By Effie-Alean Gross
“How many children do you have?” the doctor asked my 87-year-old mother.
She smiled, eyes glancing from him to me. “Why, I have three or four.”
Since I’m the last of five children, I was taken aback. Her physician continued, “Who is the President of the United States?”
“I don’t keep track of those things anymore.” Fidgeting with a piece of lint on her skirt, Mother coyly excused her inability to answer. Not many years earlier, Thelma B. Groves had raised the American flag every day, attended Iowa caucuses, and supported her candidates. The reality of that moment in the doctor’s office made me feel sad, afraid, disbelieving, and overwhelmed. Mother had Alzheimer’s.
As shocking as that first acknowledgment seemed, my siblings and I were unprepared for such a brutal diagnosis. None of us completely grasped Mother’s cognitive condition or her lack of comprehension, but we all experienced pain in one form or another.
During the following five years, we learned a lot—and not just about the disease. The Lord’s plan was being fulfilled for each of us. We were being strengthened and used by God as we met other Alzheimer’s patients and their families. God had not deserted us. We couldn’t forget his promise: “You will keep in perfect peace those whose minds are steadfast, because they trust in you“ (Isaiah 26:3). Even mothers can and do forget their children, but God promised not to forget his own (Isaiah 49:15).
A Look at the Condition
Four years before my mother was born, German physician Alois Alzheimer in 1906 first discovered the progressive and fatal brain disorder. He affirmed that Alzheimer’s affects long-term and short-term memory loss, thinking skills, and behavior.
Symptoms of this common form of dementia differ from simple everyday forgetfulness. Instead, complete circumstances or events are forgotten. Alzheimer’s patients experience learning difficulties, disorientation, speech problems, personality changes, and an inability to perform routine daily tasks, like personal hygiene.
In my mother’s case, she forgot how to handle money. When younger, she could add large figures in her head. I knew something was wrong when she couldn’t pay for groceries or count her change. On other occasions, she hid her Social Security money—cash—all over her house: under a lace doily, in the sewing machine, and stuffed in drawers.
An estimated 5.4 million Americans have Alzheim-er’s disease. The Alzheimer’s Association lists the disease as the sixth leading cause of death among the elderly in the United States. According to the Centers for Disease Control, Alzheimer’s claims more than 79,000 American lives each year.
Diagnosis and Treatment
Memory problems progress in three stages: mild, moderate, and severe. Often the disease is diagnosed early, before the moderate level when the symptoms may include confusion, hallucinations, and paranoia. In later severe symptoms, weight loss, difficulty swallowing, increased sleeping, and lack of bladder and bowel control occur.
I was in denial that first day at the doctor’s office. I didn’t want to know what to expect after my mother’s diagnosis. Back in 1998, a vast amount of information about the disease wasn’t available like it is today.
I was also entrenched in my work, my family, my church, and helping my sister care for our mother. We had little time for research. Sound familiar? If it does, my heart goes out to you. With great empathy, I remember the Lord’s healing balm. He is “the God of all comfort, who comforts us in all our trouble” (2 Corinthians 1:3, 4a).
Reassurance also comes from human sources. Numerous drugs and alternative treatments present a degree of hope and relief. For mild to moderate Alzheimer’s a physician may prescribe one of several FDA-approved medications known as cholinesterase inhibitors. For moderate to severe conditions, he may write a script for an N-methyl D-aspartate (NMDA) antagonist. Recent clinical studies have also shown encouraging data for new EnVivo drugs to improve measures in thinking and memory. Drug-taking patients are closely monitored for side effects.
Contrary to popular belief, alternative treatments using vitamins B, C, E, folic acid, or beta-carotene do not support a benefit in cognitive health, according to the National Institute of Health (NIH). No definitive evidence, but stronger data showed that Omega-3 fatty acids in fish oil may help. The NIH also found ginkgo, a plant extract, of no effect in preventing or delaying Alzheimer’s. Supplements can interact with medications; therefore, caregivers should work directly with a health care team to determine the best choices, considering the risks and benefits.
A Brief History
She may not be famous, but Auguste Deter was admitted to a Frankfurt psychiatric hospital, the first patient ever diagnosed by Alois Alzheimer. She died in April 1906 at age 55. In more recent years, Ronald Reagan, the 40th President of the United States, suffered and died with the disease.
Other famous Alzheimer’s sufferers include: Perry Como, American singer and television personality; William De Kooning, Dutch abstract expressionist artist; Thomas Dorsey, gospel music legend; Betty Schwartz, the first woman to win an Olympic gold medal in track events; E. B. White, legendary American writer, famous for the children’s book, Charlotte’s Web; and Norman Rockwell, American painter and illustrator best known for his work in the Saturday Evening Post.
Obviously, Alzheimer’s is no respecter of persons. However, when celebrities are diagnosed with a particular disease, great effort and funding is often put into research in order to find a cure. Despite some controversy, actor and comedian Jerry Lewis is a good example of a celeb who has raised an enormous amount of revenue over many years for muscular dystrophy. Bill Gates champions the eradication of polio. Such high profile personalities have helped bring about public awareness and funding for cures.
Caring and Coping
An estimated 15 million family members and others provide unpaid care for those afflicted with this disease that currently has no cure—often at a high cost to their own well being. Caregivers must take good care of themselves. Spouses and adult children of Alzheimer’s patients typically experience high stress levels with a third of them suffering from depression.
That same emotional state will most likely be present when deciding on a long-term care facility. Be prepared for a heartbreaking experience. Choosing a nursing home for a loved one can be second only to making final arrangements.
After two years of round-the-clock care, my family finally decided, “It’s time.” We were worn out mentally, emotionally, and physically.
Our thoughts churned inside each of us. We had vowed never to put our mother in an institution. Here was the woman who had given us an entire childhood of personal sacrifice and a lifetime of love. Yet, we were falling apart. We couldn’t keep it up. With all my heart, I wish it could have been different.
We did a little research and found a nice facility in Phoenix that would accept Mother’s Medicare, her only insurance. The staff became the best part of our mother’s new home.
As we visited every day at first and nearly every day later on, we developed friendships with the nurses, aides, and other residents. Some residents rarely received visitors.
We joined Mother for social events at the care home. At this stage she recognized us and usually smiled, but rarely talked, and couldn’t walk or eat without assistance.
We learned to extend a gracious heart and hand, to stay well informed, and to exercise God-given understanding. Above all, we learned the value of treating patients with the dignity they deserve.
That’s how my family loved Thelma B. Groves, even in her late-stage Alzheimer’s. She managed to keep “her mind steadfast on the Lord” with a picture of Jesus hanging next to her bed. I’m sure she saw him best, “as he is,” the instant her eyes closed for the very last time (1 John 3:2).
Effie-Alean Gross is a freelance writer in Fountain Hills, Arizona.
Support, Services, and Research
Today’s Caregiver provides family and professionals with information, support, and guidance for caregivers
Alzheimer’s Association with Chapters throughout the United States. Contact a 24/7 Helpline at 1-800-272-3900. For support groups and educational workshops, visit www.alz.org.