Siblings Rachel Radspinner and Matthew Zuraw are once again raising Alzheimer’s awareness for the Alzheimer's Association fundraising event The Longest Day. Having hosted sunrise and sunset events on the beach from their respective coasts in 2019 — Rachel on the east, Matthew on the west — this year, the siblings continue their efforts in honor of their maternal grandmother and on behalf of their father, John, who is living with Alzheimer’s. Their mom was the primary caregiver for her mother, and today, she is a full-time caregiver for her husband. We spoke to the siblings about their bond and what’s next in their fight to end Alzheimer’s.
Tell us about how dementia has impacted your family.
Matthew: We saw dementia whittle away the abilities of our grandmother when we were teenagers. Then, four years ago, our father had just retired from almost 40 years in his corporate job, ready to set sail on retirement, when he received his Alzheimer’s diagnosis.
We thought about the life lessons our dad taught us, and our mom being a second-time caregiver, and that propelled us to get involved with the Alzheimer's Association. My dad has always loved us unconditionally, and has always had our backs, and now we have his.
Rachel: Looking back, I knew something was wrong with Dad as far back as nine years ago. He always sent me an e-card for my birthday, and suddenly it was my birthday, and there was no email. As early as 2012, he was forgetting important dates and had other signs of confusion. Later, he was experiencing olfactory dysfunction, smelling weird smells he had never experienced before, and we knew it could be something neurological. Then he had an episode where he became catatonic, almost like he was having a stroke. That is when we knew it was time for Dad to see a neurologist. But even from that point, it still took two years to get the scan that confirmed the amyloid plaques that indicated he had Alzheimer’s disease.
I looked up the Alzheimer’s Association, which is how I discovered The Longest Day. We knew we had to get involved to share our hope of this disease coming to an end, and to show our parents and family that are committed to them and this cause.
Matthew: Unfortunately, the silver living of dementia is this: If you have experienced the disease in your family before, you may recognize the signs of it sooner than others. I’m sure my mom had a heightened awareness of what was going on, as a registered nurse who was a caregiver to her own mother. Our mom has always pushed for answers and for what she believes in, and thankfully she did so for Dad, just like she did for her mom, and how she does for all of her children.
As brother and sister, what have been some of the greatest challenges you have faced together as your dad has battled Alzheimer’s disease?
Rachel: The hardest thing is watching my mom go through this experience. Last November, my parents moved from our family home to a continuing care community where there is a state-of-the-art memory center and assisted living options. My parents have simplified their lives, and while Dad seems happy there, it was definitely a sacrifice for my mom. She loves hosting, having the whole family over in her home: cooking, baking, decorating for holidays. And that is something she can’t do the same way anymore.
In a way, I think my experience with Alzheimer’s is one of the main reasons I chose to have more than one child. My mentality has been: “I can't have a kid who has to go through something this hard alone.” Matthew and I literally went through everything together growing up, and that's one of the incredible and amazing blessings of having a sibling you are close with. Because we have that connection, we can come at challenges in life from the standpoint of a team.
Matthew: My perspective on life is that we aren’t meant to do this alone, and being with people who have as much passion about something as you do makes life a lot better. Knowing Rachel is there to support me is a comfort. Rachel and our other siblings [older brothers Andrew and Peter] are in the same boat I am, and it's a tremendous blessing to have their support. And I know our parents are proud of us, too. I hope we have shown our parents that they raised some pretty decent kids, and that they are encouraged in the knowledge that they aren't alone in their journey.
Both of our parents grew up without fathers, so growing up, we had a different appreciation for what a father is and can be. I remember my mom speaking at our grandmother’s funeral, thanking our dad for the support he gave her during her experience caring for her mother. Seeing my mom appreciate him for his support then, and now finding herself in the position of caring for him, can be such an isolating thing. I realized that as children, we had to do more. Not just for our family, but all the others we’ve connected with and met along our journey.
Rachel: We have also tried to educate ourselves about the challenges of Alzheimer’s disease.
The more we are able to understand and try new tactics, that helps our mom. We have found that music has been one of the best things that can pull Dad out of anxious moments.
I was recently with my brother Peter and our parents, and Dad said: “Play ‘The Duke of Earl!’” He will tap his foot, humming or whistling along, triggering positivity. Dad has always loved music, and music is so connected to memory; so many emails he has sent me are along the lines of: “I just heard this song and thought about you.” Finding ways to tap into that has been a good resource for us, especially when Dad starts to get anxious. Polka music is pretty much a sure bet to get him singing and dancing!
How would you encourage others to get involved in the cause through The Longest Day?
Matthew: The more you do, the more you know what works, and what doesn’t. As a team, we've raised nearly $15,000 for the 2021 The Longest Day, which is already our best campaign season! We decided to get started early this year, partially because COVID-19 affected our 2020 plans. We held a 5K in December, with more than 100 participants across the country. In February, we held a virtual cooking event in celebration of Rachel and mom's birthdays, and had a professional chef walk us through healthy recipe ideas. We also created a candle with a company out of Massachusetts, which has either the sunrise or the sunset featured on it, bringing our 2019 coast-to-coast theme to life. We keep trying new things, brainstorming ideas and hosting events to keep awareness top-of-mind for people leading up to June 20, The Longest Day. Anyone who wants to get involved can see what we have done and find some inspiration for their own activities.
Rachel: Our commitment means we are all in to end this disease. We like to have a constant stream of posts on our social media, a drumbeat of constant activity that creates more awareness.
We recently found a local farmhouse near where our parents live, which is big enough to host family during the day. Overnight travel has gotten really difficult for my dad, so we had the idea that people can gather safely there so it's a comfortable experience for him. There is a river nearby, where I found a canoe and kayak rental. The first thing I thought was: “How can we turn this into a fundraising event?” When you participate in The Longest Day, you can do anything under the sun, and that’s what I love about the event. Dad's birthday is in May, and we are hoping to encourage people to get in canoes on the water and make it part of yet another The Longest Day event. We want people to know that not only can you get creative when raising funds, but you can also spread awareness of the resources available through the Alzheimer’s Association.
How have your parents influenced your passion, and how did your childhood prepare you for what you are facing today?
Rachel: Several years ago, Dad sent us a quote from an article he read: “Optimism is a moral duty.” When we started out volunteering, this became a guidepost. Optimism and hope is what it's all about. The quote reflects who he is and how he taught us to live. He was never one to sit quietly if something offended him, or if he didn't agree with something ethically. He has always been a more reserved type of person, but he always made sure his voice was heard when it mattered. When he spoke, you know he meant it to his core, and you listened.
We have to make our voices heard, too. And we are. It's important to do that with this message of optimism, because without that hope, we don't have anything.
Matthew: Our parents consistently put our interests above their own throughout our childhood, and that reflects in the way that we try to live our lives. Our older brothers Andrew and Peter have been so helpful on this journey, and we appreciate everything they do and what they bring to our family dynamic. It takes a family to tackle Alzheimer’s, and we all work together to do that.
I’m also proud of the fact that Rachel and I are viewed as resources. I have had friends come to us who have had a diagnosis in their family, and I am often the first person they tell, which is a humbling and rewarding responsibility, one I couldn’t take on if I didn’t have Rachel’s support or the upbringing we were both lucky to experience in our family.
This year, The Longest Day falls on Father's Day. Tell us a bit about what this means to you both.
Rachel: What an incredible day to celebrate our dad and all the amazing father figures in our lives! We're so blessed not to only have my dad and incredibly supportive brothers who are also fathers, but also our amazing uncles and fathers-in-law, and my husband. On the day with the most light, we get to celebrate all of the incredible lights in our lives, and these incredible relationships we have. It will be a weekend of celebration.
Matthew: Sometimes the stars align, and I think June 20, 2021 will be one of those special days. As chairs for The Longest Day with our respective chapters, we are just a few of the people participating in hundreds of events going on that day, so it's going to be filled with excitement, community, connection, and hopefully a lot of fundraising and awareness to help even more people. Father’s Day falling on The Longest Day feels like a sign that we're doing the right thing for our family.
Will you both share with one another what it has meant to have each other as a support system on this journey?
Rachel: Matthew was the officiant at my wedding. That was yet another special moment that we were able to work on together, a special day of celebration. I love seeing photos from that day, seeing Matthew leading the celebration. He has always been a leader.
Matt, I have always looked up to you, and you have always been there for me. You have an incredible way of connecting people, and you're friends with literally everyone you meet. You have a true gift, and people are happier when you are in the room. I am just so lucky to be your best friend. I couldn't fight this fight alone. When I think about what motivates me to keep fighting, a lot of the time, it is you.
Matthew: I hate that Alzheimer's has affected us, so while it is bittersweet, I am glad to be on this journey with you, Rachel. I know that Dad is proud and that this is the way he would want us to respond to our situation.
Your ability to do what you do is reflective of our relationship and what Mom and Dad taught us about the importance of helping others. As kids, I was protective of you, the baby of the family. Today, I love that I can bounce ideas off you and that we keep trying to figure out the next thing we can do together in this fight. I don’t know what I would do without having you to talk to and lean on. Raising awareness wouldn’t be nearly as fun without you, and the tough moments would be a lot harder. We aren’t just best friends and siblings — we are a team in the fight to end Alzheimer’s. There is no one I would rather be on this journey with than you.
Siblings Matthew and Rachel credit the way they were raised with their success as coast-to-coast chairs on both sides of the country in the fight to end Alzheimer’s. Rachel, 36, lives in Virginia Beach with her husband and two young children. Matthew, 37, lives in San Diego with his wife and pet cat, and is godfather to Rachel’s son. They both want to thank everyone responsible for making their events for The Longest Day a success, both at the Virginia Beach and San Diego chapters. Visit Matthew and Rachel’s The Longest Day pages.
Do you have a sibling you want to thank for supporting you on your Alzheimer’s or dementia journey? Leave them a message of support in the comments below.
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