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Alzheimer’s at the Outset—A Black Family Coping at the Crossroads

Posted: May 27, 2012

Photo:  James Small

Part 2. Click to read Part 1.

MINNEAPOLIS, Minn.--The police were called to Ann Small’s home a couple times before her husband was diagnosed with Alzheimer’s disease. Small didn’t know why he was acting so differently, and at times, violently. She rationalized that perhaps the two were just spending too much time together and becoming frustrated with each other.

The truth was more devastating. James Small, 82, had Alzheimer’s disease.

James and Ann grew up in Galveston, Tex., where they met and married 56 years ago. In 1956 they moved to Minnesota. They have one daughter and three grandchildren. His wife described James as someone who is used to being in control of situations. He worked at a company for 30 years, working his way up from assembler to an engineer.

His Retirement Ministry to Youth

After retirement James worked at a financial company and attended Bethel University in McKenzie, Tenn., for four years to become an ordained Baptist minister. His faith was a theme that ran through his conversation. James taught Sunday school for several years, became a deacon, and served as associate pastor of his church, where he started Bible study groups.

Through the church, where the Smalls were members for over 20 years, James also visited a juvenile detention center. “I started teaching them about Christ,” he said of the youth there.

James added, “If I live long enough, we’re going to change how we handle our kids, big time because we don’t teach them nothing. We let the world teach them.”

Even as Alzheimer’s disease has progressed, James remains confident that nothing is happens to him apart from what God intends. “I don’t worry about stuff because I know He has His hand out for me,” Small said. No matter what happens, he concluded, “My life has been blessed.”

Ann said that the early signs of Alzheimer’s disease were hard for her to detect, but once James was diagnosed, she could look at events in the two previous years and notice changes.

“Dad was concerned about his memory,” said their daughter, Kathy Small-Rice, about the reason the family took him to the doctor. “Things weren’t clear to him.”

Small-Rice described noticing that her “handyman” father had difficulty completing projects like painting and hanging blinds. She described a time when he became confused while making shelves with her husband, and recalled a comment he made while he drove on the freeway with her in the car.

“He told me that for a moment he didn’t know where he was,” she said.

James has diabetes and his mother had dementia, two risk factors linked to higher risk of developing Alzheimer’s. When they took him to his primary physician, the doctor noted that Small’s demeanor was different and that he couldn’t remember how to take his medication. The doctor referred him to a psychoneurologist, who diagnosed James with Alzheimer’s in January 2011.

Finding Support

Ann said that the doctor referred her to the Alzheimer’s Association, which she accessed to begin learning about the disease. While she connected with one of the support groups, her husband actively participated in programs through the organization.

Small said that she also enjoys the outings that she and her husband attend through the Alzheimer’s Association. However, she noted that they are the only black family at the events she has attended.
“As a black community, we don’t want to talk about it,” she said, as a possible explanation for the lack of black participation at the Alzheimer’s Association.

Thus far, caring for James has meant making sure that he has something to do. Even though he asserted that he spends most of his time reading the Bible, Ann quietly clarified that he is no longer able to read as much anymore and watches a lot of TV. She said after a brain hemorrhage last October, his memory has worsened.

James is still fairly independent and can take care of his own needs. He doesn’t drive, so his wife drives him to a weekly men’s breakfast that he started years ago. They regularly attend church, and Ann said friends from church call her sometimes to make sure things are going well.

Ann said she didn’t feel she needed a lot of support, yet, and looked forward to a trip to Florida with a group of friends. Their grandson will spend the night at their house to help James if he needs assistance.

This article is the second in a series of articles focusing on Alzheimer's disease in the African American community. The next article will look at caregiver stress and special challenges for black families. Andrea Parrott wrote this series as part of a fellowship MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America.

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