From the outside
I am 64 years old and my wife, Margaret, has Alzheimer’s. Many others close to me, including my now 96-year-old stepmother, have lived or died with the disease.
I liken the role of caregiver, a task my father shouldered prior to his death, to that of riding a roller coaster.
Alzheimer’s disease is the most common form of dementia. It is a progressive disease that erodes the patient’s memory, ability to reason, communicate and tackle many or all the challenges of day-to-day life.
Margaret and I can trace our adventure in Alzheimer’s back about five years. It was then that I began wondering aloud whether she was becoming forgetful, hard of hearing or was simply tuning me out.
She said a doctor had, at some point, assured her that her memory was fine. But she later surprised me one day by coming home with a hearing aid that an audiologist had sold to her. It turned out that her hearing is fine, but her memory and many cognitive functions were failing.
The proof came in October 2016, which is when she had a cognitive episode that led to a two-day stint in Temecula Valley Hospital. I was blindsided by the episode, which manifested itself in various ways and baffled the EMTs.
Margaret’s formal diagnosis came in early 2017 from her neurology team. That thrust us into a fast-growing group. The Alzheimer’s Foundation of America estimates that 5.1 million people in our country have the disorder. Some estimates predict that figure could triple by the middle of this century.
Alzheimer’s exists in a spectrum of brain disorders that science is slowly starting to unravel.
Alzheimer’s has become the fourth-largest killer in the U.S., and it is the only one of those four still on the rise. The cost to care for America’s Alzheimer’s patients totals more than $200 billion a year. There is no cure, and scientists still have not found a drug that uniformly slows the imperceptible erosions.
Learning about the disease has immersed me in the mind-boggling world of neurology, emergency services, care-giving, support groups and well-meaning acquaintances, friends and fellow church members.
The prospects can be grim, as the books detail the telltale stages of the disease and the twists and turns that it can take. Yet Margaret points out the positive aspects to the friends and acquaintances we encounter. Unlike cancer, she notes, Alzheimer’s mercifully does not grip the patient in perpetual pain and heartache.
We have kept a tight hold on our faith. The good Lord has blessed us with miracle upon miracle as our circle of helpers and advisors has grown. Paramedics and police have been patient and caring when we’ve had to call on them time after time. The San Diego County Sheriff’s Department deserves high praise.
We have embraced many of the strategies that can be used to combat the disease’s progression. Margaret and I are battling to keep every neuron connected.
And, lately, we have found hope.
Some of that hope has come from the medicines that seem to help stave off symptoms. Other flashes have come from three sources that are in total agreement.
Two of them – a social worker and a speech / memory therapist – were briefly assigned to us through a home health agency.
The social worker, Isaac Ford Jr., recommended that I disregard the disease timelines that are spelled out in the books. There are no textbook cases, he stressed. Each case is different and everyone is unique.
“Institution should be a last resort,” he said. “Now is the time to live life to the fullest until the music stops.”
Kathleen MacNeil, who incorporates music in her speech and memory care specialty, offered us similar encouragement. She knows of several Alzheimer’s patients who have maintained an even keel for a decade or more.
“My job is to give you tools,” she said recently. “You’re doing a lot of neat things that will help you. You’re your own therapist.”
The last ray of hope came from a recent article in the Wall Street Journal. The piece gave splashes of “Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias” by Dr. Gayatri Devi, director of Park Avenue Neurology in New York.
Dr. Devi, who wrote the book as well as the newspaper piece, explains that many people wrongly view Alzheimer’s as “a one-way street to inexorable decline.” That image frequently bubbles to mind because people think of the severe cases, patients in advanced stages who may be mute or unable to communicate.
Dr. Devi views the disease as a disorder with a wide range of symptoms and responses to treatment and prognoses. Families, and even physicians, often make decisions based on fear rather than facts, the doctor wrote.
“Confused and unsure about what to expect, patients often lose confidence and begin to doubt their abilities, withdrawing into themselves. In permitting this to happen, we are doing our loved ones and society a disservice, depriving those who suffer from the disease years of pleasure, purpose and fulfillment.”
John Lennon once said: “Where there is life there is hope.” Margaret and I have both, and we pray you can draw from the same well of hope and faith when challenges surface in your life.