Living Through Windows... Alzheimer's Disease Series

By Mike Bockoven
michael.bockoven@theindependent.com

The Familes

"It was hard enough losing her once. I don't know what it will be like to lose her again." -- Katie Thiele, daughter of Mildred Bauman, Third Phillips resident

Throughout Joann Laue's life, she could depend on her brother Art Janousek to do two things: Fix what needed to be fixed and make some of her friends a little nervous.

A former Navy man, Janousek took up bodybuilding during the middle of his life, rode motorcycles, wore his hair long and tended to wear leather vests when he would roar into the parking lot to pick up his sister at her office for a lunch date.

"They would ask, 'Who is that mountain man outside?'" Laue said. "I would say, 'That's my brother.'"

The former gentle giant, whose hugs always made his little sister feel safe, is now hovering somewhere around 100 pounds. So much has changed in such a short time with Art, but Joann visits him whenever she can. When she does, there are occasional flashes of things she recognizes.

"He still has strong hands," she said. "When we walk in the hallway, I have to pry his hand away from mine. His hands are still strong."

Laue's experience isn't entirely uncommon.

The changes that happen when a loved one gets Alzheimer's disease are dramatic, from appearance to inability to recognize those who shared their lives for years and years. It's not a cross anyone wants to bear, but talking to the families on Third Floor Phillips, it's clear the ways they deal with the disease are as varied as the stories they tell about their loved ones.

Once taken to live on Third Phillips, some people visit two or three times a day. Jill Strong visits her father, Dean Gracy, often, though she said some members of her family have never visited, preferring to remember their father "as he was."

Both are normal reactions, Luther said. A lot of people feel overwhelmed when they're first told someone they love has something as devastating as Alzheimer's disease.

Luther said, in her mind, it's taken the place of cancer, a disease that was once a death sentence and a word that once struck fear in the hearts of patients.

"Alzheimer's is the 'Big A,'" she said. "It's a terrifying diagnosis."

Theresa Jorgensen, a nurse at St. Francis Memorial Health Center's skilled nursing ward, is the woman who more often than not breaks the diagnosis to families. She said falls, burns or other household accidents are the biggest reason someone with Alzheimer's would come up to skilled care, but the family is often unaware or unwilling to accept what is happening.

After they treat the initial problem, Jorgensen said, loved ones' reactions can vary, but by and large, they follow a pattern.

"They go through denial. Almost everyone does," Jorgensen said. "It's how fast they get to acceptance that's important. When they finally admit that it's Alzheimer's, it can be a huge relief. A lot of families have seen this coming for a long time and just don't want to deal with it, and when they do, it's like they don't have to hide it anymore."

One side effect of being involved in the care of a loved one with Alzheimer's is the connection that can be forged with caregivers. That's what happened to Ellen Wehrhan, whose husband, Harold, died on the ward in September.

Up through the holiday season of 2004, she was still keeping in touch with caregivers with whom she'd shared the ups and downs of Harold's care, his continued love of ice cream, his pain management when he was diagnosed with prostate cancer and from whom she heard of his death.

The ordeal of initially parting with Harold was consuming, Wehrhan said, and she was able to take solace in the fact that she wasn't "giving" her husband to people who weren't going to learn his name.

"When you turn over your husband of 61 years, it's tough," she said. "It didn't take me long to feel comfortable. There was always a hug for me. There was always love for me."

Judy Vergita, a nurse on Third Phillips who worked closely with Wehrhan, said it's almost hard not to forge bonds, especially when the family is actively involved in care decisions and visits frequently. Sometimes the bond can be as simple as being concerned about the same person.

"You almost get to be a family around here," Vergita said. "This is such a hard thing to deal with. I think that makes it easy for people to connect."

On Third Phillips, families are involved in "care planning meetings" once every couple of months, depending on the member's situation. The decisions can sometimes be hard and are often more about the member's quality of life than what people in other situations might consider vital health care.

Thiele, for example, made the decision to pull all her mother's teeth because she wasn't able to care for them and they were causing her a great deal of pain. She received a lot of strange looks and comments when they brought her to the dentist and Thiele revealed they would not be coming back for a set of dentures after the teeth were pulled.

These decisions are never easy, but information is the key to making a choice appropriate for the situation, Luther said. Watson said some families are resolute in their ideas on how to care for their loved ones, which is their prerogative, but it is important to know as much as you can before making a crucial decision about the care of a loved one.

What helps most of the time is for families to come to the ward and see the lives their loved ones have settled into. Sometimes it's surprising, Watson said, as what they thought would be big issues in care turn out to be passing, and other issues then take center stage. What they see can surprise them, although there are any number of philosophies when it comes to caring for Alzheimer's patients.

The veterans home tries to keep in mind the comfort of the patients along with working to stimulate them through activity.

Still, it can be very difficult for families to talk in the abstract about loved ones, and when it comes to crucial care decisions such as do-not-resuscitate orders or how to handle patients who refuse to eat, it can be the hardest moments for families and caregivers on the floor.

It's not unprofessional to embrace how difficult these decisions are if it will help a family get through them, Luther said. While it's hard for families to detach themselves, it's also hard for caregivers not to get emotional, even though whatever decision is made will be carried out in a professional manner.

"It's harder for the families. You just want to cry with them," Luther said. "Sometimes we do. We're human beings."

Oftentimes, families bond with each other as well. Children on the ward are often known from table to table if families are present, and some have met sporadically over the years at functions such as Christmas gatherings or February's Candlelight Dinner, where families are invited to have a formal meal with the members.

Georgene Sitzman, whose husband, Kenneth, came to the ward after a heart attack exacerbated his mental condition, said she's seen a lot of family members dealing with the same issues she has.

It's not a situation where they sit and compare notes, but it's not often that a roomful of people so perfectly understand each other.

Sitzman drives from Lincoln several times a week to be with her husband, and the drive has quickly become a pleasure. Given how hard it is to watch someone you've loved for so long go through something so terrible, she said, she likes having the time to think about what was, what is and what will eventually be.

"When I first came up here, it's like all the members were lost souls looking for something," Sitzman said. "It struck me how sad that was. It's really hard when you don't know what's going to happen when you leave. I wish we didn't have to go through this."

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