I follow several blog sites on grief, hospice, Parkinson's and wrapping my head around hope. In one of them I recently read a review of a book and decided it sounded promising and ordered it.
Here are two paragraphs from the first couple of chapters:
"Most people’s dreams of the future almost never account for the fragility of life, love, care, illness, disappointment, and rejection. Too often, dreams can’t keep up with who we’ve become. Dreams can be incredibly deceptive because they often omit the messiness and tensions and responsibilities that characterize our everyday relationships. Most people don’t dream of loving someone when it’s not easy. Who dreams of what life will be like when we love someone who becomes ill? Who dreams of managing the challenges of work and caregiving and children? Who dreams of being depressed? Who dreams of struggle? Who dreams of bodily interruptions?
Personal transformation is usually an experience we actively seek out - not one that hunts us down. In the twenty-first century, becoming a caregiver is a transformation that comes at us, requiring us to rethink everything we once knew. When a loved one becomes a caregiver, everything changes - responsibilities, beliefs, hopes, expectations, and relationships. “Being” a caregiver is not something most people think about or dream about, let alone prepare for, because this role and relationship seemingly defies understanding. Rarely, if ever, will you hear caregivers speak of themselves as a group or a class. Caregivers don’t allow themselves the privilege and comfort of the “we” because there is no union of caregivers, simply a legion of “I’s” doing and being and serving. Not seeing ourselves as part of something larger than our own individual experiences comes at a cost."
Those words washed over my soul. They are thoughts I wish I had read long ago, when we were first beginning our PD journey. Towards the end of Russ' life we had gathered the support we needed, but this book shouts of the value of love and care, it roars of the gift caregivers share, the blessing bestowed on the patient, the value in being able to stay home and the respect and appreciation that comes to
you. Whether or not a caregiver has a special title just doesn't matter, they serve
from the heart.
I send peace and love to anyone who cares for another no matter the hours each
week. Perhaps its respite care for the spouse or transportation to an appointment or taking someone grocery shopping; it is all a gift. And the spouse who made the
choice to 'be there' is the biggest gift of all. This book helps them understand they are NOT alone and shares reminders that their emotions are real and normal. The book is a valuable tool box in perspective.