I fought for mom to retain her sanity, her independence, her dignity.
I fought hard and often fought scrappy, but I fought with love.
I fought at the expense of my family and my own health.
And she still died.
It's been almost two years since mom passed away and I'm just now feeling comfortable talking about losing her, the lingering heartache, and the roller coaster journey my family and I have been on.
What I didn't expect was just how hard it would be to step off the caregiver treadmill. My newfound "freedom" left me feeling empty for I was accustomed to dropping everything at a moment's notice. I'd be there when mom needed a patient advocate in the ICU or transportation to a doctor's appointment. I was there when she couldn't drive herself to buy groceries or fill prescriptions. I learned her entire medical history so that she no longer had to answer the litany of intake questions in the emergency room or newly-assigned specialist's office. I'd uphold my promise to be by her side when the firemen were called to her house, often in the middle of the night, when her blood glucose levels tanked. And I ran on vending-machine meals and slept in hospital cots so that I could be there for mom when she'd wake after surgery.
Caregiving is no small undertaking. I was thrust into the situation, as is the case with so many family caregivers, without guidance to navigate the minefield of medical terminology, specialists, patient outcomes, rehab options, home health coordination and insurance interpretation. The list goes on, but we do what we can to help our loved ones. And I couldn't have done it without the unwavering support of my husband, family, friends and neighbors.
I haven't shared much before now because 1) I am a private person (doesn't come easy but I'm learning - thank you Brene!) and 2) When I do talk I want to be sure I'm honoring mom. Never in her 66 years did she let her illness define her. She was the strongest, wisest, most creative person I've ever known. So please know that I will do my best to keep the conversation focused on my experience as her caregiver.
One way I can honor mom is by showcasing her amazing art and handicrafts. I'm starting a new series of paintings/drawings called "made by mom". The first installment is featured above.
In addition to art and therapy, I can attribute my healing to what I've read in "Passages in Caregiving: Turning Chaos into Confidence" by Gail Sheehy. This book has had a profound impact on me. It has given me the language I've needed to talk coherently about what I did day in and day out for five years straight, first for my sister and then my mom. The book also validates the extremes in emotions and fatigue.
Gail's book helps future caregivers avoid the same mistakes she and hundreds of other caregivers interviewed for the book have made. She explains the eight universal stages (or "Turnings" as she calls them) of the caregiver's journey -- giving hope and order to an otherwise tumultuous experience. I only wish I'd discovered the book sooner.
Perhaps I will talk at greater length about the book or how I navigated certain "Turnings", but for now I urge you to read a brief overview of the book here because you are likely to find yourself caring for a loved one and I'm confident you will appreciate Gail's work.