A Child of Dementia

Dementia is a cruel disease – stealing those we love from us slowly; step by step, memory by memory. It is heartbreaking to watch as someone you love disappears right before your eyes. Dementia is an insidious disease that starts slowly; forgetfulness that we chalk up to aging, over-scheduling or becoming distracted. We witness changes in personality - the one we love has irrational outbursts, periods of anxiety or depression, or alienates themselves. This disease leads our loved one and us down a slippery slope if we don’t understand the path. 

What is dementia? Is it a way for someone to transition to the next phase slowly, as I have been told? Is it a way for someone to relinquish life and the challenges it often brings? Is it a form of denial? Is it a medical disease? I am not sure of the answer. I only know it is a difficult journey.

I have watched my mother slip away before my eyes, beginning with forgetfulness and accidents, which led to concerns over her physical safety. It led me to the decision to take away her ability to drive, which was hard for both of us. It led to my sister and I taking over the responsibilities for her day-to-day care, including all financial and healthcare decisions. The decisions we had to make and still have to make are complicated, life altering and important. We do not take them lightly and we always ask each other what we would want in each circumstance. I watched my once fiercely independent mother who had an active social life and job as an artist and teacher become relegated to her home with limited outings and the need for twenty-four hour assistance. The people that we have encountered to help us with her care have been angels that were sent to us, I am sure. We would not have been able to provide the excellent care she has received without these individuals who were often presented to us just when we needed them. I know that is no coincidence and for that, I am forever grateful.

I feel the loss of my mother deeply. Although we had a tenuous relationship while I was growing up, the birth of my children brought us closer and I have to come to appreciate and respect her many wonderful qualities. She is an amazing mother, grandmother, sister and friend.

Dementia changes things; that cannot be disputed. However, we can change as well to adapt to the new relationship. But could this circumstance hold gifts for us that we may have overlooked? The ability to care for someone we love, the opportunity to make decisions with integrity and to focus our attention on what really matters in life are presented to us. Will we view this as an opportunity for our growth, a way to deepen our current level of love and compassion, and to practice patience, understanding and tolerance? This is where our choice lies, as well as our power. This is our opportunity to turn the experience from a painful one into a beautiful one, letting go of what was and accepting what is with the gifts and treasures we now choose to see. Does that mean it is neither hard nor heartbreaking? No, however our power lies in the way we approach all of the circumstances in our life and this one is no different.

The obstacles in our lives are gifts; ways to learn and grow, push ourselves out of our comfort zones, and to demonstrate who we really are beneath what life has shown us. A diagnosis of dementia for a loved one is just such an opportunity. It is important, though, to experience the sadness, loss, feelings of abandonment, fear, anger, and guilt this process brings; they are normal and necessary to feel as we let them pass through on our way to love and acceptance.

The essence of our loved one is still there, just in different form. If we look closely and are patient, we will find it. We can meet every circumstance in our life with love, for ourselves and for others. This one is no different. We have a choice and this is where our power lies.

Am I a child of dementia? Maybe, but more importantly, I am a child of Camille: a soft-spoken, sensitive, kind, and loving soul, an exceptional artist and teacher, the most wonderful grandmother any child could ask for and a mother that is deeply loved. I love you, mom.