Cultivating Strength and Compassion as Caregivers of Dementia Patients
Transcending The Happily Ever After Myth By, Dr. Linda Miles Dr. Linda Miles is a psychotherapist and author. Her latest book is Change your story Change your Brain. She lives and works in Florida with her husband who is in the late stages of dementia. Her articles on mental health have appeared in newspapers, such as the Boston Globe, Miami Herald and Wall Street Journal. She has also appeared on television outlets, including CNN, Fox News, ABC and NBC. Joseph Campbell wrote that "the purpose of life is to find joy amidst suffering." Successful couples manage to be happy together much of the time despite Life Challenges. Once upon a time, over two decades ago, my husband and I wrote a book together called The New Marriage: Transcending the Happily Ever After Myth. The main theme of our book was the ability to let go of myths about marriage and embrace reality—When We read fairytales to Merritt, the granddaughter, we changed the ending. Instead of saying the couple married "and lived happily ever after" we'd say, "they began the work of making a good and happy marriage." As a psychotherapist, I have been inspired by the work of Stephen Levine and his work with the terminally ill. He writes about "sacred spaciousness" so that patients and caregivers can make room in their minds for the pain and the grace of the moment. I now know firsthand how heartwarming and heartbreaking it is to care for a cherished family member suffering from a chronic condition. Robert, my beloved husband of 33 years, has advanced dementia. He often doesn't recognize me. Just today, he remarked to me, "You look familiar. I have seen you around here quite often. "He may not know me, but I know him. This is the last chapter of a long love story. Recently, we renewed our vows—a reminder and promise of togetherness till the end. It helps me find strength by seeking and creating moments of joy amidst suffering. One night before Christmas, when I walked into the bedroom, Robert looked up and told me he had seen me at work many times. He added that he found me smart and attractive and wanted to marry me. What his mind did not remember, his heart still knew. My heart still knows. His memory, in part, was true; we had worked together as colleagues at a mental health center decades ago. He could not remember that we were already married and had been for decades. I joyfully said yes to this second marriage proposal; we renewed our vows in the company of our family, with our pastor's son performing the ceremony. Robert could not stand, but his longtime friend supported him from his medical school days. So much grace surrounded us that night. One night after the vow renewal celebration, Robert seemed to know who I was and became protective. My husband had been healthy and worked as a psychiatrist for most of his life. He seemed to think he was protecting me because he told me that I needed to go find someone else because he was now "ugly and dumb." It hurt me that he would feel like that about himself, and I reassured him that I would never leave. With the help of the family and Hospice, we have been able to keep him at home. I am grateful that I am healthy and can care for him. My adult son saw the toll that caregiving alone was taking on me and offered to move his family from Virginia to help. Having his family here has brought so many moments of joy and opportunities to practice sacred spaciousness. Robert loves having family around. Merritt, the granddaughter we read about relationships, is now pregnant with a great-grandchild named after Robert. She calls weekly from Chicago. No matter where the conversation with Robert takes them, she sounds interested and responds appropriately. Recently, he believed that we were at a campground and she went with the story and ask him all about the tents. Later, I pretended to escort out a wild turkey that he imagined was in the room with us. I later laughed with the family, because there was no way I would get near a wild turkey! I live the lesson that humor can be like a gentle rain that carries away some pent-up tension. I also have good friends who understand my situation because they are also caregivers. I can call them at any hour to vent, share my feelings, and, finally, to laugh. Being chronically ill can be a heavy burden—too many people can attest to that. What fewer people mention is that caring for a chronically ill loved one takes its toll, too. The caretakers of those who have dementia or Alzheimer's are often referred to as the "second patient" because of the intense physical and emotional demands of this type of caretaking. It's easy to feel burned out, worn down, psychologically distressed, or even resentful when motivated by guilt, a sense of duty, social pressure, or greed. On the other hand, caregivers who combine duty with the desire to show loving-kindness and genuinely protect the person they care for are those who experience fewer negative emotions. Such caring is associated with positive feelings, positive brain chemicals, including oxytocin and dopamine, and the increased likelihood of reaching out to others for help and support. The National Institute of Health cites that the majority of caregivers enjoy the positive experiences that foster togetherness with their loved ones: shared activities, bonding, spiritual and personal growth, increased faith, and feelings of accomplishment and mastery. When duty and desire are aligned, there is increased fulfillment and reduced psychological distress. Caretakers of those with chronic conditions—just like chronic patients themselves—can individually become better or bitter based on their capacity for loving kindness toward themselves and others. A happy and sustainable relationship bypasses fairytale notions about marriage and happens when two people deal together with the vicissitudes of life. Although it takes work, resilience, faith, compassion, and the conscious choice to confront—and not run from—life's challenges. To overcome these challenges and find purpose in life, it is important to celebrate life together. I find many moments of light as a caregiver for my husband. And its life-affirming, hope-igniting, and heart-warming to pursue and celebrate love as this lasting light. It is easy to give and receive love when the going is easy, the sun is shining, our cares are few, and the romance is fresh. It is harder— fulfilling—to share love when the road is littered with challenges, the day has darkened, and time or trouble has made us (in the words of Yeats) feel old and grey and full of sleep. But that is where we find true love, the love that is consciously cultivated brings opportunities for transformation of the mind and spirit. As I write this, my husband peacefully sleeps, and the door is open to our wooded backyard on a beautiful day. I take time to mindfully experience the miracles around us and feel gratitude that the love of my life is still beside me. Dr. Linda Miles
