Why I'm Thankful for Alzheimer's...
Two years ago, I had to come face to face with Alzheimer's disease upon Mom's diagnosis. I had seen the disease from a distance when Mom cared for her mother. At that point, I was a college student who was pressed into visiting Grandma, who had dementia, at the nursing home during summers and breaks. Many years passed, dulling these memories. Professional duties and then taking graduate courses consumed many of my hours (and thoughts).
Then Mom was diagnosed with Alzheimer's in September 2005. Two difficult years later, Mom succumbed to Alzheimer's disease and Chronic Obstructive Pulmonary Disease (COPD) and I've been left to survey the aftermath of what happened.
And surprised as I am to report it, I have to say that I am happy to have spent these past two years in the company of Alzheimer's disease. I can hear many of you who are reading this sharepost now: "Dorian, you have lost your mind!" Please know that I never in a million years would wish this horrible disease upon my mother (or anyone else), but I believe that I am a changed person. In fact, I told someone that I actually find myself being a happier, more fulfilled person, due in large part to the lessons I've learned thanks to Alzheimer's disease over the past two years. Let me give you some examples.
Lesson #1: Learn to Stop and Watch the Dragonfly
One gift that I seem to have been given during my life is the ability to see "the Big Picture" and anticipate what will happen next. And yes, this gift has served me well not only with my professional career, but also with my caregiving duties when I had to anticipate what was going to happen in the fragmented day-to-day world that Mom inhabited after her diagnosis. But this gift also often meant that I found myself single-mindedly running from place to place and situation to situation, focused on trying to interpret the signs and determining what my next steps should be during fall 2005.
Yet as Mom's mental condition deteriorated, I found that I had to determine how to simplify. For instance, I increasingly had to carry more of the conversation during our regular visits. Mom could no longer grasp the "Big Picture" world where I tended to live; she couldn't even understand complex statements, instead looking puzzled until I would reframe my comment into a simple sentence.
I found that my attention turned by necessity to the little things in life so that I could tell stories to Mom. My stories might focus on the hummingbirds and butterflies that feasted on the nectar of the flowers located by my dining room window. Or it could be a story about the Yorkie puppy next door who would race around in delight whenever I would laugh at him. Or it could be the "fussing" that the cardinals did when I hadn't filled the birdfeeder.
While "researching" these stories so that I could tell them to Mom, I discovered that I was slowing down and living at the pace of the natural world (instead of the supersonic pace of everyday American life). Even during the weeks before Mom died, I found myself remaining in the moment. As I drove to the nursing home one afternoon during Mom's final two weeks in this world, I found myself waiting in a long line of cars halted by a red light. Prior to Alzheimer's, I would have spent this time pondering whatever thoughts were in my head and worrying about what I should be doing. And if I had done that, I would have missed seeing the dragonfly who continually danced in front of my front windshield. The dragonfly's entranced interest in the glare off the glass elicited a laugh and the realization that, despite Mom's declining health and the sorrow that might - and ultimately would - be awaiting me soon, life still has delightful experiences that balance the tragedy of Alzheimer's disease.
Lesson #2: Learn to Keep a Balance
Unfortunately, I have experienced burn-out several times in my career. I really don't want to relive that experience, especially after learning in the past few years about the impact that prolonged stress can have on one's long-term quality of life. With Mom's diagnosis, I faced the added pressure of ensuring that she received the proper care in addition to keeping up all aspects (mental, physical, emotional, spiritual, professional, and financial) of my own life afloat. And I was doing this balancing act alone for at least a year while my father took care of issues related to my parents' household in West Texas.
I also was aware that there was a "model" of caregiving set by Mom when she took care of Grandma. Mom went twice a day to see Grandma at the nursing home in order to make sure she ate properly. At face value, this seemed like the proper way to care for a loved one. Yet after thinking about this scenario, I realized that there were important differences. Mom was fortunate enough to have family members (my father and brother) who would back her up, whether it be making dinner or running the vacuum cleaner. Plus, my parents were small business owners, which, although being an all-consuming career, also provided Mom with the flexible schedule since she called the shots.
So after some trial and error, I figured out how I could make my own model of caregiving. I learned what balls I needed to juggle (Mom's care, professional duties). I also determined that I wanted to make my physical and emotional health a priority during Mom's final years. By deciding what those important balls were at this time in my life, I was able to make time for Mom and also to reorganize my life so that it was manageable. And as part of that reorganization, I made sure that I took time for myself (whether through a nap, an exercise class, or a healthy home-cooked meal) so that I could control the stress level and emerge after this odyssey with my physical health and emotional and mental well-being in tact.
Lesson #3: Getting a Chance to Think About Priorities
Helping Mom through Alzheimer's also provided me with an opportunity to think through what I want for the rest of my life. As I mentioned before and in previous shareposts, I was conditioned to focus on my professional life, often putting off personal pleasures because of a looming deadline or the possibility of the next big professional advancement.
So I was surprised to find that Alzheimer's has made me reflect upon what I want to use my limited time on this earth for. Over these past two years, Mom's health issues provided me with a new way to gauge what I want to do and what I need to do. And I am shocked to find that my professional dreams have been resized to fit comfortably into a more balanced life. Furthermore, the caregiving commitment that I made to Mom also gave me a gut check that helped me realize when I really want to say "no" to an offer as well as the impetus to say a wholehearted "yes" to situations that I might have been afraid of before.
These two years also made me realize that I want to be around people who embrace a lifestyle that includes both personal and professional passions, and who find ways to improve the human existence. And I find that I want to have the time and energy to become one of these people, to be present and available to celebrate the daily joys of life and to be supportive during the dark days that befall each of us.
Yes, Alzheimer's disease is tragic - it was my mother's worst nightmare come true - and it may loom in my future. But I emerged from Mom's battle thankful that I had the time and energy to spend with her, and that I have hopefully internalized these important lessons as I move forward with my own life.