Behind the Scenes:
A Family’s Devotion to
One Woman's Legacy

At first glance, the statistics themselves are overwhelming: more than 55,000 people in Western New York have been diagnosed with Alzheimer’s disease. But "overwhelming" doesn't begin to describe the everyday life of a family dealing with this disease. That is the heart of this story.
First and foremost, Pauline Wipfler is a beloved wife and mother. Before her diagnosis of early onset Alzheimer’s disease at age 57, she was also a beloved teacher. Her strength, courage and humility in the face of this disease are a testament to her and a legacy that undergirds her family’s devotion.
By all accounts she is a remarkable woman. She was a pioneer and innovator in the field of teaching English-as-a-second-language, recognized as "teacher of the year" on two separate occasions. The words of one of her students, who came to her class not knowing a word of English, gives meaning to who Pauline became to so many: “Your presence permeates my soul, your teachings and love guiding future generations, thank you for these words [I am using] which now make sense."
Pauline's diagnosis was the culmination of three years of frustration trying to get an accurate evaluation. Pauline and her husband, the Rev. William Wipfler, while researching the possibility that it was Alzheimer's, were careful to protect their family from their worst fears. She recognized that her symptoms were similar to what her mother and her grandfather had suffered - a debilitating undiagnosed dementia. During the search, she was aware that her memory was failing and was brave and humble enough to appoint student monitors to quietly advise her if she was repeating lessons. When the diagnosis was established in 1989, Pauline immediately retired. Shortly afterwards, her uncle was also diagnosed with the disease.
In 1996, seven years after her diagnosis, daughters Ann and Sarah (living in Western NY) and sons John (in Maine) and Mark (in Connecticut), initiated what Fr. Bill calls a “conspiracy.” The four arrived at their parents' home ostensibly to “pick up a few things”. A gigantic rented dumpster also appeared which they filled with 30 years worth of accumulated "stuff." . They were concerned that the role of sole caregiver was becoming too difficult for their father and convinced him to sell the family home and move to Western New York to be closer to their daughters and their families. These dedicated children knew that they would all be needed to help care for their mother.
In the meantime, Sarah and Ann had been doing their homework and had been attending Alzheimer's Association support group meetings where they learned from the experience of others what to expect and how to cope with the challenges while caring for themselves. When Bill and Pauline moved into their new home in West Seneca, Bill also joined the support group.

As the disease progressed, so did Bill’s health problems, and in 2000 the difficult decision was made to find a facility to take care of Pauline. As family, no decisions were made alone. Regular phone calls and contact between the four siblings and their father, keep this close knit family together. The family became more and more involved with the Alzheimer's Association, receiving support and also offering it to others in similar situations.

Visits to the nursing home became sing-a-longs with Ann, an accomplished music teacher, singing and playing the piano for all the residents. She, with Mark, a physician, John, a lawyer, and Sarah, a physical therapy professor at D'Youville College, make this devoted family, with their specific talents, able to combine their strengths to work together for the best possible outcome for their adored mother.

Throughout these tremendously difficult times, family members have become active volunteers for the Alzheimer's Association. Bill, convinced that this disease will eventually bankrupt the health care system, has served as a very vocal and active Chair of the Western NY chapter's Advocacy Committee. He has traveled to Albany and Washington, D.C. in a tireless effort to raise awareness of the immense costs of Alzheimer’s disease and the need to finance research for a cure. As a member of the Board of Directors, he is on a constant mission to tell everyone in his path about it. One has to wonder if this is his own self-prescribed therapy to relieve the helplessness and solitude he feels at the loss of his partner.

Four years ago, Bill formed "Pauline’s Team" to participate in Memory Walk, the nation’s signature fundraiser to benefit the Alzheimer's Association. There were twelve members on the first team, raising approximately $6,000. Year by year, Bill aggressively recruited walkers and donors for his team, even contacting Pauline’s classmates (1953) from Wilson College, many of whom now contribute annually to honor their former class president. Along with members of St. Matthias Episcopal Church in East Aurora and staff from Pauline’s facility, The Waters of Orchard Park, this family’s support system now has a team of 37 members, raising $11,600 at last year’s walk.

This family is committed to the support and furthering of research to learn everything possible about this horrendous disease and to seek a cure that will one day put an end to Alzheimer's. They have participated in DNA studies to examine the causes and development of the disease within families. And recently they have begun making painful but important arrangements with the neuro-pathology department of Buffalo General Hospital and the Brain Bank at McLean Hospital, affiliate of Harvard University, for an autopsy of Pauline’s brain to be made at the time of her death.

Years before her symptoms or diagnosis, the New York State Teacher's Union (Pauline's employer) offered their employees long term health insurance. As a result of Bill's previous heart problems, they rushed to take out a policy for both of them, never thinking that it would be needed for Pauline. Another part of the Wipfler family mission is to tell everyone how important long term care insurance is. The costs of her care, the care she deserves, would have bankrupted them long ago. The beloved family cabin in the Catskills was sold to supplement the costs that even long term care insurance didn't cover. (the photo of the family at the cabin attached) If not for long term care insurance, this family would have had to become part of the health care system that Bill Wipfler speaks of, the system that without major changes, will soon be bankrupt due to these type of costs for more and more people.

Pauline Wipfler is the remarkable woman behind this family’s passion and strength. Through her, because of love for her, and to honor her, they have become everything she would have wanted them to be and more. Their deepest pain and regret is that she cannot celebrate all of this with them.