VOICES: The Unexpected Gifts of Dementia Caregiving

Linda Pruden is the author of “From Fear to Peace: Growing Spiritually as a Dementia Caregiver” a spiritual memoir, love story, and caregiver’s guide designed to reveal how obstacles in life can become the power behind growth toward unconditional love, peace, and joy.

When my husband, Rob, was diagnosed with dementia my world of hope collapsed, and I fell into fear-based living. I read books, listened to podcasts, and found a list of ‘what to dos’ to help him. I was told to take care of myself, but what did that mean? What was I to do? 

I noticed that although sad, there was a peace that Rob emitted. As my world was collapsing, I asked my spiritual husband what he thought our dementia journey was about. He shared his belief that dementia was an opportunity for us to grow spiritually and emotionally, as gifts come through challenges. This purpose of growth for both of us directly contradicted all I read or heard others say that lay ahead of us. I was taught to believe that my caregiver role was a journey of service through sacrifice: my service, my sacrifice. 

As I continued to care for Rob, I felt myself slipping away. I was determined not to become another caregiver statistic. I needed to find the gifts embedded in our journey; gifts Rob firmly believed were there to help us both become beacons of light. To help me find the rainbow gifts hidden within the thunderstorm of caregiving, I revisited the 19 spiritual insights I had discovered earlier in my life; insights that helped me with easier trials. 

As I did so, I went from fear-based living to the peaceful living I sought. I grew both emotionally as well as spiritually by taking back the power I had always given to others. Before being a caregiver, I was entrenched in people-pleasing ways. Lack of self-worth was behind my actions. The trauma of caregiving forced me to reclaim my personal power. Today I can say that being my husband’s caregiver made me a better, more authentic person. I learned new ways of seeing the world that transformed my life. 

A few of the gifts I found while caring for Rob:

• Rob always wanted to be near me. When he watched television, I sat beside him and answered emails, talked to friends, or read. One day I got the message to set aside my distractions and enter Rob’s world of being. I put away my phone and computer, held his hand, and laid my head on his shoulder. All worldly thoughts evaporated as I entered Rob’s world of being solely in the moment. Now alone, I can be fully present in the moment — a gift for which I am grateful.
• Having always walked merely for exercise, walking with Rob revealed a new world of wonder. The trees, the birds, the clouds all were seen with appreciation and awe through Rob’s dementia-induced, childish eyes. Through my walks with him, I learned to embrace nature in a new, more awe-struck way. Today I walk with gratitude for the nature that surrounds me — a gift for which I am grateful.
• I had always put others’ needs before my own, including my husband’s. Doing so as a caregiver, though, was exhausting and I felt myself slipping away. One day I got a message to paint the rooms in our home. Honoring that voice inside, I painted each room in our home a color I alone chose. I felt the essence of me returning with each room I painted in a fairy color. Feeling Linda-like again, I put on 70’s music and danced. As I did so, Rob joined me in the kitchen and, for the first time in our marriage, we danced together. From that day on, every time I felt overwhelmed, or Rob got anxious, I put on music and together we danced. Reclaiming me helped Rob. I am a more authentic person today by embracing who I am — a gift for which I am grateful.
• Any minor frustration directed at Rob’s actions set him off. So typical of how I had always conducted my life, I buried all my negative emotions behind a smile. One day I released the full force of my pent-up emotions on our son. It was obvious; I needed a better outlet for my frustrations if we were to survive. In total frustration with Rob’s urinating on our porch, I unleashed a 4-letter word beginning with ‘f’ that I had never uttered before. Not seeing my word as an attack on him, Rob did not react to this release of frustration. I learned the benefit of not only swearing, but of releasing emotions before they built up. I now honor all my emotions, even those perceived as negative — a gift for which I am grateful.

Unconditional love of self, to me, is the goal of life that, once achieved, allows a person to fully accept not only themselves but also others, thereby welcoming love, peace, and joy to flourish in their lives. It took caring for my husband for me to finally honor all aspects of who I am. 

I am convinced that we are not victims in life but instead are being presented with opportunities that help us grow toward personal empowerment. It took the trauma of caring for Rob for me to become authentically me. Gaining strength through vulnerability is something I learned over the period of years I took care of him. 

My question to you, reader, is what gifts can you find in your journey as a caregiver to make you a more authentic you? The rainbow gifts are waiting to be revealed through the thunderstorms you encounter.