Sunday, April 19, 2015

"Let's Dance" a family's journey with Alzheimer's - By Walter Lunt

Judy Gorman looked deep into her mother’s eyes. There was an expression of vague familiarity mixed with confusion and fear. The elderly lady was afflicted with the most common, and all too familiar form of dementia, Alzheimer’s disease. Nancy Leonard, 82, arrived in Maine during the late fall of 2013 from Florida, where she had lived for ten years. Her light clothing spoke of the warmer clime to which she was accustomed, but she had refused to wear a coat. Her new home was with daughter Judy and her husband Mike Gorman in Gray. Both knew of her illness but welcomed the reunion.

Judy remembered her mother’s arrival with the clarity of a vivid dream. In Florida her mom had been subjected to a double nightmare: While debilitated with Alzheimer’s, a caretaker had assumed control of her finances, including social security benefits and a pension. Further, the caretaker had placed her house under a reverse mortgage. A neighbor of Nancy’s had contacted the family in Maine, who then had to convince Nancy to “go on a vacation in Maine.”

Although one option for the Gorman’s would be to arrange for care in a suitable facility, such as assisted living, both felt that compassion and care would best come from home. 

“Mike and I didn’t really consider any other option,” Judy told the Eagle. With the loss of her mother’s finances, there were still pharmaceutical and medical expenses to cover. Judy would stay in the home to care for her mother. Mike owns and operates Gorman’s Automotive Repair in Windham.

“At first, we envisioned a fresh start for Mom filled with the love and support of her immediate family,” said Judy.

But they were naïve. First, Nancy’s obsession for routine, typical of Alzheimer’s patients, often did not meet the daily living habits of the busy Gorman household. Then came the anger and rebellion. Mealtime became a battle zone. There were loud protests over food choice, resulting in dishes being thrown and demands for a change in menu, including Twinkies for breakfast.

But it was safety that worried family members the most. Nancy would often refuse to use her walker, or a cane. She fell at least twice, fortunately with no serious injuries. Round the clock monitoring became the norm. The house had to be, for lack of a better term, “childproofed.” 

Gates were installed in doorways before bedtime, as Nancy tended to wander in the night, often re-arranging furniture and knick-knacks and turning on lights.

Household items, such as important papers, keys or lotion began to disappear, showing up days or weeks later, usually in Nancy’s bedroom.

And all the while, Nancy insisted on returning to her home, at one point threatening to walk to Florida. “Finally, we had to tell her we were in Florida and that this was her home – we had just painted her walls.” Despite the obvious snow, ice and cold outside, “she bought it,” Judy recalled. “I felt guilty about the lies, but it brought peace to our family, and it made her calm.”

Feeling impatient, even exasperated, the Gorman’s consulted doctors and specialists,…”but really, they don’t know anything either. VNA hospice was our saving grace, along with a number of understanding and helpful friends.”

The hardest part, according to Judy, was watching my mom “travel backwards in time. “… (her) maturity and intellect regressed through middle age and even into her teens, at which time she even started hitting on boys.” 

Nancy was uncomfortable and unsure of her connection with the people she now lived with, and seemed only vaguely aware that she was part of a family. Was she a sister, cousin, the mother or live-in guest? On some level she understood there was special connection. 

One day Judy gave her mother a photo of the family. She had carefully labeled each image with a name. “She carried it with her everywhere,” Judy recalled, “pointing out to herself and to visitors the name of each individual. It was like she was desperately trying to hang on to a reality.”

The days were filled with emotional highs and lows, one minute sad, the next chatty and busy. “There were days,” Judy remembers, “when Mom would almost ‘wake up’ and live in the present, but it would be brief.” The time around late afternoon would often bring on what doctors describe as “sundown 
syndrome,” making Nancy feel depressed and alone. On several occasions she would say she wanted to die and beg Judy to give her a pill. “I won’t tell anyone, I promise, she would say, I just don’t want to be a burden.” Judy responded by changing the subject, and soon the matter was forgotten.

Looking back, Judy describes the whole experience as a “roller coaster ride of emotion. I cried every day.”

And then, a turning point: Judy walked into her living room one afternoon and “there was Mom, dancing.” She was smiling broadly while gyrating to an imagined tune. Upon seeing her daughter, who was staring at her with unbelieving eyes, she exclaimed “Come on, dance with me!”

“I felt silly and tried to avoid the suggestion, but I gave in.” The two partnered up, and in the middle of the room, in the middle of the afternoon, shimmied and shook to a phantom song. “A defining moment,” said Judy, “it finally dawned on me, she’s not going to conform to our world no matter how hard we tried to make her, so we (joined) hers.”

If Mom wanted to go outside to “crunch in the snow,” (Nancy’s term for taking heavy, deliberate steps in the snow), we did. If she wanted a Twinkie for breakfast, we had a Twinkie.” Social rules were abandoned. Judy, who once worried what others thought about her mother’s odd behavior, was no longer concerned about “being judged.”

One night, around 2 a.m., Judy woke to lights and singing. Downstairs, Nancy was again dancing. And again, she invited Judy to join her, “C’mon, let’s dance.” Weary from weeks of caring for her mother, and tired from what had been a long, busy day, Judy fought back the need for sleep, and instead put on a record (perhaps Sinatra – You Make Me Feel So Young).  Nancy loved the big bands and the old standards. In their nightclothes the two danced into the wee hours.

Now the whole family, albeit sometimes reluctantly, joined Mom’s moment-to-moment world, where there were no rules, just joy. “We were all happier,” Judy said. “Not to suggest it was easy, but the rest of the journey filled up with great memories.”  

One occurred on a particularly bright morning when both were out walking after a fresh snowfall. Nancy approached the branch of a tree and stared at it intently. It was heavy with new snow and she implored Judy to “come see the colors.” It was beautiful, Judy recalled, “I hadn’t ever noticed that new, fluffy snow, when the sun hits it just right, lights up in all different colors.” Mom noticed things that others did not.

The beginning of the end came with the diagnosis of a tumor growing remarkably fast in Nancy’s neck. It required daily doses of morphine. The Alzheimer’s had also grown worse. “It got so bad that Mom was forgetting to swallow when she ate. By the grace of God it took her.”

Judy said the experience was harder on her family than on herself. “But you know what? I’d do it again in a minute.”

Today, at this writing, it’s not over for the Gorman’s. There are lingering bills to pay, and a legal battle against the Florida caretaker.

Meanwhile, Mike’s mother has taken ill. The diagnosis, all too common and all too familiar: Alzheimer’s.

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