I swallowed the ache in my throat as her salt-and-pepper head bent over his snowy white one. My big, strong and wise daddy gazed up out of one of his little-boy moments, “Am I OK?” he asked. Mom nodded and kissed his cheek, “You’re fine, you can sleep now.” He nodded and closed his eyes, letting go of the Alzheimer’s and any other worries, and letting his wife of 58 years carry it for him. I never thought I would see my engineering professor father experience these lapses.
I smiled at the blurry eyes of my niece as she kissed the little bald head of her precious 4-month-old who had wheezed and sniffled through the night, needing to be held upright in order to sleep. I remembered those days, wondering if a full-night sleep would ever be possible again.
I read the Facebook notes I have followed religiously since the miraculous healing of a former student, once pronounced dead, but now struggling for movement, peace and a new identity after her traumatic brain injury. I read of the pain of this beautiful girl and of the struggles of her mom, who has quit her job and become a full-time caregiver, but spends an inordinate amount of time fighting red-tape in order to do her best for her daughter. Both are grateful for the miracle of life; but both are burdened with the fight to figure out this new version. I remember wondering what “normal” was going to look like after cancer.
Feedback to our blog most commonly has this theme: Feelings expressed here are not just for cancer caregivers. Alzheimer’s and dementia, traumatic brain injuries, strokes and anything requiring long-term convalescence seem to fall in the same category and moms can relate to many of the sentiments.
On-line dictionaries provides these definitions for Caregiver:
1. American Heritage Medical Dictionary: an individual, such as a parent, foster parent, or head of a household, who attends to the needs of a child or dependent adult.
2. Dictionary.com: a caregiver is a person who cares for someone who is sick or disabled. Or 2. an adult who cares for an infant or child.
3. Merriam- Webster Dictionary: a person who provides direct care (as for children, elderly people, or the chronically ill)
While accurate definitions, to the heart of a caregiver, they don’t even come close to touching on the changes, the worries, the responsibilities and the love that we wear around our shoulders each moment.
Here is my own definition: A caregiver is someone who gives up pieces of themselves in order to care for and love someone over an extended period of time.
By that definition, all of the above mentioned people are caregivers, plus many more.
We write (for this blog) from the viewpoint of cancer caregivers, moms and wives. Why? Because that’s who we are. We also know from experience that many of you feel similar things even though your journey might look a little different. That’s why we write.
There were things we wished people had told us; things we didn’t see coming that smacked us. Things we felt alone in, but have since discovered there is a whole community out there with similar experiences. We also want to share our growth and a faith that has come —deeper than ever before—that brings joy in the midst of struggle.
So yes, our stories center on cancer caregiving, because they are our stories– but we want to reach out to anyone who does not want to feel alone in whatever caregiving journey you are on. Moms? Feeling alone? Although usually the joy of raising a child is different than the medical difficulties and emotional stress facing most caregivers, you are still definitely giving up pieces of yourself for the love and long term care of someone! Traumatic brain injury caregivers? Long term? Absolutely! Overwhelming? I’m guessing so! Alzheimer’s caregiver? Feeling like you’ve lost your life partner or a loving parent, but love them anyway? You are not alone.
Long term caregiving takes a toll on each of us. Not one that we would trade, because we love our patient so much. No, we wouldn’t hand over the title of “caregiver”, but we do need to acknowledge that it changes who we are. We do need to realize we’re not going crazy, the fatigue won’t last forever and that God has a plan for every struggle we face.
Caregivers: We love. We live. We laugh. We cry. We pour everything we have into the care of someone else in their best interest. We trust in God. (tweet this)
“Caregiver” is not a label I requested….but it’s not a bad definition for my life.
What is YOUR story?