Apr 172013
 
The Longest Day: Fighting Alzheimer's

“This Is Our Life” is the final line of a production entitled “Resurrection” that my husband Steve and I have been a part of with our church singing group for the past 17 years. During the last song, everyone in the congregation holds a candle that is lit from a single candle that stands alone on the altar. As each candle is lit, we watch the church go from dark to light.

The first year we performed, a small group of us got together and pitched in—sewing costumes, rehearsing and doing whatever was necessary to make it happen.  Almost two decades later, there are more than 100 people in the  cast. The experience has taught us that when people come together, the illumination is very bright.

This summer, on June 21, my husband, our family, our friends, and community will stay in motion from sunrise to sunset as a way of showing our commitment to a day when Alzheimer’s is no more.  It’s part of The Longest Day, an all-day event to raise awareness and funds for Alzheimer’s care, support and research. We’ve named our team “This Is Our Life” because we believe—similar to watching the church go from dark to light during the performance —if we all work together, we can illuminate the darkness of Alzheimer’s.  The more people willing to tend to the light, to spread awareness about Alzheimer’s and to get involved, the closer we come to a time when Alzheimer’s doesn’t exist.

Alzheimer’s is no stranger to our family.  Last year, right before his 59th birthday, my husband Steve was diagnosed with early-stage, younger-onset Alzheimer’s.  Five years earlier, his mother was diagnosed with Alzheimer’s.

In a way, Steve’s diagnosis is a gift.  Because we have this knowledge, we don’t waste a minute.  We know this time is sacred.  Steve’s quality of life is good—and we are living every day.

Time to Make a Difference

After  receiving a diagnosis of Alzheimer’s, there is so much you feel like you can’t do. There currently aren’t treatments to stop this horrible disease. There is no cure. But Alzheimer's Charity Event: The Longest Daybeing part of The Longest Day is something we can do.  It is empowering to have this tangible event where we can take action.  And it’s action that really matters.The nearly $12,000 we raised last year helps support Alzheimer’s programs and care, and furthers the Alzheimer’s research going on throughout the world to try to find better treatment and a cure.

For us, the event is also about community. At the end of The Longest Day last year, we felt better about the future than we did at the beginning of that day. Every donation came with a note of support and love.  At sunset, 30 people gathered at our house for a celebration of all we accomplished. This year, we hope to have 50—or even 100.  When you bring people together, for important causes, unbelievable mountains can be moved—and our amazing community has shown us that they are here with us on this journey, that IS Our Life, until a day when Alzheimer’s is finished….or is just a memory!

Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. 

  11 Responses to “This Is Our Life – And Alzheimer’s Isn’t Keeping Us From Living It”

  1. Bless you and your 'family'. My husband was diagnosed in May 2008, just after his 69th birthday. It progressed very quickly (considering that some, his Mother included, decline for ten years or more) and on January 30, 2012, his/our struggle ended. Our three children, helped with caregiving as much as their busy lives would/could allow. However, in November of 2012, it became apparent that I could no longer keep him at home. He was falling, moving and breaking things (even though I had 'baby-proofed' the house) and sometimes was aggressive. His three months in an Alzheimer's facility were necessary for his safety and my sanity. I journaled daily, and our son had began a video diary to document the journey, and keep the memories of Bill's final years. Enjoy EVERY day that you can. Again, bless you and the wonderful community of support.

  2. Great story, Judy. My husband, Tom, was diagnosed seven years ago at the age of 63, and we are still living a fairly active life, though things are changing rather rapidly now. There are so many ways to keep life and love as normal and strong as possible. I've been writing for Maria Shriver's blog on Alzheimer's and also writing poetry, which has helped me to keep my balance and be a better caregiver to Tom. I send you love and warm wishes for both you and Steve and hope that you will gain strength for your journey from all the people who are supporting you.
    Warmly, Nancy Calhoun

  3. It was inspiring to see the number of businesses and organizations involved, taking time out of their Sunday morning to show their support and contribute to raising funds to support research and education in hopes that one day, we’ll find a cure for this life-altering condition. Also incredible was the number of seniors who turned out for the event and the number of assisted living and senior living facilities who brought residents. Families came out in droves, wearing matching t-shirts to support their loved ones currently suffering from Alzheimer’s.

  4. Dear Judy my husband was diagnosed at age 60. He can’t do little simple things that we take for granted.i am trying to get him out and travel before he can’t go anymore. This disease has had an affect on me too. My husband Danny there wasn’t anything he could not do, this breaks my heart .

  5. My beloved daddy was diagnosed with early on set Alzheimers and front lobel dementia at the age if 62. The disease ravaged his brain and stripped him of his dignity. It broke us as a family to watch this gentle, loving, god-fearing man lose his faculties, his co-ordination and just his general ability to do the smallest of things. He battled the disease for almost 14yrs much to the surprise of all those in the medical profession. But 3 weeks ago he lost his battle and a massive heart attack took his life. He told me when he was first diagnosed with Alzheimer’s that when the time came he would not be going to a “better place but he would be going to the BEST place”. He is now safe in the arms of Jesus but his passing has left a void in my life that will never be filled. I felt inspired reading your article and hope and pray that Alzheimer’s will one day have a cure. Please God, let it be so. X

    • Dear Gilly,
      I thank you SO much for sharing your story! I will carry you and your Dad in prayer with me on Friday as we dedicate our day to all those who are fighting this disease and all those who have fought it! Alzheimer's disease may have ravaged his brain, but Jesus has set his soul free! May God hold you in His Hand until you are reunited!
      Many thanks and best wishes!
      Judy

  6. Every story out there is so inspiring – The spousal caregivers with your never-ending patience and ENDURANCE to help your partner face the challenges that come minute to minute… or not – you just never know, do you??
    My dad was diagnosed 7 years ago at age 65 with MCI and has full blown Alz and mixed dementia as of 4 yrs. ago. My mom is his full time caregiver and one of the most amazing women I have ever had the chance to know. She had always been taken care of, moved from her parents home to becoming a wife, and never knew the independence that I have. I lacked appropriate respect for her until the last 7 years (actually 6 – the first year post diagnosis was NOT pretty), but after that she called me and asked how to balance a checkbook, how to figure out all the components of tracking income, bills (all that independence that she had struggled with in me) She learned and created an amazing budget – in the process we discovered over $100k in debts that she was not aware of. It nearly wiped them out financially but she has embraced her budget, and her new condo that she can manage(vs. the 4000 sq ft house on 3/4 acre). Dad has survived pancreatic cancer (less than 5% of people do…) and a subsequent heart attack. God has a message for him to teach us, and I am still struggling to figure out what it is.One thing I have learned is an admiration second to NONE for my mom – she is unbelievable….. and dad can still play a mean game of dominoes.

  7. I am looking forward to working with the Alzheimer's Association. Shamefully, I am just getting involved, however I feel it is never to late to get on board a worthwhile cause, you just need to make sure you are applying all effort to help make it a success. I am the Executive Director of a Senior Activity Center and I see various levels of dementia and Alzheimer's and it is heart wrenching when I can not make my clients life better or help them to Alleviate some of the confusion they are experiencing for those moments. It is also frustrating when I find that family member, although they believe they are helping by making decisions for mom and dad without knowing what the effects can be. I can say a lot in my frustration, my lack of understanding, and my willingness to educate myself on this vast life changing experience. I pray for a cure. I pray for methods to be able to help my clients family understand what has really changed in their lives.

    Thanks for all you do,

    Laura

  8. CONGRATULATIONS TO YOU AND EVERYONE IN YOUR COMMUNITY. YOU ALL DID A WONDERFUL JOB. CONTINUED SUCCESS. YOU ARE AN INSPIRATION TO OUR TEAM .

  9. My husband was diagnosed 3 years ago. I had to retire to stay home with him due to the fact homecare was using up all our savings. He has no short term memory and it is very hard for me, He had his right leg amputated 4 years ago and can not use a prosthetic. We are married 42 years and I just can not think of putting him some place. But , I have only one son and he is working very hard to manage his family and I try not to burden him. My husband is a good man, although he has always been selfish, now more-so than ever. I am never away from him and it is very hard to deal with this 24/7. I love my husband but I need help. Any suggestions are welcome. Thanks for listening.

    Joanne

  10. I know how hard it would be to face the bitter truths like this. The only thing that could be done to prevent him from getting adversely affected by the disease is to keep him busy and fulfill his wishes.

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