Living Through Windows... Alzheimer's Disease Series

By Mike Bockoven
michael.bockoven@theindependent.com

The Caregivers

"You don't remember the bad days. You remember the little miracles, the windows, the amazing things that happen. I hope I give them the same care someone would give my father if he was here. I hope they can feel, in some way, that sense of love." -- Tasha Hamm

Jolene Clark has fun with some of the members on Third Phillips, and some of the members visibly enjoy her company. Others couldn't care less that she's around. During mealtime, those relationships only intensify.

"Some take five minutes; others take 45," Clark said. "Sometimes you just have to let them get there when they get there."

Patience has already been mentioned as a powerful ally to those who work in the ward, but flexibility, malleability, the ability to roll with the punches are what make or break the caregivers who deal with Alzheimer's.

For every employee who's come up three floors, learned the idiosyncratic routine of the members and found a niche in the caregiving community, there is another equally enthusiastic caregiver who throws in the towel after a short time, unable to deal with the ward.

Staffing the ward isn't a major problem, as those who find the style of caregiving appealing tend to stay on the ward for a few years at least. That still doesn't make it easier for some people to get beyond the stigma that lies beyond the main door leading into the ward.

"When they first told me I was going to the Alzheimer's ward, I was like, 'Ummm,'" Chad Conklin said. "It was kind of daunting. It's daunting for everyone, I think. It's not for everyone, but it's not too bad once you figure it out. Just that first couple times you don't know what to expect."

The ward is a hard place to "figure out" for some. Pretty much every employee has a story about when things either went haywire or something unexpected threw the whole day into the great unknown. Some try their best but end up leaving the ward. Others thrive on it.

For Watson, the unpredictability does more than keep work and life interesting. It's endearing for her to know that, no matter how hard she works or how well she thinks she knows the ward, it is always a heartbeat away from something new.

"Since I've come up here, I look at nursing in a whole different way," Watson said. "I learn every day. About the time you think you have everything you need and you know what's going to happen, they'll teach you something new."

There are few certainties of the ward, and what you can count on is often unpleasant to think about. It is certain that every member is going to degenerate, every member is going to have bad days and good, and every member is going to die in the employees' care.

Luther, who has worked at the veterans home for 25 years but has been on Third Phillips since the late 1990s, remembers one moment in particular when an end-of-life issue gave her a perspective on life that she had lost sight of.

When it was clear one of the members only had a short time left to live, Dorothy Rall, a member on the ward, had a window that touched Luther to her very core.

"She patted his hand and said, 'It's OK. You'll be with Jesus soon,'" she said. "I was so focused on when the end was coming and what I could do, I forgot it was out of my hands."

In the ward, the members feed off emotion. When one member has a problem, becomes agitated, yells, shoves or causes a disturbance, the effect can be seen in many members almost like ripples in a pond.

Luther said there are some members who will mirror their surroundings. If a member in a foul mood comes across a gaggle of giggling nurses, it won't be long before that member has a smile on his or her face as well.

The same goes with employees. If someone comes to work upset over something that happened outside the walls of the ward, it makes more of a difference than possibly any other job in the health care industry.

"We don't get uptight because the members feed on our emotions," Luther said. "All we do if we come to work unhappy is setting ourselves up for failure."

That goes not just for those giving care but for those who clean, those who cook and serve food and anyone who comes onto the ward. It's the same with those who work the service jobs -- some enjoy it; some do not.

Barb Rhoad and Barb Nielsen, both of whom are on the janitorial staff at the veterans home, count Third Phillips as one of their favorite places in the entire facility. The sense of impact they have on the ward is the reason, though the people, both members and employees, have a different flavor than other wards.

"I just love the Alzheimer's people," Rhoad said. "To me, they're my family. To brighten their day a little bit means everything to me."

Nielsen, whose aunt was recently diagnosed with the disease, is learning as much about it as she can and feels pretty much the same way. They not only get to help out on occasion, but it's a situation where they can get more involved. Also, as a woman with a "mother hen" personality, Nielsen said, it's nice to feel needed when they come to work.

"Each person has their own thing," she said. "We try to learn a little bit about each member. If we see something happening, we'll help. They need us more than the other ones."

The attitudes of the employees can also bring about a few light comedic moments with the members.

Kenneth Sitzman, who gave employees a window into his soul one day, once started making a strange sound with his mouth and mystified the employees for several hours. When they figured out Kenny was feeling playful, they all had a good laugh.

Sometimes, employees can also bring about a different side of a member, even to the point of lucidity.

Jessica Whelan said she once brought her 9-year-old daughter to the ward, and the site of the child caused Mildred "Middie" Bauman, who is in the end stages of the disease and has limited verbal ability, to begin talking about her life on the ward. While her daughter didn't completely understand what was happening at the time, it was something Whelan said she'd remember for the rest of her life, especially considering what Bauman said.

"She started talking and said, 'This is where I live. I sleep here. This is what I used to do,' and it was just as clear as day," Whelan said. "I learned working here that there's so much more to a person than that blank stare you see a lot. After four years, every day I learn something else."

Whelan, who works behind a desk and only occasionally gets on the floor, said she admires those who do the hands-on work with the members because their work is always professional and caring.

Part of that has to do with the rules on the ward. Members are never pulled or pushed or goaded into an activity, even if it's something important such as using the bathroom or being moved from a restricted location.

It's all part of the training those who work on the ward receive. It's goes beyond being kind to someone to a point where they are listening to members in different ways.

Communication is another key to making life on the ward as good as it can be for people who are perpetually confused, uncomfortable and sick. It's a special kind of caring that many are proud to provide.

"A lot of times, what happens is the members feel they need to communicate with somebody and they don't know how to do it," Watson said. "They do it in a thousand different ways. If you're a real structured person, it might not work."

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