March 2, 2021

I was asked to speak today at the Easter Seals of Southern California Board of Director's meeting (via zoom). They call it 'Mission Moments' and the purpose is to connect the CEO and the board members to what they do at Easter Seals. I was asked to share our story and explain how the services at Easter Seals make a difference for John and our family. Since I was previously asked to write about those same things, I modified that document and spoke about it. I've posted that stuff before, but I thought I'd include today's presentation here. (First John and I were introduced and the Director of Senior Services gave them an overview. Then it was my turn. John stayed for the first part of my presentation, but then they whisked him away since we were talking about him.) Here's what I said (and I only started to cry once, but it wasn't an ugly cry so my dignity is still intact!): John has Early Onset Alzheimer’s Disease. But before dementia stripped him of almost everything meaningful in his life, he was a Worker's Comp Defense Attorney for the State of California. He was a highly respected attorney in his field. Before his unexpected early retirement he managed a department of attorneys. The first hints that something was wrong began about 10 years ago. John started saying "I don't remember the law like I used to”. He always had an impeccable memory so it was odd. Still, he was smarter than the rest of us so he was able to continue working for a while. But he became more dependent on his coworkers and his judgment seemed to be off. He had to retire far earlier than we anticipated, which significantly impacted our income as well as our financial plans for retirement. To say Early Onset Alzheimer’s is financially crippling is a massive understatement. Another sign that something was wrong was that John would often get lost when driving, or couldn't find his car in parking lots. He would call me at work and I'd track him with his phone and help him get driving in the right direction. Or I’d drive to Costco to help him find his car in the parking lot. We finally forced him to stop driving. He still complains about that often, knowing his independence was pretty much shattered at that point. John was officially diagnosed with Early Onset Alzheimer's Disease, which means it is diagnosed before the age of 65. That was only 3 1/2 years ago when he was 59. He should have been diagnosed a few years earlier than he was, but doctors assume every other alternative first when the person is younger. The uniqueness of the Early Onset version of the disease is that it attacks its victims while they're still in the prime of their careers, as are their spouses and caregivers. After retiring John spent a couple years at home trying to keep himself busy. He was bored and didn't feel that he contributed to society in any way. We realized that being home alone had become a safety issue when he started doing things like locking himself out of the house. I learned about Easter Seals from an Alzheimer’s Support Group that I attend. A man mentioned that Easter Seals supported his ruse that his wife was a volunteer and that it worked beautifully. So I grabbed on to that idea and requested the same for John. John started going to Easter Seals believing he was a volunteer. It worked perfectly and still does today. Not only does Easter Seals give John something stimulating to do, but it gives John a way to find meaning in his life, and to contribute to society. We have 4 kids, who are now young adults. This disease has impacted all of us, but it has reversed the kids' roles with their dad at an early age. They look out for him rather than the other way around. Our daughter Jordan is following her dad’s legal footsteps and is ½ way through law school. While he should be able to guide her, she’s had to take on a parenting role with him. Because John was impacted by Alzheimer's when our younger children were still kids, they have limited memories of their dad when he was himself. They don't know him as the smart, opinionated, funny and interesting man that he used to be. The current version of himself is the one they'll remember, and for me that's heartbreaking. John has been participating in the Senior program in Brea for a year. They've given him purpose again. John has enjoyed himself at Easter Seals from the very first day and has always been happy to participate. He even misses the program on weekends! Everyone that works at Easter Seals in Brea is fantastic. They go above and beyond on a daily basis. Actually, I can't imagine how I'd be navigating John's care needs without our extended family at Easter Seals. Discovering Easter Seals and the assistance they have provided has been a true miracle in our lives. Easter Seals consistently exceeds my expectations. I could not be more grateful. Thank you so much for all you do.