By Kim Kimzey
SPARTANBURG, S.C. —
Marlu Taylor looks into her husband’s face. His expression has an almost childlike innocence to it. “What did you tell me this morning? You remember?” Marlu asks Buddy.
Buddy tries to remember.
“If you were on an island? Do you remember?” Marlu gently prods.
But he cannot recollect the conversation they had as Marlu drove him to an adult day care.
“One good thing about Alzheimer’s, I can tell him he said anything and that he’s done things, and he doesn’t remember,” she jokes.
They share a laugh.
“You told me this morning that if you could be on an island with anybody, it would be me,” Marlu said.
“Yes,” he replies.
“And I told him that I can’t cook.”
Marlu doesn’t take herself very seriously.
Face-to-face with a disease that has ravaged her best friend and husband, many women might crumble under the gradual loss of the man they first fell in love with.
The Taylors have decided to handle Buddy’s “death sentence” with humor and honesty.
Marlu — who in school never raised her hand in class — has become an advocate for Alzheimer’s awareness.
Marlu and Buddy had been married 13 years when she first noticed signs something was wrong.
Buddy, then a real estate appraiser, owned a business. In an uncharacteristic mistake, he forgot to pay a bill. There were some other errors, too. He had difficulty conversing with her and drove his lawn mower into a ditch.
Marlu suspected Buddy had suffered a mini stroke. At Buddy’s age — then 57 years old — she did not think he would receive the “nasty diagnosis” a neurologist gave him six years ago.
As they left the neurologist’s office, Marlu said she told the receptionist, “They just gave him a death sentence. They just told me has Alzheimer’s. What do we do?”
It took Buddy a year to accept the diagnosis, Marlu said. She immediately set out to take care of financial issues. Buddy’s business was sold. It took two years to sell their home.
The couple now live in a town house. Marlu still works full time. A caregiver stays home with Buddy twice a week. Buddy goes to adult day care three days a week.
Buddy said he and Marlu are a team.
“I believe in honesty,” she said.
That openness builds trust. It makes them feel like a team in grappling with a fatal disease someone in the United States is diagnosed with every 72 seconds, according to a 2007 report from the Alzheimer’s Association.
Buddy has a more advanced case of Alzheimer’s. Marlu said it’s mid-stage.
They’ve discussed end-of-life issues and the possibility Buddy might one day go to a nursing home if she’s unable to provide the care that he needs.
“I like to talk to him about anything that may be coming down the pike,” she said.
She said she assures Buddy she will keep him at home as long as she can. She doesn’t want to admit him to an assisted care facility. It would be the final resort if she’s unable to do any more to help him.
“He needs to feel secure in that I’m just not going to give up on him. I think that’s real important to him,” Marlu said.
She has found ways to keep Buddy active. He did volunteer work until it became increasingly difficult to accomplish certain tasks.
Buddy now paints rocks. He enjoys the activity and it helps with his hand/eye coordination, which has diminished as a result of Alzheimer’s. Buddy gives the rocks away. “We call them his memory rocks,” Marlu said.
Marlu wants to bring awareness to younger caregivers who may work and have other responsibilities, and may need more assistance providing care for loved ones with Alzheimer’s.
“I just want the best I can do for Buddy because I know he would do that for me, and the only way you can get that is to knock on doors and ask a lot of questions, because Alzheimer’s has been such a quiet thing,” Marlu said.
Her love for Buddy keeps her going.
“He still has the sense of humor and the kindness and all that kind of good stuff that he’s always had,” she said.
She said she’s gotten to know him on a different level and is now more wife than caregiver.
“But we love each other … the love is different. It becomes more of respect and preserving dignity, you know. That’s very important to me.”
She is consumed with day-to-day demands and doing the best job she can while they contend with a disease some describe as the “long goodbye.”
“You say goodbye many times. You’re losing that person as you go along. Parts that you used to know are not the same. You don’t communicate the same way,” Marlu said.
Marlu said if one is willing to accept and not be afraid of the diagnosis, it’s not “easy, but it doesn’t have to be terrible.”
Caregivers need to know they’re not alone, she said. Others understand and “can help you through all of this. You don’t just have to do it all alone.”
Joyce Finkle, program director of the Spartanburg Area Office of the state Chapter of the Alzheimer’s Association and Jill Smith, the chapter’s program associate, are often inspired by the level of commitment and love they see caregivers display.
Smith said in her two years with the organization, the couples she has met have overwhelmingly maintained “solid marriages” despite one spouse’s devastating disease.
“I can think of one case where the fiancé walked,” Smith said.
“They just have made a commitment. Love takes work. It’s not always just natural and automatic so you make a choice, you know, to be loving and to hang in there and I think they’ve made those commitments,” Finkle said. “I think humor gets a lot of our people through it. Their spirituality gets a lot of people through it.”
Paul and Mary Ondrus of Spartanburg were teenagers when they met at a streetcar stop near Cleveland.
“Once I met him, I didn’t want to go with anybody else,” Mary said.
“I just looked at him and said ‘you’re mine,’ ” she said.
Now 81 years old, her blue eyes still adoringly gaze at her husband of more than 60 years.
In nicer weather, they walked to high school together. Mary didn’t mind the walk.
“If you had a boyfriend, it was fun,” she said.
Paul dated several girls at the time. He liked to roller skate, but Mary’s father was a protective, strict man who did not allow his daughters to roller skate.
“I would sit at the window and watch him,” Mary said.
Paul and Mary were good friends. They also share a cultural heritage. Both speak the Slovak language. Paul is a first-generation American. Mary was born in former Czechoslovakia.
Paul joined the Navy. Just out of boot camp, he attended church one night and one of Mary’s sisters encouraged him to visit Mary, then working as a record librarian at a hospital.
“I went down there and one thing led to another and that was it,” Paul said.
They wrote each other while Paul served in the military. Love flourished.
They wed and eventually had four sons.
“We’ve learned to give and take,” Paul said.
“She has been tolerant with me and I’m tolerant with her,” he said of their shortcomings.
Paul, a former engineer, is a doer. “I have to keep busy or otherwise I go nuts,” he said.
He’s in his 80s but still takes on home improvement projects.
He laid floors in several rooms of the house and renovated the kitchen.
He cares for Mary, too.
He trims her hair. She cuts his.
During a conversation, Mary lifts her hands and brushes the sparse tuft of hair on his forehead.
“There isn’t a thing that I don’t love about him,” she said.
“She’s a good girl,” Paul said of Mary.
Paul said Mary was diagnosed with dementia about four years ago.
They go for daily walks together. He holds her hand when she gets cold and moves a portable heater close by. He drives her places since she no longer feels comfortable behind the wheel. He brags about what a good pinochle player she was.
They have a lot of fun together. “Like a barrel of monkeys,” Paul said.
He would like to see more funding for Alzheimer’s and dementia research and said there is not enough effort being put into finding answers.
As the search for a cure continues, Paul is resolute that Mary’s place is by his side.
“I wouldn’t give her up,” he declared. Suddenly overcome with emotion, he buried his face in his hands and walked across the room and sat on the couch. Mary rushed to comfort him.
“She was afraid of going to a nursing home. I said ‘there’s no way,’ ” Paul said through tears.
“At a time when people will walk away from a marriage for anything, these people are in it for the long haul,” Smith said. “Any sickness causes trauma in a marriage, you know. But they hate the Alzheimer’s, but they love the person. They love that relationship and have the wonderful memories and they still make good memories.” — AP