CareGiver Guide

You can't care for another until you care for yourself…first!

MyStory

‘My Story’ tells the story of  how I became a CareGiver for my mother.

In the spring of 2003, my mother, Mary T. Anastasi, began to suffer from symptoms of primary biliary cirrhosis. Though she had received the diagnosis of the disease about 10 years earlier,  she had been symptom free.

“Primary biliary cirrhosis is the irritation and swelling (inflammation) of the bile ducts of the liver, which blocks the flow of bile . This obstruction damages liver cells,” according to Medline Plus, an Internet medical site (1).

The cause of the disease is unknown. The only cure is a liver transplant. Otherwise, the best that traditional medical medicine has to offer is prescriptions to reduce the discomfort. What follows is ‘my story.’

I Closed the Book…

I closed the book, placed it on the table, and finally, decided to walk through the door. The book was one of a two volume set* which gave me comfort while caring for my mother. She was living with the pain caused by the effects of a liver that was dying. About ten years earlier, a biopsy confirmed that she had primary biliary cirrhosis, a disease with no known cure other than a transplant.

*[Kitchen Table Wisdom & My Grandfather’s Blessings by Rachel Naomi Ramen, MD]

I reached for the door knob.  Looking back, my eyes fell on my mother in a coma, lying in a bed in a hospice facility. Her chest barely rose as she struggled for her next breath. I heard the sound of the air caught at the back of her throat as it rattled the substances stuck there. There, on her back, eyes closed, seemingly at peace –that was the scene I captured of my mother the evening before she died.

My next thought was where to go for dinner. Should I walk down First Avenue to Simone’s or take the bus home and make dinner? Even if the friendly bar tender wasn’t there, it would do me good to eat surrounded by the conversation of others.

I felt guilty that I could not bear to spend another moment in that room waiting for my mother to die. It was all that I could do to sit there and read, and sometimes to pray. It was hard just being there, being there with nothing left to do for her, nothing left to say.

I wanted to be there for her as she had been there for me. So many times as a child, mommy wiped the dirt, the hurt, or the tears from my cheeks, sometimes with a damp wash cloth, and sometimes with spit and a tissue. Why couldn’t  I stay with her for one more hour, one more minute? I had nowhere to go to, no wife, no children to care for. I would return to an empty apartment — her apartment.

To care for my mother, I had moved back into the same bedroom in her apartment where I had spent most of my adolescence and some of my adulthood, until I moved out for good.

It once was our apartment where we all used to live together, we, as in my father, my mother, me, and my older sister, Gloria. Now it’s her apartment. My father and sister were both dead.

No, I wouldn’t go back to that apartment tonight – at least not right away. Tonight was not a night for me to be alone with my thoughts.

Then I noticed that book on the table. For almost a year, that book and its companion had accompanied me on my journey of care giving. I started to go back for it, but remembered I had finished reading it moments ago.

I couldn’t remain in the hospice room any longer. Quietly, I closed the door.

Little did I know that that was the last time I would see my mother alive.

I walked down the carpeted hallway towards the elevators. The walls of this hospice facility were painted in pastel colors of green, blue, and pink. I boarded an elevator, made my way quickly through the lobby and began walking down First Avenue towards Simone’s.

It was getting dark by the time I reached Simone’s. There weren’t many diners or people at the bar. Pulling up a bar stool, I asked the bar tender for a menu, and probably (I really don’t remember now) ordered a Stella Artois on tap, my drink of choice at that time.

I didn’t stay long after eating dinner. The conversations around me brought me no comfort.

My next decision was whether to take the Second Avenue bus home or walk. On weekends, the buses don’t run as regularly as during the week. I figured that by the time I waited for the bus to arrive, I could be a third of the way home. I began walking.

I had walked home many times over the past 10 months since that fateful day on the platform of the Long Island Railroad waiting for the train back to Manhattan.

Early in 2003, I had started working for a small California based software company. A  board member had recommended me to this company. He had hoped that with my prior experience, I could help turnaround the fortunes of this company.

It appeared to be a good fit.

As VP of Field Operations, I traveled extensively from my home in Irving, Texas to visit customers, sales prospects, and software partners. I was making trips to New York City to develop a relationship with one of our larger clients and a major software company which was one of our partners. These trips gave me an opportunity to visit with my mother. I stayed with her. It saved the company money on hotels.

It was after a visit to this major software company on Long Island that I found myself with the CEO and chairman of the board of our company. It was a beautiful spring afternoon in late May of 2003.  We were waiting on the platform of the Long Island Railroad for a train back to Manhattan. There was irony in this visit.

I used to work for this partner software company. It was that same software company that transferred me to Texas in April of 1989. It was the reason I was no longer living  close to my mother. Now, 14 years later, I had just left their corporate headquarters with my new managers.

The chairman of the board came up to me and said: “Richard, you know it’s going to take a 110% of your effort to help us turn this company around. And I know that you are trying to care for your mother in Manhattan. You can’t do both. If you decide to leave, we’ll pay you until the end of the month.”

A number of emotions hit me at once. Shock – can I afford to be without a job now? Disappointment – I had hoped there would be a way to continuing working while caring for my mother. Anger – Why wasn’t there another way? Fear – Can I care for my mother if I don’t have a job?

All I knew for sure was that I was going to care for my mother. Clearly, I would not be working for this company any longer.

I don’t remember exactly what I said. With this storm of emotions stirring within, somehow I managed to stay calm. I made some reply indicating my choice to care for my mother.

That was how I began my life as a CareGiver for my mother.

 

(1) http://www.nlm.nih.gov/medlineplus/ency/article/000282.htm, courtesy of Medline Plus, a service of the U.S. National Library of Medicine at  the National Institute of Health

By Richard J Anastasi        copyright © 4-3-2012

Leave a Reply