On Caregiver Burnout

photo of person sitting on tree stump near body of water

There are days I cannot imagine the next.  The cost of mothering two complex and fragile human beings feels too great.

My life is ruled by simultaneous schedules and chaos.  I am bone tired and weary; there is little rest.  The mirror betrays me; I do not recognize myself.  Nothing is enjoyable and time marches past my passions and activities of leisure in which I no longer engage.  The ability to maintain friendships evaporates until all that was left of me is the role of caregiver.

And, all this is meant to stay secret.  I must put a mask over my malaise and soldier on–no matter the cost.  There are days when the price is too high and I find myself wishing time would stop and the weight would lift.

This is what caregiver burnout feels like.  It is both a physical and existential threat.  It happens when the role of caregiver consumes the self.  For parental caregivers, it also consumes one’s parenting.  Life becomes about the job of caring for one’s child(ren); one becomes an automaton providing care.

Depression remains a taboo subject as is the similar symptoms that arise from caregiver burnout.  Symptoms include but are not limited to: feelings of sadness, helplessness, or hopelessness; irritability; loss of interest in things that bring joy; sleep disturbances; reduced or increased appetite; trouble thinking or concentrating; unexplained physical complaints; even thoughts of suicide.

It is often more of a taboo for parental caregivers to express these thoughts and feelings because the roles of parent and caregiver are so blurred.  To admit that, at times, caregiving for one’s child feels depleting, hopeless, and grief-ridden is a faux pas; because parenting is supposed to be hard, yet fun, and rewarding.  Moreover, parental caregivers do not want to portray their children as a burden.  We feel overwhelmed to a point that caregiving eclipses the typical experience of parenting.  This in and of itself causes a great feeling of loss and grief.

I can’t survive this way; I don’t think anyone can.

Caregiver burnout is not a failing it is a symptom.  Caregiving cannot happen without the integral parts of one’s self and personality being nurtured; it is about caring both for yourself and the person for whom one cares.   For a parental caregiver, parenting cannot all be about providing care or the parent-child bond suffers.  It is when we neglect ourselves and our many roles as a person that we experience burnout.

I am daughter, sister, wife, friend, mother, caregiver, writer, artist, lover of documentaries and good books, bitingly sarcastic and sometimes funny, silly, caring, kind, compassionate, loving, playful, and more; I am also sad, overwhelmed, uncertain, and fearful.  It is when I get stuck in one part of me or another that I experience burnout.  When I am able to bring little pieces of all my parts into both my parenting and caregiving, I am refreshed.

Self-care is often talked about as the panacea for burnout.  But, self-care is not always some grand, time-consuming thing like a day at the spa, beach, or even a bubbly bath at home (though these are wonderful activities).  Self-care starts with honoring each part of one’s self and making space for those parts amidst all the chaos and responsibilities.

For me, it can be as simple as honoring the artistic part of me and grabbing a few coloring books and the kids to enjoy some coloring.  Or it could be as simple as honoring the playful, silly, and funny parts of me by making faces and sounds while delivering medication.  It is making space for all of one’s beautiful parts to breathe–even the sad and overwhelmed parts.  It is allowing a good cry in the shower; telling a good friend “I’m really overwhelmed” when they ask; or asking for help when it’s needed.*

Today, I made some breathing room for my writer and the day already feels a little brighter.

*If you experience feelings of hopelessness or thoughts of suicide please reach out for help.  The National Suicide Prevention Lifeline can be reached by clicking the link or at 1-800-273-8255.

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On Caregiver PTSD

mother statue

Traffic was at a near standstill.  I was acutely aware of the firetrucks and ambulances piling on the highway for the accident on the opposite side.  My chest filled with a small warm feeling I have come to know as the start of the adrenergic response.  I was safe and I assumed everyone else I loved was as well, yet my mind no longer knows the boundary.  All it takes is the errant whistle of siren on the wind for my body to react, for my mind to shuffle through all the previous emergencies, and all the potential possibilities.  It’s become faster as the years pass and the collection of emergencies compound.

And then, it came.

My phone rang, it was my husband.  The school had called, she was seizing again, they called 911, an ambulance was on the way.  My baby girl, alone, with no way of either my husband or myself to get to her.  The small warm feeling in my chest exploded into an all out inferno and I rerouted to the hospital.  I was nearly blinded by the flashbacks of each and every emergent seizure.

This is the reality of parental caregiver post-traumatic stress disorder (PTSD).

I arrived at the hospital before she did and once she got there I didn’t need them to tell me where she was; the trauma room is an all too familiar nemesis.  Everything else disappeared and my vision tunneled on her.  She was barely breathing but no longer seizing.  All emotion was cast aside and logic ruled as I ran down all her medications, the order of medication administration for similar seizures, her seizure signs, and general medical history.

Quickly she began breathing again on her own and waking from the medication induced stupor.  She survived once again–beautifully resilient.

We survived once again.

As the adrenaline started to fade in rushed the blowback from PTSD.  My brain attacked me. I knew looked like a detached mother–hyperlogical and unaffected by the life threatening situation in which I found my daughter.  I’m well acquainted with the sanctimonious online mommies who judge the videos of tragedy and remark how they could never be that composed.  Yet, tragedy and lifethreatening are our regular.

Was I detached?

This is the reality of PTSD.  It warps the brain.  Over the next 48 hours I examined every possible thing I did or didn’t do in my recent and not so recent history that “caused” the latest life threatening event.  My brain tried to create control from a situation over which there was and never will be any.

I wasn’t detached I was dissociated–separated from the emotion–until it was safe to feel them once again.  I didn’t cry until 72 hours out–until I was really sure she survived and I could face the reality of the terror once again.  It was then it came in heaving, racking sobs that I stifled in my pillow as to not wake the house.

And today?  Today I got up and washed my damned face.  I drove her two hours to her neurologist as I was pulsed with a tiny infusion of adrenergic warmth every time she coughed from her car seat.

I did as I have done for her whole life and as I will for the remainder of our lives together.  The spectre of trauma always looming.