On this snowy Sunday morning, I sat in my pajamas watching the CBS News Sunday Morning when Barry Petersen began to tell Jan’s story. They showed archived clips of beautiful, vivacious Jan reporting the news both in the studio and on location. Now at fifty-five, Jan has advanced Alzheimer’s and lives in assisted living. Jan’s speech is hesitant, and her words travel in a circular pattern of incomplete thoughts and repetitive phrases. She talks to the woman in the mirror and wants her to go to lunch with her. When she realizes the woman isn’t invited, she says goodbye to her and walks away.
Seeing the human story of Jan makes the statistics come to life. Approximately 250,000 families have a loved one with early onset Alzheimer’s. When the onset of the disease occurs before a person is sixty-five years old, it is considered early or younger onset.
Barry interviewed another woman with early onset Alzheimer’s. Pat, fifty-two, was diagnosed six years ago. “My time’s getting shorter,” she said. She is determined to enjoy life while she can. She is adamant that when she enters into the late stages she doesn’t want her beloved granddaughters to visit her. She wants to spare her grandchildren the heartbreak of visiting a grandmother who does not recognize them.
The disease changes family dynamics, and children and spouses begin to feel like parents to their loved ones. Caregivers learn the meaning of unconditional love when their loved ones become mired in a disease that erases memories of closest family members.
Barry explains why Jan’s story is so personal to him. He and Jan were married in 1985 while she was a reporter. “She embraced each new city as an adventure,” he said. Jan sits on the patio and when Barry arrives, she hugs him. They sit and Barry asks her about her husband. “I do love him,” Jan says in halting words. She continues to speak of her husband in third person not recognizing Barry as the husband she vaguely remembers. When Barry asks Jan for her husband’s name, she stammers and then pronounces that he is “Mr. Happy.”
Barry went through the steps of thousands of caregivers before him—he took care of his wife at home, then hired caregivers to help, and finally placed her in assisted living.
The story concludes with Barry introducing Mary Nell, a widow that has become his companion. Mary Nell knew a relationship with Barry encompassed a relationship with Jan and said she could not love Barry without loving Jan. They have become a family of three.
Jan was a person who loved life and lived it to the fullest. Barry has written Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s to honor the woman he has shared his life with, and who has been his life, for more than twenty-five years.
Barry realizes that many people will not understand his relationship with Mary Nell and how loving her does not diminish his love for Jan. “To embrace life, I must go on,” Barry said at the conclusion of the segment.
Copyright © Jan. 2011 L. S. Fisher
http://earlyonset.blogspot.com/
