Humpty Dumpty

re·sil·ience\ri-ˈzil-yən(t)s\ noun:

• : the ability to become strong, healthy, or successful again after something bad happens

“We think that Roger has dementia.” This diagnosis  broke my life into pieces. Grief, fear and powerlessness became my daily companions. Roger, my husband, had recently fallen and been knocked unconscious.  His affect, memory and behavior had changed, and the working hypothesis was that he had a brain injury. But even with rehab and therapy he did not get better.. He was diagnosed with Lewy Body dementia. Imagine Parkinsons and Azheimers together. My care giving journey began in earnest. I was tired. I cried. I raged. I felt numb. I was afraid of breaking into pieces and never being whole again.

I was like Humpty Dumpty! He fell off the wall and could not be put together again.He was not resilient, he shattered and there was no recovery. In 1871, Alice,in Lewis Carroll’s “Through  a Looking Glass” reached for an egg in a shop and saw human features on it. She declared that it was Humpty Dumpty, who as an egg was very fragile and easily cracked and broke open. Was Humpty Dumpty pushed off the wall he was sitting on, or did he jump or was it a horrible accident? Life can certainly knock us out of our secret and secure hiding places. I was pushed into caregiving by a disease that was relentless and had no remorse. I did fall apart many times but I got up one more time then I fell down. I attended a support group for caregivers and the group members kept me going when I didn’t see how I could. When I stumbled, the arms of the group members were there to help me right myself.

My sister worked in an egg packing plant checking to see if eggs were fertilized. A light was shined on the eggs and they became translucent. Inside the egg, developing embryos could be seen and then those eggs were placed in incubators. It is the yolk that provides sustenance to the growing  embryo.  There is no way to scan humans for resilience and no way to know for sure if we are growing through the pain. What sustains us? Grief takes and takes from us, but are there things that grief gives to us?

When my caregiving journey ended I didn’t know who I was if I wasn’t a caregiver any longer. My shell certainly had some big cracks in it, but I held together.  With no caregiving to do I was lost, but I had this newly freed time to finally rest and grieve without guilt. Hard boiled eggs don’t crack or break as easily, but resilience is not about becoming “hard”. Learning and changing required that I remain open to pain, but not hardened by it. My caring for Roger transformed me, I was stronger, more flexible and more compassionate. My perspective on what was truly important had changed. Caregiving stripped a lot of “important” things from my life. I couldn’t “will” things to turn out the way I wanted them to. Running away and denial were tempting options of course, but I made a conscious decision to stay and care for the man I loved. 

I accepted the gifts of grief which enabled me to use my caregiving experience to facilitate support groups for caregivers of people with dementia. What a gift it was for me to be a resource for other caregivers!