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 Love and Fear in Motherhood

mother and child

He pulled in close to me and nestled his head in the crook of my arm.  These simple displays of affection are some of my most treasured moments in this life.  I am his mother and he is the healthy child I dreamed into existence after the birth of my daughter with a rare genetic disorder.  He is brilliant, exuberant, affectionate, and unapologetically his unique, seven year old, self.

He has healed me and broke me.  And, with his help, I have grown into the authentic and unapologetic mother both my children need.

When he was born, I was a mother with a deep-running crevasse through my soul.  Shattered by the ever growing medical complexities of our daughter, I could not imagine motherhood that was more than survival.  Only 20 months younger than his sister, I was still in shock and grieving the loss of the motherhood I imagined.

My early motherhood was ruled by fear.  The deep and enduring love I had for my children terrified me.  Love is both light and dark–powerfully abiding affection and compelling fear of loss.  I was stuck in the terrifying shadow of loss.  Even his heathy birth did not pull me from the precipice of anxious mothering.  When something rare and devastating happens to one of your children it can seem as though that soul shattering devastation is what one can expect.

When he was an infant, I spent many-a-night stripping him naked and inspecting him for any signs that he might have the same rare disease as his sister.  I did not understand the calm mothers who surrounded me; I could not comprehend why they told me to relax or their gentle reminders that he was healthy.

Yet, as he grew and surpassed milestones his sister was yet to achieve, I realized that mothering in fear was a choice.  Time and fate would march forever onward and nothing I did would change that.  In the meantime, sidled right next to that fear was the warmth and ease of adoration.  I need to choose to appreciate both.

His ease and health healed me.  Then suddenly broke me again as accepting his bounty highlighted my daughter’s loss.  I emerged in the in-between and my motherhood blossomed.  And as time passed, I was continually broken and healed a-new with each passing phase.  When he began speaking sentences, went off to kindergarten, to the day he asked me what would happen when my husband and I die and would he have to take care of his big sister.

As a mother I am fierce, deeply loving, silly, reserved, playful, regimented, anxious, confident, unapologetic, fearful, and resilient.

I am the mother I am because of all that my children have gifted me.

 

 

 

On the Becoming of Motherhood

woman standing on rocky shore during day

She is like the ocean–soft and powerful.  Her moods come in waves, alternately lappingly playful and ferociously destructive.  She is strong and resilient with a hidden undertow.  And I am her steadfast shore–velvety sand and sturdy rock.  Her waters shape me.  Conversely my topography affects her.  We are symbiotic and occasionally at odds.

***

Motherhood is about becoming.  One can imagine the type of mother she will be and yet mothers must be made.  They are born the day one starts her relationship with her child–be it in the womb or when the child is gifted to a mother through adoption.

She made me a mother.

The day she was born I did not know if she would cry; the doctors were not sure either.  She had tumors in her heart, likely some in her brain, and perhaps even her kidneys.  My sweet baby girl was handed to me with a rare genetic disorder. I knitted her together with this disorder in the waters of my womb.  A disorder marked by benign tumors in her vital organs, epilepsy, autism, developmental delay, behavioral issues, and more.  My motherhood made by both her and her disease.

When I dreamt of motherhood I imagined myself enjoying sweet infant snuggles, playful and challenging toddlerhood, all the way to dancing at her wedding.  I did not imagine hospital monitors, multiple medications, seizures, early intervention.  My girl has always been beautiful, life-giving, and free as the ocean and equally as unpredictable.  Motherhood is unpredictable no matter one’s imaginings.  This is why mothers are created.  There is a beauty and sadness in this–a loss of one’s imaginings of the mother one might be and an exquisite becoming into reality.

One tends to think of mothering one’s children into who they will become not of becoming herself.  The reality is our children make us as much as we make them.  They are born into this world their own beings who exist within themselves just as we existed before them with our own traits and qualities.  Motherhood is about loving, nurturing, and honoring who your child is no matter what–disease, disability, difference, sexual orientation, etc.  That loving, nurturing, and honoring is what shapes us–the relationship between the waters of the ocean and the steadfast shore.  In turn our motherhood changes who we are as a person.

I am continually becoming.

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.

 

On Awareness and Activism

Joy and painTomorrow is world TSC awareness day. My one ask is you wear something blue for Kaleigh and her friends. Wear blue. And read this. That’s it. (It’s a long read but bear with me…)
This is what Tuberous Sclerosis really means to me and my family.
TSC is exuberantly walking in to see more pictures of the baby growing inside you and walking out a changed person. It is waiting in the still shadows of the ultrasound room for the specialist to be called down as you stifle tears. It screaming at the silent and still baby in your belly as you rush yourself to the hospital, “MOVE BABY GIRL! STAY WITH ME! JUST MOVE!” It is the sweet triumphant sound of a screaming, pink baby. It is surrendering your sweet newborn to doctors and massive machines and tests. It is the inexplicable joy of taking the daughter you were told may not make it to birth home. It is the love surrounding her. It is a blue and white striped shirt with a blue headband on a smiling 4 month old going to a routine appointment only to find that she is in heart failure. It is PICU stays and discharges. It is tiny bodies besieged by seizures. It is hour upon hours of therapy to learn to hold up her head, roll, laugh, eat, crawl, talk. It is tears of determination. It is hard work. It is a breath holding, adrenaline rushing, sight narrowing, mind clearing experience in which there is no time to panic only time to act. It is silent prayers and ones screamed at the top of your lungs to a God you aren’t even sure exists because you can’t imagine an entity that would allow a child to suffer. It is tumors and medication schedules. It is saying Subependymal Giant Cell Astrocytoma like a boss because the term is burned into your brain, because it is a scary, scary thing in the middle of your child’s brain that could kill her. It is learning to read an MRI without a medical degree. It is taking charge. It is learning that advocating for your child can make you look like a huge B and it is necessary. It is the soul crushing experience of resuscitating your child. It is hearing the long awaited “I love you” after hours of delusional screaming in excruciating kidney failure. It is the weight of a lifeless toddler in your arms. It is catching the stumbly child you waited 28 months to see up and walking on two feet. It is avoiding public bathrooms because the hand dryer is more potent than kryptonite. It is jumpy, spinny, stimmy, kinetic joy. It is tears of joy upon hearing a tiny uttered “uh-oh” after a two and a half hour seizure. It is ambulance rides. It is tiny whispered “Friends?” and her excited expectation of hearing me say “Forever.” It is a demand that I ask for kisses only to be met with a yell of “No KISSES!” a giggle, and a lean in to accept the forbidden kiss. It is learning to write after 9 years of determination. It is getting your child fitted in her brand spanking new bright green wheelchair because even though she can walk she still needs a damn wheelchair. It is defying all expectations. It is singing in the backseat on long car rides to specialists.
TSC is joy and pain. It is heartache and healing. It is patience and anxiety. It is fear and steadfastness. It is rock bottom and jubilation. It is tenacity and acquiescence. It is holding on and letting go. It is acceptance and rejection.
It is love. All abiding, never ending love.
TSC is my family. TSC is as entwined in our existence as it in Kaleigh’s 16th chromosome. #IamTSC #WorldTSCAwarenessDay