January 10, 2021

I was asked by Easter Seals to write some information about John and our experience at Easter Seals. Initially I didn't know that they plan to use the information for grant writing. I wrote the couple paragraphs (Part 1), and then they gave me a list of questions to answer. For Part 2 I added a few more paragraphs answering their questions. I thought I might as well include it all here in this blog. The write-up doesn't flow that well, but Easter Seals is going to change the format anyway. Frankly, it was more difficult to write than I anticipated. Having to think through all we have experienced was difficult. Typically I ignore all that pretty well. The most painful part is the losses our kids face, and the impact the journey has on them. Obviously the future is guaranteed to get progressively harder. Alzheimer's Disease varies pretty widely from person to person, but one solid guarantee is that it only gets worse. Even now I sometimes wish the disease would progress more rapidly because the slow march to the inevitable grave brings limited moments of joy. We have no way of knowing how much time he has left. I tend to guess about 5 years. But what if it's 10 years? That's a slow and hideous decade. I know from my experience with my mom that languishing is not a gift of time. Enough negativity! The bottom line is we have to choose joy every day. And so we do. Here is the info I provided to Easter Seals: Part 1: Easter Seals consistently exceeds my expectations. My husband John has young onset Alzheimer’s Disease and has been participating in the Senior program in Brea for a year. I so appreciate all they've done for him. They've given him purpose again. Before he started at Easter Seals, John was bored and I was increasingly concerned about leaving him home alone while I was at work. I was very nervous about his first day at Easter Seals. I worried he wouldn't like it and would resist going. But John enjoyed himself from the very first day and has always been happy to participate. John believes Easter Seals is his job and going there each day gives his life purpose and meaning. He really misses the program on weekends! Everyone that works at Easter Seals in Brea is fantastic. They are all enthusiastic and create a positive and supportive environment for the participants. They each go above and beyond on a daily basis. Whenever I've had an issue with scheduling, they've immediately offered creative solutions. Each time I mention a problem I'm having, they jump to assist. I really can't imagine how John and I would be navigating the Covid pandemic without Easter Seals. 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. I could not be more grateful for all they do. Edna and Kelly are amazing people and we'd be lost without them. Part 2: For most of John's career he was a Worker's Compensation Defense Attorney for the State Compensation Insurance Fund. Basically that means he handled Worker's Comp claims filed against California's insurance company. He was a highly respected attorney in his field and rose rapidly through the ranks. At the end of his time at State Fund he was a Managing Attorney, supervising a department of attorneys. About 10 years ago he started saying things like "I don't remember the law like I used to" and he answered more and more questions with "I don't know". 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. But he became more dependent on his coworkers and his judgment seemed to be off. He met with doctors and the initial assumption was that his memory issues were caused by depression. The plan was to address the depression issues believing that would resolve the memory problems. That didn't work. He had to retire from State Fund far earlier than we anticipated, which significantly impacted our income as well as our financial plans for retirement. John worked for a friend for a while doing very basic legal work. I remember him saying he had trouble recognizing his clients at the Worker's Compensation Board so he would scan the room until they saw him and flagged him down. I believe his friend kept John employed longer than he should have. John often got 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. Then there were small dents here and there in the car. We limited his driving as much as we could, until we finally forced him to stop driving a few years ago. He still complains about that often, knowing his independence was pretty much shattered at that point. 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. Then about a year ago I was home from work for a few weeks and realized that he would be unable to handle any kind of emergency or stressful situation that might happen when he was home alone. That could include a kitchen fire, or just locking himself out of the house. It was clearly time for some type of daycare while I'm at work. 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. So John started going to Easter Seals believing he was a volunteer. It worked perfectly and still does today, except now he believes he works at Easter Seals rather than volunteers! Easter Seals gives John a way to continue to contribute to society. He's involved with people he enjoys, he's active, and he's engaged with other people every day. He likes the exercise classes, trivia and memory games, and talking with everyone. He's made deep friendships and speaks highly of everyone and everything there. John was officially diagnosed with Early Onset (diagnosis before age 65) Alzheimer's Disease 3 1/2 years ago. He was 59. Now he's 63. He should have been diagnosed a few years earlier but doctors assumed every other alternative first because of his age. The uniqueness of the Early Onset version of the disease is that it attacks it's victims while they're still in the prime of their careers, and so are their caregivers. John's career was cut short by at least 10 years. Financial assistance is only available if you qualify for MediCal. We don't. We planned to be in a better financial position for retirement, but fortunately he does qualify for Disability benefits. John also had long term care insurance through his employer, but since he had to stop working prior to his diagnosis, those benefits were gone. We have 4 kids, who are now 38, 34, 24 and 21. This disease has impacted all of us, but it has reversed the kids' relationships with their dad at an early age. They look out for him, not the other way around. Because John was impacted by Alzheimer's when our younger kids 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 really remember, and that's heartbreaking. I work at a school for children with severe disabilities, both medically and behaviorally. I think that makes it a little easier for me to step into the caregiving roll with my husband. At least I hope so. E