On Day 12 of the #DAI #WAM2018 #Hello my name is blog series, we feature new DAI member Jeff Borghoff from the US. This series is not only about raising awareness of the many lived experiences of dementia, it is highlighting the challenges, as well as the reality that so many people continue to live positive lives, alongside dementia. Thank you Jeff for allowing us to share your story; everyone at DAI, and the global dementia communtiy is helped and educated through you inviting us into you and your family’s world.
Dementia does not define me
Hello, my name if Jeff Borghoff, and with my wife Kim, we reside in Forked River, New Jersey with our three children. I was diagnosed with younger-onset Alzheimer’s disease in 2016 at age 51. During my career, I was a software architect and developer responsible for the design, implementation and project management of technical solutions to help companies solve document-intensive business challenges.
Several years prior to the diagnosis, I experienced changes in my ability to recall information. Although my spouse, Kim was noticing these difficulties at home, the issues were predominant in my professional life where I experienced increasing difficulty with problem solving, managing tasks and providing appropriate supervision to his team. Therefore, I approached my management team and asked for an alternate position with less responsibility. However, even in this new role, I still found it difficult to manage my duties.
Shortly thereafter, I experienced a serious stomach virus which led to a brief hospitalization. A series of physical neurological symptoms, including facial twitches soon followed which resulted in multiple visits to specialists, and I was still experiencing changes in my memory, but also began to notice differences in my balance and speech. After six months of testing, which included CT, scans, MRIs, spinal taps and neuropsychological evaluations, I was diagnosed with younger-onset Alzheimer’s disease. My father is also living with the disease.
Kim was the first person to receive the news of my diagnosis. She immediately called me and we met to discuss the diagnosis at a nearby park. Although I had been anticipating a serious diagnosis and researching Alzheimer’s disease extensively, I was still stunned and saddened by the news. Together, we went back to meet with the neurologist to discuss next steps, including planning for the future.
Together, we decided to share the diagnosis immediately with our three children. Their reactions ranged from devastation to anger and sorrow. After sharing the diagnosis with others, we have found most to be sympathetic, but often surprised that someone of my age could be diagnosed with younger-onset Alzheimer’s disease.
We began planning for the future by meeting with an attorney and making legal and financial plans, including powers of attorney and applying for Social Security Disability Insurance (SSDI). We also scaled back on our spending and invited my parents to live in a converted two-car garage in-law suite. My parents are also helping to pay off the home mortgage as they prepare for their future cost of living.
After finding the Alzheimer’s Association online, together with my family we created our “Walk To Remember” Walk To End Alzheimer’s team to raise funds for the Alzheimer’s Association. I also enrolled in the Medic Alert + Alzheimer’s Association Safe Return® program and am enrolled in a clinical trial through the Alzheimer’s Association TrialMatch®.
As a participant in the Alzheimer’s Association 2016 National Early-Stage Advisory Group and Early-Stage Ambassador for the Delaware Valley and Greater NJ chapters, I help raise awareness of younger-onset Alzheimer’s disease and the value of early detection and diagnosis.
“I am not letting this disease define who I am and what I do on a daily basis. I am doing everything I can to raise awareness.”
Copyright 2018: Jeff Borghoff, Living with Alzheimer’s Disease
Jeff joined DAI this year, and is involved in many other organisations and personal things, including managing his own website.