Published in the summer 2012 issue of MyLIFE magazine
AP Photo/Richard Stone, Downing Street
Recently I saw The Iron Lady, in which a brilliant Meryl Streep portrays former British Prime Minister Margaret Thatcher. The movie, through a sequence of cinematic vignettes, provides us with an amazing portrait of a truly strong-willed personality. It shows Ms. Thatcher’s rise to the position of prime minister, an office she held from 1979 through 1990, longer than any other British prime minister, and during that time, she presided with “an iron fist.” The movie also explores her struggle with Alzheimer’s disease (AD), exposing the reality that even The Iron Lady had no immunity against such a dreaded disease, one from which there is no escape—and for which there is no cure.
The movie spotlighted, for me, a personal remembrance of the immense tragedy this disease brings, not only to the person who has it, but also to family members and caretakers. Call it what you like, whatever makes you feel better—old age, dementia or Alzheimer’s disease—but whatever you call it, AD is a destructive disease. The very thought of a loved one being afflicted by AD is frightening. It is a disease that advances quickly and one that is not confined to the person who has it. It unleashes its cruelty upon family members, friends and many other people in the person’s life, gradually pulling them all into the fray.
In 1994, former President Ronald Reagan wrote a public letter announcing that he was diagnosed with Alzheimer’s. In 2004, the 40th president died from pneumonia, described by his office as a complication of Alzheimer’s. Photo by Ronald Reagan Library
Let me provide a bit of background: In 1901, Alois Alzheimer, a German psychiatrist and neuropathologist, identified the first case of what is now called Alzheimer’s disease in a 50-year-old woman. Today, about 30 million people worldwide have the disease, and nearly 35 percent of those people are here in the United States.
Former President Ronald Reagan, actor Charleton Heston and broadcaster Mike Wallace from 60 Minutes are among the prominent Americans who have succumbed to AD. And former Phoenix resident and singer/entertainer Glen Campbell is currently on a yearlong tour that he is calling his “Goodbye Tour,” having learned more than a year ago that he, too, has AD. The name of his tour is a play on a phrase that has become synonymous with the disease, “The Long Goodbye,” because it takes usually takes people who have the condition so long to pass away. On a side note, Campbell’s backup band includes his three youngest children, and I am happy to say that he is selling out his performances.
Glen Campbell and his family perform during “The Good Bye Tour” at Town Hall in New York – Photo by Chad Batka for The New York Times
The disease doesn’t discriminate based on a person’s nationality, gender, race or financial status. It seldom provides any advance warning to its intended mark, instead preferring to creep into the unsuspecting person’s brain, cleverly disguising itself as something it’s not. For those in their 50s, 60s or 70s, AD often “dresses up” as the early signs of old age. Even more unfortunate is that it invades the individual’s body years before it’s ever suspected, so that once it is diagnosed, the individual is already well behind the proverbial eight ball.
Simply stated, AD kidnaps one’s brain. Over time, it shuts down all of the body’s motor skills, memory and senses, rendering the body useless until it essentially shuts down altogether. Yes, it’s a treacherous disease that can make even an “Iron Lady” totally helpless as it wrests away one’s ability to control his or her life.
Legendary television personality Mike Wallace was a correspondent for CBS’s 60 Minutes from 1968 until 2006. In a 2002 interview with former First Lady Nancy Reagan, she revealed to Wallace that former President Ronald Reagan no longer recognized her because of his advanced Alzheimer’s disease. Unbeknownst to Wallace, he would receive a diagnosis of the same disease shortly thereafter. Photo by CBS/Peter Freed
For the more “fortunate” among us who will get the disease, AD will last between five and seven years. For those who are less fortunate, it could drag on well beyond 15 years. Either way, the damage it does to the individual, family and friends is cruel and devastating. The financial costs can force families into bankruptcy, and the healing process for those who must serve as caregivers can take years—and leaves deep scars that often can be remembered for a lifetime (as it has with me).
I can remember hearing my mother say that my dad was “a little anxious.” Or sometimes he would seem tired because he hadn’t slept well the night before. We didn’t know at the time that my father’s mind had already been invaded by AD, and that over time—in his case, seven gut-wrenching years—the disease would completely incapacitate this loving husband, father and grandfather.
In 1975, at the age of 69, having recently retired, my father was looking forward with great excitement to his “golden years,” relaxing, spending time at the lake cottage with his family and traveling with his wife of more than 50 years. Little did he know that his mind had already been abducted. When he could no longer handle the day-to-day madness, he left us in the winter of 1982. Despite my feelings of sadness and helplessness after he died, I can remember uttering the words “Thank God!” many, many times for finally letting my father out of his prison.
Not a single day goes by that I don’t think of my dad. As disturbing as that day was 30 years ago, what’s even more alarming is that there still is no cure for the disease that took his life. There isn’t even any medical evidence to support that any of the currently available medicines are effective in preventing AD.
Some studies suggest that maintaining a healthy brain involves eating a low-fat diet that includes fruits, vegetables and proteins that are rich in omega-3, such as tuna, salmon and halibut, coupled with a steady exercise routine. Some show that people who engage their mind by reading, learning languages, playing puzzles and otherwise staying mentally active, along with eating certain diets, could be less susceptible to the disease.
Other studies have shown that medical marijuana can be effective in inhibiting the progress of AD. It appears that the active ingredient in the drug, tetrahydrocannabinol, or THC, might prevent the formation of deposits in the brain that are associated with the disease. These same studies show that THC is more effective than commercially available drugs. My belief is that if there is a drug or other remedy that can be given to someone who is suffering from AD to help them die a more dignified death, it should be afforded to them without exception.
We are a population of labels, brands and individual opinions. But when it comes to a crisis at home, it should be all about what’s best for family. When a disease like AD comes knocking, one has to be mentally prepared for those tough, heart-wrenching decisions. When called upon to make those choices, one needs an open mind that remains neutral with regard to the family emotions, which are ever-present. Unfortunately, most of us in that situation are riddled with guilt, confusion and myriad other emotions, so making those decisions—let alone the right ones—is a difficult and daunting task.
CHARLES LESLIE COPLAND (1906 – 1982)
My father was a caring human being who went to church, worked hard, was a great provider and helped many others during his lifetime. He believed that not everyone was afforded the same opportunities in life—a message he was taught by his father, who had lived through the Great Depression. He never forgot how blessed he was, and he felt that helping others was the right thing to do.
He was the chief financial officer of a major international manufacturing firm, and he hardly ever used a calculator, instead doing most of the number crunching in his head. He served on numerous boards, supported local charities, was a nonsmoker, skied, walked, exercised and drank the occasional glass of sherry. He spoke multiple languages, read books, played puzzles, traveled and loved the arts, music and playing bridge.
I share this with you not to glorify him, but to illustrate my point that no one is impervious to AD. What was intended to be his “golden years” became one of my family’s darkest periods. The seven years after his condition was diagnosed saw every fiber and raw emotion within our family exposed. We struggled together, and we also struggled individually, as most every family touched by AD is guaranteed to experience.
Most prevention resources don’t offer much of a defense against this crippling disease. The bottom line is that nothing we do does much to combat AD, even though we can all hope that in the not-too-distant future a cure will be found.
In my mother’s case, the first tough decision came about a year after my dad’s condition was diagnosed, when she was suffering from chest pains and was told that she had angina. Thirty years ago, that was a very serious disease. The treatment plan called for triple by-pass heart surgery. When she asked the doctor what her chances were for a full recovery if she had the surgery, he told her the odds were “about 40 percent” in her favor. She then asked how long could she survive without the surgery, and he told her that with a daily dose of glycerin tablets, increasing discomfort and a less stressful life, she could expect to live about five years. Fifty years of marriage to her best friend and life-long soul mate left my mom with only one answer. She chose to forgo the surgery and instead care for her husband. Unfortunately, she did not outlive my father, passing away just one week short of the five years her doctor had predicted.
A word about guilt, confusion and similar emotions: Yes, these soon appear on the landscape of life for those who must grapple with AD, adding to the darkness of the disease and compounding the pressure of dealing with the situation. Family members and others have a tough time coping with the diagnosis, the affected person’s decline and the decisions that must be made, often feeling guilty about things they did, or did not do, or should have done—how they missed an anniversary, wedding or birthday celebration, or they said no when asked to attend to a special family event, or they declined to help as a caregiver. Meanwhile, they watch as a formerly energetic, fun-loving and caring family member recedes into his or her world of darkness, far removed from the life the rest of us are living.
For many, these negative emotions complicate the hard day-to-day decisions that have to be made. Everyone’s intentions are genuine, but when everyone’s own emotions are being stretched to the breaking point, it makes even the simplest actions or decisions extremely difficult. Denial can set in—it can’t be happening; we can fix it; the doctors are wrong; Dad looks fine, he’s just tired today—until AD advances to the next stage. Dad forgets the name of his beloved wife, and then your name, and then he asks where he is, when he’s sitting in his easy chair by the fireplace, as he has done for the last 35 years. He starts asking what day it is, who the children are. He’s found wandering in a store. Or a friend calls to say that he has been knocking at their front door for 10 minutes. And from there, it continues to go downhill.
10 KEY ISSUES THAT FAMILIES SHOULD ADDRESS REGARDING ALZHEIMER’S
- Adult children should openly discuss with their parents what the parents want done if AD becomes part of their future—before they can no longer give their opinion.
- Table the significant financial costs associated with AD. Private care can cost up to $100,000 per year.
- If AD is diagnosed, talk with someone who has already dealt with it. A great deal can be learned from other people’s personal experiences.
- If private care is an option, thoroughly vet every facility that is being considered.
- Talk to an attorney and accountant about legal and financial options.
- Make sure a living will is in place that clearly states the parents’ desires.
- Identify who in the family will have the power of attorney to decide on future medical and financial responsibilities.
- Make sure the affected individual’s documents, trusts, investments and banking information are current and accessible to the person with the power of attorney.
- Talk to family members and make sure they fully understand the huge emotional and physical stress the primary caregiver, who is usually the spouse, will endure.
- Have a family sit-down to discuss the individual responsibilities that each family member will be asked to take on.
Family members often withdraw or retreat into separate groups as they attempt to find answers to the multitude of questions that inevitably arise. “Is it better and easier if we make a group decision, because after all, there is safety in numbers, right? How and who should care for Dad/Mom? Should he/she stay at home, or should he/she be institutionalized? What’s it going to cost, and how are we going to pay for it?” The sparring that frequently takes place among and within these family factions, along with feelings of utter frustration and dwindling patience, can end up tearing the family apart.
Alzheimer’s robs individuals of their ability to think and function as normal human beings. For me, the thought of a family member or nurse having to force feed me through a tube, bathe me and change my diaper is humiliating, and I believe it would be an unnecessary burden to my family. I think most people with AD would probably choose to “free” themselves and those they love from the physical, emotional and financial hell of requiring a round-the-clock ward of caregivers. I think they would choose to take that final trip quickly rather than this torturous path. Unfortunately, by the time they are diagnosed with the disease, they no longer have the opportunity to make that call. It’s a decision that has to be made in advance.
In my case, I have already shared my feelings on the subject with my family. I need to pass on with dignity, without encumbering my wife, children or other family members with the “prison sentence” of caring for me. If I must pass from loving father, husband and grandfather to become a total stranger and invalid who requires 24/7 care, year after year, I must have the ability to make my own decision to “move on.” There are many things that government should steer clear of, and one’s right to make such a decision is certainly one of them.
Alzheimer’s disease is a subject that needs to be openly discussed among family members, with a focus on how to care for the affected person, because very little is talked about as to what the family or caregivers will experience. And if you have not been exposed to this life-altering experience, you cannot fathom what’s ahead for everyone involved.
Each family member will deal with AD differently, and it’s necessary to understand this. It’s important to accept that not all family members and relatives will be equally strong or capable of dealing with the disease in the same way. Taking care of the loved one becomes a total family effort in which everyone assumes the role they feel most comfortable taking. One person might not be able to give baths or feedings but is willing to take the individual with AD for a drive or for a short walk—which could take an hour or more, because people with AD don’t go anywhere very quickly, and if they don’t want to go at all, they don’t! I remember how it took my dad 30 minutes to walk down a short flight of stairs.
It’s also important that caregivers try not to get anxious. Alzheimer’s disease is an ever-changing process. Those who devote their time and participate in the giving of care are making a meaningful difference. The primary caregiver also needs close attention, as this role takes a huge toll. This person needs regular breaks of at least three to four hours every day and a day off each week, if at all possible, to have time to recharge. No one can underestimate the immense physical and mental fatigue, the stress and the emotional tug-of-war that are always present for the caregiver. Ironically, every family member is likely to become a caregiver to others in the family—it just seems to work out that way.
Caring for a loved one who has AD is a full-time job, and it’s exhausting. Family members need to stick together and stay focused, calm, caring and well rested. The best advice I can give is never to give up and always stay loving. Try to remember the good days, even though they will grow farther and farther apart. I firmly believe that from time to time, that glimmer of light does come back on from within the darkness, and it’s vitally important that your love and respect is also in the “on” position when that happens. Don’t let yourself be cheated out of those rare but truly great moments.
WEBSITES OF INTEREST
Alzheimer’s disease will only be identified and eliminated through expensive research efforts. Learn more or make a contribution to stamp out AD by visiting the Alzheimer’s Disease Research Foundation:
alzheimers-research.org
Alzheimer’s Association:
alz.org
National Institute on Aging: Caring for a Person with Alzheimer’s:
nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease
Alzheimer’s Foundation of America:
alzfdn.org
