke into laughter. ” We are spending our inheritance.”
We all said goodnight to Ma. We didn’t say goodbye. We left in good spirits.
Lazarus was raised from the dead.
I have been haunted by a song from my childhood from the Steve Miller Band. It’s called Motherless Children. Its repetitive line is “Motherless children have a hard time when their mother is gone.” Although I am an adult I can’t imagine a life without my mother, yet that day is frighteningly close. So when I face that realization I recall another song from that era. “When I think of all my times of trouble, Mother Mary comes to me, speaking words of wisdom. Let it be.”
My mother is 87 years old. We make trips to the hospital more frequently now. Last night was the most recent. I watched her huff and puff with pursed lips and a rapidly ascending and descending abdomen. I listened to the nurse report her elevated lab values. I saw the fatigue in my father’s eyes. I felt the sadness reflected in my sister’s face. I was grateful for my brother’s humor. I was comforted by my spouse’s presence. I felt blessed by my mother’s smile. “Tell me you will make it through the night,Ma.” “Everything will be fine” she said in a whisper.My goal over the past few years has been to honor my mother and father. I wanted to show them that all their effort and sacrifice for family was not wasted. I wanted my mother to know how much a child needs her mother no matter how old I become. On a snowshoe hike last year I wrote down a few words for her.
Don’t ever doubt that you are a good mother
You had Mother Mary for inspiration
You prayed the rosary,said a novena, waited for a revelation.
Mary has revealed herself to you.
Beginning with her Immaculate Heart.
If you want to see our Mother’s love
Your mirror is the place to start.
Don’t ever doubt that you are a good mother.