25: Fear and Self-Pity Are My Mortal Enemies

25: Fear and Self-Pity Are My Mortal Enemies

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

Fear and Self-Pity Are My Mortal Enemies

Never ask, “What reason do I have to be happy?” Instead ask, “To what purpose can I attach my happiness?”

~Robert Brault, www.robertbrault.com

I am powerless over Alzheimer’s. There is nothing I can do to change the fact that the man I love has this horrible disease. There is nothing I can do to slow the progression or alter the fact that his essence was lost to me so long ago. There is nothing I can do to change the fact that our life and our daughter’s life will never be what he or she or I had dreamed.

This realization, the acceptance of the bitter truth, was a pivotal point for me. It marked the moment in my life when I made the decision to live with this disease and its effect on my world. I call this moment “coming out of the cave.”

How I got to this point was through education and experience. The education gave me a scientific understanding of what I was dealing with, the legal and financial issues at hand, and the effect this disease and its inevitable progression would have on my immediate household. Unfortunately, the experience was the defeat I found at every turn early on. Denial and anger wouldn’t make this disease go away. My depression only made it harder to cope. My bargaining with God or anyone else I hoped could change it was futile.

At first I was crushed. But then the challenge became clear: What was I to do to help my husband make his last chapter a grand finale? How would I nurture myself to maintain the physical, emotional, and intellectual strength to care for and provide for my family? How was I to guide our daughter, age three at the time of diagnosis, toward becoming a strong and capable young woman with as little baggage as possible? I don’t know why, but I laugh as I write that part. I find it funny that early on I was so focused on getting rid of whatever would make her baggage too large a burden.

I’m not positive that I did it all in the best order, but I did it as it came to me, as the opportunities unfolded. And that day of my awakening, I also made the decision that I feel is the most important one of all. I decided to simply do my best. And, I decided that I would try with all my might not to judge the results of my efforts.

We built a fellowship. We connected with others affected by this disease. We shared our story with individuals and with groups. The effect was exhilarating. I have always said that when you share bad stuff it gets smaller and when you share good stuff it gets bigger. In Jay’s face I saw a new level of comfort as he chatted with others who were also having difficulty speaking, remembering words, and organizing thoughts. He started to laugh more. I met some caregivers who were ahead of me, and in them I saw proof that survival was possible. In them I found new ways of coping. With them I found humor in the situations that previously infuriated me or pushed me to tears.

We helped others. In the people we met who were a bit behind us on this road we found proof that we were managing better. We found new self-esteem in guiding them and watching them grow. We accepted with true gratitude all opportunities to share, to help create or improve programs, to change legal roadblocks, or to raise awareness. We opened our hearts and made our struggle known so others would not feel shame in doing so, too. And privately we laughed about how hilarious it was that we got so much attention since all we knew was our own experience. My favorite memories of Jay are when he would joke about how little we knew and what would happen when everyone found out. But his knowledge that we had so little to offer never made him too afraid to accept an opportunity to give back.

We fine-tuned our faith. And I don’t mean organized religion or spirituality. I mean the simple faith that everything happens for a reason. The faith that all is exactly as it should be. Our faith was multiplied by the coincidences we began to see around us. Like when I was buying a dress for an event, and I suddenly burst into tears. I explained to the dismayed salesperson that my husband had Alzheimer’s, he was so young, and I was buying this dress to travel without him to an event. There I would be honored for my support of his efforts to make a difference. She stared at me in disbelief, and through tears told me her sister had been declining with what her family was beginning to believe was dementia. I was able to suggest a few resources to start with and then I bought the dress and we hugged goodbye. My trust that everything would be okay, that we would be okay, grew as random opportunities to give or receive support popped up. I saw that if my eyes were open to others, I would be shown the way to make it all work.

Lastly, I continually assess my attitude and behavior, looking for fear and self-pity. Fear paralyzes me and convinces me that I will not survive. That breeds self-pity, which blocks my ability to effectively solve the problems that arise. Self-pity makes me play the role of victim, which pushes me away from my family and friends, my critical support system. The more I fear and the more I pity myself, the more self-seeking I become in all my actions. Self-seeking causes behavior that negatively impacts my self-esteem. Poor self-esteem makes me depressed and tired. Fatigue affects my ability to do what I need to do, and fear pops up again. It all creates stress, and stress kills caregivers. It is a vicious cycle, hence my mantra that fear and self-pity are my mortal enemies.

So there you have it. I became aware of the truth. I accepted it for what it was. I chose to make the best of it in any way I saw available. And what did I get, honestly? I got the gift of self. The gift of an insight into what makes me happy. I didn’t get my husband back, but I got myself.

~Laura Suihkonen Jones

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