After delivering a presentation in Ohio recently, I received a thank-you email from someone who didn’t attend the event.
Peggy’s 93-year-old mother was recently diagnosed with dementia, so she had hoped to make it to the event, where I shared my story about my father’s dementia diagnosis, my mother’s role as his primary caregiver and her untimely death. Peggy’s mother experienced two bad falls in the span of three weeks, causing bruises but thankfully, no bone breaks. She was lucky. In fact, people with dementia fall more frequently than others, as I wrote in a recent blog. The latest episode prevented Peggy from attending my talk, but it did stop her from finding the help she needed.
Peggy sent me her email after reading through my book, A Loving Approach to Dementia Care. Her message tugged at my heartstrings and I would like to share some of what she said with you.
My heart hurts every time I tell caregivers this truth: dementia is something we cannot stop, fix or change. This notion is the toughest pill to swallow. As a caregiver, Peggy is setting herself up for success by realizing the change must come from within ourselves, not our loved ones.
As I mentioned, my mother passed away after suffering a heart attack while caring for my father. He was diagnosed with dementia several years into the retired life. My mother’s instinct to always care for others got the best of her as she routinely declined our family’s help. My mother died well before her time, and I believe her death could have been prevented with the proper caregiving education. That’s why I am here – to help others transform the stresses and obstacles of dementia into something positive, meaningful and fulfilling.
Asking for help is a pillar of being “dementia aware.” I cannot stress enough the importance of forming partnerships with other family members and relatives. Proper dementia care is a team effort. And Peggy said it best: asking for help is not a sign of weakness. Instead, it is empowerment and a key characteristic of dementia-awareness.
Meaningful connections, regardless of how advanced dementia is, do happen. Reminding your parent or sibling how much you love them is an opportunity to connect in a powerful way. As we get into the routine of care and begin to experience the pains of caregiving, the moments of sharing “I love yous” can begin to fade.
As a caregiver, you may become frustrated that actions and words are not always understood. Even a familiar gesture of saying “I love you” gets lost in translation. This is when we must step back and realize dementia takes away some of our abilities, including memory or coherence. Setting aside these defeats and dementia traits allow caregivers to express themselves with a different perspective and understanding, leading to meaningful and connecting moments that both the caregiver and the patient share.
I am happy that I could help transform Peggy’s dementia care perspective. In my response, I called Peggy a hero and expressed how honored I was to be a part of her newfound triumphs – and I know more will come.