By Kat Charlesworth
It has only been a couple months since my daughter passed away.
The days without her are much like working a bad job. I muddle through, trying to stay busy and do what needs to be done. I see a grief counselor; I go to support groups. I am from all appearances—even to myself—doing amazingly well, considering. I have only had one meltdown that left me hysterical and unable to function. I left work and took the rest of the day and the next off to find a counselor. I have a strong spiritual life and a deep faith, and even though I think this was a crappy plan, I believe something or someone much bigger than me had a reason for taking her.
I have to believe that. For my sanity, I do not have any other choice.
I had had a good week. I was in a good space; or so I thought. I had planned on doing some writing, catching up on mail, spending the evening with my two dogs; they had been getting neglected due to my mental health meeting schedule.
Starting with the mail, I opened an insurance letter and then an envelope from the hospice center in Arizona where my daughter spent her last two days. It was a customer satisfaction survey, which on the surface seemed benign enough. I was happy to fill it out. They were wonderful to us. I could give them nothing less than glowing reviews. I started a pot of coffee, and started reading the questions.
Did your family member have pain?
Was their pain managed?
Did the staff explain the dosage of medication used to control your loved one’s pain?
Were you confused about how their pain was controlled?
Were you confused about the process of their passing?
At that question I stood to get the coffee, which was about to finish brewing. I thought, “Was I confused about the process?” I guess, in a way I was. If for nothing more than how fast it happened.
The day we arrived at the hospice from the hospital, my daughter was wheeled into the room on a stretcher, the nurses and staff huddled around her. I was asked to wait in the lobby area outside of the room. She was about six feet tall and a force to be reckoned with when agitated. She had gotten off the bed and would not cooperate with the nurses. A frontal lobe infarct—a stroke—had left her without the ability to comprehend why she could not just get up and do what she wanted. They called me in. I helped her to the bathroom and then got her back to the bed. She would listen to me, but not to just any nurse trying to tell her what to do.
My daughter sat on the edge of the bed, looked around confused and motioned to me like “Why are we here? I thought we were going home.”
She had gotten so excited when we left the hospital. She saw the sunshine and the trees. I think she really thought we were helping her to escape. It had been a less than great experience at the hospital. She wanted out. She had witnessed me in a heated discussion with a social worker after many medical errors had been made, which led to where we were.
As my daughter sat there, she saw the necklace I was wearing. It was a silver bust of The Little Prince; it was her necklace. The story of The Little Prince held a special meaning for us. I had it made for her for Christmas by an artist in Argentina with the initials and date of birth of her infant son on the back. When I had arrived at the hospital from the airport, the ER staff had given me a broken specimen container with all of her jewelry in it. I put that pendant on my own necklace for safekeeping. With all of the events that had taken place, and the damage to her brain, she had forgotten I had it. She pointed to it, smiled and looked excited like we had matching necklaces. She reached to her neck and realizing it gone. She started to cry. She thought hers was lost.
I tried to calm her by explaining what happened, again. She looked around and motioned for me to explain where we were, again.
“We are at a hospice, Nick. Do you remember you had cardiomyopathy and had a heart attack a couple months ago?” She looked confused. “Do you remember the doctor with the nasty attitude?” Her eyes widened with recognition. “Your heart had a clot in it and it broke loose. It has more clots in it. Do you remember me telling you that you had a stroke?” She nodded. She pointed to her head and looked like she was asking if we were there to fix her head.
“Your heart has more clots in it. They can’t fix that because of your brain. Your brain has a clot in it. They can’t fix that because of your heart.”
She paused, tilted her head at me and looked me in the eyes pleading. She knew. She understood. “Nicki, I will be here with you the entire time. I am not ever leaving you until we get through this.” She said the name of her infant son, “Jude…” She only had a few words she could say clearly.
“Don’t you worry about Jude. I will make sure he is taken care of and he will have everything he needs.” She looked at me, again said “Jude” and put her hand on her chest. It would be the last words I would hear her say. The nurse came in just then and gave her a shot. She went right to sleep.
They gave her enough morphine to knock her out, and kept it coming every couple of hours… until my daughter was gone the next evening.
I thought again, “Was I confused about the process of her passing?”
I had made the decision before leaving the hospital that we would start comfort measures, which meant enough morphine to control any pain and discomfort even if that meant it stopped her breathing. I have watched hundreds of people pass away in my career in healthcare. Many from a morphine drip after being placed on hospice or on comfort measures. I knew how it worked. I had made sure a plan was in place. Yet still, I thought I would have a few more days with her, awake at least, to tell her how much I loved her, hold her hand, find a miracle and cure her at the last minute to leave with a happy, or at least happier, ending.
Even though I knew what the outcome would be, my mom brain held out for a Hollywood movie ending. That was not to be.
Grief reminds me of day I once had at the beach taking a much needed long weekend to the shore and arriving with a new swimsuit, suntan lotion and beach chair. Planting the umbrella in the sand and grabbing the boogie board, I headed towards the water. A momentary pause when entering, “What about sharks, jellyfish, what if something slimy touches my leg?”
I’m afraid of the water.
“Okay, I’ll go in up to my knees and see, maybe ride the smaller waves to get in the groove before I venture farther out.”
First taking small waves, sliding in to shore like a boogie boarding champ, then going a little farther out, pause again, enjoying the moment with no reminders of life as I knew it yesterday. Standing facing the shore the sun warms my back, the smell of the ocean in my hair. Looking towards the beach chair and briefly wondering why I even brought it, never wanting to go back to shore.
As soon as the thought passes, an unanticipated wave rises up behind me. Without warning, I am tumbling head over heels under water, scraping knees, elbows, shoulders, forehead, inhaling water, not knowing where—or if—a landing will happen then finding myself face first on the beach gasping for air, crying, snot rolling down my face, choking on the mouthful of sand, unable to move from shock, pain and horror that my bathing suit is no longer covering most of anything it is supposed to, having no clue what the hell just happened.
Standing in front of my coffee pot, wanting to just fill out the survey and rave about how wonderful the hospice staff was to us, that wave came from behind. Before I knew it I was metaphorically under water—gulping and gasping for air. From a distant place I heard a scream, like a wounded animal—a sound I didn’t even realize was coming from me. I found myself on the floor, collapsed, alone in my despair. Slowly I became aware of a sharp pain in my knee from where I landed, two confused pugs staring at me and sobs I couldn’t control, and couldn’t quite complete, coming from a place so deep I didn’t know it existed.
Jellyfish, slimy things touching my leg and sharks would have been a relief.
For a while today, I felt I was headed toward the water, forgetting about the hole in my life that is in the shape of my daughter. But, grief comes in waves.
Kat Charlesworth, a 40-something native of Arizona lives in a beach village in New Jersey with her two dogs. A voracious reader, she makes organic soap, writes poetry and drinks coffee by the gallon.
Editor: Alicia Wozniak