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It’s a cold night. I want to feel anything other than what I am feeling. I pop the flip top off the Jeep and drive the 20 minutes home. The cold air comes in from above and fills the front seat with a cool damp breeze. I’m driving with the heater on, and the dry, hot air warms my feet and my face. The music is playing low, and I can barely hear it over the sound of my tires on the road. Its been a long, long night and all I can think about is what I chose to fill the shopping cart.
My mother has joined the ranks of the critically ill senior population and has begun the unending shovel from one facility to another. Into the hospital, into rehab, back to the hospital, to a new rehab. Monday dialysis. Wednesday Dialysis. Thursday Chemo. Friday dialysis. All the while she clings to life refusing to give up. I have asked her more than once, “Are you sure this is what you want?” When I close my eyes at night, I can hear the beeps of monitoring systems, the oxygen pumps and the soft whirl of the dialysis machine in my head.
I have seen the absolute worst of care. We shut our parents into facilities ill-equipped to deal with their needs. Of course, the minimum of care is only available to you if the facility takes Medicare and the service you need is approved. I have listened to patients crying out for help and watched how providers walk through the halls with ease – tone deaf to the yelps behind the curtains. I have not left my mother’s side. But so many others are here with no one. Left to the care of people who barely know their names. I hear their phone calls to loved ones begging to go, “please don’t forget I’m here.”
My mother was discharged from the hospital and sent to an acute rehabilitation center. When she times out of the approved care, the assisted living facility that is currently her home can no longer take her because of the decline in her health. I have two weeks to find a new home for my parents. I’m in a panic so thick it feels like cement boots pulling me down. The woman in the bed next to my mother shouts out, “I hate this place. They’re killing me here.” My mother shutters in fear. I put her headphones on to drown the black fear that casts a shadow in this place where people come to die.
I whisper in her ear, “I will never leave you. You will never be alone. I may have to go home to sleep for a few hours, but I will be back here with you every day. You will never be alone.” She has a fever now. I wonder what that means and what part of her body is failing. I stopped drinking alcohol for fear that I too will end up here – lying in a body filled with poisons because my kidneys can no longer wash away the years of living.
My mother looks at her chest and says to me, “They have used my chest for everything you can think of.” I tell her, “But you are still the most beautiful woman in the world to me.” She thanks me. All the while her skin is so thin that I can see every bone on her body, and her hair is falling out from around her face – I look at her, and all I can see is love. Unconditional love and acceptance. She really is so beautiful. You know like that feeling on the beach in the early morning – watching the sunrise with a light cool breeze tugging at you – that kind of love. She is the light of so many lives, flickering slowly as the candle melts.
It was just a few hours earlier that I went to the drugstore. I wanted to make her transition to her temporary home as easy as I could. I went to the store to buy a few things – a few comforts of her home to help reduce the panic that sweeps over her. I grabbed a cart when I walked through the door – honestly, I didn’t think I could carry a basket through the store I am so weak, and besides I had no idea what I was going to buy.
I wanted to hang her clothes in the small closet she was given. Her clothes were in bags, crumpled in wrinkled piles. My mother was always so meticulously dressed. Now she wears baggy sweatpants – easy on, easy off. She goes through two or three pairs a day. She wears sweatshirts – and anything Ohio State. I’ll get her some hangers – that will make her happy.
She has been scratching her skin – apparently, this is common when you begin dialysis. I keep telling her not to, but she forgets and five minutes later and starts to scratch. I look for 20 minutes for the best cream. They don’t sell a bottle for helping with cancer or failing kidneys. I settle for the “calming” lotion for her dry skin. When I get back, I will soak her in it and massage her muscles and make her feel the power of the love of a daughter for her mother. I wonder how the other patients here must feel – not having felt the love or touch of a loved one in so long. It must be powerful loneliness – trapped in little dark rooms.
I add wipes to make sure that I never touch her without first making sure my hands are clean. I buy her protein drinks for kidney patients – whatever that is. I buy a package of labels to mark her stuff, so it doesn’t get confused with her roommates. And then it hits me – she is leaving this world. With panic I start going down each isle – what can I put in the cart to make her happy, make her smile? What can I put in the cart to make her pain go away? What can I put into the cart to help her live one more day? Slowly it creeps into my brain that there is nothing I can add to the cart – nothing – that will keep her with me.
I walk slowly up to the counter to pay, and I am paralyzed. I cannot speak. My eyes fill with sadness. I feel so powerless. I cannot allow my heart to lead my head down this path. I have to stay focused, detached, distant from those feelings. There is so much to do every day. I just don’t have time to cry.
All the siblings have come and went. They know it may be the last time they see her. But they go back to their houses, back to their lives and their families and leave me here to face the end of the journey alone. I am thankful for their help, but I can’t help feeling I’m in over my head.
The rumbling of the tires wakes me from my memories of the day and reminds me that I am on my way home. It will only be a few hours before I journey back and tend to her every need. I look up at the evening sky and take in a deep breath. It’s a clear, crisp evening and there is nearly a full moon shining brightly down on me. It’s cold inside the Jeep. The cold air of the evening is winning the battle over the heat rising from the floor. I’ll be home soon. I’ll sleep. And tomorrow I’ll wake and face whatever the day brings.
But she will never be alone. I will never leave her.
About the Author:
Julie is a dynamic, engaging change agent who brings integrity and passion to everything. Through her books, articles, speaking, consulting, and teaching — her purpose is to change the world through thought-provoking dialog and interaction. Julie has a B.S. degree in computer science from The Ohio State University, a MaED from the University of Phoenix, and is currently pursuing her Ph.D. in Management and Organizational Leadership in Information Systems & Technology from the University of Phoenix. She also is an ITIL Expert, Certified Help Desk Director, and Certified Governance IT Professional.
Julie speaks at conferences worldwide on topics of leadership, business, knowledge management, service management, governance, organization development, process engineering, service level management, and continual improvement.
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