I awoke early this morning, long before the first blush of dawn and I lay in my bed thinking of the countless challenges that Nan and I faced together. Some were small. Some were monumental. Each struggle was an attempt to navigate the great rushing river of dementia. Together in our tiny boat called Hope we have traversed jagged rocks and whitewater so powerful that we were often rudderless, all the while holding firm in our belief that eventually we would come to rest among the calm reeds on the far bank. And this is where we are this morning, moored in a quiet spot where the waters are still and giant grasses quell the nearby torrents of worry and fear. Optimism and courage dwell along these shores, inspiring the wisdom and peace necessary to continue our journey. And here we sit, waiting to be pushed on by the soft winds of time hoping that the stormy gales of unhappiness lay far behind us.
The peace that I felt this morning is not that of a victorious conqueror. By now, I know all too well that dementia is a shifty opponent. I know that I cannot control every aspect of Nan’s life and that I am only experiencing a temporary lull in her symptoms. I know that new problems will arise soon. I know that her disease might stabilize or it might worsen. I know that someday critical physical ailments will overtake her body. I know that there is a possibility that at some point in the future she may become completely blank and unable to communicate with any of us. And yet for now at least, I am calm and at peace.
There is an old saying that I have learned to live by, “Just control the controllables.” I realized a long time ago that I cannot change what will eventually happen to Nan, even though God knows I have tried. In vain, I have attempted alter the course of her future. But I am always led back to my mission statement and the realization that I can only create moments of joy within the confines of her ever-shrinking world. No heroic act or incredible epiphany will propel Nan back in time to who she once was. At the end of the day, as in most life experiences, all I can control is my attitude. My frame of mind is my choice. Whether I decide to be positive or negative is for me to decide.
I am the filter through which Nan sees the world. My actions and attitudes reflect back to her how she should interpret everything in her life. If I strive to be kind, she will know that she is loved. If I appear strong and in control, she will know she is safe. If I choose to be positive, I will show her there is hope. We are two halves of a circle that begin and end with me.
Admittedly, at first it was difficult to maintain a positive outlook. I worked hard to remain positive whilst enduring her countless unstable behaviors. Sometimes dementia was the victor and a kind of helpless depression overtook me. These were hard days when I would brim with resentful anger when all I could do was walk away and begin again the next day. No matter how hard you try, no positive approach leads you in a straight line. Instead, it ebbs and flows as the circumstances of dementia change. It is during these difficult times that you must take a breath and value all of your achievements up until this point. Don’t compare your loved one’s behaviors against how they behaved yesterday, or how you hope that they will conduct themselves tomorrow. Instead, try to remain calm and give yourself credit for all the positive changes that you have been able to achieve. This situation is never solved and its future is never certain.
Typically when I have found when I am feeling especially low, it is because I have been focusing on the ravages of the disease and not on what I am able to do in order to counterbalance its hold on Nan. Once again, I am not controlling the controllables. I’ve temporarily diverted my attention away from my goal and am viewing her actions in the context of who she used to be. I forget that nothing is this life is permanent. I forget that we don’t have to understand everything that is happening to us in order to find happiness. During these times I mentally grab ahold of myself, and deliberately change the thoughts that are running through my head. Sometimes I redirect my thoughts saying affirming statements out loud. Sometimes a good night’s sleep does the trick. It is almost impossible to create positive thoughts when you are feeling emotionally and physically exhausted.
By deciding to remain positive, over time it has become a habit. For even with a diagnosis as horrific as dementia there are truths worth celebrating. And once I decided to open my eyes to all that remains, I began to see a multitude of tiny miracles swirling around Nan. I have witnessed more spontaneous demonstrations of kindness, understanding and spirit-filled behavior than I can count. Had I not been paying attention they may have passed by unnoticed. But they were there all along, hiding behind the distractions of my daily life, just waiting to be detected and appreciated. Even in the advanced stages of her disease, there is so much about Nan’s life to celebrate.
Nan still has the capacity to experience love and happiness.
Nan can still laugh and enjoy being with her family.
I still time have left to be with Nan.
Nan’s new reality, although limited, can still holds many wonders.
I have an opportunity to love Nan in the way that she has always loved me.
I know that Nan strives hard each day to remain engaged with the world around her.
Nan is loved by everyone she encounters.
By helping Nan I have become a better person.
Nan still has the capacity to enjoy life’s simple pleasures, like soft breezes and sunshine on her face.
Nan inspires the best of human behavior in the people that she meets.
There is a greater purpose for her survival. Her life has meaning and importance.
Wow. If you stop and think about it, these truths are pretty remarkable. In fact, they are awe inspiring. When I read down this list I find it difficult to be negative. So I tuck it in the back of mind so that I can draw upon it when I feel my positive attitude beginning to waver.