Sandy’s Story: A Tribute to My Father

By Sandy Fleming

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A young Sandy with his father.

My most influential early memory of my father is of the day he gave the eulogy at his own father’s funeral. Even though I was only 10, I remember being rapt with admiration at the awesome composure and eloquence with which he delivered what must have been the most difficult address of his prolific public speaking career. That moment held particular meaning for me because it was the first time I had ever heard anyone adequately express the combination of affection and veneration for their father that I felt for him. I was listening to my hero describe his hero in a way that validated my own filial pride as his son.

My Dad is the middle of three sons born to a World War II Army Intelligence Officer turned political science professor and the Parisian hat seamstress he fell in love with while deployed during the Nazi occupation of France. He was so proud to be his parents’ son, and he worked tirelessly to live up to their example of intellectualism, patriotism, and compassionate civic duty. He somehow managed to be the smartest person in most rooms without betraying a hint of superiority or pretention. I loved to do crossword puzzles with him, but I always walked away with the sneaking suspicion that while he’d let me work out a couple of the clues so I could feel like I’d contributed, he probably could have done it faster without me.

He was fiercely passionate about his moral and political beliefs, but he never let his passion supersede his courtesy and composure. He practiced a nostalgic style of etiquette and chivalry, to the point that the only times I remember him losing his temper were when I talked back or lied to my Mom. While honesty and respect were nonnegotiable, his love for me was unconditional.

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(From right) Sandy, his mother, and his father

I never really thought of my dad as old, though I suppose in retrospect he was on the older side relative to my friends’ parents. When I left for college in 2007, he was 58 and had retired from his career as a litigator and public servant. When you’re away from someone for extended periods of time, the gradual changes in their behavior are a little easier to spot because you witness their cumulative effect all at once, instead of constant, desensitizing exposure to the slow, subtle deterioration. Every time I came home from school, the frequency of little uncharacteristic and absentminded mistakes began to steadily grow. Reluctant to inflict the devastation she expected from me, my mom waited until I had graduated in 2011 to tell me that my dad had been diagnosed with early-onset Alzheimer’s disease earlier that year. She was astonished at my lack of surprise. He was 62.

By now I’m sure you’ve realized how fortunate I feel to have been born to my parents. Trust me, I could write just as long and heartfelt a tribute to my mom, particularly in light of her heroism since my dad’s diagnosis, but for your sake I’ll save that for another piece. It is a cruel affliction to lose a parent you worship just at the age that you finally grow up enough to appreciate the titanic generosity of parenting and start to look forward to an adult relationship with them. It is something worse to watch their eyes slowly cloud with fear and confusion as their mind, their most reliable asset, begins to betray them with accelerating frequency. There is no better moniker than “The Long Goodbye.”

Since his diagnosis, one of the only comforts for my family has been the support of the Alzheimer’s Association. Not only do they raise desperately needed funds for cure seeking research, but they also provided my mom with reassuring but candid information about the realities of caretaking for loved ones with Alzheimer’s. I could always hear relief in her voice when we would talk after a meeting with their support group, a community of patients and caretakers that helped to mitigate the isolation and stigma of an early onset diagnosis.

Last fall my fiancée, Brianne, recommended that we volunteer to participate and help fundraise for The Palm Beach Walk to End Alzheimer’s. I immediately called my mom to verify her experience with the Association because I knew she would give me her candid opinion of the organization’s services. She unequivocally told me that the Alzheimer’s Association had been an invaluable resource to her, particularly during the early stages when she was seeking information about treatment, expectations for the disease’s progression, and future external care options. Her resounding endorsement sprung us into action and we began soliciting our personal and professional networks for walkers and donations.

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Sandy and Brianne at the 2016 Walk to End Alzheimer’s

At 28 years old, I should not have to refer to my living father in the past tense. Alzheimer’s disease is not reserved for elderly people who have lived full lives and had a chance to know their grandchildren or remember their son’s wedding. Today, I try to be worthy of sharing his name, my most prized possession, and I hope that I find a way to emulate his parenting when I have kids, even though I won’t get to ask him for advice. Our donations of time and money are the lifeblood of organizations like the Alzheimer’s Association who provide comfort to patients and loved ones through support and community, and fight every day to help find a cure.

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Remembering Longtime Supporter and Donor, Theresa Esman

The Southeast Florida Chapter is saddened by the passing of Theresa Esman, a longtime supporter of our cause.  Since it’s inception in 2008, The Saul & Theresa Esman Foundation has donated close to $500,000 to the Alzheimer’s Association.  More recently, they funded a campaign in Miami targeting the Hispanic community to ensure that Spanish speaking members of South Florida can be aware of the services of the Alzheimer’s Association.

Executive Director Murray Levin, a personal friend of Theresa Esman’s, will continue to head the Saul and Theresa Esman Foundation and continue the legacy the Esman’s left behind.

He said, “She would want to be remembered as helping you [the Alzheimer’s Association] especially as her own younger sister is living with the disease to the point where she didn’t recognize her on the phone. The reason we went with the Alzheimer’s Association is because it is the premier organization confronting this disease.  She knew the Alzheimer’s Association is trying to slow it down and would often tell me how much she appreciated the wonderful work your organization does.”

The Southeast Florida Chapter of the Alzheimer’s Association is one of the charitable organizations supported by the foundation since its start, and it remains one of the 14 organizations currently supported by the foundation.  Grace Grant-Brown, CFO of the Southeast Florida Chapter said, “The Alzheimer’s Association has lost a very dear friend and donor. Theresa Esman, through the Saul & Theresa Esman Foundation, contributed generously to our cause in pursuit of an end to Alzheimer’s disease. Through the foundation, she has left a lasting legacy that will continue to positively impact the lives of people in our community. We at the Alzheimer’s Association, extend our condolences to Murray Levin and the team at the Saul & Theresa Esman Foundation. Mrs. Esman will be sorely missed.”

Saul and Theresa Esman moved to south Florida in 1979 and began supporting local charities, funding research to fight various diseases. Theresa Esman founded the foundation in 2008 to carry on the couple’s legacy, impacting medical research in south Florida for many years to come.

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Advocates return from the Annual Advocacy Forum inspired and ready to fight

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Last Wednesday, more than 1,300 Alzheimer’s advocates from across the country, and 21 advocates from Southeast Florida, descended on Capitol Hill in a sea of purple. This moment marked the finale to an inspiring and motivating Advocacy Forum in Washington, D.C.

The three-day event is held annually in the nation’s capital. Advocates from across the country flock to D.C. to share their stories; learn from each other; and fight for legislation to support those with Alzheimer’s and ultimately find a cure.

Doris Sanders on stage, representing Florida at the Annual Advocacy Forum.
Doris Sanders on stage, representing Florida at the Annual Advocacy Forum.

The Forum kicked off with the roll call of states in which a representative from each state provides an update on the past year’s legislative victories. Florida was proudly represented by Southeast Florida advocate, Doris Sanders, who discussed the attendance of our state advocacy day in February and the success we’ve seen securing additional funding for respite services and research funding within the state.

“It was an honor to represent Florida in the roll call and to share what we have accomplished,” said Doris Sanders. “This year’s Forum was exciting and inspirational, and as someone who has attended this event for several years, to see the growth and increased awareness was incredible.”

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Southeast Florida advocates Gordon Broom and Larry Jordan presenting at the Annual Advocacy Forum.

The next day, advocates heard from caregivers, individuals living with Alzheimer’s and Alzheimer’s champions about the need to continue the fight. Our advocates Gordon Broom and Larry Jordan took the stage Tuesday morning to share their story.

Gordon was diagnosed with early onset Alzheimer’s in 2007 and, as he said in his remarks, “he would not suffer in silence”. He has been an outspoken advocate ever since. Gordon and Larry also spoke of the outreach they have been able to do in the LGBT community. Their remarks and devotion to each other drew a standing ovation from the crowd. Many caregivers came up to them thanking them for sharing their story, as they too were a part of the LGBT community and resonated with their journey.

Throughout the day, the advocates participated in advocacy trainings to learn more about our two legislative priorities: an additional $414 million in funding for Alzheimer’s research, and support for the Palliative Care Hospice Education and Training Act (PCHETA). The advocates were briefed on the costs of Alzheimer’s and the stark divide in the amount spent on research as compared to Alzheimer’s care (for every $100 spent by the NIH on research, Medicare/Medicaid spends $16,000 on care). For more Alzheimer’s facts and statistics, please visit the 2017 Facts and Figures.

The advocates were also educated on PCHETA. This legislation aims to increase palliative care and hospice training for health care professionals; launch a national campaign to inform patients and families about the benefits of palliative care; and enhance research on improving delivery of palliative care. There is a lot of misinformation regarding palliative care, making this legislation crucial. Nearly half of all people with Alzheimer’s are in hospice care at the time of their deaths.

One of our Southeast Florida advocates, Dr. Hilary Glazer from Memorial Hospital, was able to shed light on palliative care for the group and reinforce why this legislation is so important for those living with Alzheimer’s. As Dr. Glazer said when addressing the group, “Palliative care identifies the individual goal of the individual and family- for example, whether they wish to stay at home”.

The day ended with the National Alzheimer’s Dinner, emceed by actor and Alzheimer’s champion Peter Gallagher. Awards were given to Alzheimer’s champions such as Rep. Tom Cole (OK) and Rep. Nita Lowey (NY).

Journalist Maria Shriver speaking at the Annual Advocacy Forum.
Journalist Maria Shriver speaking at the Annual Advocacy Forum.

The highlight of the evening was when Maria Shriver was honored with a Lifetime Achievement Award for her endless advocacy and persistence in finding a cure. Maria has been outspoken advocate ever since her father was diagnosed with Alzheimer’s. As a journalist, she has turned her tenacity into a lifelong passion to find a cure. She founded the Women’s Alzheimer’s Movement after discovering Alzheimer’s disproportionately affects women. Maria left the crowd inspired and ready to take our fight to Capitol Hill the next morning.

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Advocates at day 3 of the Annual Advocacy Forum.

The final day of Forum was Hill Day. The hotel lobby was wall-to-wall purple as advocates came together to don purple sashes. Buses filled with advocates ready to make a difference. We embarked on our mission to share the cost of Alzheimer’s with our elected officials, ensure they make it a priority, and share our personal stories with them.

Advocates from throughout the state of Florida packed Sens. Nelson and Rubio’s offices. Both senators are on the Select Committee on Aging, and we discussed the reality of Alzheimer’s in Florida with them, including that Florida has the second highest incidence rate in the country.

Advocates spent all day meeting with legislators and their staff sharing their stories and helping move the needle on the progress that must be made.

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(Clockwise from top left): Advocates with Rep. Frederica Wilson; Rep. Ileana Ros-Lehtinen; Rep. Mario Diaz Balart; and Rep. Brian Mast.

It was a remarkable to see no matter where you turned in the Capitol complex, there was someone in purple.  That gives me hope that we are increasing awareness and getting closer to finding a cure.

Now, we wait to see if our Congressional delegation will support our requests.  Even though we had positive meetings, our work has just begun. We cannot get complacent; we must continue this fight, and we cannot do that without your help. If you are interested in getting involved with our advocacy efforts, please contact Jennifer Braisted, jbraisted@alz.org.

The Southeast Florida chapter had 21 advocates in attendance, ranging in age from early 20s to early 80s. Some were former caregivers, including Leslie Rivera and Doris Sanders, who are continuing the fight to end Alzheimer’s even after losing their loved ones to the disease. Several current caregivers, including Cherise Fletcher, Marta Junco Ivern and Valerie Detweiler, attended in honor of their loved ones living with the disease.

Other advocates included those living with Alzheimer’s disease. Gordon Broom, a younger-onset advocate who has been living with the disease since 2007, courageously shared his personal story and his family experience with this disease at Forum.

Finally, many advocates work in the field and see the devastation the disease causes first hand. Amy Adaniel, Cristina Rodriguez and Crystal Collier attended Forum to show their support and work for a world without Alzheimer’s.

We want to thank all of our advocates for making the journey with us to Washington, D.C. last week. We cannot make a difference in the fight against Alzheimer’s without you!