Social Impact Authors: How & Why Amy Cameron O’Rourke of ‘The Fragile Years’ Is Helping To Change Our World
An Interview With Edward Sylvan
My hope is that the funding for care rendered to older adults in the Fragile Years will be redirected to smaller settings, at home with family and hospice/palliative care services can be provided by individual professionals rather than companies. Nursing Homes must follow rigorous federal guidelines that result in a lot of overhead costs; it hasn’t resulted in more aides caring for the older adult. Career caregivers want to take care of older people and my vision is for 1 caregiver to take care of 4 or 5 people rather than 10. The way to do that is to fund smaller homes or pay family members to care for their loved one at home.
As part of my series about “authors who are making an important social impact”, I had the pleasure of interviewing Amy Cameron O’Rourke.
Amy Cameron O’Rourke is a nationally-known pioneer and advocate for senior care in the U.S. A professional care manager with over 40 years of experience, she is the founder and president of The Cameron Group: Aging Life Care Services in Orlando, Florida and author of The Fragile Years.
Thank you so much for joining us in this interview series! Before we dive into the main focus of our interview, our readers would love to “get to know you” a bit better. Can you tell us a bit about your childhood backstory?
I am one of 6 children, my early childhood spent growing up on a farm. My father lost his business during the early 70’s recession and we were uprooted to Florida for a job that was offered to him. My mother had to go to work, so I was responsible for taking care of my younger sister after school (picking up my younger sister from school and transporting her by bike to the Girls Club. Because of my father’s job, I went to three different high schools.
We volunteered at the local Girls Club which included a weekly visit to Bradenton Manor, a nursing home, bringing music, gymnastics, Halloween events etc. to the nursing home and I felt very at home in the nursing home. I was aware of a sense of connection with the residents. There was a level of honesty that I loved. They verbalized their frustrations and their gratitude openly. I never forgot that feeling. I did two internships from college, one with children and one with older adults. The Activity Director in the nursing home that I volunteered at when I was a teenager was looking for an assistant and she hired me.
When you were younger, was there a book that you read that inspired you to take action or changed your life? Can you share a story about that?
My third-grade teacher, Miss Decker, read Little House on the Prairie by Laura Ingalls Wilder to my class every Friday. I couldn’t wait for Friday afternoon to hear her read and spend the afternoon in the lives of the Wilder Family. Miss Decker was old and so sweet, gray hair in a big bun. She was the second most influential older person in my life, even as a fictional character. My first was my babysitter, Grandma Rose.
Can you share the funniest or most interesting mistake that occurred to you in the course of your career? What lesson or take away did you learn from that?
I had low or terrible boundaries. I moved a client in with me who had dementia; and would wake up at 2:00 a.m. screaming, “Where am I?” It took a while to get her placed into a home; and meanwhile, her brother, who had been her caregiver, had been hospitalized.
I took a client’s 16-year-old dog without absorbing what comes with caring for a dog that age. Not to mention, the dog was also deaf and incontinent. I was newly married and had not told my husband I was bringing home the dog. When she had an incontinent episode on our newly installed carpet, it was the first time I had seen my husband leave the house without saying a word.
I have taken countless dogs and clients for weekends. My colleague calls it broken wing syndrome.
Can you describe how you aim to make a significant social impact with your book?
My book, The Fragile Years, provides inside intelligence you will need to make informed decisions, financially and compassionately, when caring for aging loved ones — whether they are living at home, in a care facility, or in the hospital or hospice care.
I have been with many people in their last years of life and it is a very intimate time. The conversations are real, maybe for some families uncomfortable and painful. The human connections are honest. I hope The Fragile Years inspires older adults to live in congruence with their values, and for both older adults and their adult children to connect with each other. Older adults are naturally focused on the important things in life during these years.
I also hope that this book shines some light on how we pay for care during this time. I would want medical interventions secured that are of their choosing and are used to support them in their wishes. I would want more people to communicate to their congressman how important it is to examine and change how care is paid for so more time can be spent enjoying this time as opposed to trying to “fix” someone who is dying.
My hope is that the funding for care rendered to older adults in the Fragile Years will be redirected to smaller settings, at home with family and hospice/palliative care services can be provided by individual professionals rather than companies. Nursing Homes must follow rigorous federal guidelines that result in a lot of overhead costs; it hasn’t resulted in more aides caring for the older adult. Career caregivers want to take care of older people and my vision is for 1 caregiver to take care of 4 or 5 people rather than 10. The way to do that is to fund smaller homes or pay family members to care for their loved one at home.
We need to develop a menu style of services with an amount that is funded and allow older adults the dignity of being able to choose what services they want during this time.
Can you share with us the most interesting story that you shared in your book?
Last spring, in the middle of the pandemic, I received a call late on a Thursday afternoon from a woman whose attorney told her to call us. The health facility had notified her they were transferring her husband to a facility in Georgia. She lived in Orlando. The woman was distraught, her husband had a stroke on the golf course and was now on a ventilator. Only in his 60’s.
We told her this would not happen to him and that we would help her coordinate a more realistic discharge plan.
We called the Social Worker who adamantly stated there was nowhere else for him to go other than Georgia. We explained that his wife lives here and is not in a position to move to Georgia. We asked to see him and she firmly stated that “could not happen” because of the pandemic. I asked her if he was dying and she said, “Only the doctor can determine that.“ We said, he won’t go anywhere unless we see him and determine his status. Once we could see him, I assured her we would help with a reasonable discharge plan.
Our Nurse Care Manager went to see him and called us to say he was dying. We set up a family meeting and talked through the situation and his wife started crying with gratitude to know the truth. She asked, “Why didn’t they tell me?”
He went home with Hospice and died within 36 hours of getting there with his children and wife at his bedside. The wife called me later to tell me how at peace she was with his death.
What was the “aha moment” or series of events that made you decide to bring your message to the greater world? Can you share a story about that?
I was reminded recently from a former colleague that I had told her I wanted to write a book one day. Apparently, I told her that while working at the eldercare company I founded, The Cameron Group, but I did not remember saying that. Throughout my work with The Cameron Group, many colleagues, one in particular, Carolyn Sawyer, told me I HAD to write a book and get this information in the hands of caregivers. My friend, Margie, wanted me to run for office to change the system. My other friend, Patricia, a writer, kept telling me she would help me if I decided to write the book.
One day at a luncheon, Carolyn said, again, “When will you be writing your book?” This was in August of 2017. Right then, I decided I was going to decide whether I was going to write the book, or not. I spent that fall learning what it would involve, interviewed writers, and self-publishers, then decided at the end of 2017 that I was going to take the leap.
Without sharing specific names, can you tell us a story about a particular individual who was impacted or helped by your cause?
A colleague sent a 90-year-old gentleman to me who couldn’t find his wife. He had very poor vision, inconsistent memory, and was stubborn. A relative had taken his wife, whom he had been caring for and was madly in love with for 52 years of marriage, away from him and wouldn’t tell him where she was. Family dynamics can be complicated, often becoming acutely complicated in the Fragile Years and I suspected the facts weren’t quite as one sided as he presented. Nevertheless, he missed his wife and we wanted him to be with her. He told me he had an attorney that could help us.
The relative, fortunately, had a Care Manager who was working with him and she and I began to sort through how to resolve the issues and get the two back together. In the middle of the work, this man collapsed in his home and was rushed to the hospital. He was diagnosed with terminal cancer that spread through his body without a long time to live.
The surgeon at the hospital had him sign consent forms to conduct a procedure that would shrink the tumor. This man had designated me as his Health Care Decision maker and I was surprised he had agreed to it. I met with the surgeon and asked if there was any chance he wouldn’t survive the surgery. The surgeon said yes, there was a chance he wouldn’t survive. I told the surgeon that if he knew that was a possibility, he would never have agreed that his goal was to be with his wife.
We turned down the procedure, contacted the relative and convinced him to allow the two to be reunited. He died after spending two weeks together. The relative hugged me on my last visit and thanked me for intervening — he had made peace with him. He had not known how to handle the dementia coupled with the vision loss and feared for his relatives’ safety.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
First, make the conversations about growing older and dying commonplace. As a society, we are a bit youth obsessed and anti-aging focused. Because of this, a lot is missed by not paying attention to the later years of life. There are a lot of perks that come with age: you know how you are wired, decisions are easier because a lot of mistakes have already been made, and values are clear.
Second, make it OK to die naturally in an environment of our choosing. Allow hospital staff to talk about all choices at this stage of life; not just the “cure” or procedure. Allow nursing homes to open up palliative care, not necessarily for patients on Hospice. Our laws and regulations have created silos of care; for example, hospitals, skilled nursing facilities, Medicare home care, private duty home care.
Third — normalize talking about death. Our society is afraid to talk about death, and how life is so fragile at the end of life. Anti-aging is so popular because death and aging are feared and not embraced.
How can we give choices to individuals and respect the dignity of those choices?
How do you define “Leadership”? Can you explain what you mean or give an example?
The people in my life who inspire me to follow them think of others’ needs before their own, their actions are congruent with their beliefs, and they are naturally generous people. They teach.
My first boss out of college would call me after hours to go over the events of the week. He would listen to how I interpreted different situations and broaden my perspective when I was upset. When I made mistakes, she quickly brought them to my attention with acknowledgment of my desire to grow and then would teach me what I needed to learn. She would always seek to understand what led me to my decisions and that taught me how important it is to seek to understand rather than be understood. There are always multiple perspectives on any given situation. I still struggle sometimes in wanting to be understood first.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
First — emotional intelligence is the most important intelligence there is. I had a client whose gardener would be drinking coffee with my client (who had memory loss), every time I showed up. It felt weird. Come to find out, the gardener was collecting payment every time he had coffee with him even when my client had already paid him.
Second — ask AND TAKE advice that is given you. Ask for advice/feedback — employees are often afraid to tell the boss things they need to hear. Create a mechanism to help address this problem. I had a business partner for five of the 20 years I was in business and that was a very valuable experience for me because it forced me to ask for help. When we ended the partnership (amicably) I hired a woman named Kim Edwards, who was my peer and would continue to provide for me this feedback mechanism. Every business owner/CEO has blind spots and needs to have a way to be a victim to them.
Third — urgency is a sign of immaturity. Fast decisions can lead to mistakes more frequently than slow decisions. And, sometimes the most important thing to do when faced with a pressing issue is to leave the office and meet a friend for lunch, take a walk, or visit your child at school; meditate. Step away from a problem to get clarity of mind.
Fourth — it’s OK to turn business down and to be clear about who you serve. We had a psychiatric client that we were taking care of and over the course of the year we had him, the stress on the staff was high. We were trained to work with older adults, not clients with mental illness. He tried to kill himself and that crisis set the staff back professionally and emotionally. We met with his Case Manager and got him transferred out of our company to another company that specialized in psychiatric clients.
Fifth — be prepared for success. The phone started ringing and didn’t stop — I was hiring, helping clients, making decisions quickly. I had to learn to access funding creatively — it’s hard to borrow money in your first years in business. And the need for funds is critical when a business is growing. I remember the days of standing in the bank giving them credit cards to pull cash to make payroll.
I also remember fondly, calling a client to ask him to pay a month ahead as I was running short of cash. He was so kind, paid a month ahead and gently asked me if I was solving the long-term problem. I assured him I was and I will never forget the embarrassment and the gratitude.
And to add an honorable mention — you have to spend money to grow a business. The phrase, “it takes money to make money” is true.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
One thing I am not good at is “favorite” questions. True confession. I feel as though I have been given so many life lessons in the way of quotes, advice, experiences and role models that choosing one favorite is extremely difficult. I have been in a fortunate position to be surrounded by friends who are extraordinarily generous with their time, insight, and ideas. So, perhaps: “to whom much is given, much is expected” would be the quote I would choose because of what I have learned from watching others.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. :-)
I would like to have breakfast with the Joint Session of Congress to demonstrate the opportunity for a bipartisan effort to improve the care for older adults and to provide this care within a responsible budget. This is a huge opportunity to make a social impact in terms of uniting the country behind a more than worthy cause, and to learn the lessons of COVID-19 by changing the way we care for older adults forever.
I feel like I should have said someone like Mother Teresa or the Dali Lama, but my passion is helping people & their loved ones find peace and joy as they age; and I am a forever practical person.
How can our readers further follow your work online?
Readers can find my book, The Fragile Years, on Amazon. And they can follow my work at agingexpert.com and amycameronorourke.com.
This was very meaningful, thank you so much. We wish you only continued success on your great work!
