Young-Onset: Alzheimer’s Road Less Taken
Karen Parks, Owner, Parks’ Place Memory Care, Plymouth
Written by Greg DeMarco, CSA (R)
A senior executive can be excused occasionally for losing track of details outside of work. That was the case for Jerry Parks, Karen’s husband, in the late 1990s(and in his late 40s) when he was working as a senior executive in the construction industry. Then the occasions became more so but always explainable in some way, though still puzzling.
Karen was a dedicated mom raising four kids, very active in their schooling and other outside activities. Busy family life and Jerry’s cognitive challenges occurring around work stress kept the suspicions at bay. Then a camping trip, completely disconnected from work stress made it undeniable. “That was the light bulb moment” Karen recalled.
Clarity Is Elusive
In 2000 cognitive testing provided inconclusive results. So, at age 50 with very active lives it was hard to get much clarity beyond that. Symptoms gradually mounted over the next few years. This led to performance issues for Jerry at work and charted the course of four job losses over six years. The rapid increase of technology in business in those years accentuated the challenges Jerry was trying to manage. In his final position he told Karen at one point “The world is speeding up while my brain is slowing down.” Eventually, by necessity Karen had to return to work herself.
Uniquely Overwhelming
New testing in 2006 confirmed the accumulating suspicions. With that, the most unmooring part of the journey hit. Karen and Jerry’s two oldest daughters were with them when the doctor presented the test results. “What I recall following the doctor’s comments was the dead silence” Karen explained.
Karen described how the doctor then stood up and they all walked out quietly. “Surreal. Nothing was offered in terms of support or follow up” she said. Their daughters had to get right back to work as did Karen. Jerry had recently been laid off and so had to simply go home.
“Receiving a dementia diagnosis is overwhelming, but Young-Onset is a whole other level of impact. You cannot do this alone!” Karen emphasized. Karen also eventually saw her mom through her dementia diagnosis and care some years later.
Responding With Resilience
When Karen got home Jerry explained he’d spent time in his workshop that afternoon and after shedding some tears concluded “Let’s try and make something of this”. And so, over the following months Karen and Jerry applied courage and constructed new purpose in making the necessary adjustments. Particularly with housing that would be most suitable to the inevitable changes. Sharing their new reality with family and friends was gradual and somewhat uncertain as some aren’t sure how to understand such news and how to respond.
Making A Way Out Of No Way
Given the rarity of Young-Onset the Alzheimer’s Association did not have specific programming or support to offer when Karen reached out in early 2007. However, it was emerging on the association’s radar as more organizations brought it to their attention.
In October 2007 Karen and Jerry along with three other couples were invited by the association to participate on a panel about their unique Young-Onset challenges for association partner organizations. At this event the wives all locked eyes and it was clear they were going to, and needed to, bond.
That very evening the four couples dined together and a support system was born. Together these women met regularly, eventually naming their group “Pisa Girls”. Like Italy’s landmark they are one another’s tower of strength knowing they can always lean on each other.
Purpose Is Power
Karen and Jerry and others from the Pisa Girl group went on to participate in lobbying for better funding for Alzheimer’s research in Washington DC for 6 years. At the same time Jerry and the other husbands joined “The Gathering” with Lyngblomsten Care Center and helped develop training for those with Young Onset Alzheimer’s.
When the Giving Voice choral organization started in 2014 Jerry, who never had sung before, decided he’d give it a try. It lasted for years and was a tremendous value to all. Karen referred to it as her “safe three hours” where everyone she was with understood.
Even the family dog, Lucy, got involved by becoming a trained service dog. Karen clearly credits Lucy’s value in noticeably forestalling the pace of Jerry’s decline.
Senior Living Recognizing Young Onset Dementia
All the years since the diagnosis the “…make something of this” pot was percolating on the back burner. And with another few years of focused planning the dream to create a special home for people living with dementia, especially those with Young-Onset became a reality.
Parks’ Place Memory Care located in Plymouth is the culmination of years of labor and love on the part of Karen, her children, and many, many others. Upon its 2019 opening it manifested the dream to be an especially comfortable and welcoming home. It allows family and friends to provide as much normalization of lifestyle for their loved ones living with dementia, and makes family time more like dropping in on your relatives than visiting a facility.
Memory Care Lives On
Jerry was able to live nearly three years in the comfort and vitality of Parks’ Place. Since his passing in January of this year, Karen and family continue to operate this special memory care home including a number of their residents living with Young-Onset.
Karen and Jerry and their four children and eleven grandchildren have certainly “made something” of and for Young-Onset dementia care in Minnesota and beyond.
“Karen Parks has become an extension of our family! As my mother has progressed through the disease, Karen has been such an advocate for my mother, and our family. It is an overwhelming disease and Karen has been clear about our rights along the way. I feel like I have someone by my side, walking this journey with me.”