Excerpt from A Deeper Perspective On Alzheimer’s and other Dementias: Practical Tools with Spiritual Insights
by Megan Carnarius, RN, NHA, LMT
In this edited excerpt from her book Megan Carnarius advocates for a new perspective of Alzheimer’s disease and finds something positive in the diagnosis for both the patient and their loved ones…..
Alzheimer’s as a Way of Living More Than One Life Experience Within a Lifetime
Let me introduce you to a few exceptional individuals. C. completed her doctorate in Divinity at age 66. L. ran his own business successfully for many years and had degrees in Mathematics, Music, and Law. R. was a brilliant physicist and hung out most of his career with Nobel Laureates. J. was a marathon runner and emeritus professor at two leading universities. D. helped create DOS for computers. W. was a top cancer surgeon.
I have had the good fortune in my nursing career to work with geniuses, linguists, deans, doctors, philosophers, creative thinkers, and artists. They were individuals who had reached incredible personal heights in their careers and their lives, and were either schooled in the traditional way or in the school of hard knocks. All have Alzheimer’s or other dementias in common, so clearly this does not support the findings that we can avoid dementia by exercising our brains. These folks were using every extra neural pathway possible. What does this mean? It raises some interesting questions.
Most people recognize President Ronald Reagan’s name and know his story. This man had a long and successful career in the public eye, from acting to politics, and made a contribution to the field of Alzheimer’s disease by letting the nation know he was afflicted with it. Prior to this, several other celebrities had acknowledged that they suffered from it, but it was Ronald Reagan who made the biggest impact.
Early in 1990, in my capacity as a volunteer for the Alzheimer’s Association, I was asked to host a booth at a local health fair, an annual event attended by hundreds of people. Other organizations were set up nearby—the American Heart Association, the American Cancer Association, an audiologist, and so on—and I brought balloons and flowers and had a festive-looking table with fliers and handouts.
Let me tell you what happened. I stood there for seven hours cheerfully greeting people as they passed, but everyone was giving my table a wide berth, as if walking close to it would somehow put them at risk for “catching” Alzheimer’s. Only four people actually approached my table all day. The first said, “Oh, my God! What a horrible disease!” and quickly moved on to the next table. The next said, “I know I have it. I can’t remember names,” and when I asked if she had ever been able to remember names, she said “NO, but I know I have it!” and quickly rushed on. The other two people actually had a loved one with the disease whom they were caring for and were already in contact with the Alzheimer’s Association.
At the end of the day, I was feeling somewhat dejected as I was putting my items away, when a woman approached me from the American Cancer Association table. She said, “Don’t worry. They all used to treat us and our booth that way. People were very afraid of even saying the word ‘cancer.’ They thought it was a death sentence, and when someone got diagnosed they often wouldn’t tell anyone except the closest person to them—not their children, not coworkers. Now people are not as afraid and realize there can be success stories. Maybe, someday, that will happen with Alzheimer’s, too.”
When Ronald Reagan was diagnosed with Alzheimer’s, people knew the breadth of the life he had led and, with occasional updates from his wife, followed his illness. Nancy Reagan also published a book about their love story and some of the daily notes he had written her throughout their marriage. But what happens sometimes when an individual gets the diagnosis is that there is a feeling of shame and dismissal. “Oh, that is such a shame. They had such a great life.” It almost sounds as if the life were wasted because it ended like this.
When it comes to dying, some people fantasize about going to bed and putting their slippers neatly together, pulling the covers up, and just not waking up the next morning. Other folks fantasize about doing something they love, then falling over dead. It might be startling to the rest of the people involved in whatever activity it is, but often mourners come to the conclusion that this is also a great way to go. Other individuals live one kind of extreme life and then, through some kind of accident or injury, experience the opposite extreme: for example, Olympic athletes at the peak of their physical abilities or NFL football players who suddenly become paralyzed or years later suffer dementia.
When someone takes the experience by the horns and fully engage it instead of avoiding it, something fundamentally shifts in our perception of the situation and also typically how the person will speak about it. They are not a victim anymore. They are able to say honestly, “Yes, I wished this never happened, but I am now aware of. . .” Or, “I understand this. . .” Or, “I believe this. . . and would not have had these insights had I not had these experiences.”
I believe it is easier for us to see the blessings in certain situations with positive outcomes, as in cases when an individual comes into this life and it is quickly apparent they have certain gifts and talents, attributes which the circumstances they are born into also nurture. An example of this would be footballer John Elway. He was born into a family that loved football, and his father was a football coach. By the time, Elway was two he was throwing balls with uncanny accuracy, and his mother remarked that even as a child, he could hit anything they identified as a target. This skill kept growing, and as his life unfolded, he became one of the most renowned NFL quarterbacks of our time. Some people are child prodigies whose stories have come down to us through history, such as Mozart. We wonder, how was it possible that this young boy had complete sonatas rolling off his fingers at the age of 13?
In these examples, it is easy to find ourselves saying, “He was destined to do this.” In conventional thinking, when someone’s life has reached a pinnacle and then something happens to make it go completely in an opposite direction, we tend to judge their life as a failure. What I see, though, is the totality of a life experience—everything that happens is part of our life history, not just selected pieces. It may represent a deeper desire at the level of the soul that with our limited perspective, we cannot understand. Because the Alzheimer’s journey renders the person unable to communicate their internal experience, it is viewed as wasted time—indeed, to all outward appearances, Alzheimer’s seems to consist of accumulating losses and the inability to function in line with “normal” realities.
But what if this is a rich, deeply meaningful period in the person’s life and their understanding of their innermost aspect of themselves? What if it is part of a larger plan, their destiny? What if they are not a victim? What if their essence has been working in this life on the use of mind, the use of the brain, and now they are experiencing vistas and possibilities of this organ that defy description and cannot be conveyed to others? What if the last years of their life are registering on their souls, and that memory has nothing to do with whether they are whole and intact, but experiencing every moment of it, released from their own conventions?
No one in their day-to-day consciousness wants Alzheimer’s. That is not what I am suggesting. No one did anything bad to get it, and people diagnosed with the disease are doing the best they can and also wish this were not happening to them. No matter whether you have lived a full and amazing life or a long and modest life, you may still get Alzheimer’s. So what is happening?
I believe the soul is whole and intact and busy gathering experiences, learning from this additional toil at the end of life. This is not wasted experience. The soul is busy, busy, busy. This is especially true in situations where there has been excellence in the area of mind or use of the brain. It feels to me that the person is discovering something else by having the experience of opposites. To be very cognitively astute, to use the brain and find self-definition through the use of mind is very normal. _There is also an element of seduction in it. If we are truly authentic, we recognize that our physical package changes over time. We recognize that if we define ourselves according to how we looked at 20 years of age we would spend the rest of our life disappointed.
How do we evaluate a life? How do we assess a lifetime and say it was worthy, it was good? As I said earlier, what I hear sometimes in the tone of the statement “Isn’t it a shame he or she got Alzheimer’s” is that the disease has made the person’s whole life null and void. Are we so materialistic that the mind and the brain are thought of as one thing representing the whole person?
We don’t feel that way about the heart. We have all these feelings, these emotions, and we say things about our hearts. But typically we don’t feel these emotions are literally in the cellular tissue of our heart. When someone has survived a heart attack, we don’t say, “Oh, what a shame. He was such a loving and kind person,” as if the heart attack stops that kind of emotional expression. Yet our chest swells with feelings, our hearts pound with anxiety or the rush of joy. How can someone have a heart transplant and not be squeamish that all their feelings are going to leave them and the feelings of another are going to invade their system? We know that is foolish. Yet we do not feel that way about our brains, our memories, and the use of our minds.
If we need to look for an additional blessing, many individuals with Alzheimer’s attained all the outward hallmarks of success that society expects of us. They grew up, completed schooling, held jobs, had careers, met others they could share dreams and a life with, raised families, had hobbies and interests, volunteered, mentored others, and shared their wisdom and humanity.
This brings me back to Ronald Reagan. What was so touching to me after his death was the full state funeral that was held, befitting his status as a former US President, yet in the minds of many members of the public at odds with who he had been in the final decade of his life due to Alzheimer’s disease. Folks who might not have normally thought about it found themselves thinking about what it must have been like for this man who had been involved in so many life experiences yet could no longer consciously recall them. Because people were so familiar with stories about Reagan, this could not be so easily dismissed. It was a breakthrough to have news media ask about the status of Reagan’s dementia in the last years and months, and for the public to engage in a dialogue about this difficult process. It really helped to bring this disease out into the open and not be treated like the leprosy of our time. To have the entire country stop for a moment to observe the passing of a life—a life full of many experiences, including Alzheimer’s—and to have that person honored for the entirety of their life was a final tribute to all people living with Alzheimer’s disease.
Megan Carnarius is a registered nurse (RN), licensed nursing home administrator (NHA), licensed massage therapist (LMT). She is the executive director for Balfour Cherrywood Village, a secure memory care, assisted living residence. She also provides training in massage and aromatherapy for caregivers to draw upon in their care of individuals with dementia. Megan Carnarius lives in Boulder, Colorado. www.megancarnarius.com