Dealing with the loss of a loved one is emotional torture. It can be wretched. Almost violent in its disruption especially when loss comes as a surprise. Death can be insufferable for those who are left behind and therefore mortality as a topic is generally avoided. The mere thought of a loved one dying is enough to send the mind to a dark place. The idea alone causes enough disrupt that it's often saved for private existential moments. Even then, those thoughts are often stifled because losses as such produces a hurt that is better to shirk. Such thoughts are depressing at best.
Unfortunately, as a caregiver you are often forced to face mortality head on. You become keenly aware that time is a gift and death is around the corner. Alzheimer's is a terminal illness and having two parents with dementia makes it impossible to avoid the gloom and doom that lingers on the horizon. The worst part is that this disease voices a slow goodbye. The daily reminder that I am witnessing active death is mentally and emotionally exhausting. At the same time, it is unavoidable and rather than waste time distracting myself, I have decide to explore mortality and death's inevitability by embracing it as much as possible. This obviously is not an easy subject to swallow but I have found a few resources that are nothing short of inspirational.
1. What Really Matters At The End Of Life
This Ted Talk video by BJ Miller, a palliative care physician, is a must! Seriously, make the time to watch it and discuss it with somebody. It's incredibly thought provoking and provides some relief from the agony that is death and dying. If you are confused on what is important for yourself or those you are caring for, you can find some comfort here. He also confirms something I have been thinking a lot lately; that all things can be cured with cookies!
2. Being Mortal: Medicine and What Matters in the End
I read this book by Atul Gawande after several suggestions from friends and I am so glad I did. The stories compiled in this book shed light on the medical industry and the efforts to prolong life at any cost. It echos the video above but goes deeper into the perspective that quality of life is equally important if not more important than longevity. Gawande provides outstanding examples of when to let comfort and dignity triumph over prolonged survival and offers a perspective of hope for many facing impossible decisions.
3. Moving On
If you haven't seen this music video stop what you are doing and watch it right now! It's so smart and creative and beautifully on topic that I almost cry every time I watch it. Ainslie Henderson is a genius!
Everyday is a struggle but discovering resources like the ones above are proving to be a source of comfort during, what you can imagine, is a most uncomfortable time. I believe that anguish in loss is meant to be therapeutic and that heaving cries are part of tragedy's cleanse. That being said, it's hard to hold on to pain's authenticity when it's the daily norm but to strip ourselves from tragedy's sorrow seems like cheating the soul. I don't want to distance myself from the pain of this loss as it diminishes the legacy of my parents memory. Instead I am moving-in closer, finding comfort in an uncomfortable topic, and seeking out new feelings for what end of life means and the emotional grip it holds on my heart.