Epiphany...

Friday came in the blink of an eye and I arrived ten minutes early for the meeting at the extended care facility where Mom lived two years prior to her passing. I had been her advocate. She used to think I could leap tall buildings. But I abandoned my superhero apparel months ago. Instead, I wore my long grey jersey skirt, a moss green sleeveless cotton tee with a loose peach colored silk tank layered over top, and on my feet, silver, leather slip-ons. I heaped lofty hopes on this oatmeal and granola attire, empowering it to keep potential volatility at bay. For added luck, I donned a necklace I had painstakingly stitched. Mom always loved my creations. 

The late summer sun warmed my shoulders as I stepped from the car with Mom's photo, my statement, and a list of questions tucked under my arm in an old zippered work portfolio. My ergonomic tapestry Ameribag was draped lazily across my back and I hooked my trusty water bottle over the index finger of my right hand. I took some deep breaths as I walked the few short steps across the parking lot before entering the building. When I opened the door the vapor lock felt like it drew me inside. 

With my first breath the familiar smell took me back months to my morning visits with Mom. Tears threatened. A petite professional-looking woman followed me inside and I regained my composure enough to ask if she was Jillian, the Quality Coordinator from Patient Relations who arranged this meeting. She confirmed my suspicions and I extended my hand to introduce myself. Her eyes sparkled and she smiled warmly making me like her instantly. We advised the attendant at the desk that we were there to meet with Mary Lou, the Executive Director of the facility. She waved us to seats in the foyer while she summoned Mary Lou.  

As we sat waiting familiar faces appeared, each one greeting me with a hug and words of concern or "We miss you...". I wrestled with more tears. Soon, Mary Lou appeared and escorted us up to the third floor boardroom. She introduced me to Heather, the new Director of Care, whose specialty is 'End of Life'. With the formalities out of the way, I placed the framed photo of my Mom on the table. It was the one I'd received from the funeral home with the poem by Judith Bulock Morse that reads;

Remember me when flowers bloom

Early in the Spring

Remember me on sunny days

In the fun that summer brings

Remember me in the fall

As you walk through leaves of gold

In the wintertime, remember me

In the stories that are told.

But most of all... remember

Each day, right from the start

I will be forever near

For I live within your heart.

I began the meeting by saying that I wasn't there for a pound of flesh, that time was past. I needed only for them to hear the statement I had prepared and do their best to answer the questions that would follow. They were a respectful, captive audience. My statement not only detailed the events leading up to my Mom's passing but also the emotional anguish we suffered. Tears ran down my cheeks as I read. Heather wept with me. Then I came to the last paragraph of my statement;

"The nature of my Mom’s death and how it was handled has left my family feeling upset over not being informed. It’s left me wrestling with feelings of guilt over things I should have or could have done. But I am not an expert on death and dying. Death is not an event I’ve experienced often nor took a class in to prepare me for the eventuality. The professionals at this facility did or certainly should have. They are the ones who failed my Mother and her respective family."  

There was silence for a few moments. I looked up at Mary Lou and she said, "You're right, we failed you. We're so sorry." Then the discussion opened around the breakdown in communication, the lack of comfort measures provided, all the missed opportunities. They detailed what should have happened, what changes have been made and will be made to ensure it doesn't happen to someone else. Heather asked if she could use my statement as part of a case study, the photo and poem too. She would utilize it as a teaching tool. Then we addressed the questions. 

Even though there had been an independent third party audit done on Mom's case many questions went unanswered. Heather asked if she could take them and try to find answers for me. I handed them to her. We exchanged business cards, said our good-byes, and Mary Lou escorted me downstairs. I walked out the door feeling somewhat lighter. But there wasn't time to dwell on it. It was already noon and I had a lunch date with Emma. 

Once in the car I sent Emma's Dad a text saying I was on my way.  I no sooner pulled up in the driveway when Emma bounced down the sidewalk to greet me. She prattled on about the lemonade mix in the worn ziplock bag she held in her hands. I squeezed in the question about what she wanted to do and in no time her scooter and helmet were in the back of my car and we were on our way to McDee's. 

She had her usual Happy Meal for lunch. Then we headed for Amanda's house to visit Ana and GG.  A little more than an hour later we were making lemonade in my kitchen and she was regaling me with her business plan. I tried to convince her that she might want to reconsider charging a dollar a glass for lemonade. But she prefers loonies to quarters. I changed my clothes and with our thirst quenched we put the halter on the dog and headed for the park. 

Emma scooted in front while Zoe and I walked. She stopped for a brief stint on the playground equipment. But Zoe was anxious to get moving so we soon hit the trails again. Emma didn't scoot ahead this time, she slowed her pace to mine and said, "Sometimes I feel guilty because of the times I told my Mom I hated her." My heart lurched and I replied, "Oh Emma, your Mom knew you didn't mean it. She loves you and would never want you to feel guilty." As those words crossed my lips it felt like my own Mom tapped me on the shoulder and whispered in my ear, "I love you and I don't want you to feel guilty?"  

Emma seemed satisfied with my answer and scooted away, flashing me a smile over her shoulder. I smiled back. Emma and I make quite a pair. We both need to let go of things we think we could have or should have done differently. In our relationship, support and comfort goes both ways. Thanks to her I have my cape and tiara back, and when the tall buildings come, I'll be ready...

The rest is pixie dust...

Fingers Crossed...

Before my Dad died, he often talked about 'dying a good death'. I didn't favor this topic so I never asked my Dad what he meant by that. I didn't want to face the fact that someday I would walk this earth without my parents. Orphaned, if you will. Dad had Asbestosis and a slow-growing tumor that was gradually taking up more space than his organs would allow. According to Mom's journals, it was untreatable and had become a part of his physiology nearly thirty years earlier; unbeknownst to me.  

Dad's health gradually deteriorated. Eventually he required oxygen twenty-four hours a day and could barely walk ten steps without taking a rest. This was not my Superhero Dad, invincible protector of those he loved. I ignored all the outward signs and was in denial that my Dad was dying. It wasn't until we had what would be our last family dinner that the light donned. Dad always bought the best cuts of roast beef and Mom cooked it to perfection. It was a banquet of roast beef, Yorkshire pudding, mashed potatoes, Waldorf salad, a tossed green salad, corn, turnips and "Granny's Special Sauce". That's what my kids called Mom's gravy. It was heaven. Dad sat at his usual place at the head of the table, leaning on the arm of his chair. He wasn't able to reach or pass so I helped get his plate ready. When he sat looking at his plate, unable to take a single bite I knew his time was approaching. That was Easter 2003. A few days later he was hospitalized. 

I called him in the hospital on his eighty-fifth birthday in May and he seemed adamant that he was going home. Five days later the family was called. He was unresponsive that morning and died early the next day with my Mom at his side. His heart just stopped and he became so very still. I suppose as the process goes this could be described as a good death. It was painless and he had been relatively coherent until near the end. Then he just slipped away. He went home.

My Mom's journey home was not as easy. I would describe her death as an ordeal. She started to go about the business of dying Christmas morning of 2010. Her cast iron stomach was unusually upset and she was out of sorts. During the weeks following the holidays, angina attacks became more frequent and her blood pressure dropped to near cadaver levels. She was weakening, spending more time in bed, refusing meals, acting strangely. At the facility where she was living I told as many who would listen that I thought my Mother was dying. My words fell on deaf ears. 

Then on a Saturday in March, nine days before her death she woke up with a terrible sore throat and a cough. Mom's voice was typically a whisper but this sore throat endowed her with the voice of a demon. I advised the nursing staff and they administered Robitussin. The next day she was worse so I asked that a physician see her. I asked repeatedly for five days that she be seen by a doctor. Finally on Friday they faxed the staff doctor who prescribed treatment for either pneumonia or heart failure, sight unseen. 

They began administering the medication on Saturday, one week after the onset of her symptoms. Mom was already struggling to breathe due to the buildup of fluid in her lungs and was often in a state of panic when the next breath seemed out of reach. The registered nurse on duty was beckoned but she declined to give her any medication to ease her discomfort, "It might slow her respiration and heart rate." she said. I asked at that time if she thought my Mother was dying. She replied, "Hard to say, some rally from this." When I returned on Sunday morning the situation was much more dire.

The nurse was unable to administer Mom's morning meds because she could no longer swallow. She was unable to speak now and held my hand like it was a lifeline. I left her side for only two hours that day. Her breathing became more labored as the day progressed but not once did anyone advise me to notify my family. At the supper hour, one of the aides came in to turn her and noticed my Mom's breathing. She said, "The way your Mom is breathing is called 'chainstoking'. Death is imminent. Say your goodbyes."  

I was in shock - paralyzed with grief. My eyes were almost swollen shut from crying. I hoped help would come. But none arrived. Various aides came to reposition her and greeted her like she was vibrant and healthy and able to respond. I was tired and sore from sitting on a straight-backed chair since seven o'clock that morning with only a two hour break midday. No comfort measures were offered to either one of us. From the supper hour until I finally left Mom's side at one o'clock in the morning not one registered nurse crossed the threshold of her room. I was all she had and I left her. I waited until she closed her eyes in sleep. Then I gently pried my hand from hers, kissed her and told her I was going home for a couple of hours to get some rest. When I got home the first words out of my mouth to my husband were, "I'm a coward. I've left her in her hour of need. But I just couldn't stay any longer." 

We were nearly ready to return to Mom's side when the phone rang at six thirty-two the morning of March twenty-first. I was advised by a voice on the phone that my Mom's breathing had worsened. We arrived shortly after to find her alone, her head turned to one side, her eyes closed, and her body so very still. The oxygen mask was still over her face so I removed it and silenced the whir of the machine with a flip of a switch. My husband and I sat there with my Mom in the quiet of death for forty-five minutes before any of the morning staff came into her room. There was some scurrying, the nurse was called and Mom was pronounced dead. Everyone but me seemed so surprised. 

After the memorial service I wrote a letter to the Executive Director of the Facility and cc'd the Minister of Health and Protection for Persons in Care. I outlined succinctly the series of events that lead to my Mom's passing and how I felt they had failed my Mom and me. I received a letter of acknowledgement from the Executive Director weeks later with a cavalier invitation to call her anytime, like we were old friends. I heard nothing from Protection for Persons in Care. Eventually I heard from the Deputy Minister of Health who expressed condolences and advised me to call Patient Relations. Thanks to them, on Friday of this week, five months after my Mom's death I will have a face to face meeting with the Executive Director. I'm not sure what I hope to achieve from this close encounter.

Part of me wants to hold someone's feet to the fire. The other part of me just wants to lay my guilt at abandoning my Mom to rest. I know I can't change the outcome and give my Mom a do-over so she can die a good death. I can't press the call bell or go screaming down the halls now. I'd like to think I can change things for people who have yet to experience losing a loved one in an extended care facility. By speaking out maybe they will be given the comfort and support they need. At least that would give me some peace - some closure. Fingers crossed.

The rest is pixie dust...

On Common Ground...

The older I get, the more I learn. The most amazing part is, I seem to be learning a lot from a very young teacher. She's only eight years old but she's wise beyond her years. Emma's not shy by any means and like her Mom, she's not afraid to ask questions. That's one of the things I love about her. Emma's fearless when it comes to seeking knowledge.This trait will be useful to her throughout her life - especially now. 

Emma's Mom lost her battle with cancer just two weeks ago. Angela was my friend, someone I cared for, listened to, and laughed with. I still have our text messages from July on my cell phone - precious snippets of conversation now. And when I browse her facebook profile I see photos of her not even a year ago with her arms around Emma at a family celebration looking robust and healthy. There was no foreshadowing what was to come. But that's cancer for you. It's left Emma without her Mom, those arms around her only shadows now. 

Emma and I spent  a lot of time together this past year everyday after school. We talked a lot, laughed a lot, learned a lot. So I guess it seemed natural to her to spend the better part of the day following her Mom's passing with me. She sent me a text message from her Dad's phone Tuesday morning telling me about her Mom and asked if we could get together that day. So I picked her up at her Nona's around lunchtime. When I arrived she greeted me with a hug - her beautiful brown eyes moist with tears. My blue eyes brimming. We climbed into the car, buckled up and headed for our usual lunch spot. 

McDees we call it. On this occasion, Emma preferred to go inside as opposed to the drive-thru. At the counter, I ordered her a Chicken McNugget Happy Meal with a girl's toy. The toy was "Clumsy" Smurf - perfect because we were going to see the movie later in the afternoon.  She found a place for us to sit and then bounced over to the pop machine to fill her drink cup with whatever her liquid pleasure. As usual, I stole a couple of french fries while she wasn't looking. She ate enough to satisfy her hunger, then packed up the rest and decided it was time to head to my house to see the furkids. 

This was Emma's first visit to our new home in Sherwood Park. But that wasn't the big draw. She wanted to see the critters the most. Zoe, our dog is her favorite. When she sees Emma she knows there's a treat in store for her and there's no controlling her wiggle-bottom. The tail actually wags the dog. Emma loves that. There's just nothing like being greeted with unbridled enthusiasm and no better prescription for a wounded heart. Once the greetings were out of the way, Emma and I decided to take Zoe for a stroll through the park nearby. 

It's a lovely park, nicely treed with a winding, hilly trail. Ducks bob on the pond, going bottom's up for some tasty morsels below under the watchful eye of the cattail sentinels. Dragonflies lazily police the miscreant mosquito population while the squirrels and sparrows gossip. It's a magical place on a warm summer's afternoon. Maybe that's what helped Emma open up while we walked the loop and Zoe pulled incessantly on the leash.

"Why do people get cancer?"

"I don't know Emma, cancer just happens."

  

"Did my Mom and Dad know before?"

"I think they did Emma, but imagine how hard it would have been for them to tell you."  

"Why do we have funerals?"

"We have funerals to say good-bye to our loved ones, celebrate their lives and allow other people the chance to pay their respects to the person and their family." 

"Why do we dress dead people?"

"We dress them so they look nice for their funeral." 

"How do you know someone is dead?"

"Because they stop breathing and their heart stops beating." 

"What makes them dead?"

"When they are too sick or hurt for their spirit to stay in their body."  

"What is a spirit?"

"You know the part of you inside that makes you think and feel? That's your spirit. That's what made your Mom who she was." 

"Is my Mom sad?"
"Yes Emma, your Mom is very sad to have to leave you." 

"Did she want to stay?"
"She did, and she fought very hard to stay, but her body was too sick." 

"Is there a chance that on the third day, she'll rise again?"
"That would be nice wouldn't it? But no Emma, only Jesus can do that."    
 
Closing the loop on our walk ended her inquisition. Emma is a bright girl - but these questions were more insightful than I ever expected. I was comforted by her openness. Later, when I considered this time we shared, I imagined that we weren't alone in the park - that our Mother's walked with us. Emma's, to help her ask the questions and mine, to help me give the answers. Emma and I both lost our Mother's this year - both on a Monday. And so, we walk on common ground. Losing your Mom is hard. But Emma has shown me that even though you may feel sad everyday, you still have to welcome distractions - walk the dog - go to movies - skip a little - because the world keeps turning on its axis. Our Mom's would like that.

The rest is pixie dust...