Living Through Windows... Alzheimer's Disease Series

By Mike Bockoven
michael.bockoven@theindependent.com

The Members

"Sometimes they make you feel really good. Sometimes you can see so much of who they were before they came here, you can see how special they were." -- Jessica Whelan, unit clerk

Among the activities planned on the ward, one of the group favorites is the parachute. It goes like this: A large, rainbow-colored parachute is spread out on a table, and members are seated around the edges, their frail and often shaking hands placed on the cloth handles. A ball is placed in the middle, and motion commences.

What's interesting about the parachute is the group dynamic. One moment, the members are struggling to comprehend what's happening. Then, by accident or random acts of motion, the members move in sync, and the ball is thrown upward, powerfully, against the ceiling, making a loud noise and showering small amounts of white debris downward.

The ball then hits the ceiling with more regularity, then with more force. It's as if the members realize the power they have and are trying to tear the ceiling down.

It's not a stretch to say the members on Third Phillips are helpless. Without constant care, leading and attention, injury can be right around the corner.

What's hard to escape, thanks to pictures in rooms and in shadow boxes, is how in control the members were before the disease took over their lives, how powerful, how talented, how needed.

Sometimes it's clear that shadows of who these people were still reside in the halls and rooms of Third Phillips, but the people they were are no longer there. The members themselves are not difficult to deal with, and by the time they hit Third Phillips, many of them are in a fairly docile state most of the time.

However, that doesn't relieve frustration when they're confused, agitated or unable to communicate.

"You take what's going on in their moment, and you deal with it," Watson said. "The frustrating thing, for you and them, is there is no control over this disease. That's really hard for some people to accept."

Alzheimer's disease can come about subtly in a person and can often be hard to detect. It may start when someone asks the same question over and over again, is unable to complete familiar tasks, has problems with abstract thought or has an inability to concentrate.

In the early stages, someone suffering from Alzheimer's can often hide the fact that something is wrong.

Moderate and severe stages of Alzheimer's are a different story.

Moderate stages can find people with Alzheimer's losing their ability to communicate, having hallucinations, taking on habits such as leaving the stove on or acting inappropriately in public.

Those in the final stage have little or no memory, usually cannot communicate or understand communication and lack emotion.

The disease doesn't cause pain like a cancer or a bedsore, said Dr. Ahmed Sadek, a neurologist at the St. Francis Neurology Center. The pain comes when a man living on Third Phillips asks his wife of 50 years where his wife is or when a father accuses his son of stealing from him because of the paranoia that comes with the disease.

Sadek said the afflicted do experience almost paralyzing fear, confusion and mental anguish. There's plenty of pain to go around with Alzheimer's disease. It's just not physical pain.

"After a certain point, you don't have a lot of options," he said. "We try to get a jump really early because there's no way to undo what has been done. After a certain point, it all depends on how you face the disease."

On top of a decrease in cognitive function, problems such as depression can be very common among Alzheimer's patients.

One of the trickier parts of the disease is treating the Alzheimer's but also recognizing other problems such as depression or other types of dementia on top of Alzheimer's. In many cases, a traumatic event such as the loss of a family member or major surgery can move a patient from stage to stage.

Katie Thiele said her mother, Mildred Bauman, known as Middie around the ward, had been "forgetful" for a number of years, but when her father died, her mother's condition worsened almost overnight.

"It was like losing my Mom when my Dad died," she said. "The difference is she's still here. There's no closure in that."

Because of the nature of Alzheimer's, life for those on the ward can vary greatly from day to day, hour to hour, and some "behaviors," as they're referred to, can become problems if not treated properly.

Determination can be strong with many members -- when they're convinced something should happen in a certain way, logic isn't usually employed or accepted when trying to talk them out of it.

For example, Third Phillips is a secure ward, and rather understandably, a member will want to leave. Of course, that causes a problem for caregivers who don't want to agitate the member but, at the same time, want to make sure the person doesn't either escape or create a hazardous situation for others trying to exit or enter the facility.

"It's called exit seeking," Luther said. "It's common. It's why we have a system and why people need to look in before they swing the door open. Some of the members like to lurk around the door, and some will want to leave with you. It's something we deal with almost every day."

The code to punch in on the keypad to exit the floor is actually written near the ceiling directly above the keypad. The disease is such that, even if a member did find it and figure out what it was for, chances are extremely slim that he or she would be able to execute the necessary steps to open the door.

Luther said there are also "busy bee" activities during shift changes, because caregivers throwing on their coats or taking their purses to leave can often set people off. Their actions aren't usually violent or threatening, but if they're already upset or scared, it often makes them more so.

While the ward feeds off whatever emotions are present, to a certain degree, there are members who find their own path in dealing with their fear or confusion. Some wander, some regress, and some find life easier while looking up.

"We've had people who find it easier to be on the floor," Luther said. "That's where they're comfortable, and we're fine with that. There were times when leaving them on the floor wasn't an acceptable thing to do, but as long as it's clean and the member's happy, we let them do what they do."

In fact, as long as the "behavior" isn't causing a problem, chances are good the staff will allow it to continue. If a member is in a wandering stage, where he or she walks the hall for literally days on end, it's OK if someone else ends up in that member's bed. If a member can't find his daughter's number in the phone book because she lives halfway across the country but the search keeps him occupied, they're inclined to let it happen.

That being said, the ward often has a TV on playing an old polka show or something with bright colors that will get the members' attention, if even for a little while. There's also a "busy station" on one wall of the ward with doorknobs, slide locks and other everyday motions that are meant to enhance a member's coordination.

End-of-life issues also play into the equation of life on the ward. Two things that make the most difference in terms of mood on the ward are the introduction of a new member or the absence of a long-standing one.

While names, dates and relationships are long gone for many of the members, a familiarity with the surroundings can result in members knowing who's around them. If member A eats meals with member B for three years and then member B isn't there, it makes a difference.

The effect of a member's death can cause several days of unrest in the ward that manifests itself in many different ways. Watson said it's difficult to know how to deal with a member's death on the ward, but many caregivers make real connections with members. When they die, it's something the administration needs to deal with. They do so with memorial services where staff members go around the room and tell something they appreciated about the member, which usually brings a lot of emotions to the surface.

Families are also included when available, but the reason for the services is for the staff to say goodbye.

"The last couple of years, we've been dealing with more end-of-life issues," she said. "You have to deal with it because the staff grieves like anyone else. Not to deal with it is a mistake, especially with some of the attachments we see around here."

Windows :: Third Floor Phillips :: A Typical Day in an Atypical Place
The Caregivers :: The Members :: The Families :: The Need
Opening the Doors :: Seeing Through Windows