Jun 202012
 

It’s 6:19 a.m. and it’s dark. I’ve had three shots of espresso and my legs are vibrating and tears are streaming down my face. I shouldn’t be here. My ride for Alzheimer’s Association The Longest Day™ should never have happened. My grand plans — having a big team and raising lots of money to beat this horrible disease that stole my mom — fell apart. Alzheimer’s got in the way.

I’m standing next to Rebecca, who I just met, and we’ll be riding together for the next two hours (thanks to Tracy from Plan B Cycling), as the sun comes up over New Smyrna Beach, Fla. We’re riding to put a very small dent in Alzheimer’s to help make up for the train wreck this disease has created in my family’s life.

My Longest Day plans went out the window when my mom went into the hospital for the eighth time in the past year. I had to go with her. She tells the doctors that she hasn’t been in the hospital since childbirth. She doesn’t know which pills she takes or which medical problems she has. She answers “yes” to almost every question the doctors ask her. I pack a backpack and my laptop so I can work using the hospital Wi-Fi.

This hospital trip was easy compared to my longest day since my mother’s diagnosis of Alzheimer’s. It started in January around midnight with an ambulance trip. Mom was admitted around 3 a.m., but we didn’t get up to a room until around 5 a.m. It was non-stop questions and answers from nurses and doctors until late afternoon, trying to talk in whispers so mom wouldn’t hear too much and worry. I was finally able to recline in the sleeper chair in her room, and grab some sleep between blood draws and vital signs, after 41 hours straight.

Eight weeks ago, as my fundraising for The Longest Day was starting to ramp up, I was getting the word out about my event…and my mom’s Alzheimer’s symptoms started to go haywire. A month ago, mom was in a wheelchair having fun at Epcot for my birthday. Today, she hasn’t been out of bed in weeks. She gets a little weaker every day.

Alzheimer’s is not my mom’s worst medical problem, but it makes every one of her medical problems worse. She has back problems that affect her balance, but she couldn’t remember to use a walker, so she has to have round-the-clock supervision. Her loss of feeling and awareness caused problems that led to infections that made her Alzheimer’s symptoms worse.

We chose to disrupt everything in two families in order to take care of my mom at home, instead of putting her in a facility. For us, there was no choice — it’s what each of us would want for ourselves — end of story. I was starting a new business, which is now on hold. My fiancé, her son and I love to travel and find adventures — not anymore. Alzheimer’s got in the way.

I didn’t think mom was coming home from this hospital trip. It was late one night, after a really long day of watching my mom fade away. I sat down and wrote Tracy from Plan B Cycling and told her that I didn’t think the ride was going to happen. I had been so focused on taking care of mom that my fundraising and team recruiting had stalled weeks ago. I had raised a little money and had no teammates. There was no way I could ride 16 hours by myself, given how tired I was at that moment. Alzheimer’s was getting in the way of my Longest Day ride, too.

Mom’s condition continued to get worse and we decided it was time to stop treating her and bring her home with hospice care. We still see glimpses of mom — her smile, her warmth and a little of her sense of humor — that is what makes it worthwhile to do what it takes to care for her every day and night.

The next day in the hospital, I got an email from Tracy who decided the ride should go on, so she found riders to cover all but two of the 16 hours. Our local Parks and Recreation Department waived the rules and let us use a pavilion with one day’s notice. Trish and our caregiver are taking care of mom so I can ride at least part of the day. My legs aren’t in shape and neither am I, but, standing over my bike this morning, my heart feels like the Grinch— three sizes too large.

This is how I came to be standing here with the sun peeking out — proud to have friends like Tracy, Rebecca, Tara, Conrad, Melissa and Christian. Proud to have family like Trish and Brayden. Friends and family who are willing to get in way of Alzheimer’s!

We’re in it until Alzheimer’s is finished.

Wade Caldwell lives in Florida and is participating in Alzheimer’s Association The Longest Day™ , a sunrise-to-sunset relay event to raise funds and awareness in the fight against Alzheimer’s. Click here to follow Wade and his team during this 16-hour event.

  30 Responses to “Alzheimer’s Got in the Way”

  1. A true hero fighting the fight for your mother. I walk in your shoes daily with my father. I will be participating in the Walk to End Alzheimer's in September. I am looking to blow the roof off my fundraising goal of $3,000. I too AM IN IT UNTIL ALZ IS FINISHED. You will be in my thoughts and prayers……..Cathleen – Manchester, NH

    • Thank you Kathleen. Your comments will help keep me going as day progresses. I have had some really amazing people I’ve never met step up to help out today. My family is truly blessed.

  2. Mr. Caldwell thank you for your dedication to your Mother. I sit at my desk today reading your post and it has brought me to tears. I remember my grandmother who passed away over 15 years ago from this horrible disease. Please know that you and your family are in my prayers today. I am proud of what you and so many others are doing, and I am sure your Mother is proud too!

    • The people I rode with yesterday, showed me how many lives Alzheimer's has touched. Over half had someone in their family who had Alzheimer's. Those stories helped me get through the day, expanding the ride from being just about my mom to being about their families, too.

  3. Wade,

    You and your family are in my prayers. My name is Joan and I live in Chicago. I was a caregiver for my dad with alzheimers.
    My mom and sisters and brother did everything we could to try to make him as comfortable as we could. Dad was in a wheel chair with a diaper on for the last 11 months of his life. Not the way he liked to live being a very busy guy most of the time. Dad passed away on Nov. 23, 2011. I want to put an end to this terrible disease too. Hugs to you and your mom.

    • Hi Joan, I know what you went through and admire you for taking care of your dad. It takes a special person to take care of a parent with Alzheimer's. I spoke with a friend of my mom's last night on the way home from my ride. She told me, sadly, that many of today's sons and daughters are unwilling to do what my fiancé and I are doing for my mother. I can't fathom that, but she said it is easier for them to park them in a facility and go see them once a week. This is not the easiest way, but I can't imagine that. I have learned more about myself and my mother and would not trade this time for anything in the world. I hope I am wrong, but it seems like you and I, and the thousands of others who are doing what we did, are in the minority. By raising awareness through events like The Longest Day, maybe we can talk more about what we've been through and change a few minds.

  4. Wade,I don't think I've read a more moving and eloquent testimonial to caregiving. Nor a more compelling argument for making a committment to End Alzheimer's Now! Thank you for everything you have done, are doing today and will continue to do as a caregiver and as a partner in this effort.
    Kay Redington
    CEO
    Alzheimer's Association, Central and North Florida Chapter

    • Good morning Kay, Thank you for your kind words. The writing was easy – all I did was start typing and the emotions just poured out. Thank you for being a part of the organization that does so much in the fight against Alzheimer's. The team that Tracy from Plan B assembled to help me get through the day was truly amazing. Many were ready to start planning our event for next year. We hope to come back with a bigger and better Team Carestring next year – raising more funds and increasing awareness in our area. We are in it until Alzhiemer's is finished!

  5. Keep up the good work. I admire your determination.

    • Thank you Beverly. During the breaks yesterday, I was able to read through some of the comments and encouragements and it made a big difference in keeping my motivation up. When we were pushing through 20 mile an hour winds, all I had to do was think about what my mom has been through and the wind seemed to not be so bad and my legs got stronger.

  6. This is a heartbreaking disease. I've seen so many FAMILIES suffering with this disease and it is a family disease because all suffer. I've watched a sweet, soft-spoken man look at his wife of 50+ years and ask her who she is. It's time to take action and end this.

    • Heartbreaking is a great word to describe the range of emotions our family has been through over the past several years. Watching as abilities disappeared. For me, the most heartbreaking was watching her coordination disappear so that she can no longer feed herself. She takes a piece of food and holds her tongue out until she (hopefully) moves the food around until it hits her tongue and she can put it into her mouth. Some meals she can do pretty well, while others we end up feeding her. The first time she couldn't find her mouth was truly heartbreaking. I had to fight back tears and laughter at the same time. The laughter to keep from crying in front of her and upsetting her.

  7. Reading this is such an inspiration. watching my mom fade away from me with early onset alz is traumatic but knowing there are others out there fighting the same fight makes me feel some comfort. Only wish i knew about the longest day sooner, but next year i look forward to doing my part! Thank you for fighting through the fatigue and helping to end alz.

    • Katie, take strength from what everyone who was a part of The Longest Day did yesterday and plan to join us next year. Mark Friday, June 21 in your calendar and start planning and building your team. The group I rode with yesterday spent time in between rides talking about what a great event this was and how to make ours better next year. I have seen such a wide variety of teams and ideas – like the Memory Musicians – that everyone can find a way to fight Alzheimer's on the Longest Day. Go Katie!

  8. You and your Mom are in my prayers Wade. Thank you so much for your determination to help end this horrid disease. Alzheimer's is a thief. It steals the very fundamental property that makes us human….memory. It destroys families. I lost my Mom to this disease nearly a year ago. Soon I will be approaching the first anniversary of her death. You are helping to make a difference not only for your Mom but also for mine and for all the other Mom's, Dad's, husband's, and wives who suffer from this terrible disease. Ride with pride Wade and Godspeed!!

    • Vicky, Thank you for your encouragement yesterday. When the local chapter emailed me with a link to the blog, I was honored that mine was chosen to be posted. I was even more honored when people were able to take encouragement from my words and provide encouragement for me during the ride. I was able to do 55 miles yesterday, despite not being able to train because of the challenges of caring for mom. I was riding a wave of determination to fight this disease, from the desire to honor my mother's fight and the words of people like you who took time to reply to my story. Thank you.

  9. Wade, I cannot thank you enough for sharing. You give me hope. You and your mom are in my thoughts.

    • Kate, thank you for the hope you gave me yesterday during my ride. I was able to read these comments on my phone during breaks from the ride. I had not trained much, so all of the words of encouragement here helped me get back on the bike and make one more lap. Thank you.

  10. I’m sitting here with my mom as well. She’s the second generation to cope with the disease. I’m in it until alzheimers is finished. I pray it will stop with her generation.

    • Hi Beth, thank you for sitting there with your mom. It takes a special person to be a caregiver. I am also praying and working to stop Alzheimer's now. I have it in both sides of my family, so in a way I am fighting for my own future without Alzheimer's.

  11. I am so sorry to hear of your mother's plight. Your love and determination are inspiring. For people who want to help avoid Alzheimer's or who are in the early stages and are interested, there is a doctor in Florida who cured her husband's Alzheimer's, and her work has been written up in several science journals, and now she's written a book called "Alzheimers: What If There Was A Cure?". I highly recommend it. My prayers are with you. http://www.pleasehelpmerhonda.com

  12. Oops, forgot to give you the author's name, Dr. Mary Newport (Alzheimer's: What If There Was A Cure?)

  13. You see glimpses of your mom, but she sees and feels all of you and what you are doing. The road to find a cure is one that we must all travel–absent politics and with strong commitment. You will never regret a minute of what you are doing now–know that the thoughts of many are with you.

  14. Wade, thank you so much for sharing. You and your mom are in my prayers. I have just found out that my husband has the disease. i did suspect it. the realization has now hit me. i am hoping i can stay strong and learn what i can to help my soulmate..

  15. Thank you for sharing your story, Wade. You are a champion for your Mom and for this cause which is so important to me as well. I lost my Mom two years ago. I am thinking of you today. What an amazing friend you have in Tracy, to find a group of people to come together and cover all but two hours of the 16 hour Longest Day! God bless you, your fiancee, her son and your team!

  16. My Mother's been fighting the Alzheimer's for over 13 yaers. We have her in her home with care 24/7. she can do nothing for he self and can only sit , sleep and eat if feed. Know life for a Lady who was like a butterfly ,never to lite for long. I feel you pain.

    • Hi Sally, I admire you for taking the road less traveled and caring for you mother. It is not the path everyone takes, but having been through it myself, I would recommend it for everyone who can make it work in their life. I would't trade the hours and days I have had with her for anything. It is the hardest and most challenging thing I have ever done. But I have learned more about myself than I ever dreamed.

  17. Hi Kimberly, I know you can stay strong. If a rag tag group of people thrown together at the last minute can ride 335 miles to honor my mom, you can do what you need to do to take care of your husband. You and your husband are in my prayers. The best advice I can give you is to read, learn and build a support network, because you can't do it by yourself. The alz.org website has a ton of great ideas and resources that will make your journey easier. Since your journey is just starting, you can take advantage of those who have been down the path ahead of you. Others helped me and it made a huge difference. Feel free to contact me anytime you have questions or just need to talk to someone who has a few ideas.

  18. The opportunity to ride on The Longest Day was truly amazing. It made what happened last night a lot easier. My mom peacefully passed away last night, surrounded by her family. Thank you for all your comments that helped motivate me during my ride. They will fuel my future efforts to fight to end Alzheimer's Disease.

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