my caregiver story
My journey began years ago when I started volunteering for hospice in New York City. I was profoundly moved and fell so in love with the culture, philosophy and care provided that I began working for hospice as well. It instilled within me a deep
desire to be of service to those who are ill and/or dying and to the loved ones who sacrifice so much to help take care of
them. During that time, I also read, studied and trained with the “masters” in the field as much as possible.
Around 2000, I moved to Florida to be with my mom. Her macular degeneration had progressed to where she was legally
blind. This was the beginning of my personal caregiver journey.
It was during this time that I discovered the power of coaching. I studied, trained, received my certification and began my private practice. It was a thrill to take my previous skills and training and funnel them into the transformational paradigm of coaching.
My mother began experiencing symptoms of COPD, chronic obstructive pulmonary disease. Eventually the disease
progressed to where she was put on hospice at home. I then decided to put my private coaching practice on hold for what turned out to be a three year period.
Any exertion or emotion steals the breath of one with COPD. This causes terror and anxiety which in turn makes it even more difficult to breathe. So it is a vicious and cruel disease.
People with COPD need to be in a calm, quiet and peaceful environment. Every activity takes 10 times as long to complete
and so great patience and compassion is required.
I adored my mother, she was my best friend. So I convinced myself I was the best person and the only one who could take
care of her the way she needed. However I was also running the house, taking care of the family business and continuing my master coaching teleclass series.
The care-giving experience was the most challenging and intense journey of my life. Yet I would not trade those years with
my mother for anything in the world. There was so much love, laughter and grace. I learned more than I could have ever imagined. The experience changed my life in so many ways, all for the better.
One of the greatest lessons I learned is to love myself and to get the support I need in whatever areas of my life.
One of my biggest regrets is that I did not allow myself that support at the time. Having worked with caregivers I knew the pitfalls, the challenges and how vital support is. However being a full time caregiver for someone I was so attached to was a whole different story. I convinced myself I could do it all. And when I wasn't in denial, I had all sorts of excuses as to why I couldn't or shouldn't get more support. But at what cost?
It took a toll on me and my health and when exhausted I was prone to be more impatient, irritable and bossy with my mother.
I wasn’t able to see clearly or make the best decisions. Also I tended to have more inner battles and heightened emotions.
Not getting the proper support, I wore myself down physically, mentally and emotionally. As a result I was not always able to
be there for my mother in the most beneficial way.
It took a number of years after my mother's death for me to be able to understand what I had done to myself and to finally forgive myself. It was only then that I could really see and acknowledge the good that I had accomplished as well.
Bottom line, I did the best I knew how at the time. And as Maya Angelou said "when you know better, you do better". Thank goodness I now know better!
And it is my deep desire to support other women caregivers to know better, sooner!
NPR's StoryCorp program did a series on terminally ill patients, where they had a family member “interview” them. They selected a couple of Hospices around the country and asked their staff to choose those to participate. I am so grateful to the wonderful people of the Hospice of the Florida Suncoast for asking us.
I was told to ask my mom any questions I wanted about her life, dreams, regrets, beliefs, dying etc. They not only recorded it for their show and gave us a copy but it's also entered in the Folklife Center at the Library of Congress.
This is the picture they took on the day of the interview in my mom's bedroom 2 years before she died. Love you mom!
A Tribute to Josie
Before working for Hospice I began volunteering. Josie was the first patient I was assigned to. She was 28 years old and had ALS/Lou Gherigs disease. She was living in a wheelchair unable to move her body and slowly losing her ability to talk.
One day Josie expressed to me her deep sorrow in not having the time to leave her mark. I told her that she had profoundly touched my heart, forever changed the course of my life and anything good I did from there on out would have her soul print all over it.
It was a blessing to be with Josie for the last year of her life. She allowed me the greatest privilege of being with her in her final hours and as she took her last breath. Josie was a light unto this world and a bright star in mine.
Thank you Josie <3