With the graying of America, more of us are at risk for Alzheimer’s, the cruel disease which robs us of our loved ones not once, but twice.
We knew long before the doctors knew that something terribly wrong was happening to our beloved wife and mother before neurologists diagnosed her with Alzheimer’s, the terminal disease that takes her away from us not only once but again in the months or years ahead.
It all began innocently enough eight years ago when she could no longer handle her computer and checkbook. Slowly it progressed to the point where our beloved wife and mother would come home to the wrong apartment and be lead to her own door by a kind neighbor. The disease played tricks on her. She became afraid to undress for bed before the TV, afraid that newscasters were spying on her. She lost our portable home phone which we found in her lingerie drawer. Our prized ivy plant she stuffed down the kitchen disposal unit.
Ever present was her frustration when she couldn’t finish a sentence or remember a word.
This accomplished woman whose poetry was published, who sold her oil paintings, and whose songs were broadcast – all while raising four children and traveling around the world with her journalist husband – now could no longer remember his name or even her own.
It was not her fault. In younger, healthy people, all sensations, movements, thoughts, memories and feelings are the result of signals that pass through billions of nerve cells, or neurons in the brain. Toxic chemicals cause plaques and tangles of neurons which lose their ability to communicate. And as neurons die, the brain shrinks, starting with the part most important to learning and memory. People begin to experience that memory loss, impaired decision making and language problems. As more neurons die, the patient loses the ability to think, make decisions, remember and function independently.
While deaths from other major causes have decreased dramatically, deaths from Alzheimer’s has increased 71% since 2000, according to the Alzheimer’s Association. It is the only cause of death in the top ten in America that cannot be prevented, cured or even slowed down.
The disease has no favorites. It attacks young and old, men or women, people of any ethnicity. Every 67 seconds, someone in the United States develops the disease.
Parkinson’s more often accompanies Alzheimer’s and now this beautiful woman, who taught our four children their first steps, can no longer walk herself or even stand. And if all that wasn’t enough, she also contracted coronavirus, thanks to the rehab home which failed to properly quarantine 45 other patients with the disease. Happily, she recovered from this within a month, but her husband, who visited her daily, has still been prohibited from entering the home for the past six months.
I grieved for Venera (Vinnie) as she struggled with test after test by a litany of neurologists and endured clinical trial medications for months to no avail as she gradually slipped away from me.
I can’t begin to express the love and empathy I had for her when she fell and broke her hip one Easter morning. That operation was not to be her last. She came home on a walker but soon abandoned it for our bed. She also began eating less of her meals until she lost 49 of her 138 pounds.
An ambulance transported her to the emergency room of a local hospital for the bad news. Not only was my dear wife losing her speech but doctors diagnosed her with a fistula. Her colon had invaded her bladder, causing a huge infection that took days of heavy doses of antibiotics to cure.
They wanted to perform a colostomy operation. A specialist convinced us she was strong enough to endure such a procedure and so we sweated out a four-hour operation and four hours more in the recovery room. When they returned her to her bed by nightfall she was burdened with a colostomy bag and a feeding tube into her stomach.
Oh how we prayed for her. This genteel lady never complained. She was never angry with me or our children but only with herself. I believe she was aware of her erratic behavior but was unable to say what was wrong.
We selected a living care center that would tend to Vinnie’s specific needs. My precious wife has long since forgotten my name but knew who I was. Sometimes she had moments of clarity and would greet me with open arms and say “I love you.” Other times she would state clearly, “I have something to tell you” but again couldn’t tell me what it was. Otherwise she spoke gibberish.
It is heartbreaking when she cries and holds onto me when I must leave for my bus. I can’t sleep in my own bed without her in it. I get up nightly to sit in her favorite chair and read her poetry or speak to her portraits. Yes, and sometimes I cry.
Perhaps the thing I miss most is sharing our memories together. When I lost my birth family, I missed sharing our memories with them. When I told this to Vinnie before her illness, she said “That’s alright, we’ll make new memories together.” We did indeed over our 69 years together, but now I am alone to re-live them.
No man has loved a woman more than I love my wife, not Romeo for Juliet, not Marc Antony for Cleopatra, nobody. I recently collaborated with Elizabeth Browning to tell Vinnie how much I love her. She can no longer read so I read this to her on her last birthday:
“How do I love you? Let me count the ways. I love you to the depth and breadth and height my soul can reach. I love you to the level of every day’s heartache when I must leave you. I love you freely, in sickness and in health, as I vowed to you when we were wed. I love you purely, from your 19th birthday to this special day, your 91st birthday. I love you with the breadth, smiles and tears of all of my life, and if God so chooses, I shall love you even more when he calls us home.”
I don’t know when we will lose her for the second and final time so I am spending as much time with her as I can. I don’t know what I will do when she passes. I can’t live very long without her. I can’t live without my soul. When I told this to my doctor at the Veterans Administration, she put me on suicide watch and gave me depression medication. I told her that wasn’t necessary for my religion prohibits such behavior. I also have the children I love and I’ll probably die of a broken heart anyway.
I already suffer from PTSD, thanks to the Japanese suicide planes attacking our ships in Admiral Halsey’s Third Fleet. I also suffer from asbestosis from my time on two battleships and a cruiser as a Petty Officer-Radarman in World War II.
But I am resilient and almost immune to pain after seeing my shipmates die, after the mysterious death of my 42-year-old sister, and the death of my brother when he went down with the USS Arizona during the sneak attack on Pearl Harbor. Nearly 3,000 sailors, Marines and airmen were killed on that one day.
But that’s nothing compared to the millions of Alzheimer’s patients earmarked for death by this dreaded disease. Will the government fund enough money for researchers to finally discover some medicines and treatments that actually work?
We are in a crisis mode with this disease. We must find a cure for our parents, sons and daughters. Let us call our representatives and senators to learn what they are doing about this crisis. Let us tell our stories, shout out the urgent need for funding and focused research to provide meaningful options. And let’s not forget the caregivers suffering with their patients, providing the thankless work, sweat and tears to give their patients meaningful lives.
Anthony Galli lives in Pennington. He has authored four books, including two on the Civil War exploits of his great-grandfather with his Fourth Pennsylvania Cavalry in Virginia and Gettysburg. He has worked for UPI, TIME magazine and Sports Illustrated with hundreds of his bylined articles appearing in magazines and newspapers across the country. He is a U.S. Navy veteran of World War II.