Through our efforts on this single evening, Kim and I, along with our friend Della Qualls Pruitt were able to help raise over a half million dollars for the Alzheimer’s Association.
Thank you for this opportunity to speak with you today. I was diagnosed with younger-onset Alzheimer’s disease in March of 2016 at the age of 51. I went through almost a year of hospital visits, testing and misdiagnoses. During this time, the majority of the physicians and neurologists mentioned the possibility of Alzheimer’s but disregarded this diagnosis because I was too young. I have a strong family history of the disease; my father is currently living with Alzheimer’s and my grandfather and uncle have passed away from the disease. As you are likely aware, Alzheimer’s is a terminal brain disease for which at present, there is no way to prevent, cure or slow.
My wife Kim was the first to receive the news of my diagnosis. Kim came home early from work, and arranged to pick me up so that we could talk privately away from our kids and my parents who now live with us. We sat on a park bench and she told me, “I spoke the doctor. It’s Alzheimer’s.” Needless to say we both wept. When I digested this news, my future felt compressed.
We made an appointment with my trusted neurologist from Columbia Medical Center. I wanted to know what my prognosis was, and “how long do I have to live?” Dr. Karen Bell told me “not to go there.” “You’re in the early stage and you need continue to live a fruitful and purposeful life.” She encouraged me to be proactive in planning for my future and suggested I reach out to the Alzheimer’s Association to get involved and stay engaged. So within days of my diagnosis I reached out to the Association.
I’ve lived a life of serving others and I wanted to extend this to my community of people living with Alzheimer’s and related dementia. I was thrilled to serve a one year term as a member on the Alzheimer’s Association National Early Stage Advisory Group, joining others from across the country living in the early stage of Alzheimer’s and other dementia to raise awareness of the disease by leveraging our personal stories. I am currently serving on the Early-Stage Advisory Council for the Delaware Valley & Greater NJ chapters of the Alzheimer’s Association and as member of the Greater NJ Congressional Team. I represent the personal perspective of early stage Alzheimer’s and advocate for state and federal legislative priorities that will make Alzheimer’s disease a national priority. The Alzheimer’s Association has given me great support, encouragement and purpose to advocate for and create awareness for people living with Alzheimer’s.
Kim and I have also been providing volunteer support during monthly education programs delivered by our local chapter. These programs are provided for free in person and online, offering valuable information to communities across the country. Both education programs and support groups help empower individuals affected by Alzheimer’s disease by learning what to expect, how to manage day-to-day challenges and plan for the future. These support programs and services are offered free of charge to the attendees due to the generous support of our donors. We rely on this support to expand the reach of these programs and services across the country to serve all affected by the disease.
When a person is diagnosed with Alzheimer’s- especially someone like me who is in the prime of my life, your world can come crashing down. And in many cases, it’s difficult not to withdraw and become isolated from the world around you. Yet during my time of greatest need, the Alzheimer’s Association was there for me and my family.
Kim
When faced with a challenge, I attack the problem by learning as much as possible about the subject. The night we received Jeff’s diagnosis, I visited the Alzheimer’s Association’s website and joined ALZConnected®, an online community where I could immediately connect with other caregivers to share my concerns and receive guidance.
I also registered for a younger-onset Alzheimer’s caregiver support group to learn more about what to expect and how to begin planning for the future. The availability of this support was invaluable. Although I personally have not used the 800 24/7 support number, during our Alzheimer’s journey and volunteer work, we have referred this invaluable support service to others on countless occasions.
Every month I travel an hour each way to attend this support group. My connection to this group is important because we all share the experience of caring for someone who was diagnosed with Alzheimer’s or dementia before the age of 65.
The challenges and life changes we face as care partners and caregivers are unique. Changing parental roles, loss of income and planning for long-term care require special consideration for families living with younger-onset Alzheimer’s.
I was 42 when my husband was diagnosed, and panic set in rather quickly. He was the main breadwinner; we had two young adults in college and one entering the following year. My in-laws (father-in-law also has Alzheimer’s) just moved in so we could care for them as well. I thought, “how am I going to do this!?”
I immediately scheduled an appointment to meet with an elder law attorney to update our wills. We took steps to create a living will and powers of attorney for Jeffrey. With his transition away from his career much sooner than we expected, I took on two new part-time jobs, in addition to my very stressful full-time job.
I was encouraged by peers in my support group to speak with an attorney specializing in Medicaid planning to help protect what little assets we have. During our 1st hour consultation, I hung up the phone, grabbed my face and cried like a baby.
It was so overwhelming and terrifying to be dealing with this at our age. After that phone call, I did nothing for an additional six months. I wouldn’t answer the attorney’s phone calls; I didn’t want to deal with it. However, as I started to see my husband slowly progressing I realized I needed to finish this final piece of the financial planning. We are still in the process of completing this last step and thankfully, we have found an attorney who understands what we are going through and has provided much needed reassurance.
After our last visit with the attorney, Jeff told me how surreal the experience was for him. He said, “Sitting in the attorney’s office and coherently and lucidly discussing your end of life directives when you have a terminal disease is so vastly different than the experience one has when applying for life insurance as a young adult.” His goals now are compressed by time. Being there for his kids’ college graduation, their marriages and playing with grandchildren are the top three items on his bucket list.
The Alzheimer’s Association has given my husband a purpose. He has been given the opportunity to use his voice to advocate for others who can no longer speak for themselves. He has said many times, the cure may not come in his lifetime; however, he is doing everything he can because it will come in our children’s and grandchildren’s life, in your children’s and grandchildren’s life.
The Alzheimer’s Association has given me information and support during one of the most difficult points in my life. The resources I received helped me to feel prepared to face the challenges ahead and recognize that I was not alone in the journey. I feel more confident traveling this path knowing that the Association is there to walk alongside our family and millions of other families just like ours.
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