Twenty years ago, Alzheimer’s disease wasn’t even on my radar when my husband David began to have out-of-the-ordinary mood swings and began forgetting to pay bills. When I would question him about his behavior, he would say he had it “under control.” All I could think was: “What is happening?”
David was diagnosed with early-onset Alzheimer’s disease in 2004 at age 54. Once diagnosed, we realized that there were signs that we could date back to as early as 1998. A successful dentist, he never worked again after his initial appointment prior to his final diagnosis.
In 2007, he still hadn’t told anyone else about his diagnosis — other than our daughters — fearing people would treat him differently. At this point, I had stage 4 Non-Hodgkin lymphoma and I shared my concern with him about keeping secrets. My youngest daughter, a senior in high school, was coming home from school each day to two sick parents. She needed support from family and friends and once they knew, the outpouring of love and help was unbelievable and deeply appreciated.
Although I had respected my husband’s wishes, we lost a lot of time by not taking action as soon as he started acting so differently from his usual self. Denial and Alzheimer’s are a real duo. David didn’t want to be under a magnifying glass. While grieving the diagnosis, with help from the Alzheimer's Association, we shared David's diagnosis with family, friends and colleagues.
Our youngest daughter, Jennifer, started our Walk to End Alzheimer’s team “David’s Dream Team” during her sophomore year in college. She was passionate about raising awareness in support of her father and we raised over $5,000 the first year. Last year marked our 10th year walking and we raised $91,437.98. Our 10 years of fundraising has raised a total of $364,681.24!
We could not have made this difference without the support of our family and friends. As a retired teacher, I have former colleagues and students from my 36 years in the Bloomfield Hills school district on my side. My older daughter, Jacqueline, reached out to sorority sisters from University of Michigan where she did her undergraduate studies, as well as other friends and family members. My younger daughter, Jennifer, is appreciative of all of the support she receives from Oxford Community Schools' employees, especially Daniel Axford Elementary, where she is a kindergarten teacher. All of these people have contributed, joined our team, or spread the word in any way that they can.
We’ve had a lot of success raising money for our Walk team through Facebook Fundraisers. The outpouring tells us that people are aware of the disease more and more (yes!), but this also means that more people are aware of Alzheimer’s because they have been touched by it. We must find a cure, and that is why we walk.
People don't always understand what Alzheimer’s is like unless they are living it as a person with the disease or as a caregiver, but that shouldn’t make you afraid to talk about the disease.
There is one thing I know for sure: If you are opening up to people about a diagnosis, you are going to get a lot of advice, but you need to figure out what is best for your family. That is why I have found my support group invaluable. It is a nonjudgmental place to share thoughts, feelings and experiences with people who are 100% there for me and each other.
In my support group, we have talked about caring for a person with Alzheimer’s when they have that moment of clarity. Before his death in October, David had had two: one with my youngest daughter’s fiancé and one with his lab partner from dental school who came to visit. I have not seen David so verbal in many years. Here he was giving his blessing to his future son-in-law and then recalling a dental school moment from 1974 with his lifelong friend and dental school lab partner. We cherish those moments. What gifts!
We have lost an amazing husband and an amazing father. We continue to walk and to fight for a cure so that other families will not experience the devastation of this disease.
Dr. David Kontry passed away peacefully from complications of early-onset Alzheimer’s disease on October 11, 2019 surrounded by Lori, daughters Jacqueline and Jennifer, and now son-in-law, Brett.
Walk to End Alzheimer’s
This blog comes from Lori Kontry, who is part of David's Dream Team. The team participated in the Detroit Walk to End Alzheimer's at the Zoo in 2019 and will walk again on September 26. Visit their team page here
. Their Walk to End Alzheimer's photo in this post is from a past walk event.