Alive
Week Three:
My hands are shaking and my heart is pounding, ready to break through my chest with every beat. It is 5:50PM. Just after dinnertime. Nan is sleeping soundly in her bed while the movie Armageddon plays in the background. Flashback to not even thirty minutes ago as I watched my grandmother in uncontrollable distress, unable to gain control over her slowly declining body. I watched the fear in her eyes and felt her panic as her body once again failed her. The fifth time today. Remain calm I tell myself. I stand there, go through the motions as I’ve been taught and hold her hand as she struggles to catch her breath, unable to swallow her strawberry applesauce and cottage cheese: “dinner”.
I think it’s safe to assume that we’ve all had food “go down the wrong pipe”. We’ve all felt that minor panic as we choke momentarily on the burger or whatever else we’re indulging in and think to ourselves dramatically “oh my god, is this it?” We’ve all been there. Eventually, our bodies recover and we drink some water and go on with our meal. I will never take for granted these moments again.
It has now been a little over three weeks as a hospice caregiver. Or at least I think. The days have all blended together in a timeless void. During these three(ish) weeks, I have watched as my grandmother’s body slowly but steadily begins to shut down. Little by little. I keep my notebook and document the changes. I keep logs and track the progress. Yet no amount of intellectualization or visualization can prepare you for the changes that occur right in front of your eyes.
As a granddaughter, as an outside observer, these changes scare the shit out of me. There is no denying or sugar coating it. I am terrified. But to be the person experiencing it, to feel the pain and be let down by your body time and time again, well that’s damn near unimaginable.
Nanny doesn’t have to say anything. There is no need for words. I can see it in her eyes that she is exhausted, both physically and mentally. Her body is failing her. She used to make jokes about living until 95, but the reality of it is that she may not make it past 75. I can prepare myself, well try to anyways, for the loss of my grandmother, but how can you prepare when it’s happening to you? How can you begin to process the changes that are happening to your body? How can you comprehend that you are dying? How?
I recently watched a video called “My Last Days” about a 21-year-old girl, Claire Wineland, who was dying from Cystic Fibrosis. Sadly, Claire passed away last week. (If you haven’t seen this video, watch it.) This video follows Claire as she reflects on her last days and embraces her identity as a “dying” woman. I was blown away by her positive attitude and acceptance as she faced what I imagine to be the most terrifying experience of her life.
Claire, although dying, was also living her best life. She was determined to enlighten others on what it means to be a dying person and shatter stigmas associated with the dying process. She says, “we cannot keep teaching people who are sick that they need to be healthy before they live their lives.” Wow. For me, this was eye-opening.
As a medical social worker and now a granddaughter of a grandmother on hospice, it is easy to view the ill or “dying” person as just that, dying. We tend to baby them and act as though we have to save them. We forget that they are in fact still alive. And we forget that they have histories and stories and have lived full lives up until this point. And they continue to live and be alive until their very last breath. They are more than just their diagnosis and prognosis.
For me, this has been an incredibly and humbling experience. I will admit that I too had altered views of the dying process. I used to view the dying process or hospice as an end. From the minute I heard the word hospice, I braced myself for another ending and another loss. I forgot that here she is, sitting in front of me, very much alive. Beautiful, witty, and sharp…and alive.
Although I am here experiencing this with her, this is her experience. She is the author of the rest of her story. Regardless of what I do or what I think, she and whatever higher powers are out there are in control. All I can do is be here for her and support her and love her and help her however I can. Despite the inevitable and terrifying changes and the desire to control everything, I must honor her autonomy and give her back the control over the rest of her life, however long that may be. I must stand by her and recognize that although she is dying, she is also alive.
