What is it like to watch a parent dying of dementia? How do I support my mother, even as she no longer knows who I am? How do my two brothers and I care for her needs and for our own? My mother is living in her condo in Snowmass with her amazing caregiver Jaime. He came to help with my father over 4 years ago, and when Wiley died in December 2020, Jaime stayed on. We are also now supported by the familiar team from Hospice, so her physical needs are being addressed.
Our family has been witnessing the dementia taking our mother from us for several years. At first we noticed her emotional meltdowns and loss of executive functioning. We stepped in to help move our parents out of their home and eventually into this condo. Last January my mother was able to understand that her husband of 70 years had died. She could carry on limited conversations and enjoyed watching musicals and videos of her great grandchildren. In July she had a heart attack, a stroke and a hospital visit that significantly decreased her mental capabilities. She made it to our reunion in September, but she no longer recognizes her family members. This January she stopped eating solid foods, can’t walk by herself and is sometimes unresponsive. It was time for Hospice.
My brothers and I visit when we can, but no one lives nearby. Does it matter if one of us is with her when she dies, or has Jaime become her closest companion? Even though I am not sitting by her bed, I know I am supporting her. I pray and meditate, write letters that she cannot read. Sometimes I hear an answer. I sense that her spirit has actually already moved on and is at peace. Only her body remains, programmed to eat and stay alive. Now even that will to live is dwindling.
I have set up the Portal of Light, an energetic pathway out of this life and into the great beyond. My friend Frits and I created an album to support this process with words and music called Portal of Light: Support for a Graceful Transition. I know that my focus and intentions can bring in the presence of angels and guides. My cousin Karen sees her Uncle Wiley holding out his hand to help her across the river. She does not need to be afraid. My friend Mary Ruth senses he is coaching her on how to leave this body. He knows the way.
Recently Jaime shared a story about my mother waking up at 2am and telling him she had a recipe. She has never been much of a cook and has trouble finding words, so this was a strange (but perfect) word for her to use. He asked, “What kind of food will you cook?” She kept saying “I have a recipe.” Then she said, 3 times, “I will tell you how to get out of this world. I will tell you how to get out of this world.” “How?” he asked. We are still waiting for the answer.
When I pay attention to the bigger picture of this natural transition, I am lifted out of my own sadness and feeling of loss. As I allow the tears and memories to arise, I practice forgiveness and acceptance for us both. The wrestling with what we shared and what we didn’t has turned into compassion and gratitude. We loved one another in the best way we could.
Ram Dass wrote a wonderful book called, “Walking Each Other Home.” That is where I am today, walking my mother home. I have been with her when it mattered, offered the energetic work, and I will visit soon to hold her hand and rub her feet. For now I pray for grace and ease on her journey and lift it all up to her Creator. As my niece Cat says, “God’s will, baby!”