My journey began at Commonpoint Queens with the help and direction of Alissa and Ellen, two social workers from the Sam Field Center’s Early Stage Dementia Care Program. It was through the help of these two special, caring, and dedicated women that I learned I had to dance in the rain in order to have peace and repair my relationship with my mother.
For more than ten years, my mother has suffered from a slow progression of what I call the ‘dementia storm.’ I promised my dying father to always care for my mother and when she could no longer live on her own, my husband and I brought her to live with us. My mother knows she is losing her memory and the frustration she feels along with her loss of independence is extremely difficult for her to accept. She says that these are the hardest times of her life.
Before going through this, I didn’t understand what Alzheimer’s takes from its victims and from their caretakers. Every day I was losing a piece of my mother until, in the blink of an eye, ten years went past. Caretaking took over my life. It became the storm taking control of me, and sadly, my marriage.
Luckily, Alissa and Ellen have been part of my mother’s life for more than seven of the past ten years as the leaders of the Early Stage Dementia Care Program. While my mother participates in the Early Stage group, I joined the dedicated caretaker support group. It took me close to six years before I opened up to the group that my mother’s dementia had become aggressive towards me. What I learned was that her disease didn’t allow her to express—in words—her anger and frustration of losing her caretaking role as my mother. It was incredibly difficult for her to have me witness her vulnerability.
That first opening-up led me to realize that my mother’s disease was not only strangling her world, it was also creating a large gap in my marriage and my world was growing smaller and smaller. Alissa and Ellen were an integral part of my understanding that life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.
They suggested a meeting for just my husband and I. They helped us take a hard look into our present situation and encouraged us to envision and create a life together after caretaking. We spoke about how we originally believed bringing my mother to live with us was the best solution, ultimately, it was not for us or for her. I began to learn how to dance in the rain instead of fighting the storm.
The three of us sat together and decided that my mother would move into assisted living. She says she, “is living a happy life just like a teenager in a place of my own.” My husband and I are glad to be dancing in the rain even in the shadow of my mother’s disease. Since my mother moved into her new home, we have repaired our relationship and now enjoy our time together. The negativity is gone.
If I can give one piece of advice to anyone caring for a loved one with dementia, learn to dance in the rain. Learn to accept change and embrace the storm, don’t fight it.