This story began over a misunderstanding about a toy. During the run-up to our annual Charity Gift Guide, which we published on Nov. 21, the wish list from Maui Adult Day Care Centers included the curious entry “life size dolls.” Not really sure what the organization meant by that, and having very little knowledge of what MADCC did in any case, I emailed back, asking for clarification.
“[M]aybe make that baby dolls,” MADCC Program Coordinator Kathleen Couch replied. “I was trying to express dolls that fit in the arms of a kupuna to give them the feeling that they are parenting again….not small dolls like Barbies, etc. Guess I did not know how to say it. Sounds kind of bad the way I said it…lol…sorry and thanks for asking.”
But Couch’s answer opened doors I wasn’t ready to walk through. Couch was talking about dementia, about people who were once young but were now old, now slowly losing their mental grasp on their families and own life.
“Dementia is a formidable adversary, and the history of efforts to treat Alzheimer’s has to temper any excitement about potential medicines for frontotemporal disease,” Denise Grady wrote in the May 5, 2012 New York Times story “When Illness Makes a Spouse a Stranger.” “The drugs for Alzheimer’s have been a disappointment, with just temporary effects on symptoms at best.”
To be honest, it wasn’t something I like to think about. Losing not just my faculties but my memories–including those of people I’ve known and loved my whole life, was too horrible to contemplate. The whole thing, which had started out as a humorous curiosity, was suddenly making me sad, which I mentioned to Couch.
“It actually can make one sad if one does not understand dementia,” Couch replied. “With dementia/confusion our kupuna live back in time. The doll represents the child they had years ago and because they live in the past in their mind the doll is very real and honors them as a young parent again. We see a doll… they see their baby and they love it, hold and cuddle it, and they sing and talk to it. We simply ask how their baby is doing and tell them what a wonderful parent they are and they beam with pride. We truthfully and simply are honoring them at the level they are at, going back in time with them, and these dolls make them feel important, needed, and capable again. It really is an amazing and wonderful thing.”
Call me naive, ignorant or simply young, but I had never heard, much less imagined, that a children’s doll could be used in such a manner. So when Couch invited me to visit their center, I jumped at the chance. At about 10am on Nov. 21, I took a tour of their Kahului facility. It was a busy place, with 60 or so seniors (center staff calls them “clients”) spread throughout their main hall as a few nursing assistants moved among them.
Maui Adult Day Care Centers provide just that: day care, except for seniors instead of children. According to Sandy Freeman, the MADCC Executive Director, 95 percent of their clients have some form of dementia. MADCC exists, she told me, to give “caregivers”–family members and friends tasked with meeting the senior’s basic needs–time off from having to constantly render care, which can be physically and emotionally exhausting, to work or just relax.
“They can go to work with peace of mind,” Freeman said. “As a caregiver, it was a lifesaver.”
MADCC has been around for 38 years, and there are five facilities throughout Maui, each equipped with a nurse and numerous staffers. According to JoAnn Ridao, director of the County of Maui’s Department of Housing and Human Concerns.
“It provides for families that are working families,” said Ridao. “And it provides for the socialization of seniors, taking them out of isolation. They’re trying to keep our seniors as independent as possible, for as long as possible.”
The center is also apparently cost-effective. Dropping off a senior there costs $49 per day, which Couch said pales before the costs associated with longer-term care.
“It costs $14-40 an hour for a private caregiver at home,” Couch said as she began walking me through the center. “And assisted living homes cost $3,000 to $5,000 a month.”
Perhaps thinking of our earlier email exchange on MADCC’s need for more dolls, Couch then walked me over to some tables where a variety of seniors sat reading, completing puzzles or just relaxing. A few are cradling dolls. One older Asian man is bouncing the doll on his knee. Another Asian woman was cradling a doll in one arm as though it was an actual baby and turning the pages of a magazine with her other hand.
“She spoke fluent English,” Couch told me, “but then one day she started speaking Japanese. Japanese was her first language. But we have a feeling she still understands us because she laughs at things we say.”
Nearby, another client began singing “You are my sunshine.” As she did, another client nearby, who was busy with a coloring book, began singing, too.
“I used to sing in clubs,” she told me after she was done. “But that’s ALL I did.”
Of course, not all of MADCC’s clients have dementia.
“I think it’s a good place,” one woman who said she’s been going to the center for about two years told me. “I think it’s a safe place. They keep a very close eye on people here and supplies them with lots of things to do.”
Indeed, this particular client seemed so coherent that I asked her what she did for a living when she was younger. “I was a house painter in Chicago,” she said. “I painted inside and outside of houses using ladders. My boyfriend had his own company, and I worked for him. I liked climbing full ladders, and was never scared. [Now] my daughter and her husband and three grandchildren live here, and I live with them.”
Near the far wall of the center, the whole mood of the place changed. Though some teens strummed ukuleles on a television screen, this part of the center was much quieter. Here, Couch explained, was where those clients who needed a great deal more care than the others. As staffers wheeled a woman named K– (many families requested that their loved ones’ names not appear in this article) into place, another woman named S– sat beside the woman and talked to her.
“S– was best friends with K–,” Couch told me. “K– was like her, but now she’s declined to the point that she can’t walk, talk or feed herself. S– will go and talk and talk.”
As we walked slowly around the room, Couch continued. “They’re at level where families know they can’t be home alone,” she said. “We give them independence, but make sure their needs are met. We have entertainment that comes in throughout the week. We’re in it to help them survive, and help their caregivers survive.”
Now headed back to the front of the center’s main hall, Couch pointed out a young man in blue scrubs who was working on a puzzle near clients several generations removed from him. He was autistic, Couch said, who busied himself during the day as a kind of volunteer staffer.
“He felt it was necessary for him to look like a CNA, so he got the scrubs himself,” Couch said.
Near the end of my visit, Couch introduced me to Arthur, an old Asian gentleman. When I came by, he was playing Hanafuda with his brother. After Arthur shook my hand, Couch told me that he had been a ballroom dancer, and in afternoons would sing karaoke and dance. She also told me that though Arthur’s very close to his brother, and often plays cards with him, he doesn’t remember that his brother is actually his brother.
“That can be heartbreaking for loved ones,” Couch said after we’d walked by. “We tell them the important thing is what THEY remember. Keep in mind that our youth are watching us. They will be our caregivers one day. It makes them try even harder to do the best they can.”