The dates that stick out in one’s mind can signify multiple experiences and trigger memories year after year. These memories that work their way into our conscience can be harmful when obsessed over, joyful when the thought of with gratitude, or be simple reminders of who we are and the paths we have taken. July 14th, 2005. May 2nd, 2008. December 30th, 2011. January 15th. 2012. What do these dates signify? They are all related to my grandmother’s dementia. They are all memories that could turn negative, but instead for me, propel my work forward in ways unimaginable. Without the experience of “also being the granddaughter of someone who lived with Vascular Dementia,” my career may be full, but not rich or colorful. They are dates that signify my grandmother’s diagnosis, the last day I visited her in her home, the last day I saw her, and the day she passed away. Through these experiences and the reflection of the events of these 4 dates, I have been given a gift that enables me to be present for others in ways that go beyond the fear and sadness of dementia.
Fifteen years ago today my grandmother was diagnosed with Vascular Dementia. – I have already shared her story of approaching her diagnosis before, but I think one thing is important to share with all of you as I know many feel unnecessarily guilt after their loved one receives a diagnosis. Her journey toward a diagnosis showed us the many signs. Signs that not everyone was willing to see. She gave us little red flags, that when combined with her history of high blood pressure, gave us the answer was in front of us. I feel at first we skimmed over the little details and the big picture of what was changing for her. We all can miss the signs, and for some family members, it takes until their loved one need full-time care for them to see the fullness of what their loved one is going through and the dementia journey they are now walking. I know for my extended family, that is true, and some didn’t even fully embrace the reality of my grandmother’s journey even after she passed away. – This day was the day that a shift started to form inside of me. For several years, dementia and geriatrics were in my mind as a potential population, to work within whatever form my career would take. I loved working with people decades older than myself. I enjoyed the conversations and the ease of connection that occurred. I would spend my service and campus ministry hours with this population but on this day, it became more than volunteer work and a future professional direction, the story became personal. I knew, somehow my 16-year-old self knew that this was going to be a profound chapter in my life. I have used this experience and the experiences of witnessing my extended family interact with my grandmother, succeeding, and sometimes failing to maintain a relationship with her, to help other families during this chapter in their lives. I take these moments with me as I help others as they seek a diagnosis and wonder what the best path forward might look like for their loved one.
I think about the last day I visited my grandmother in her own home. A home that also sheltered me from time to time. A home she built with her husband, raised her family in, and she experienced great sorrow and great joy within those walls. I didn’t know this was going to be the last time I went to visit her like this, how many times do we know when the last time will be? I take that moment with me. The reflecting on a chapter now closed has helped me be present for those who are visiting their loved one for the first time in a care community, hearing the statement, “I want to go home” and wondering how to respond. I see where our care systems have left a gap in serving the families and loved ones of those now on their list of residents. I understand the emotions that can swell up and come out in forms of anger, tears, out-lashes, fear, and avoidance, and to not simply dismiss these individuals as a “problem family,” but as a family needing someone to walk with them, to listen to them, and to help guide them through this chapter of life. I understand the feelings of wanting the best for a loved one in a skilled care community and quickly blaming the staff for how a situation was or was not handled. This is not to say our care communities don’t have a long way to go in improving the way they show up for their residents and families, but I recognize that it is not always about what a care community did or didn’t do. I take these moments, and the memories of my family’s journey through this process, and work to listen and see the family and their needs during this time.
December 30th, 2011, was the last day I saw my grandmother. I was home from New York for Christmas and wanted to visit Grandma one more time before I left. There was something in me that knew this would be the last time. I remember walking out of her room that day and thinking, “If this is the last time I see my Grandma Marie, I will be okay.” It was a fantastic visit and one I will always cherish. It was a good day for her, and that is likely the greatest blessing I received that year. I was at peace. Not everyone gets that closure, those final moments, nor does everyone accept the invitation to say good-bye to their loved one. But, through this experience, I can be available to those who fear they just saw their loved one for the last time. Who wish they could have that closure and be around during that final “good day.” I can help them through these moments regardless if it is wondering about the future or reflecting on the last moment they missed or were present to the experience. This is where the beautiful work of storytelling and letter writing can come into play, to create those moments of closure, to re-write the ending, and even though it is not reality, it is a window for healing regardless of the relationship’s complexities, and how it ended.
January 15th, 2012, was the day my grandmother passed away. A day we will all experience, but one we can take a moment for pain or a moment for joy. Because I have experienced the loss of a loved one with dementia, wondering what those final years would have been like without the disease, I am able to sit with others who wonder the same thing and help them unpack the gifts of dementia and the relationship with their loved one. I have been able to sit with people as they drown in feelings of guilt because they feel a sense of relief the person is no longer alive, they are no longer a care partner and can start to reassemble life without this individual. I have been able to sit with others as they feel great regret for how they walked (or didn’t walk) with their loved ones. I sit with others as they reflect on a life that may or may not have been a positive person in their life, and come to find the gifts of that relationship.
Yes, the dates that stay with us can be powerful dates that become our guides, holding memories of our past, transforming how we engage with the world in a positive light, if only we allow for our lives to be transformed. What dates stick out for you in your life? Are you allowing them to impact your life for good?