Hospice Volunteer Uses Training to Connect with Alzheimer’s Patient
There’s a whole lot of love packed into the Wheatley House on this bright summer day. More than 20 relatives of Alzheimer’s patient Erika Duarte have gathered at the Country Cottages assisted-living facility in Vacaville to pay tribute to her. The guest of honor—nattily attired in her favorite color of a brown silk skirt and blouse that matches her flowing auburn hair—is hunkered in her wheelchair, silently whirling around the hardwood floors.
“She really loves to move,” says Carmen Duarte as she watches her 88-year-old mother being pushed by family members lap after lap around the small room.
Elise, who had been trained in how to interact with Alzheimer’s patients, figured that she might have an “in” with Erika that others didn’t: Both women spent their childhoods in Germany.
Propped nearby on an easel is a board studded with photos of a vibrant, vivacious Erika in her younger years—a mother of six who loved to read, tend to her garden and take long road trips. There are images of her celebrating Cng. And dancing. Enjoying all hristmas with her family. And swimmithat life has to offer.
“She was quite a beauty,” remarks Linda Pribble, gazing at the photos. Linda, the volunteer coordinator for NorthBay Hospice & Bereavement, has organized this gathering, paid for by NorthBay’s Dream of a Lifetime program. “It’s all about making connections and memories,” she says.
When Erika finally gives her wheels a rest, Elise Wigton, a hospice volunteer, crouches down and comes face-to-face with her. Speaking German, Elise tells Erika that she looks beautiful and that her family has come to celebrate with her.
Erika leans closer and gently taps her head against her friend’s. “That,” explains Elise, “is her way of saying, ‘I understand.'”
That Erika could understand and connect with Elise on a certain level was a major breakthrough.
Before her first meeting with Erika weeks earlier, Elise was told that the patient was uncommunicative and didn’t like to be touched. Moreover, she occasionally threw objects playfully or in anger, as her way of connecting. The prospects of a productive encounter seemed dismal.
But Elise, who had been trained in how to interact with Alzheimer’s patients by Sandy Perez, manager of the NorthBay Adult Day Center, figured that she might have an “in” with Erika that others didn’t: Both women spent their childhoods in Germany. “I decided that I was just going to speak in German,” recalls Elise, who brought along a small teddy bear to that first meeting.
Elise introduced herself and, stunningly, Erika repeated her name back to her. Elise then presented the bear to Erika, thinking that the patient might throw it back at her. Instead, Erika placed the bear on her bed railing and gently stroked it.
“I thought: ‘Wow, this is really cool,'” says Elise, who referred to it as a “God-wink moment.”
It got even better. Elise told Erika that she was from Stuttgart and asked Erika where she was from. Without hesitation, Erika, who was only 14 when World War II broke out, replied, “Berlin.”
The two women talked some more in German and moments later, Erika placed her hand on Elise’s cheek. Then she tenderly took Elise’s hand and placed it on her cheek.
Another God-wink moment.
For her second visit, the NorthBay volunteer brought along a book of German children’s songs. When Elise began softly singing, the “uncommunicative” patient happily joined in while holding Elise’s hand the entire time. Later, Elise, an avid knitter, presented her new friend with what she calls a “twiddle” blanket.
“She touched and played with it the whole time I was there,” Elise says. “That was awesome.”
Sandy beams with pride as Elise tells her success story. “Elise did everything she’s supposed to do,” she says. “She made a safe environment. She reached (Erika) where she’s living. That’s exactly what we want to do.”
As for the foreign language interplay, Sandy explains that most Alzheimer’s patients live in their “mind’s eye,” and not necessarily in the environment around them.
“I’ve learned over the years, that, as people progress with the disease, they actually go backward in time,” she says. “… In many cases, they start living as younger.” Hence, Erika has reverted to her childhood language.
“We need to appreciate Alzheimer patients where they’re living and treat them in that time frame. It works out a lot better,” says Sandy, who points out that Erika’s penchant for tossing objects most likely was borne of frustrations over her inability to communicate with those speaking English.
Family members are frustrated because their loved one has ceased being the person they’ve known their whole life.
Sandy has witnessed a great deal of frustration during her 35 years in the field. Alzheimer’s patients are frustrated, and frightened, she says, because they are losing their memory, a huge part of who they are. Family members are frustrated because their loved one has ceased being the person they’ve known their whole life.
“I always tell them, ‘You have to be the one to change, because they can’t,” Sandy says. “This disease is taking over and there’s nothing they can do about it. …And no (patient) is the same. Our memories, our journey in life, everything we store in our brain, is unique to us. And the disease is unique in that we don’t really know what memories are going to be lost. So we have to treat them as an individual—a human being—with respect and dignity.”
According to Linda, hospice-care workers have seen a substantial increase of dementia-Alzheimer’s patients in recent years. This dismaying trend prompted her to enlist Sandy to help instruct NorthBay hospice volunteers such as Elise in how to more effectively connect with these patients.
“It just helps us do such a better job,” says Linda, who points out that the bond formed between Elise and Erika is “a wonderful story” that demonstrates how connecting across disciplines at NorthBay ultimately comes down to “providing beautiful care for our patients and our community.”
“This makes me very happy,” she says, “I think this is what hospice volunteering is all about.”
At the Wheatley House party, a Marzipan cake is being divided among family members. Carmen tenderly spoons some of it into her mother’s mouth. Moments later, Erika surprises everyone by grabbing the bowl and spoon and helping herself. Later, everyone gathers behind and alongside Erika to pose for a great big group picture. There are smiles all around.
Says Linda, “As Erika’s memory gets more tired, we will create new memories through photos and video as a gift for her family to treasure.”
Carmen admits that it’s extremely difficult to see her mother, who was once so active and energetic, unable to take care of herself. And she bemoans the fact that, on many days, Erika is largely unresponsive. But, for a few hours at least, there are encouraging signs. “Today,” she says, “is a good day for her.”
One week after her party, Erika suffered a stroke. She passed away two weeks later, on Sept. 9.
Her family has expressed gratitude that Dream of a Lifetime created an opportunity for the family to celebrate her life before she passed away.
Dream of a Lifetime
NorthBay Hospice & Bereavement’s Dream of a Lifetime program is one of the few in the nation that make dreams come true for adult patients in hospice. Donations can be made to NorthBay Healthcare Foundation, in care of Dream of a Lifetime, to support future dreams for Solano County residents served by NorthBay Hospice. For more information, visit www.northbay.org/Dreamofalifetime.