This month’s article has been particularly hard to write. I have started and stopped often, searching for the correct words to reflect on a subject that always incites more questions than answers. But the reality is, there is no correct language, no perfect words to offer when a caregiving journey comes to an end.

This February marks my sixth year in the world of caregiving. It’s a journey that began when I was 25 years old, fresh out of graduate school and working at my first real job. That’s when I got the call that my father was sick. At that time, no one knew what was wrong, only that it was serious. In the six years since that phone call I have watched my father survive astonishing circumstances: liver transplant, multiple strokes, bowel obstructions, and finally, renal failure. Last week he made the courageous decision to end dialysis and spend his final days at home. And so begins a new first in caregiving: learning to say goodbye.

Six years has taught me a lot, but the biggest lesson I’ve learned is to protect my heart. You see, I used to be the kind of girl who wore her heart on her sleeve. I fell in love fast, hard, and committedly. My love for my family has always occupied a niche in my heart so deep and so loyal, I’d willingly fight for them until the bloody end. But when I nearly lost my husband eighteen months ago to a severe brain injury, I had no choice but to learn to restrain my heart. I simply couldn’t survive heartbreak of that magnitude.

There are many things I like about the person caregiving has taught me to be, but my dulled heart isn’t one of them. Like a soldier in an epic battle, brain injury forced me to build a barricade around myself. The grief associated with losing the life my husband and I once had and the connection we once shared was so tremendous, I knew if I allowed myself to feel the weight of that sadness each day, I would never get out of bed, let alone be able to help TC through his recovery. What few people realize, however, is that my grief over brain injury has always been compounded by the slow and agonizing loss of my father. In a way not dissimilar from brain injury, my dad’s health problems have transformed him into a new person over the past six years, and, as a result, I had to learn to let go of my former attachment to the two most important men in my life.

Witnessing six years of almost constant suffering has made me hard. I can’t get worked up in the way I did during the early days of this journey. I’m pretty sure I’m nearly out of tears. I’ve spent more time in hospitals than I have with friends over the past six years, and most days, I feel twice my age. Yet, my heart is still tender and that’s why I’ve learned to keep it safe.   

But here I am, with hours, a day or two at most, to say goodbye to my father and I realize that the next step for us all involves more courage and more bravery than we’ve displayed before: we need to surrender. My dad needs to surrender his tired body and acknowledge the fullness and beauty of his extraordinary seventy years on this planet. My mom will need to surrender her role as a full-time caregiver and learn to make peace with some of the more painful memories of the past six years. And me? I will need to surrender my closed heart.

As I watched my three-year-old son sit beside me the other day, eagerly helping me to feed my dad, I was struck by his fearlessness. It didn’t occur to him to be scared or nervous in the presence of someone who is dying, much the same way it’s never occurred to him to be confused or embarrassed by a father with unusual disabilities. And unlike me, who has shied away from strong outputs of emotion during this experience, my son is willing to unleash his love both loudly and frequently. “I love you, Pop-Pop!” he smiles, clinging to the rail of my dad’s hospice bed.   

Why can’t I be that brave? I asked myself, questioning for the first time whether my dull heart is the consequence of my fear, not the achievement of my strength. Am I so scared of getting hurt again, of having that rug swept out from underneath that I’ll sacrifice the time I do have with my loved ones?

Caregiving is not for the weak of heart. Neither is love. In this life, we will be hurt in unimaginable ways. But we will also survive. These past six years have been tough and, at times, incredibly overwhelming. However, they’ve also been insightful, reflective, and joyous. At times I feel I am holding onto a basket of contradictory life truths. The body is fragile, yet built for resilience. The heart is tender, but remarkably iron clad. Life is generous, but, at times, inexplicably cruel. There are so many lessons to be learned on this journey, I can only hope to put a few into practice as I move forward.

Yesterday, the tears finally came. Driving down the long country roads of the rural town my dad so loved in his lifetime, his legacy was suddenly transparent. Open your heart. Love big. Cry often. Nothing is scarier than missing out on life. The surrendering part is hard, but there is so much reward.

Comments (13)

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I completely relate and have tried to explain this many times to my children and husband. My husband had a TBI in 2003, my mother and father were in a auto wreck in which my mother died in 2006. My father who had a stroke previously came to live with me and my husband. Thanks for giving me words to express my guarded heart.
Your love & devotion are always so inspiring . You are a wonderful example of a true Christian woman who is such a blessing to so many people in your life ! Continuing to keep you , T.C. & your families in my prayers .
I have been on that same journey; my father passed away in November. I completely get what you are saying. Some days my heart got so hard, but that made it possible for me to help my mother and him without collapsing. Now the tears flow freely and I am so grateful for the time I had with him and his legacy.
Absolutely beautiful! I went from a caregiver for 20 years with my Dad who has MS to a TBI survivor and watch those around me live what you wrote. God bless you for the courage of your honesty and sharing a piece of you.
This is a beautifully written article. It's hard to bare your heart to the world. It's hard to give up your life for others, but when you love like this, there really is no other choice. I certainly would not make another choice. Other people can hurt for you but can't really change your circumstances, but that knowing that they understand is worth so much. God must feel we're special and can handle it, so I feel like I have to life up to his expectation of me. Thank you for sharing and writing the article.
I feel many emotions as I read this. My husband aquired a brain injury in 2011. 3 months in hospital, 2 more in therapy then 24/7 care provided by me and his mom because I work full time. He can now fuction alone but with many strategies in place because he is now visually impaired. My mom had been on dialysis for many years her health was failing she passed in June 2013. The last two years of her life I was so busy caregiving my ABI survivor that she slipped away from me, time I can never get back. I can't imagine what you go through also raising a small child. Our children from previous marriages are grown. In a way my daughter also lost her mom because all my free time is spent doing the necessaries. I enjoy reading your thoughts... Keep sharing. Hugs.
Great article. Reading your stories has really helped me feel less alone. A year and a half after my husband's severe brain injury I, too have come to the conclusion that the protective wall I had built around myself was because of my fears...the fear of being asked for more than I could give, the fear of setting limits, the fear of failure. Now that I have stopped being so afraid, I am able to show a lot more compassion and not feel so tightly wound up. But maybe we had to have that phase behind the wall just to get through that first really hard period of adjustment. Judy
I met and saw you only briefly when you were a child living in Phoenix. I became a member of the Heard Museum's Board of Trustees during Marty's tenure as director. What a wonderful woman you've grown to be! Your tribute to your father, and my friend, Marty, was beautiful and inspiring. Thank you. Blessings on you and yours. WLM
Thank you ~ I can relate to being a caregiver, a role that comes easily for someone with a degree in social work and a degree in education ~ the helping professions. I have been a caregiver over the years for those that I love. I am also a caregiver for myself as someone who lives with a TBI. It is not easy and many days I want to scream "Why can't you see that I need help? I need you to be my caregiver, my co-parent of our 4 children, and take care of yourself!" But he is unable. His invisible disability has been diagnosed and has a name, Asperger's Syndrome and ADD. So I am alone, tired, and trying to do it all. But I can't remember how to do it all. No one sees that I am struggling. I look the same on the outside just 13 years older than the day. The day they tell me I sustained 2 sub-arrachnoid hemorrhages, a C-2 fracture, a 4th optic nerve palsy and that I am lucky to be here. I too surrender, but I give up.
I am astonished on how close, rather, how correct you are on how it feels. I haven't realized that I have closed myself off to many people and even myself. I was my mother's caregiver for years while she had fought so hard with cancer, then having to make the very hard decision to take her off of life support. I had to deal with loosing my mother, help my daughter understand and also having my husband give me the news that he was getting deployed all within a couple of months from each other. When my husband came back from Iraq he had come back with a MI, TBI, and severe PTSD. I just recently became his caregiver and I guess my fear of loosing him has made my heart colder. I feel like as if our marriage is just being married and not a marriage. I don't feel as if I'm his wife anymore, but I am trying very hard to recover and not allow myself to have a cold heart. It is great to be able to talk to anyone that is going through the same thing that I am. Thank you for your story.
Thank you for this article. So much of my feelings, and to know there are others (unfortunately) that go through this too makes me feel not quite so alone. I, too, haven't spoken to most of my friends in 3-4 years. My husband is post 6 years TBI and even though he's okay physically, the mental damage from a frontal lobe injury has changed our lives forever. I no longer feel like our marriage is a marriage. The comments that come from him hurt, but I try not to let it knowing it's not all him. I cry quite alot and so want to have a happy life, and not be so lost and sad. There is no one to talk to who really understands what we go through. They see him and think he's okay and don't understand. I also am the caregiver for my 91 year old mother who lives with us. I pray for some peace and happiness daily. I know I am blessed and I am grateful for what I have, but this emotional roller coaster and load on my shoulders sometimes is so hard to bear, but I pull through. God bless to you and everyone living and loving a TBI survivor.

Thank you for sharing your have done an amazing job especially with willing to be there in impossible times. I can identify with all your videos and other articles on confession of caregiver, for I myself is a caregiver for my husband who is a severe TBI survivor.

You have put most of my feelings and emotions there...thank you so much. I post it on my FB for all my friends especially my and his family to read.  My world crumbled 19 months ago, and I have surrendered in the past and keep choosing to do the same for every day that I face. My 8 and 10 years old boys still need me. My husband's emotional condition (temporal epilepsy) made him to be sedated.....i don't know what else need to be done.

His family took him away from our home almost 2 months ago, and now I am trying to "make lemons out of lemonde" with everyday....not to harbour resentment or bitterness, but to live life with God's love.

Thanks again for inspiring me to press on in this care giving journey.  You are doing wonderful things Abby!

Dear Abby

Is there any way I can talk to you or your Mom by phone? I need to share my pain over the loss of your Dad, my dear friend from long ago and NOW. I left an email address on one of your blogs.
David Kil