How Grieving COVID-19 is Similar to Taking Care of a Parent with Dementia

Since early April I have provided 30+ Zoom presentations to thousands of faculty and staff at the University of Maryland.  My focus has been on how most of us have been reacting emotionally to this pandemic, including experiencing feelings of anxiety, stress, and depression.  Given the severity and unpredictability of the COVID -19 pandemic, another prevailing emotion experienced by many has been grief.  Whether it be specific, for the loss of a family member, friend or colleague, or general, as we all grieve the loss of the illusion of stability and security that helped center our lives, this is no ordinary grief experience.  Most of our losses in life occur over a defined period of time. We feel the sudden pain and sadness of the loss but ultimately move on with our routines. Because there is no clear ending to this pandemic and only the anticipation of more uncertainty, our grieving becomes an ongoing process where the only thing known is the unpredictability of our futures.

Grieving during COVID-19 strikes me as a very similar process to the grief experienced while being a caretaker for a parent or loved one with dementia. Dementia has been identified as one of the costliest medical illnesses because patients live a long time after the initial diagnosis but still need constant care. My mom lived for ten years after her initial diagnosis. It was hard to see the mother that I once knew slowly slip away. I found myself grieving incrementally throughout this process. Some aspects of our relationship were still there while others were notably and painfully disappearing, with the inevitable reality that they would never come back again becoming part of my daily awareness.

Whether we are grieving the loss of a loved one or simply the loss of our safety and security, grief around losses from COVID-19 are eerily similar.  It involves a set of emotions that most people are surprised by. But the stages of grief are all there: denial, anger, bargaining, acceptance and ultimately, developing a sense of meaning for what we are experiencing.  Most of us dance in and out of these stages, sometimes all in the same day.  When our loss is a friend or family member to COVID, our grief is immediate and palpable.  For those of us who have not yet experienced this, we know it may be coming and that reality inevitability produces its own anticipatory anxiety.  Added to this already toxic mix is the institutional racism that has impacted the experience of the pandemic for many members of our community. There is also the reality that people are struggling with the multiple needs and stressors of children, parents, and finances, all while trying to focus on being productive at work.

As a caretaker for my Mom (fortunately – one of many – a quick thank you to my wonderful siblings), I quickly recognized and experienced the draining energy that such a task requires.  It is so easy to put our needs aside, especially when we see that others needs are greater. This is often the beginning of the slide down the slippery slope into burnout.  The uncertainty, unpredictability, loss and the feeling that “this” may never end that characterize the experience of caretakers of dementia patients mirrors what many of us are experiencing now.  This is the reality of our COVID pandemic experience and to avoid the inevitable burnout, self-care needs to be a part of our daily routine. For those of you who have reached out for help during this time, I congratulate you for taking that initial step of taking care of yourself.  I have continually been inspired in Zoom group conversations by colleague’s creative ways of filling up their energy tanks.  It seems that many of our dogs are pleased and maybe a little surprised at how many walks they are getting each day. Gardening, painting, listening to music, reading, movies, cooking, connecting with neighbors.  The list is endless.  Please do not look at self-care as selfish.  It is one of the essential things that allows us to build and maintain resiliency, no matter who we are taking care of.