When Alzheimer’s strikes

Clara-Joyce Olds was mourning the death of her father from early-onset Alzheimer’s disease in 1996, after having cared for him during his last days. "If I ever get this disease," she told her husband Mark, "I want you to put me in a home. I don’t want to be a burden to you."

He responded without hesitation, "No, I’m not going to do that. I’m going to take care of you."

Nine years later, when his vivacious, 56-year-old wife began her own steady decline into Alzheimer’s, Mark struggled to give Clara a life of dignity and love in the familiar comfort of their Kailua home. The choice wasn’t easy. There was no how-to manual on coping with the demands of caring for someone with this rare, irreversible disease. He had no friends who had faced anything similar. A Vietnam veteran and electrical foreman, he felt blindsided by an "enemy" that was both invisible and inexorable. But learning to care for Clara through the final stages of her life became a calling for Mark — a way to honor their 30 years of marriage, and a way to let his wife know he loved her to the end.

The Olds’ home sits on a corner lot in Kailua, a block from the beach, with a front yard framed by shower trees. The living room of their single-story, 1950s-era home is filled with floral arrangements from Clara’s funeral, held several days earlier on July 29, 2013. Family photos hang from the walls, among them a maile lei-draped picture of Clara and Mark laughing, holding onto one another.

"We were always holding hands," Mark says, recounting how the couple met in 1978, each recovering from failed first marriages.

At 32, he was a rugged HECO foreman, a Kailua High School graduate who jokes that he went to school "only for lunch and for the girls." Clara, 29, was a beautiful and effervescent single mom with two young children, working for Braniff Airlines. They were a study in contrasts: She loved to talk and share her thoughts, he was a man of few words; she spoke perfect English, he talked pidgin. And there was another darker difference: He was an alcoholic.

During their courtship, Mark admits he’d get drunk at parties then insist on driving. His heavy drinking continued even as the couple welcomed the birth of their first child in 1980.

One evening, Mark came home wildly drunk, stumbled across the doorstep, demanding to hold their baby. Clara quickly woke the children, placed the infant in their arms and ordered them to hide in the backyard. She’d finally had enough, and told Mark she was leaving with the kids. That week, he attended his first Alcoholics Anonymous meeting and has been sober since. "Clara saved my life," he says.

The couple married in 1983, moved into their Kailua home and raised their family, which grew to include a son. Clara blossomed as a mother, and became an active community volunteer, heading Save Our Bays and Beaches, which rallied to preserve the water quality of Hawaii’s beaches and streams. In 1992, she made a brief foray into local politics and managed Mike Wilson’s campaign for Honolulu mayor. But her heart was in serving the Kailua community and she turned to teaching special-education classes at Kalaheo High School.

The first signs of the disease appeared in 2005, when Clara was 56. The changes were subtle: A missing verb in her sentences, a hesitation in her speech, a blank look in her eyes as she struggled to retrieve words. "She was having a tough time talking," Mark admits, but he brushed it off because everything else seemed normal: "She was doing crossword puzzles, she was reading the newspaper, she was making coffee."

That fall, Clara told Mark her students had begun to ask "why can’t Mrs. Olds finish her sentences?" He realized she needed help. After a battery of neurological tests, doctors thought she was suffering from primary progressive aphasia, a speech impairment, and prescribed speech therapy.

"No one thought it was Alzheimer’s because speech is usually one of the last things to go," Mark says, explaining the disease’s progression to the seventh, final stage, characterized by loss of speech, mobility and the ability to sit up.

But Clara’s condition worsened. A year and a half later, the fourth neurologist they’d consulted ordered an MRI. The resulting images were searing. The scans showed an area of Clara’s left frontal lobe, a part of the brain associated with language formation, was almost completely gray, evidence the tissues in that area were dead.

Mark and Clara sat with their children in the doctor’s office, listening to the neurologist explain that Clara had early-onset Alzheimer’s, the same genetically inherited disease that had killed her father and paternal grandfather. While she was at the initial stages, the doctor added, the disease was incurable.

The family was stunned. Mark recalls that "Clara smiled — she understood. But me, I was hurt and the kids were really sad. I didn’t really know what Alzheimer’s was then." After taking classes at the Alzheimer’s Association Aloha Chapter, however, he saw what lay ahead.

By 2007, Clara lost her speech, and required more assistance. Mark, now retired, provided round-the-clock care as best he could. "I learned on the job. I didn’t know how to feed her, how to give her her meds, how to take care of someone who’s incontinent, but I learned." The registered nurses hired to assist with Clara’s in-home care taught him how to assist her with eating, bathing and walking. He retrofitted the home, installing a walk-in tub, grab bars, a hospital bed, and, when Clara could no longer walk, he added a wheelchair ramp over the front stairs.

The demands of caregiving were as much emotional as physical. Over the course of eight years, Mark saw Clara disappear before his eyes, the disease robbing his wife of her luminous smile, her ability to recognize others, and the most basic human functions. "I felt so powerless and helpless in watching her deteriorate. I used to just curse this illness," he says. "I just prayed for the strength to get me through one day at a time. And I cried almost every day. Once, maybe, I went four days in a row without crying." Shaking his head, he says, "It took a lot out of me."

Friends would sometimes suggest to Mark that he consider moving Clara to a care home, but he’d refuse, saying "I love her too much to do that." He held on to a sense of equilibrium by paddling, running and doing simple errands during weekly periods of respite care.

Their children and grandchildren brought moments of great joy, and their caregivers became an indispensable part of the family, but Mark was disappointed that "people who I thought would be there for Clara weren’t." A friend once told him, "Mark, you have two choices: You can be bitter or you can be better. If you stay bitter, it will eat you up inside. If you choose to be better, you can rise above it."

By 2013, Clara had lost the ability to sit up and was confined to bed. Even so, Mark was eager for her to see Kailua’s Fourth of July parade, which passes in front of their home. He and his son strapped Clara into the wheelchair and seated her in the front yard so she could be part of the celebration along with the rousing marching bands and flower-laden floats.

Days later, Clara was nearing the end. On the morning of July 10, Mark and the children were with Clara in the bedroom. As he was adjusting her sheets, Mark noticed her fingers turning blue. "You can see her breath getting shallower and shallower. And I took her hand and I whispered to her, ‘You go, you grab the Lord’s hand. I’m going miss you but you go.’ She passed away after that but I held on, I held on."

On July 29, more than 300 people attended Clara-Joyce Puanani Old’s celebration of life at St. Anthony’s Church in Kailua, where the couple had been married. The services were filled with song and suffused with the gracious spirit of a woman who had brought joy to so many others.

Later, at home, Mark is asked if he would make the same choices were he given another chance. "I would," he says firmly. "I took care of her with lots of love, the best I could. I took care of her."

Surrounded at home by photos and by vivid memories of their life together, he finds it’s the small things that tug at him. "I miss the sound of her voice," he says. "When she was well, she never missed saying to me, ‘Good morning, honey. I love you.’ And me, this Hawaiian, sometimes I forget and I go, ‘Oh yeah — I love you, too.’ No less than four times a day, every day, she would tell me she loved me. And at night, when we go to bed, she would never forget to say, ‘Good night, honey. I love you.’"

Two evenings after Clara passed, Mark was sitting under one of the shower trees she’d planted in their front yard. "It was a still night. I just come back from my run and was cooling down. And this beautiful breeze came and this light, cool rain fell on me and it felt so good. And I look up and say, ‘Thank you, honey. I love you, too.’ "

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The Olds family thanks Saint Francis Hospice and caregivers Maraea Mehau Laranang and Bobbie Hashimoto-Perreira.