Harvey passed away from complications of younger-onset Alzheimer’s disease, at the age of fifty-eight, on October 27, 2018. Since then, with the distance of time and the perspective of hindsight, I have come to recognize how grief was, is, and will be, an integral part of my life.
My memoir, Surfing the Waves of Alzheimer’s, devotes a whole chapter on grief, but it only brushes the surface. An older blog post HERE expands the subject.
When I looked up “types of grief,” the internet offered up a cornucopia of articles. This article describes eighteen different types. So much grief!
Anticipatory grief is experienced by those who are diagnosed with a terminal illness and their loved ones. For a diagnosis of Alzheimer’s disease, this grief can last long years. I began to grieve as soon as I recognized the first symptoms of Harvey’s cognitive decline. I grieved for our past, all of the presents as they passed, and the future.
How does one grieve the past? When I look back at the beginning of our relationship, and our years forming our medical practice and starting our family, it’s with a mix of love and sadness. Such youth and lightheartedness. Such confidence and expectancy. In nostalgia there is a sense of loss of what was.
I grieved with each present moment as they arrived, sensing the loss of what is—with each new loss of an ability, each indicator that he was worsening, each milestone he missed in our daughters’ lives.
I grieved for the loss of our future plans, all the travel and new experiences we would have. I grieved for all the moments he would not experience—our daughters’ graduations, weddings, and the births of grandchildren.
Ambiguous loss and disenfranchised grief also accurately describe the grief surrounding Alzheimer’s disease and other dementias.
Ambiguous loss, as it pertains to dementias, describes the feeling of grief when your loved one is still living, yet their brain and their thinking is so changed as to be almost unrecognizable as who they once were. They are “here, but not here.” Your memories of who they use to be are clouded by who they are now. And that “who they are now” continues to change, so you are constantly grieving the persons they were, remembering all of their past incarnations.
And its twin sister, disenfranchised grief, can rear it’s ugly head. This is when one’s grief is discounted. “How can you be grieving when he’s still alive?” “At least you still have her.” And all the other “at leasts,” such as, “At least he still knows you.” Sometimes even well intentioned comments can discount your reality. “But she looks so good!” Even, “It looks like he’s having a good day today,” can feel like a slap to the face when you are living every day with loss and grief.
Then there’s the grief that comes with the loss of the role of caregiver, feeling adrift without that role. “Who am I now if I am not a caregiver?” “How do I structure my now shapeless days?” Even when there is relief that the suffering is over, the loss of that sense of self can be staggering.
I do want to acknowledge grief in all its faces, but I don’t want it to end there. Deep grief also means there was once great love. Grief is a kind of love, and by remembering that this is a type of love, there can be healing.
There will always be scars, but some scars are beautiful.
As the fourth anniversary of Harvey’s passing approaches, I know that I am scarred, but the scar has transformed and molded me into who I am today. Not a better version of myself, just different. I still cry, just less frequently and with less intensity. And I will continue to grieve for the rest of my life. The gift of Harvey in my life was transformative.