That’s Me

by Sydney Grau

I hope they can help me,” she said to her husband David, “because my brain is sick.” That is the only time Nancy Palfey, age 52 ever acknowledged that something was wrong with her.

Nancy is the youngest resident at the Centre Crest nursing home by 20 years.

She is part of the memory unit, where people afflicted by seemingly “old age” diseases such as Alzheimer’s and dementia are professionally cared for when it just becomes infeasible for them to be home.

Nancy and David have two young children. Sarah, a 19-year-old freshman at Penn State University, and Grace, who is 15. While Sarah no longer lives at home, she was around to watch Nancy’s decline. Both daughters could tell something with their mother wasn’t right.

Nancy was an award-winning artist, whose ability to draw realistically in pastels was unparalleled. The degeneration in her mind is visible in the decline in her work. Recently, David received a package in the mail—a manuscript of a storybook from an author requesting that Nancy do his illustrations. It’s still sitting on the counter in the Files home.

One of the most difficult things about the disease is diagnosing it. The subtly increasing changes in behavior are often misdiagnosed for other psychological disorders. When David first brought Nancy to see their family doctor, they began treating her for depression. It took months before they ended up seeing a neuropsychiatrist and neurologist who could solve the mystery. Finally in January, and November of 2014 the doctors confirmed David’s suspicions.

© The Association for Frontal Temporal Degeneration
© The Association for Frontotemporal Degeneration

Getting Nan into Centre Crest was a difficult battle too. At first, David had to apply for social security, which he found surprisingly easy. But long term health care, specifically nursing home care, is expensive. For a family only capable of generating a single income, paying $200 a day for care out of pocket is nearly impossible.

David struggled to get Nancy government funded health insurance because of her age. “In their eyes, Frontal Temporal Degeneration is not a recognized disease, and someone who is 51 doesn’t get ill,” he said. “If she was 60, this wouldn’t have been an issue.” David had multiple people come in to evaluate Nancy who all told him that she shouldn’t be living at home and that she clearly couldn’t take care of herself. But they still denied her. It took David conversations with government officials to get them to finally understand Nancy’s situation.

Things came to a head in the summer of 2015 when Nancy had a bad fall that left her in the hospital for 3 weeks. Not because she injured herself, but because it wasn’t safe for her to go home. She waited in the hospital until finally, David’s push for medical assistance came to fruition. In September of 2015, the day before Nancy and David’s 26th wedding anniversary, Nancy was admitted to a nursing home.

While the decision to move Nancy out of the house was difficult, David, Sarah, and Grace all agree that in some ways it was a relief. “I know that she can be safe, and the people at Centre Crest love her so they take good care of her,” Grace said. Sarah and David shared similar sentiments regarding the care at Centre Crest.

Nancy doesn’t have much time left. It’s the sad truth of rapidly degenerative brain diseases. FTD often is the cause of other disease onsets such as ALS, something becoming obvious in Nancy who has suffered various falls and two bad leg breaks in the past 6 months. The Files family has come to terms with this, but preparing for the inevitable is sometimes impossible.

More information about AFTD can be found here.