The Red String Ride Challenge Is Almost Here
by John R. Deitrick, CFP®, Executive Director
Over the years raising funds for Dementia research, I have encountered so many families whose lives have been touched by a journey with Dementia. I have also seen tremendous advances in the research. The increased ability to diagnose the different types of Dementia. But, there is still a long way to go.
I have personally experienced the Dementia Journey with several family members. My Grandmother had it back when they called it all Alzheimer's Disease. As a young man in my early teens, I would mow her lawn. When I arrived one summer day, she was very upset, yelling at me and accused me of stealing from her garage. In fact, she called my father, so he came to her house to see what was going on and to calm her down. I remember being very confused and upset. A short time later she moved to a nursing home. I don't remember her recognizing me at any of our visits after that. She passed away after an 8 year stay in the nursing home.
My Father-in-law had Lewy Body Dementia. I saw firsthand the impact his journey had on our family. We learned early on to love the person and hate the disease. I saw how hard it was for his wife and caregiver both physically and emotionally. I saw how my wife was affected. The long conversations with our children trying to explain. The long family discussions about the emotions and finances of moving to a care facility. The long conversations when he thought I was a friend from years ago who had played professional baseball. I knew enough about baseball to make him laugh. He passed away after a 2 year stay in memory care
In my Professional life we have worked with many of the families we serve to help them through their journeys with Dementia. I am glad that I have the experience necessary to add value to the people we serve and guide them financially and give them advise where I can. The financial side of long-term care can be overwhelming. Planning for future events like this helps. We are dedicated to our mission and we are committed to achieving our goal.
By Dorianne Deitrick
Seeing God’s plan in everything is impossible. We’re too busy to take notice; and we feel like we’re the ones in control – making decisions, making plans, executing on our plans. For me, the recognition of God’s plan most often comes in reflection. I look back on things that have happened in the past and, only then, I see, “Wow! THAT’s ….
Even though I recognize it after the fact, I’m grateful that it is so frequently revealed to me, that His blessings are made so vivid, and that He is the one in control! “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do (Ephesians 2:10).”
And then there are those times when there is pain, or the road gets tough. Whatever we’re going through, it seems impossible to believe that this is God’s plan. I’d venture the guess that when one of our clients and her family learned that she had Lewy Body Dementia, they asked a similar question. To that family, I’d like to express my thankfulness for coming into our lives, sharing your experiences and knowledge, and allowing us to be part of the disease with you. Without you, we certainly would not have recognized the symptoms in my father as soon as we did, and be able to get him the medical specialists he needs quickly. Thank you to you, and to God’s plan that brought us together.
Lewy Body Dementia is the third most common form of dementia. It is a devastating diagnosis that brings with it decline in thinking and reasoning, vacillation between alertness and confusion, vivid visual hallucinations, delusions, REM sleep disorder, and physical symptoms that appear like Parkinson’s. There are no treatments that can slow or stop the damage caused by Lewy Body Dementia. It gets worse over time and shortens an individual’s lifespan.
For me and my family, God’s plan is tough to understand right now. Why does my Dad / my husband / our Boppa (our kid’s version of Grandpa) have to be sick? Why is there no medicine to make him better? How long will this go on? Why us? But, there are still blessings to be seen. Mom and Dad live here in Columbus now where all their grandchildren live, and where both their daughters are available for support. My girls have had their grandparents with them more in the last year then they did in their first 10 years combined – holidays, birthdays, gymnastics, basketball, volleyball, orchestra concerts – you name it, we’ve all been together.
And that’s how we’re going to get through this. Live through it. Love through it. Give to each other through it. For my husband, this and the experience with so many of friends and family members, has given birth to the Red String Ride. And, I couldn’t be more proud of him and his courage to use his passion for cycle to bring awareness to this disease.
God has a purpose for our pain, a reason for our struggles, and a reward for our faithfulness. “And we know that in all things God works for the good of those who love him, who have been called according to His Purpose. (Romans 8:28)”
And someday, at His choosing, God’s plan will be revealed. “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future (Jeremiah 29:11).”
By Janice Eddey
I had noticed that things had not been right for a while, like not remembering things, arguing with people and finally he got lost coming home from a conference in Pittsburg. I got him to go see a Dr. by reminding him that his mother had 2 brain tumors and I thought he needed to be checked. We went to the Dr. the day after the 10thanniversary of 9/11. The Dr. asked him what was important about yesterday and he replied that “ Nothing big happened.” We had watched the 10th anniversary event on T.V. the day before. He gave him some other questions to answer which he was unable to and diagnosed him with Alzheimer’s.
We were able to go on a trip in Jan. of 2012 to the Holy Land with a group from our church. I was worried about how he would handle it, but thanks to others on the trip, I was able to calm him down when he got anxious. A miracle happened when we were eating lunch in Palestine. The owner started talking with our group and he mentioned that his brother was a Dr. in Texas. He had noticed that George was anxious and he told me his brother was doing research about Alzheimer’s. He called him and I stayed connected with him and he was able to suggest trials that might work as well as giving me suggestions about how to care for him.
Gradually he got more and more angry and, started hitting me when I started to leave the room or tried to calm him down. He wandered off a few times and luckily, I was able to find him. His family and our daughters decided he needed to be placed in a facility. We found a small memory unit and placed him there in 2014. He was angry there at times but he loved to hear music and that was about the only thing he enjoyed.
In 2016, he was taken to the hospital for they thought was c-diff, and he had a serious stroke while in the hospital. The nurse who was doing testing on him, told me he would probably die of asphyxiation because his swallowing was impaired. Three months after he had the stroke, I was there for lunch, which I went there often to help him eat. He ate pureed food at that point but soon after he ate, he started throwing up his whole lunch. That night I went back to check on him and he was as calm as I had seen him in a long time. The next morning, the facility called me and said he was having trouble breathing. He passed away soon after I arrived from asphyxiation. I think he might still be suffering still had it not been for the stroke.
By Mary Ann Ebert
Elizabeth M. Snider lost her battle with Lewy Body Dementia on April 6, 2014. Beth held a Master’s Degree in Library Science and worked for Chemical Abstracts until she retired in 2006. She was a very talented musician, she was an accomplished pianist, organist, and she loved to play hand bells and chimes.
While Beth never married or had children, she had many beloved friends and extended family. She was my aunt, my mother’s sister. Since Beth lived alone it took us a little longer to realize she had a problem. We noticed Beth exhibited odd behaviors when visiting over the holidays, but we attributed them to her not being used to the chaos of all of our children. Then one day we received a call from a friend of Beth that she showed up late to a funeral, wearing sweat pants and appeared disoriented. We immediately went to see her and she could not remember if she had eaten that day. We brought her to stay on the farm with us "for the holidays" and honestly we never took her back home other than to pick up items she wanted to have with her.
In hindsight, there were lots of warnings we just dismissed them, not realizing the seriousness at the time. One year she didn't come for Christmas, her excuse was that she was tired, we were picking her up and she was only in her 60's? Her coworkers had to constantly help her with her computer that for many years she used with ease, this prompted her retirement in 2006. She stopped being willing to play the piano for special events. She kept having TV and lawn mower issues, luckily at the time my son was attending OSU and lived just minutes from Beth. The big red flag was the day during that fateful November when she looked at me and said I can't play the piano with both of my hands at the same time anymore. I hauled her off to the doctor.
The doctor shall remain nameless as we were in his office for about 5 minutes when he said Beth you have Alzheimer's and there is nothing that can be done, he wrote a prescription to slow down the progression and wanted to see us again in 6 months. What? Who is going to handle the daily living with her? What are we supposed to do? I was not satisfied with this doctor so I moved on and we landed an appointment with Dr. Doug Scharre at the OSU Medical Center. His team was such a blessing to our family. While we could not cure Beth, this team gave us answers and advice. They did extensive testing and that is how we learned all about Lewy Body Dementia.
Beth lost her battle, but I can find comfort in the fact that we were able to give her a life of quality and comfort until the very end. Beth lived in fear of being so confused that everyday every person would be a stranger to her that never happened. I am so glad to say that on the day that she passed I was face to face with Beth and I asked her if she knew who I was, she smiled and said, "Mary Ann." She may have forgotten how to make a sandwich, use a fork or how to turn on the TV, but she never lost her humor or forgot any of her friends or family. She was never in pain; her body just simply stopped functioning. I wish the best to anyone facing a journey with Lewy Body Dementia and I hope that one day there can be a cure.