Diocesan News

Sunset Park Couple Battle Alzheimer’s

Santiago Javier, 81, has been living with Alzheimer’s disease for 22 years. His wife Victoria takes care of him full time at their Sunset Park home. The couple receives free meals weekly from New York nonprofit God’s Love We Deliver. (Photo: Allyson Escobar)

SUNSET PARK — Victoria Javier hasn’t had a conversation with her husband, Santiago, in 10 years.

The reason: Santiago Javier, 81, is nonverbal, one of the consequences of his Alzheimer’s disease, a brain disorder that affects 5.8 million Americans, according to the Alzheimer’s Association.

According to the National Institute of Aging, 5.5 million Americans with Alzheimer’s have dementia, and it is the sixth-leading cause of death in the country and the third-leading cause of death among older Americans after heart disease and cancer.

World Alzheimer’s Day on Sept. 21 was another reminder of those grim statistics and of the reality the Javiers have been living with for 22 years. Their lives changed forever when they noticed Santiago’s behavior, memory and way of speaking started to deteriorate in 1997.

“It’s very hard on me, because physically he’s here,” said Vicky, 77, a retired schoolteacher who taught for almost 30 years at St. John the Baptist in Bedford-Stuyvesant; Sacred Hearts – St. Stephen in Carroll Gardens and Immaculate Heart of Mary in Kensington.

“But for a long time, it’s like he’s not here anymore — emotionally, spiritually, mentally,” Vicky said. “He doesn’t know me anymore. He doesn’t know anybody.”

The Catholic couple, who are originally from the Philippines, have been living in Sunset Park for over 50 years. They have three children and eight grandchildren.

Santiago, a former draftsman, lost his memory two years into his diagnosis in 1998. The couple had been active in their parish, Our Lady of Perpetual Help in Sunset Park, and Santiago was president of a local Filipino organization before his disease.

“At the time, we didn’t know what was going to happen … Medicare wouldn’t pay anymore, after [Santiago spent] several years in hospice,” Vicky said. “Physically, I’ve been taking care of him by myself for 22 years.”

Victoria and Santiago Javier met and were married in Baguio, Philippines, and have three adult children living in Brooklyn. They also have eight grandchildren. They have lived in Sunset Park for over 50 years.

She recalls bringing her husband to her classroom on days when she had to teach, and now sleeps downstairs with him in their two-story home. “When he was first diagnosed, I knew nothing about Alzheimer’s. I was recommended to go to the Alzheimer’s Association and other support groups, to seek advice and other help,” she said.

She has found help from God’s Love We Deliver, a Manhattan-based nonprofit that provides meals to people suffering from chronic illnesses in the area.

The couple receives nutritious meals — frozen soups, salads, bread and vegetable combos — twice a week, hand-delivered by volunteers from the organization. Vicky and Santiago have also received meals from the food pantry at Our Lady of Perpetual Help, and Communion is brought to their home.

“It is very helpful for me. You don’t know how I thank God for this,” Vicky said. “I don’t have to think about what to cook or what to buy, and it helps a lot.”

Because he can’t chew or swallow, Santiago’s diet consists of minced meals and puréed soups. Vicky happily shared that since her husband began to eat the donated meals, his high blood pressure and cholesterol levels have dropped and he is no longer diabetic.

“I save [all the meals] for him, instead of thinking of what to give him and having to go out and buy groceries,” she said.

Vicky said that her devotion to the rosary and to Our Lady of Perpetual Help keeps her and her husband’s health and faith going strong. “It all makes me feel very blessed,” she said. “I have to share those blessings and give back.”