Sept 11, 2001 (Yes, that 9/11)
I would have never fathomed I would ever experience an ‘ALL IN’ extended-moment in my life at the beginning of my 4th decade. I would have guessed that would be much later in life, as I’d witnessed with so many others. But in just a few days, I was confronted with this decision. “All IN” or Not ‘all in’?
A confirmation biopsy report revealed the frontal lobe brain tumor, which had been removed that fateful day of “our 9/11”, to be a terminal Glioblastoma multiforme. The patient, my 41-year-old wife Nancy, would no longer be able to make her own decisions along her final life pathway. That day in September 2001, she was given 1-2 months to live due to the aggressive nature of her newly removed and formerly untreated tumor. She chose to give her life to science (a gutsy & spiritual decision regarding others more important than herself) and she was fortunate, with help from well-connected medical professionals who honored her heart, to be asked to join a very small trial due to her age/sex/weight etc in Houston (800+ miles away). She trusted me to honor her wishes and heart/spiritual mindset as she suffered through 2 more craniotomies, paralysis on the left side, 1 year of life in a wheel chair, with half of her outer skull removed, and less and less brain function which declined throughout the disease as she now became the “first-in-the-world-to-ever-try” experimental treatments.
Yes, I was now a full time 24/7 caregiver. Who would have thought, let alone had any idea, I could handle it, sustain physically, or stay focused that long mentally.
If I had known the dedication/wear and tear/commitment which I do today from experience, I’m not sure of the decision I’d make today. But, this is the way it is for all of us, isn’t it? You just don’t know how you’ll respond until you face you/your loved one’s special set of circumstances. Don’t fret it. The answer will come if/when you face it and you’ll make the right decision for you.
For me, each day came, and I said YES to the moments and lessons of caregiving (uniquely ours) that would come my way. A new education like nothing I’d ever experienced before. A PhD of sorts in relationship, life, health, communication with others (including crazy smart doctors), self, and God himself was “in session” each day I would say YES. For me, I said YES for the next 478 days after “our 9/11” until her final breath was exhaled, January 2, 2003 (6 hours before our 23rd wedding Anniversary).
As I reflect today on those days of saying YES, the YES decisions were based on the overall weight of BETTER vs. BITTER each morning. You see, each morning I was seemingly BETTER from yesterday’s caregiving… NOT BITTER about the lessons. I guess that YES was based on LOVE. Love of me toward my patient and our God toward us. The YES became easier as the days increased. My “new normal” was to learn what today’s YES meant for me. You can be assured that each day was interconnected with the lesson of, “How precious life is and how important ‘the moments’ are inside each caregiving day.”
How did I feel throughout each day? Great question! The days were laced with both BITTER and BETTER feelings along the way.
From a Bitter angle the following words/moments/feelings would honestly describe the BITTER in each day:
Worried. Doubtful. Sleep loss. Angry. Frustrated. Trapped. Isolated. Frustrated. Hyper-focused on Caregiving. Drained. Strained mental clarity. Guilty. Sad for self. Not smart enough. Confused. Trapped. Pre-Grieving loss. Physically fatigued. Sleep deprived. Huge responsibility. Breaking Heart. No distractions. Eroding Will.
From the Better angle these words/moments that describe the joy of BETTER from my caregiver status:
Smiles. Breath significance. Eye contact. Prayer time. Blessed. Bath time. Wheelchair ride time. No doctor visit days. Awake time. Grateful heart. Family together time. No chemo days. No grand mal days. Delivered meals from friends days. Cards in the mail. Nap time. Emails of encouragement. Bolstered Heart of Love days. Just Good days. A Laugh or two. Visitor day.
These are a list of my “bitter & Better” words. Your list will be uniquely yours and much different, I assure you, but suffice it to say that each day these words, either alone or in combination, can add more weight and meaning. They would lead to being completely overwhelmed where both the joy/pain of the moment could co-exist in the tears running down my face or the laughter that eased the moment. Again, something I’d never recognized in life. Joy and Pain co-existing in the same moment.
The real choice wasn’t the words/feelings/weight of yesterday over the unknown today… it was saying YES to BETTER each day… and God’s help to make it through. It was about LOVE. It was about today. TODAY ONLY.
The YES choice was about “showing UP” & “coming along side” Nancy. The choice for me each new day (that she was given) was about “being available & being present” in her life for just today (after all today is the only certainty we’re given). I’d navigate decisions which she had given me the right and trust to make “in sickness and in health.” But even more important was JUST BEING THERE.
It was easy to be “All In” each day. Why? Because it was an “Others before self”- daily decisions -time in my life. That’s WHY she was waking UP. She had chosen to live out her life that way, and this daily caregiving struggle was extending her life. But more importantly, it was extending the literally thousands of others that have now followed her.
The lesson for me has been to build in margin in my life to be available, present, and choose “BETTER” and others before self when given the choice. This was a lesson that I knew about 15 years ago before my “All IN” caregiving days, but I seldom pulled it off effectively/authentically. I guess it just wasn’t part of my bloodstream yet. Today it is. I am “All IN” to live this way for the rest of my life as well.
In hindsight now I am BETTER… not bitter. I am grateful for my choices of daily caregiving. Now 15 years later, they are still teaching and guiding my way, my new normal of today, my ever-changing Spirit, Heart, Abilities, Personality and Experiences. My “S.H.A.P.E.”
I choose “All IN” for today as well. How about you?
What did you choose this morning?
Great resources should when you face your own “All IN” moment of caregiving. Or for family and friends who are facing them now.
- Being A Caregiver for Someone you Love. (Including: Treating Yourself. Getting Help.) http://www.easterseals.com/explore-resources/for-caregivers/being-a-caregiver-for-someone-you-love.html
- Caregiver Action Network: http://caregiveraction.org/
- Family Caregiver toolbox: (A must 27 resources/tools) http://caregiveraction.org/family-caregiver-toolbox
Perhaps … above all else: