My parents were amazingly successful and had a wonderful life together. My dad was a highly decorated Vietnam veteran, a career Army officer who retired as a Lt. Colonel. My mother was a real estate broker, mortgage banker and financial planner. She led her church’s financial committee for years and volunteered through Rotary. My mom planned every second of her life. She and my dad intended to live happily ever after.
The warning signs were present; we just didn’t see them. My brother and I, and our spouses, had trouble accepting the changes in my mom because she was so young and because she and my dad were active and busy, like 60 and 62 year-old working professionals are everywhere. Distance is a great insulator. My husband, children, and I moved to Nebraska, at about the time Mom probably began to have cognitive impairment. I made the trip back to Georgia to see my parents about once a year. We had short conversations on the phone. Mom said she was “fine.” Everything was always “fine.”
Her personality and cognitive changes were subtle and slow to evolve. Always busy with her own life, my mom’s inability to grasp details about her grandchildren seemed more like a characteristic lack of interestthan a change in mental ability. We thought she’d never retire and when she sold her business and started staying home, we were surprised. Her volatile temper was worse, but we saw it less frequently. She became more patient in some ways, and seemed to slow down, taking longer to do things like dress for the day. Of course, my strong-willed mother refused to see a doctor, and when she did, she refused traditional tests to confirm dementia.
My dad soldiered on, living his duty to love and honor his wife of 40-plus years. He was a drowning man, but this long-distance daughter did not see it. Nearby, my brother kept thinking my action-oriented dad would act. But he did not. Dad kept drowning. Mom kept declining. About 8 years into Mom’s dementia, we finally convinced Dad to bring in care to help when he became terminally ill. He held on until he was sure she was safe. Mom’s transition to memory care was traumatic and dramatic, but her ongoing violent behavior meant she needed more care than we, or professionals, could provide at home. My dad died at 71. My mom stopped recognizing me at 70. At 74, Mom is almost completely unreachable, but still present in physical form. Alzheimer’s disease took both my parents at young ages. We must stop it.
My parents marry in a local park, surrounded by friends and family. Over the next thirty five years, they experience challenges and harmonies, setbacks and celebrations. Dementia ravages my mother’s brain while my sisters and I are in college and high school. We do not understand how she forgets her birthday, and she cries that she is broken. My father second-guesses his decisions about her care but stays dedicated. At the age of 59, Mom can no longer live at home. We move her to a care home, and Dad visits her almost every evening after spending all day at the office. He helps her eat when her fingers forget how to grasp silverware and she can no longer hold her plastic drinking cup and straw. When she begins sleeping through most meals, he sits by her bed. She clasps his hand, silently pleading for him to stay.
My mom fights against the disease that claims her memories, speech, and muscles. When Dad walks in the room, Mom shares the only thing she has left to give: a smile. This precious link to who she used to be and who she will always be helps relieve the sadness of her decline and fear of life without her. Dad gives my sister and her husband advice for their first anniversary. “Your mother and I have had our years,” he says, his voice quiet and strong. “Enjoy your years, together.”
Read more of Heather’s story on her blog, oldjokesgetlaughs.blogspot.com
A long-time supporter of the Alzheimer’s Association Nebraska Chapter told the Chapter Program Director of a couple who lived next door that could benefit from the Chapter’s Support Group for persons with dementia. This was a couple in their early 60’s and the husband had been diagnosed with Alzheimer’s disease. His dementia would be considered Young Onset Dementia, as it began before age 65.
The couple, Les and Trudy, did began to attend the Support Group. With time, they became comfortable with the group and shared their thoughts and ideas too. Les, who is diagnosed with Young Onset Dementia, shared that it was important to have a group that they feel they belong to; that it is “OK” to have Alzheimer’s disease. “It is comfortable to come and be yourself,” he shared.
Les and Trudy formed a Walk to End Alzheimer’s team and invited their friends and family to walk with them on the “Wick’s Warriors” team. They have become active volunteers with the Chapter. They have even served as the mission speakers at the Walk and Gala, sharing their story to raise awareness. Les and Trudy have quietly found their niche with the Alzheimer’s Association, Nebraska Chapter. They came looking for support and found it, but they are giving back tenfold.
Brad, LuAnne’s husband, was truly shaken when the couple was looking out their window and LuAnne couldn’t remember ever seeing a sparrow before. This was the first chilling realization that something was very wrong and it was still over a year before LuAnne was officially diagnosed with semantic dementia. Semantic dementia refers to a progressive loss of the ability to remember the meaning of words, faces, and objects.
Since LuAnne received her life-changing diagnosis, many things have changed, including forced retirement from a job she loved and not being able to drive. However, she enjoys playing piano and can sight read music and she likes to play games on her iPad. What makes life most difficult for her now is that she is very aware of what she can no longer remember and what she cannot do. She thinks she should still be allowed to drive and that we should find her a job. Unfortunately, neither of these are an option for her.
LuAnne’s caregivers want you to share her story with your friends and family.