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One family's journey with Alzheimer's disease
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 Small grew up in Galveston, Texas where they met and married 56 years ago. In 1956 they moved to Minnesota. They have one daughter and three grandchildren. His wife described him 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.
African American community and Alzheimer's disease: This is the second in a series of articles focusing on Alzheimer's disease in the African American community. James and Ann Small and Juanita and Chuck Williams are African Americans who have shared their stories about their personal journeys with Alzheimer’s disease. Andrea Parrott researched and 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.
After retirement James Small worked at a financial company and attended Bethel University for four years to become an ordained Baptist minister. His faith is very important to him and was a theme that ran throughout his conversation. Small taught Sunday school for several years, became a deacon, and served as associate pastor of his church, which the couple has been a part of for 20 years. Small was very active in his church, starting Bible study groups and visiting a juvenile detention center. “I started teaching them about Christ,” he said about his activities at the detention center. He 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.”
Help is out there — here's where to find it
For more information about the Memory Loss Support group for African Americans, visit Family Memory Care for African Americans through Volunteers of America-Minnesota.
Volunteers of America has other resources for caregivers: Older Adults and Their Caregivers
Find links to several resources for caregivers, older adults and their families, visit Wilder Foundation’s Community Services for Aging. You can also call 651-280-CARE. A social worker will answer the call or return the call within 24 hours.
Not sure if you’re a caregiver? What is a Caregiver.org will help you learn more.
The National Plan to Address Alzheimer’s Disease includes as part of its goals strategies to support families and caregivers of those with Alzheimer’s disease and to address ethnic and racial health disparities. You can read it here.
Even as Alzheimer’s disease has progressed in his body, Small remains confident that there is nothing that happens to him apart from God. He implied hope that the normal progression of Alzheimer’s disease will not necessarily be his fate. “I don’t worry about stuff because I know He has His hand out for me,” Small said. No matter what happened, he concluded: “My life has been blessed.”
Ann Small said that the signs of Alzheimer’s disease were hard for her to detect, but once he was diagnosed, she could look at events two years before and notice changes. James Small said that there were no changes in his life, but his wife reminded him of explanations he had given in the past. He used to admit that two years ago he began to feel that something was not right with his mind.
“Dad was concerned about his memory,” said daughter Kathy Small-Rice about the reason the family took him to the doctor. “Things weren’t clear to him.”
She described noticing that her “handy-man” father had difficulty completing projects like painting and hanging blinds. She described a time when he became confused as he made shelves with her husband, and she described 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.
Small has diabetes and his mother had dementia, two factors linked to higher risk of Alzheimer’s disease. 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 psycho-neurologist and Small was diagnosed with Alzheimer’s disease in January 2011.
Ann Small 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 Alzheimer’s Association. Small said that she also enjoys the outings that she and her husband attend through the Alzheimer’s Association. However, she notes 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 Small has meant making sure that he has something to do. He asserted that he spends most of his time reading the Bible, a favorite activity for him in the past, but Ann Small quietly clarified. He is no longer able to read as much anymore and watches a lot of TV. She said that after a brain hemorrhage in October of 2011 his memory has worsened.
James Small 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 Small said that friends from church call her sometimes to make sure that things are going well. She didn’t feel that 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 Small if he needs assistance.
© 2012 Andrea Parrott