“Caregiver Burnout: Time For Me is Not A Break From You”

This morning I woke up in my apartment alone, to a silence so loud and colorful that I could almost see it. I opened my eyes and forgot where I was; a casualty of spending 10 weary days sleeping in a hospital, hotel and at my sisters apartment. I turned my head and was greeted by a pale blue sky, with gulls floating effortlessly through it. Immediately, and for the first time since we left for the hospital, I could feel my body, now drained of adrenaline, sending me streams of data. My hip, injured in 2007 was screaming at me. The herniated discs in my back and neck were throbbing. My stomach was upset. My head was pounding as if I had drank a fifth of vodka. My thoughts were slow. My feet hurt, and I realized I had blisters that I hadn’t even felt, from wearing the same shoes. My skin felt puffy. All of this was my body’s way of saying..“Anj, enough. That is quite enough.” 

Today is my first day in 270 days that I have had off from my role as caregiver. And when I say off, I mean that I have not had a break for more than 3 hours in 9 months since we moved in together. Anyone who has ever cared for someone full-time, knows in a unique way what it requires of your own health to do this job well. Only when silence becomes your greatest gift, and a space in your head begins to open again, where it had been incessantly cluttered, can you truly understand. When that release comes, it’s size is within direct proportion to how intense the stress was all along. And this morning, the release feels…. quite frankly, epic. 

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I have never known how honest to be in my writing regarding our life. Patrick, like so many TBI survivors, already feels like a terrible burden, and struggles with feelings of self-worth. He questions why I stay with him and expresses all these doubts to me regulalry. I empower him to know that he is my everything, and that as my boyfriend (as opposed to my son, brother or even husband), he can take solace in the fact that I choose this every day of my own free will. But it does not stop his constant turmoil. And so, I have kept to myself the realities of caregiving, out of fear for how he would receive my words. But after writing so candidly about our grueling experience these past 10 days, and seeing the way in which it has effected so many people, I have realized that our journey is bigger than just the two of us. We have a chance to speak for millions of voiceless people in the world, and by doing so we can turn our experience with TBI into a vehicle to do more good. I want to create transparency and visibility for the TBI world. I want to start now.

I love my boyfriend. I love my life with him. It is an incredibly difficult life that requires of us incredible physical, emotional, mental and spiritual demands. Some survivors have whole families caring for them. Some have two parents. Some have just one person. In our case, Patrick and I fly solo.

Some survivors have caregivers who devote their lives to them; understanding their roles as fierce protectors, defenders and advocates. Some have caregivers who keep food on the table, a roof over their heads and shower them every other day, and to them that is enough. Some have no one at all.

When a caregiver wants to be exceptional, and also does it alone, that is where burnout becomes very real very quickly.

The first time Patrick squeezed my hand.

The first time Patrick squeezed my hand.

Our medical system is an abomination. There is far too little therapy provided for those recovering from TBI; the worst injury imaginable. The cut-off for therapy is far too soon, and many can’t get any at all due to arbitrary yardsticks to measure “response” and “awareness.” We learn very quickly words like “plateau,” “gains,” “threshold for growth” and “regression” and we learn to hate them all. We are stamped with dates like cartons of milk; “best if healed by ____,” as if our brains mold over and are useless past the 2 year mark. We are misinformed about Neuroplasticity. We are left to do the homework ourselves. And we learn what we always knew to be true: that we are human beings; living, breathing, healing, changing, adaptable lifeforms. So why are we treated like algorithms; reduced to filing systems, and categorical placement by men and women at insurance companies, who sit behind a desk, deciding our fate without knowing anything about the reality of our injuries or our capabilities?

Caregivers are thrown head first into TBI, and support dwindles within the first 6 months. In a state of tremendous shock, experiencing our own immense trauma in what has happened, we are forced to postpone what becomes an ambiguous, unending grief and step up to the plate. We naively think our loved ones will be cared for through the system, until the first time we walk into a hospital and find them laying in their own feces, suffering from bed sores, or having contracted an infection. Those like Patrick, (who once was vegetative/minimally conscious) are the most defenseless. Many of us move into the hospital to watch over things. (It should be noted that there are exceptional doctors and nurses out there -but they are the exception, not the rule). Then, when our loved ones come home, we are handed worthless, untrained aides that often abuse our loved ones, keeping us from ever feeling at ease away from them. Some of us, like myself, will send these people away for the betterment of all.

We spend hours on the phone with insurance companies every week, trying to navigate a system less elegant than “Here Comes Honey Boo Boo.”  We sit up at night like medical students learning everything about brain injury. We lose track of the days. We forget what month it is, or what season we are in. We engage and converse with support groups; exchanging ideas, and continuing to learn. We push ferociously for ongoing treatment. We go to therapy sessions, where we are given exercises and stretches to do 3x a day.  It is up to us, after the exhaustion of the day has left us spent, to find the energy to motivate and inspire our survivors and also complete these tasks. Meanwhile we are transferring them to the shower, in and out of bed, preparing meals, prepping medications, researching the side effects of those meds, fighting doctors who won’t return phone calls, dealing with seizures, blood clots, vision problems, sensory issues and so on. Many caregivers have children, or aged parents they are caring for besides their injured loved ones. It is immensely difficult.

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Eight Days at Cooper Hospital. This is the face of a caregiver.

Our survivors have difficulties with attention, memory, reasoning, processing, sequencing, social skills, sexual appropriateness, organizing, decision-making, judgement and self-awareness. Some are tremendously violent, and others like Patrick, have occasional outbursts of rage. (That last sentence would be enough to wear a caregiver out, without the added stresses mentioned above). In the case of a severe TBI, our loved ones are reduced to infancy after their injuries. They have to relearn every single task a newborn baby would, and move through the stages of growth all over again, all while being aware somewhere inside that they are already adults. The battle towards cognitive self-awareness, self-acceptance of their injury and a gradual move towards independence is the goal. But that means the caregiver, and in my case, the girlfriend, has to become a mother, a lover, a fighter, a therapist, a nurse, a bread-winner, a teacher, a warden, and an advocate. 

I want Patrick, and so many other survivors out there to understand, that when fatigued, caregivers don’t seek a break FROM THEM but rather, FOR THEMSELVES. Any decent caregiver will battle guilt in taking time away, because there is ALWAYS more to do, and you are ALWAYS afraid that if you are not there, you are “wasting time” that you could spend helping your loved ones recover. But the reality is that we are not made of steel, no matter how much we wish we were. We MUST recharge, reset and heal. We need to give permission to ourselves to do absolutely nothing. We are not escaping you. We adore you. We are recharging our batteries for ourselves, but also.. for you.
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Patrick will be inpatient for a few days, and while I plan to be there for therapy to learn all I can, I also am going to force myself to sit on the beach without my phone, to read a book for no good reason at all, to get a massage with money we don’t have, to meet a girlfriend for a drink — and to do all the things I never do and that somehow in my caregiver mind feel terribly indulgent and selfish. “Normal life” feels like a dress that doesn’t fit these days, but I’m going to squeeze myself into it anyway, because its necessary.

To all the survivors out there who have a loved one that supports you: please know you are loved immeasurably. Please understand that we all know that you NEVER get a break from TBI. You live with it and cannot escape it. But as the non-injured person in the relationship, we must take breaks so we can keep fighting for you. Thank you for pushing so hard and never giving up.

And especially to my Patrick, I want you to know, here and publicly for all the world to see, that you are the most incredibly strong, courageous, handsome, charismatic, funny, intelligent and down-right beautiful person I have ever had the blessing of knowing.

Time for me is not a break from you. I love you. And I always will.

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Discussion

Comments

15 Comments

  1. Lynn Sandoval

    You’ve expressed the experiences of care givers so well. Especially the part about feeling guilty when we need that little bit of time away from our loved ones. Thank you.

    • Anj Granieri

      You’re welcome. The guilt is very real. But it stems from love and wanting to do all we can. However, I try to realize that i’m not being rational and think more intellectually about it. The pace we keep is simply not sustainable. xo

  2. Erin

    I haven’t had time to get online much lately as you know so well why. I hope you had or are having a nice break. You deserve it so much. I continue to marvel at you. Thank you for all you give.

    • Anj Granieri

      Yes I certainly do know why. My break hasn’t quite started yet – tuesday I want to have a “me” day 🙂 Thank you for your words. They keep me going.

  3. I can clearly understand everything that you are saying. I am a survivor. I realized my only true advocate ended up to be my mother. I thought she was the only “uniquely exceptional” person…as through the many years she fought hard to keep my feet on the ground. And as I slowly got better, through many years of frustrating deficits, she lost her life by inappropriate medications. I am so very glad to meet another…”uniquely exceptional person”. Thank you.

    • Anj Granieri

      Having a mother like that.. you are so blessed. I’m so sorry to hear she has passed away. But i must tell you how moved I was to read you use the words “uniquely exceptional person.” I don’t think I’ll forget that one any time soon. Truly, I am touched. thank you. xo

  4. Aunt Nancy

    We cannot tell you how proud we are of you Anj. Together you and Patrick are doing the impossible.Your strength, your courage, your faith, your Christina virtue and your determination are nothing short of magnificent.

    • Anj Granieri

      I love you Aunt Nancy and Uncle Pat. You guys are such a wonderful support for us. Thank you for being there xo

  5. Pamela

    standing ovation for such a truthful and beautiful piece! You are the mouthpiece for ALL caregivers in this article! I needed a like button for every sentence! I freakin love you Anj! Not only are you the schnizzel of a caregiver but then when you have used your last drop of energy you give even more to other caregivers to get us through. You are a brilliant woman my friend who needs to write a book!

    • Anj Granieri

      I love you to Pamela! And giving to all of you gives back to me. It helps me feel less alone and helps bring good out of such a shitty situation! I want to write a book one day! Just need life to slow the heck down for a minute first! 🙂

  6. David

    Anj, you are truly a beautiful person, Patrick is lucky to have you as his caregiver and girlfriend. After my ABI my wife Carol would visit me in hospital and attend some of my therapies, adjusting her work schedule to fit me in, the visits she timed to coincide with mealtimes meant so much to me as we sat together and chatted about the “mundane” things in life. Now I am discharged from hospital and attending outpatients and feeling more like the person I was before my aneurism I am less reliant on Carol (she still has driving duties)
    I’m sure you will be rewarded as Patrick improves and you can take pride knowing how much you helped him and as he becomes less reliant on you he will truly appreciate how your care contributed to his recovery

    • Anj Granieri

      David – thank you so much. I was moved to read about how your wife took care of you. It is after all, the most obvious and amazing act of love to care for your partner when they cannot give back to you.. and it does create such a strong bond. I am so glad to hear that you’ve made such a marvelous recovery and I hope that Patrick can share in a similar joy soon. xo

  7. When faced with the unfairness of a loved one s illness or the burden of caregiving, there s often a need to make sense of the situation and ask Why? But you can spend a tremendous amount of energy dwelling on things you can t change and for which there are no clear answers. And at the end of the day, you won t feel any better.

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