"Grief is love with nowhere to go; it is all of the unexpressed love that I didn’t get to tell them” Stephen F. Elkins Ed.D.
Each week before respite and each month during our Dementia Family Support Group we touch on the many emotions encountered by loved ones and caregivers during the Alzheimer’s or dementia journey. While most begin in denial – “This can’t be happening!” - eventually people find the ability to face the truth of this end-of-life trauma. Moments of peace exist and even bits of happiness as the haze of memory loss slips and a smile, familiar phrase, or a favorite memory is all that peeks out. I remember these times with my sister Carole when I thought, just for a few minutes, that she was back and that the disease had just been a trick. Those precious times helped and other caregivers survive the treacherous process of dementia.
The opening quote from Elkins’ article is a statement about the depth of human connection. Elkins continues, “Grief exists because love existed first. We grieve relationships because they matter…because they impact us. We grieve opportunities because we care about.. the seasons of life.” Some perceive grief as a weakness, something to ignore as we learn to move on. Grief, however, indicates that we are human, that we have feelings about a loved one mired in cognitive decline. Life changes as opportunities mutate or vanish. Many believe that grief comes only upon death, but with terminal illness grief occurs during living.
My dad died suddenly at 59; shock became my strongest emotion followed by transporting him from Dad to a higher pulpit. I avoided talking about him because the words brought tears. My sisters appeared to handle the loss in stride while I lived in “would have, could have, should have” for 25 years by pretending I felt OK. It was only when I learned to grieve for him that I could face reality and move forward – not on; he’s still with me, but forward. I did not, as I now understand from Elkins’ article, take time to grieve and then to love, admiration and energy into my life and that of others.
Time is one aspect of dementia that I have come to respect. After finally accepting Dad’s death, I became a better person. I treasured the moments with Mom. I called her, visited her, wrote her letters, and engaged her in travel and personal time together. This allowed my emotions to develop and support me to become kinder and more observant of people around me. It allowed me to grieve while she lived and to love more intensely. She taught me the responsibility I carry to do good. As both descended into Alzheimer’s they gave me time: Mama’s included 3 years while Carole offered 14. Seeing minds deteriorate although still encircled with lucid moments makes me appreciate them so much more.
Elkins ends by reminding readers that grief doesn’t disappear, but that it transforms
Into care for those around us. “The lessons from a lost opportunity become wisdom that helps you succeed the next time.” Love lingers in its new form. Grief creates listening skills, things others share along with actions or advice to avoid. Grief is individual and so experienced differently. The unique dimensions are invisible and there is no timeline nor direct pathway. Now I realize had a better accepted my father’s death, I would have been better equipped to be a stronger person. My grief supported me in cultivating purpose.
When I finished writing the above paragraphs I had to step away to take a break, think, and run. Returning 60 Minutes popped on TV with Anderson Cooper interviewing guest Rachel Goldberg-Polin who explained the pain she’d experienced after the capturing of her son by Hamas. For 328 days she endeavored to have him and all hostages freed. Rallies, messages, and internal fortitude pushed her onward. On the last day of son Hersh’s life, she used a microphone to call his name across the border with hope he’d realize how much he was loved. That courage encapsulated with grief later carried her with the belief that he had heard her voice. She describes her heartache, from Day 1 to Day 328, as an extension of her love for her son. Hearing her words struck me – that’s just what Stephen Elkin had stated. Pondering this I better grasp the concept of grief as an integral part of healing, a necessary process.
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