Tuesday 30 January 2018


Today I was speaking with another caregiver. We were talking about trauma.

My friend's Mom has been progressively losing skills due to a degenerative disease. It wasn't just the disappearing abilities that hurt my friend, it was the numbness she felt herself. Here's how she described what happened yesterday. "Mom's been using a power wheelchair to get to the dining room where she lives in assisted living. But recently, she's become unsafe driving it - she's running into walls and people. So yesterday, I took it away. I did it mechanically, I just felt numb. This was a BIG deal and I didn't feel anything. But I went home and I realized that I should be hurting for Mom. I hate this. I hate being numb. I LOVE my Mom."

I've experienced numbness in my caregiving life and I'm betting that most other long-term carers of loved ones with chronic disease or disability have experienced it too. I decided to ask my niece Christina Opolko about this symptom of stress and exhaustion. Christina is a licensed drama therapist and is highly trained in trauma response therapy.  Here's what she said:

"I think as traumatic moments and major traumas accumulate, they become something called complex trauma. Over time, when the body goes into overwhelm, some people train themselves to override their feelings (sometimes called 'functional freeze') in order to keep functioning. This is a symptom of complex trauma. Over time, this can lead to loss of identity, inability to claim space beyond the caregiving role, and a near constant anxiety regarding self and other, without a clear root cause....the cause has been cumulative.

So I think the cause of feeling numb is complex trauma, overriding one's emotions and, I would add, forced accommodation. In trauma, if you are forced to accommodate constantly to someone's needs, there is a needs imbalance, and over time, it too can feel like trauma. The body cannot distinguish trauma from shutting your needs down to serve another under stressful circumstances. The two feel the same. The neurophysiological response is the same in both extreme stress and in suppressing your needs in order to attend another."

I might add one more cause: hyper-vigilance over a long period of time. Hyper-vigilance in order to avoid dangerous and life-threatening consequences of an illness or disability can lead to 'shutting down' one's emotions, in my experience. Being on high alert for the sake of someone's life and limb is a good reason to use whatever coping mechanisms are at hand, even emotional numbing. 

So, how can burnt out caregivers get their feelings back? Christina advises two strategies to begin. The first is called 'interoception' - it simply means being aware of your body in a purposeful way, the same as in yoga, mindfulness meditation or Tai Chi. The idea is to become more acutely aware of how the sensations in our bodies influence the thoughts in our heads. The second strategy that Christina is reaching out for support - to a medical professional, family, friends, or online. Seeking support may seem like a trite or even useless suggestion to caregivers whose emotional range has flatlined. "What's the point of talking to anyone?" could well be a symptom of being overwhelmed by a sense of futility. 

Is emotional numbing a good coping mechanism? Maybe sometimes, it can be. But mostly (in my experience), it is better to cry, much better. And my worry that if I started to cry, I would never stop was unfounded. I cried, yes, but then I stopped and I carried on. We all do. I reclaimed my feelings by asking myself, "What do I feel right now? Where are my muscles tight? Where are they relaxed? How does this orange taste in my mouth? Which muscles move when I swallow?" And I reached out to my family, my friends and my fellow caregivers. For me, nature was and is a great healer, too. Being in my garden, walking in the woods, even standing at the window looking at the rain all heal my heart and soul making me MORE emotional, ready to sense my body and especially the bodies and emotions of those I love.

Christina recommended that I watch this video about healing trauma from Dr. Peter Levine. If you recognize yourself in this description of trauma experience, I urge you to watch it too.

PS: Deb, long-time complex disability Mom who is also a reader on the Caregivers' Living Room Facebook page posted the comment below. It is so beautiful, true and poignant. I just had to share. Thank you for your wisdom, Deb.

This article is bang on for me. I have been caring for my complex needs son for 30 years and the "hyper vigilance" over repeated crises, hospitalizations and just day-to-day monitoring of his medical instability have forced me to help us both survive through accommodation. I have definitely totally shut down my own needs yet, strangely, what I thought I needed before has evolved into a new and, not that awful, "extreme living in the present." If anything, I have a completely different perspective on what really makes a life and what we are able to accomplish under duress. Perhaps we are all heading toward that eventually and I am just getting there faster? It doesn't even seem like futility or numbness any more. It's more like entering a new sphere with different rules of engagement.....

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