Living Through Windows... Alzheimer's Disease Series

By Mike Bockoven
michael.bockoven@theindependent.com

A typical day in an atypical place

"You can watch and you can just tell something's different. They'll really study something or really pay attention to something, and before you know it, they're talking to someone and it's like the disease isn't even there. It can just knock you over when it happens." -- Wilma Luther, activities director

Most events on Third Phillips center around meals, which are oftentimes Herculean feats of organization and multitasking. As the disease affects members differently, some will stay put for hours when you tie a bib around their neck and prepare to serve them. Others wouldn't stay still for all the corn in Nebraska.

Mealtime or directly after is also when family members usually visit. Sitting with someone and sharing a meal not only gives the family sort of an update on their loved one's condition but also helps make clear the transition from who the person was before the disease to who that person is now.

For many, that's the hardest part of the disease -- losing someone before he or she actually dies. It's not uncommon to overhear friendly conversations in the ward ended by "I'm your son" or "I'm your wife."

Watson said it's something some family members never really come to accept.

"It's hard, and everyone knows it's hard for families to deal with," she said. "It breaks your heart sometimes, and you can help them, but sometimes you need to let them deal with it themselves."

Ellen Wehrhan found comfort in the staff at the veterans home, which also isn't uncommon. Even though her husband is gone, she's made several trips to the ward to thank the staff for helping her get through her husband's illness but also to share with others what her situation was like.

"One of the hardest things is you don't know how much he absorbs," said Wehrhan, who visited her husband, Harold, on the ward frequently before he died of prostate cancer in 2004. "I wasn't his wife anymore. I was someone he was comfortable with. That's hard to accept when you've been with a person for so long."

While mealtime is often family time, medications usually go with food also. Sometimes taking the meds is a process that can go on for hours. Some members on the ward have many medications to take and not a lot of motivation to take them, so nurses usually mix the meds in something like pudding or ice cream to make the medicine go down. Battles over taking medications can be among the biggest battles waged on the ward.

"The 8 o'clock meds become the 11 o'clock meds pretty easy," Brooks said. "Sometimes it's very easy, and sometimes, no matter what you do, you're going to have a problem. It depends on the day."

On one occasion this winter, Brooks and Phyllis Seifert, a member on the unit, had a polite yet intractable situation concerning medications. Brooks needed to give Seifert her medicine, which the patient didn't want to take. They would sit, talk about it for several minutes, Seifert would get up and go to another part of the wing, Brooks would follow, and they would start the process over again.

In a situation such as that, Brooks said, it's valuable to engage the member and not employ logic but rather empathy to get the job done.

It's also important to pay attention to what a member is saying, she said, as the person could be complaining of something seriously wrong but not be able to communicate it directly.

"You have to do a lot of listening," she said while still holding the cup of medicine. "They tell you what they need, but they do it in their own way. Sometimes you have to get the information you need in a roundabout way to make it work."

With the exception of the variety of activities offered by the ward, the rest of life on Third Phillips consists of dealing with however Alzheimer's or dementia manifests itself in the individual.

In some stages, exhaustion is a big part of life, so resting and sleeping dominate the day. In other stages, wandering around the hall is something the members feel compelled to do -- and can do for days at a time without sleep.

In some stages, there's a phenomenon called regression, in which a member feels he or she is living in a past part of his or her life. Regression can make someone think he is still in the armed forces, still working at a job or still a babe in his mother's arms. Some feel they need to get to work or do the books. Others sit and talk of family members who are on their way to get them.

In the final stages, there's a lot of sitting, staring and sleeping. Alzheimer's disease can also radically change a person's personality. Roger Keeley, for example, is highly sociable despite the disease and can be seen daily pointing at staff and flirting with female nurses.

Luella Hinrichs, who has been on the ward for years, is still very sweet and polite, inquisitive and even sunny despite not being able to get around.

The idiosyncrasies and attitudes a person with Alzheimer's develops often can mystify a family, and Hamm said it's vital to get across the idea that what families see when they visit is the disease, not any conscious decision on the part of their loved one. It can be a hard sell when someone is pleasant one moment and abrasive and vulgar the next.

"I cannot reinforce how important the family is," Watson said. "The residents feel comfortable around certain people, but it is important for families to come and see how their loved one is being cared for."

While Alzheimer's disease is the most prevalent form of dementia, other forms are also represented on the ward, but the difference in symptoms and how they are treated in terms of physical care is negligible. There is a difference in medical or chemical treatment between the diseases.

To help the family understand what's happening and to honor what happened in the past, each room has a "shadow box" outside the door frame, filled with mementos, pictures, knickknacks and representations of the member's life and what filled it. Family photos are common, but some of the displays are quite stirring, depicting the member in the glory of youth or revealing a highly intricate job or hobby the person did for many years before arriving at the home.

There are Husker memorabilia, toy cars denoting a former car fan, fishing tackle, tiny baking pans and other representations of lives that were. Sometimes, when a member passes away, what is represented in the shadow box can help staff cope with the loss.

When Leonard Warnick, a member on the ward, passed away in early March, for example, the memorial for the staff included a rose to mark his passing and a Nebraska Cornhuskers cap placed on his bed. It was a piece of apparel he was virtually never seen without.

Inside the rooms, it can be the same story. Some rooms have elaborate decorations, pictures of extended families in special frames, posters of different scenes, stuffed animals or homemade quilts or blankets.

Others are sparse, nothing more than a bed and a blanket.

In some cases, that can be smart, as personal possessions hold little value for the member. A confused patient may also wander off with something not belonging to him or her or end up in the wrong part of the wing if staff isn't careful.

Many times, when a member happens to fall asleep, where he falls is where he stays until he wakes up.

"We have to watch them, because it's not uncommon for one person to end up in another person's bed," Brooks said. "Sometimes things disappear and reappear later."

The members get more active, and some use the adjective "antsy," when the sun goes down, a phenomenon known as "sundowning."

It's sporadic, and some days are better than others, but if there are times when the entire ward seems as if something urgent is happening, it's usually around dusk.

Knowing this and dealing with it through activities and supervision can help, but Luther said "mood" can play a big part.

"Sometimes, someone's in a mood, and there's not much you can do," she said. "That's what it boils down to now and again."

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