Since the fall of 2009, my family and I have been participating in the Walk to End Alzheimer's in honor of my father Joel. This year is no different! The walk grows more and more important to us as time goes on. Watching my dad slowly decline has been, without a doubt, the hardest thing my family has ever had to endure. This is something that no family should ever have to go through. My dad is alive, but he has really been "gone" for many years.
In 2009, we walked after my father was diagnosed. We were in shock that year... I'll never forget the day my stepmom and my dad sat my sister and I down to share the news. My dad's forgetfulness, confusion, and speech issues were not just "part of who he is". It was early onset Alzheimer's disease, at the way-too-young age of 50. Every year as time went on, we grew more and more in disbelief at what this disease can do to the brain and how much my dad was being affected by it. Now here we are years later and I still can't believe where we are at.
Since 2014, my dad has been in long-term care - first at the Newton-Wellesley Alzheimer's Center but now at St. Patrick's Manor. He isn't aware of where he is, which most of the time is for the best. Patty visits daily and my sister and I try to visit weekly, and even when we aren't around he has trained experts taking care of him who know SO much about this disease and its progression. He seems to have more good days than bad, and for that we are so grateful. However, despite what we call his "good" days, nothing about this disease is "good". There is no cure, no way to slow it down, and no way to prevent yourself or others from developing it.
My dad is not a quitter, and will fight until the end. I never dreamed I would have my dad by my side on my wedding day, and I was so fortunate that he was in fact able to be there. I feel so blessed every day that he is still here. With this disease, things can change in an instant so we never take another day with him for granted. We live each day to the fullest!
My dad is stable, but he is not free from Alzheimer's and it is still going to take him from us. It makes me want to scream, cry, and break down most days. But I hang my head high and stay as positive as I can for him, because that's what he would want us all to do. But sometimes, that is just really hard to do. I think about the past and the memories I had with him growing up - changing the words to all our favorite songs to make us laugh; "Mystery Trips" every Columbus Day weekend; teaching us from a young age that "The Who is the Best Bloody Rock Band on the Planet"; the god-awful smell of him brewing beer in the kitchen (but how PROUD he was of that 'Osborne Brewing Company' swag); our frequent trips to Friendly's... the list goes on and on. Through divorce, losses, and typical family struggles, my dad never failed to make me laugh. I will cherish those memories for the rest of my life, but I know my dad has already forgotten them. We can't sit and chat about "the good ol' days" like any other father/daughter can. He missed my graduation from Northeastern to get my Masters degree because of his health, and though I know he wouldn't remember it anyway, I would have loved to have had him there. He can't be there for our HUGE "Music for Memories" event. Thinking about the past just makes me upset so I try to avoid thinking about it whenever possible.
So then I start thinking about the future - how he won't walk with us anymore at the Alzheimer's Walk; how he'll never know my kids or their kids; how Alzheimer's runs in the family and someone else I love could get it, and I'll have to watch this disease take someone I love away from me all over again. With every stage of the disease that my dad is faced with, we learn more and more to try to focus on living in the moment and cherishing the moments we do have with him. The past is scary, the future is scary, and our present situation is just not an easy road to walk on. So where do we find the optimism in all of this?
Well, there is one thing about the future that doesn't bring me to tears when I think about it - and that is a world without Alzheimer's. The first SURVIVOR of Alzheimer's. I know a cure is going to come one day for this disease that affects millions across the country. Maybe too late for my dad, but maybe not too late for us. And that, my friends, is why I walk. I know we will get there one day by walking and raising money for a cure, I just know it. But I can't do it alone.
So now, I need your help. You can chose to walk with me this fall in Foxboro, MA at Gillette Stadium. Every year gets a little more emotional, and we can use all the support we can get. I am a firm believer in 'strength in numbers' - the more teammates we have, the stronger we will be for each other. So please sign up and walk with me if you have the time.
Another way you can help is by making a donation. Many of you have already supported our efforts by attending one of our many fundraisers, donating to our walk page, visiting my dad, or just offering your love and support when we need it the most. In addition to funding cutting-edge research, the money you donate will greatly help all those already affected by the disease by offering care, education, support and resources in communities nationwide. I am in a support group for children of Young Onset Dementia/Alzheimer's patients, and it has been my saving grace. And its 100% funded and supported by the Alzheimer's Association. To keep programs such as this going, we need funding! Any amount, big or small, helps in the fight against Alzheimer's. And please look into company gift matching - most large for-profits offer this as an option, and there's no additional cost for you!
Even if you can't donate yourself, you can still help us fundraise along the way by reaching out to your own contacts to let them know what my walk team is doing. Think of your friends and family. Is anyone you're close to dealing with Alzheimer's or know of someone who is? Then ask them if they'd like to get involved by walking or donating. Or simply just SHARE THIS POST! Again, strength in numbers. The more people who we can reach, the better.
Due to your generosity, our team has been ranked among the Top 10, sometimes even the Top 5, at our regional walks each year. Sometimes even in first place! 2016 and 2017 we were beat and ended up in 2nd place but are back in 2018 to defend our title! We would love your help to get us there again. If you would like to support us, please feel free to donate or join my team. Thank you all for taking the time to read this! Your donations mean so much, but your love and support throughout this journey mean so much more!
A photo taken at my sister's wedding in 2010
Photo from Adrienne's graduation from Keene State College in 2012
Photo taken at the Walk to End Alzheimer's
Photo taken at Jessica's wedding in 2010
Photo taken at the Walk to End Alzheimer's in 2013 (this was the last year Joel was able to attend)
Photo taken at Medway Alumni banquet in 2008
Photo taken at Patty and Joel's wedding
Photo taken at Jessica's wedding in 2010