It had been an arduous travel day. And tougher still because, after a year-long ordeal, I had decided to bring my 87-year-old mother home to New York from Florida to die. Her profound dementia and cancer made this a necessity.
We got through airport security, despite the TSA’s insistence on examining mom’s diapered bottom. We survived the flight, mom’s spirited performance of “Come Fly with Me” notwithstanding. I even managed to hold back the tears when, mid-flight, without warning, mom’s tone shifted and she angrily demanded to know who I was.
But nothing prepared me for what came next.
Despite not having slept for 36 hours, I was feeling a little light-hearted after achieving my goal of settling mom into an extraordinary community in New York where she would be getting wonderful care. But then, as I was getting ready to go home, a staff member presented me with a gigantic carton of forms to fill out that would require researching mom’s financial history—much of which was lost after my dad died from complications of dementia 9 years earlier. And, what did exist was scattered in no rational order.
It was the last straw. I was lost. I started to cry.
I have a Master’s degree. I have years of business experience on Wall Street. I worked at the highest levels in New York City government. And, I was at that moment (and still am), the president and CEO of CaringKind, New York City’s leading expert in Alzheimer's and dementia caregiving for more than 30 years. (We were formerly known as the Alzheimer’s Association, New York City Chapter.)
As I stood there with tears streaming down my face, weighed down by the box and the years of long-distance caregiving, feeling abused, punished and frightened, I thought, “Hold it together! You should be able to handle this.”
I was so alone and isolated—like I was the only one who ever felt this way. I stupidly assumed that because of my work in aging services, my education and my business acumen, I would be able to transcend the demands of caregiving and that my experience would be different (and better) than most. I was wrong.
After seeking help and support from my colleagues at CaringKind—in reality, after becoming my own client—I soon learned that my own personal experience as a caregiver, which I always thought was unique to me, was far more universal than I could have imagined. What I was going through paralleled the experience of so many of our clients. Religion, ethnicity, wealth, education made no difference. We were all the same.
From my caregiving experiences, I learned many lessons. First, was just how much I didn’t know. And it was a lot. From understanding the complexities of our health care system to fully grasping the personal impact caregiving has on your life, I was really at sea. Totally unprepared.
For that reason alone, it was critical for me in my professional capacity to dig in and use what I learned to help build programs and resources that would be useful for our Alzheimer’s caregiver community.
The second thing I learned is that no one can do this alone. We all need help. I certainly knew about all the resources that were available to me. But knowledge is one thing. Action is another. There is no substitute for asking for help. I certainly could have used a family caregiver workshop or a seminar on legal and financial planning for long-term care, if nothing else, to learn what more I could have done to better ease my own caregiving burden.
I have been blessed with so much. A great family. A wonderful husband. Unprecedented access to the best caregiving resources anywhere. But, as I found out, caregiving is the great equalizer. It wasn’t until I found myself weeping in the office of a CaringKind social worker—frustrated, depressed, anxious and angry, just like so many of our clients—that I realized that getting help is life-changing.
All of this has fully informed my capacity for empathy, for kindness and for understanding, not just for the dedicated Alzheimer’s and dementia professionals and social workers everywhere, but for that person who may be sitting at home, feeling alone, and not knowing what to do because her husband no longer remembers her name.
Lou-Ellen Barkan is president & CEO of CaringKind, New York, NY.
This aging services professional, despite her knowledge and access to resources, found herself feeling lost and alone as a caregiver.