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.

Living The Life We Envision


There is excitement in envisioning a life of our choosing. It is enjoyable to imagine how exciting each day could become if we lived it following our purpose, our intention for being here at this place and time. But at the same time, we doubt how we can do this when we have obligations and responsibilities. People are counting on us, organizations need us, and things might just fall apart if we checked out and did our own thing. But what about us? What about our soul, our core inner self that is calling out for us to hear it – to follow our dreams and passions? 
 
There is a balance we are seeking – where we can care for our loved ones and organizations we care about - without sacrificing our own happiness. Living a life of obligation and duty makes us feel irritable and disconnected. Even the shine on our halo does not distract us from our misery. We have to be true to ourselves and sometimes that means moving out of our comfort zone.  This may make us and others uncomfortable in the process. At times, we have to allow ourselves to feel this discomfort – to sit with this uneasiness – and pass through it to something grander. Living a life of mediocrity and obligation is not what we were intended for. We were meant to nourish our talents and to share them with a world that so desperately needs them. 

The decision to pursue what you love and what you are here to do takes courage and determination. Sometimes, you have to force yourself to place one foot in front of the other as you make decisions that terrify you. Writing a book has been exciting but has also led me to places where sharing my vulnerability was very uncomfortable. A larger part of me, though, knew it was what I needed to do. Those struggles, the uncomfortable feelings, are part of the process, part of our growth. If the process were easy, it wouldn’t mean so much when we got to where we want to be.

Forgiveness


Forgiveness is a complicated concept. Often, we hold on so tightly to the idea of being right.  It seems as if it is an impossible hurdle to move to the state of forgiving another for not being who we think they should be. Even though we are not happy in this place, we would rather dig our heels in than move to a place of acceptance about it.

The concept of forgiveness surfaces so often in family settings. We judge each other harshly, not realizing our own happiness is held hostage because of this. We don’t give in and won’t let go because we hold steadfastly to the concept of being right. This happens with our parents, our siblings and our children on many occasions. Even if we don’t agree with the actions of another, our judgment of them and consequent suppression of our love puts us in a negative state.

We all do the best we can with the knowledge and skill we have at the time, however others may fall short of our expectations as well as their own potential. It is a fact that there are many relationships within families that can be better. Sometimes, members are treated unfairly, even cruelly. But what we have to realize is that someone cannot give us what he or she does not possess.

Operating from an unforgiving space only perpetuates what occurred and also places our power in another’s hands. We get so wrapped up in the rights and wrongs of what occurred, that we remain stuck there and it is not good for any of us. When we try to view the situation with detachment and understand we have a choice about how to approach it, we recognize this is where our power lies. If we let our judgment control our thoughts, weigh on our mind, and permeate our system; it will still direct our life in a negative way – even if we don’t utter a word about it.

Acknowledging our feelings about what happened, accepting them, and choosing to release them gives us the peace we seek. Forgiveness doesn’t mean the person was right or even that we have to spend time with them. It means that our energy is no longer tied up with theirs. It just gives us the peace of mind we want when we accept what is, rather than what should be.

Sometimes, all it takes is a statement that says we are willing to forgive - even if we don’t know how it could ever happen. That declaration opens the door that was once sealed shut and allows a miracle to enter and take place.