Sometimes she’s lucid, and they talk for hours. Other times she’s difficult and doesn’t remember who they are. Lydia Simmons, 82, has Lewi Body Dementia, which is characterized by foreign proteins in her brain that disrupt its function. She’s fortunate to live with her son, Russell Simmons, and his partner, Michael Hall.
When Russell realized his mom could no longer live alone, he moved her from Virginia to their Vallejo home. The men had no idea what they were in for. “Mom was more than we could handle. We weren’t prepared to care for someone with dementia,” Russell says.
Lydia had high anxiety and confusion during the day and terrors at night. So they placed her in a senior home in Alameda while they learned how to care for her. Through caregiver training classes and YouTube videos by Teepa Snow, they learned the scope and breadth of Alzheimer’s disease and how to best help her. After two years, they brought her home.
Lydia had spent most of her life as a homemaker with a husband in the Marines. The couple was married 48 years until he passed 13 years ago. They met in a small town in North Carolina. “Dad used to say ‘I found a million dollar baby in a five and dime store,'” Russell says. “Mom took his death hard.”
Now it’s hard for Russell and Michael, her full-time caregivers, to watch this strong woman change before their eyes.
“Having Mom home is much like welcoming a new baby into the family,” Michael says. “Everything has changed as we take care of her needs first. She can be lucid at times and at other times violent and destructive, but she can’t tell us why.”
They learned all they could about dementias, and adopted an organic diet. With the help of her physician, they now keep her on a minimum of drugs. “Once, during a lucid period after her diet and medication change, Mom looked at us and said ‘I feel like I’ve come out of a coma,'” Michael says. “Unfortunately, those times were few, and we took every setback personally.”
They tried two day programs unsuccessfully. A friend referred them to the NorthBay Adult Day Center in Vaca-ville. Now Lydia attends the center
five days a week.
“As soon as we met Sandy Perez, manager of the program, we knew we had found a place for Mom,” Russell says. “You have to believe that things can improve and she gives us hope and encouragement.”
With a daily routine, Lydia has relaxed and become more self-assured. “We love that they cook for the participants and take the time to get to know them,” he adds. “The entire staff is warm and compassionate.”
With Lydia well cared for during the week, Russell and Michael can pursue their own professional lives. The weekends are devoted to Mom.
Last year they took Lydia with them on the local Alzheimer’s Walk. “She was amazed at all of the people coming out for ‘her disease.'” Michael says. “I think it was the first time she realized how big this disease is.” They plan to walk as a family at this year’s event, on Sept. 13 at the Suisun Waterfront.