Six years ago, my mother, Bobbie Lonergan, was diagnosed with Alzheimer’s disease. Mom was the last person I thought would suffer from Alzheimer’s. She raised 13 children, was a college-educated math major, and spent any spare time she had playing bridge and doing crossword puzzles. She kept her brain active for decades, but in her early 70s, everything changed.
At 72, Mom struggled with forgetfulness and was frequently repeating herself. The everyday things that brought her years of joy — sewing, cooking, baking, bridge, and puzzles — now brought immense challenges. She put on a good act, saying, “I’m fine.” But as time wore on, I couldn’t ignore her symptoms. I knew it wasn’t just about getting older — I knew it was Alzheimer’s.
This cruel illness affects 5.3 million Americans and is projected to affect 16 million by 2050. In fact, every 70 seconds, someone in our country is diagnosed with this devastating disease. These numbers are just the people living with the disease, not the 10 million caregivers, typically the family members who look after their loved ones.
It has been 28 years since November was declared National Alzheimer’s Awareness Month. Through the years, there have been medical advancements in developing treatments that temporarily slow the progression of the disease. Yet, there is still no cure and there is nothing available to prevent its onset.
Here are some other frightening facts to consider:
- Americans age 65 and older who suffer from Alzheimer’s and dementia have triple the health-care costs of other older people.
- It is estimated that by 2030, Medicare spending on individuals with Alzheimer’s alone will cost nearly $400 billion — nearly as much as today’s total Medicare spending.
Clearly, the time for action against this disease is now.
My own action came about by chance. I found an advertisement for an Alzheimer’s support-group meeting at a local hospital. The following Tuesday evening, I sat in a conference room and listened to the frightening stories from Louise and Kathy, who were caring for a loved one with advanced Alzheimer’s. Louise explained that she had to put her husband in a facility after he attacked her.
“He’s my husband. How can I ever forgive myself?” she cried.
Kathy recalled how her mother nearly burned the house down while cooking hamburgers at 3 o’clock in the morning.
“My daughters and I were asleep. My God, we could have died!” she shouted.
I listened to their stories and felt my heart pounding out of my chest. Could this really be what lay ahead for my mother?
Before leaving the meeting, I got the recommendation for a reputable geriatric doctor. The next month I took Mom to see him, and he began by engaging Mom in a simple dialogue as a way of assessing her cognitive function. Within 10 minutes, Mom revealed that she knew the date, where she lived, and the number of children she had. However, she didn’t know what she had for dinner the previous night, the name of the grocery store where she shopped, and only three of the five words the doctor told her at the start of the appointment.
Through additional tests, including a brain MRI and blood work, the doctor concluded that Mom didn’t have a brain tumor and hadn’t suffered any kind of stroke. Instead, Mom was officially diagnosed with “probable Alzheimer’s disease.” The diagnosis wasn’t a surprise to anyone in my family, and it finally gave an answer to the nagging question
“What’s wrong with Mom?”
In processing Mom’s diagnosis, I plunged into research mode, spending hours on www.alz.org, trying to collect the facts of a disease that seemed all shades of gray.
No one could tell me why this happened to my mother or how fast she’d advance. Most of all, no one had a cure. I found myself on the verge of tears at random moments, and it suddenly hit me — I was grieving for Mom while she was still alive. I felt as if I were on an emotional roller coaster. Some days I was in denial, thinking maybe Mom wasn’t so bad. Other days, I was angry about Mom’s fate, wondering how this could have happened to such an intelligent woman. Through it all, I felt the crushing weight of overwhelming sadness.
In the years since Mom’s diagnosis, I’ve witnessed her decline through the stages of Alzheimer’s. I’ve felt my heart break when I realized that this amazing cook who once prepared daily dinner for 15 people could no longer make a simple sandwich. I’ve questioned my faith when it became clear that this devout Catholic could no longer recite the “Hail Mary.” I have watched pieces of my mother disappear before my eyes.
In my long journey to accept Mom’s fate, I’ve cried a waterfall of tears and have veered into the valleys of anger and despair. But through this process, I found a way to find fragments of light in my mother’s growing darkness. As Mom crossed into the advanced stages of Alzheimer’s, I forced myself to find the pieces of her that remained, instead of dwelling on what was taken from her. It was how she raised me and what she would have expected from me.
All too often, people with Alzheimer’s become highly agitated and require medical sedation. The fact that Mom’s loving nature still remains is a blessing. And even though Mom no longer knows my name, she shows that she still recognizes me through her reaction when I walk through the door for a visit.
She can no longer say the words “Hi, Kerry. Great to see you.” Instead, her face brightens upon seeing me. When I hug her and say, “I love you, Mom,” she embraces me and kisses my cheek.
The lifelong connection between a mother and daughter remains — a miracle amid her Alzheimer’s disease.
Kerry Luksic is a freelance writer in Malvern. E-mail her at firstname.lastname@example.org.