The Case Manager at Community East, registered nurse Lisa Gading, told me a touching story about her mother who suffers from Alzheimer’s disease. I interviewed Lisa who hopes to add to the understanding of the process that people go through.
Alzheimer’s jerks around the emotions of sufferers and their families because its course is erratic and may last for years. No one wants to believe that they’re losing their mind. Thus, victims and their families often go through a period of denial. One day’s hope for improvement will inevitably be followed by a reversal. Family members face years of mourning during what I think of as the long goodbye.
Lisa’s father owned a lighting distributorship that provided products to large Indianapolis electrical firms. Lisa said, “He was a wonderful salesman!” Lisa’s mother, Doris, worked with him and handled the books. Lisa’s father is deceased, and her mother is 86.
I asked Lisa, “What was the earliest sign of trouble?” “In 2004 Mother started asking the same questions over and over. She was still driving, but around 2010 she started getting lost. She’d even stop at strangers’ homes to get directions. I was terrified that she’d get hurt.” Lisa made two appointments for her mother to see professionals. However, her mother convinced her father that she didn’t need to see anyone, so he cancelled the appointments. Lisa believes that Doris knew that something was wrong, but didn’t want it confirmed.
Then Doris started wandering. Lisa said, “Neighbors helped corral her.” I understand that story. One Sunday afternoon, I was at the front desk of the real estate office. Dick, a colleague, came in and said, “This lady is trying to get into my car.” She was a sweet-faced, plump, elderly lady who had nicely kept hair, pretty clothes, manicured nails and diamond rings. She wouldn’t speak. I called the Sheriff’s Department. The Deputy said, “Her family is frantic about her. I’ll call them.” A man who lived a few blocks up busy Mitthoeffer Rd. which has no sidewalks rushed in crying “Oh thank God!”
Meanwhile, in addition to her work, Lisa was taking care of two homes as it was impossible for Doris to live in Lisa’s two-story house. Her children helped out. Lisa had alarms put on the doors, but her father slept through them. Lisa told her father, “She’s going to get hurt.” She moved her parents into assisted living, but the crises continued. Her mother wandered into the apartment of neighbors, thus frightening them.
The symptoms worsened when Doris was hospitalized with a broken hip. Both of Lisa’s parents went into a nursing home. The emotional toll on her father was terrible when Doris no longer knew him, and it affected his health. “We’d cry together, but when she didn’t know me I cried alone lest he be even more upset.” Then one day Doris would know them, and they’d have hope. In 2011, Doris quit walking. They had to start feeding her pureed foods in 2012 because of choking.
Doris is still alive, but it hurts the family to see her excluded from family events. Lisa hasn’t heard her speak for a long time, although the attendants say that she talks. A medicine that might improve her a little didn’t seem to help much. Also, a possible side effect is death. Lisa has had it discontinued. “It’s difficult to choose between perhaps helping her a little or causing your mother’s death.”
One day Doris was jerking around in her bed. Thinking that she was having a seizure, Lisa took her hands. Finally, she realized that her mother was dancing in her mind. “I know that there is something going on in there.” No one can predict how long this long goodbye and period of mourning will last.
Lisa said, “Knowing what I know now, I would call the Indiana Council on Aging for suggestions such as hiring help to come to the home.” The number for their resource center is 800 432-2422 wclarke@comcast.net