Memory Stealer: Learning to live with my mother’s Alzheimer’s diagnosis

On Jan. 1, 2019, I found myself in a lonely place. A married mom with five children, I was sitting alone on an airplane leaving Orlando, bound for Chicago. While most people were spending the day off at home with their families, making resolutions and recovering from the holiday season, I was flying solo to face my biggest challenge thus far: my mother’s dementia.

At 65 years old, my mother’s brain and cognitive function had a sharp decline the previous year. She’d been showing signs for at least five years prior — symptoms we credited at least in part to other stressors in her life. 

Over the holiday season last year, my kids, husband and I had gone up north to enjoy some snow and family time. My mom had trouble sitting still, pacing the house and frantically looking out the window any time my dad was not in her line of sight. She was short with me and my brothers and angry with my children. She was not the same self-assured, independent, kind person I’d grown up admiring. 

My father was hesitant to seek out help. High school sweethearts, my parents had always relied solely on each other. He felt it was his lot in life to handle whatever was happening with her and to do it without complaint. I knew there had to be a better way, for both of their sakes.

I looked my dad in the eye and told him that I was going to help by handling administrative things. He gave me her medical and insurance information and I set appointments with her primary physician and a neurologist. My dad, who is hard of hearing, asked if I could come to those appointments just to have another set of ears and questions. So on New Year’s Day, I headed to join them.

The diagnosis 

It would take another three months to get to the bottom of her diagnosis: Stage 3 moderate Alzheimer’s disease. Since she was showing signs so long before those appointments, she was given an early onset diagnosis, which is given to anyone developing Alzheimer’s before age 65. 

She was prescribed the highest tier of medication available and my dad was given lifestyle tips to help control the symptoms of this incurable and progressive disease.

In the past year, I’ve gone through a range of emotions as they relate to my mother’s diagnosis. I’ve felt grief for the person I lost, long before I was ready to stop asking her for advice. I’ve felt guilt for living too far away to relieve some of the burden of her care on my father and brothers. I’ve felt helpless, awash in a tidal wave of information but little answers about the disease itself.

Many times I’ve felt fear and a debilitating panic about what this diagnosis means for my own brain health and future. 

The facts

According to the Alzheimer’s Association, 5.8 million people live with Alzheimer’s disease in the United States. By 2050, that number will rise to 14 million. One in three seniors has Alzheimer’s or another form of dementia at their time of death. Alzheimer’s on its own is actually the 6th leading cause of death in the U.S., as it progressively shuts down parts of the brain until vital organs like the lungs and heart no longer function. Alzheimer’s kills more people each year than breast cancer and prostate cancer combined.

Dr. Visa Srinivasan is the medical director at Health First Aging Services. She is a geriatrician and specializes in the wellness and health of older adults, helping form comprehensive patient plans that focus on healthy aging.

“There is a myth that memory loss is a part of aging,” Srinivasan said. “We promote brain health by comprehensive evaluation of patients and thorough medication review.”

I asked Dr. Srinivasan what a person like me, with a family history of dementia at a relatively young age, can be doing right now — in my 30s — for my best prognosis.

“When we care for the brain, we also care for the ‘mind’ and emotional well-being and stress management — including restful sleep — are integral parts of brain health,” she said. “Good control of risk factors like blood pressure, diabetes, high cholesterol and maintaining optimal body weight is good not only for the heart, but also for the brain.”

She gives the following suggestions for keeping brain health a priority:

Stay physically active. Exercise spurs development of new nerve cells and increases the connections between brain cells, or synapses. This results in more efficient brains. Exercise also lowers blood pressure, improves cholesterol levels, helps blood sugar balance and reduces mental stress.

Flex the brain. Exercising the brain by "mental gymnastics" using things such as crossword puzzles, sudoku, board games and card games generates new brain cells. These activities help develop neurological "plasticity" and build a functional reserve that may protect against future cell loss.

Seek social engagement. Join a club, participate in group activities, such as church choir. Increased social interaction has been shown to benefit Alzheimer's patients by minimizing one's sense of loneliness, isolation, stress, and vascular factors that contribute to cognitive decline. It can also improve patients' sense of self-worth.

Eat a brain-healthy diet. A Mediterranean-style diet that emphasizes fruits, vegetables, fish, nuts, unsaturated oils (olive oil) and plant sources of proteins is recommended. Consumers of such diets are less likely to develop cognitive impairment and dementia.

Learn stress management. Keep negative energy at a minimum through mindfulness, meditation and gratitude.

Avoid tobacco and excessive alcohol use. 

Protect your head. Reduce the chances for brain injuries by wearing a helmet while biking and avoiding situations that could lead to head injury.

And while there is no way to know what my brain health will look like in another 25, 35, 45 years or beyond — doing my best to keep my mind and body healthy today is where I need to keep my focus. After all, worry and stress are just bad for my brain.

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