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Living Through Windows…

Alzheimer's Disease

The Alzheimer’s Series

By Mike Bockoven

“I forgot to tell her I love her.”

index1There’s no way to tell if it was the snow on the ground 30 feet below, the slight whiff of spice in the air or the Christmas carols that had been playing all day. Whatever the series of triggers, long-dead synapses fired, signals were sent from the brain to the mouth, and Kenneth Sitzman remembered something very important he had neglected to do.

“I forgot to tell her I love her.”

Just minutes before, Kenneth’s wife, Georgene, had been on the floor at Third Phillips, the section of the Grand Island Veterans Home that houses members with Alzheimer’s disease and dementia. Before leaving, as is customary with the couple, she asked if he loved her.

Like so many others on the ward, Kenneth stared, lost in a disease that had robbed the former Army medic and Korean War veteran of his very identity, his ability to care for himself, his ability to acknowledge that he loved his wife of 49 years. In the year he had been on the ward, he had hardly spoken. More likely than not, he would sit quietly in a chair, doze in the day room or wander the halls like a soldier without orders, like a hero who had forgotten his deeds.

But on this day, Kenneth, whom his wife describes as “still a good kisser,” spoke to nurses about his wife, about his family, about his life. He spoke like a man on the clock, like a man who had to unburden his soul on a deadline.

It’s rare that a member on the ward would remember anything, much less something as important as acknowledging love, but Vicki Brooks, head nurse on the ward, has seen it happen.

Every now and then, members who live on the ward will give caregivers a glimpse into their lives, into who they were before the disease stripped them of their future and their history. It may be brief, but Brooks, who has worked on the wing as a registered nurse for three years, has a name for the sudden, unexplained bursts of lucidity among patients who are normally docile, confused or occasionally agitated.

She calls it a “window.”

“It’s amazing when it happens,” Brooks said. “It’s rare. Some people might never have one, but when they do, it’s such an amazing thing. It’s hard to describe.”

There is some professional debate as to the existence of these moments of cognitive clarity related to one of the most frightening and most misunderstood illnesses, a disease that currently affects as many as 4 million Americans. The disease, which causes the death of neurons through tangled bundles of fibers and plaque in the brain that result in loss of memory, ability and eventually independence, is predictable in some ways. It comes in stages, progressively getting worse, and will play a part in the death of whoever is diagnosed.

In other ways, it’s a highly individual disease, affecting both members and families in radically different ways.

On Third Phillips, they see it all. They see the family members who visit daily just to be with their loved ones and those who have trouble accepting what the disease has done to those with whom they’ve shared their lives.

index2They see the heartbreak of losing a loved one yet still having that person alive and virtually helpless and in need of constant care. They see those who try to bring back the person they loved — and the frustration and tears that come with it. They see the rage from both members and families that a disease could rob them of something as fundamental as an identity or something as rudimentary as an understanding of who they are.

But they also see humanity manifest itself through the disease. They see people who may not know what’s happening work hard to be polite and accommodating. They see attachments made to caregivers and personality traits that help define a person in the final stages of life. They even see joy on occasion, and in even rarer instances, a sliver of who their patient used to be shines through.

On occasion, they get a window.

Wilma Luther, activities director at Third Phillips, who saw her father wither under the disease, said that window is sometimes what keeps employees in the wing going during particularly hard times. It’s a profession that takes a lot of patience and understanding, and with all the rumors and misconceptions about the disease, it’s easy to see why Alzheimer’s is so terrifying to families as they first deal with it.

“The word ‘Alzheimer’s’ scares the living crap out of people,” Luther said. “It’s something where I’ve seen families totally devastated when they hear that word. Information is so important because it’s harder on the families than it is on the patients.”

Luther, Unit Director Deb Watson and others at the Grand Island Veterans Home opened the doors of Third Floor Phillips to The Independent for precisely that reason: to pass on information.

With Alzheimer’s affecting so many patients and families, not just in Central Nebraska but around the country, they felt giving the public an idea of what life is like on the ward would open some eyes and hearts to the victims of the disease.

It’s a chance for them to give the community a window into their world, as they search for those special windows into the lives of their patients.