Now that Who Will Butter My Toast? is published and launched, I am revising When God Comes Knocking, the memoir I published in the 1990s about Rayna’s brain injury.
Here are the opening lines from the Introduction:
“I remember sitting in birth class, watching a film on cesarean birth thinking to myself, I don’t know why I am watching this. It isn’t going to happen to me. A few months later, I gave birth to my first child, by cesarean. I learned something very valuable then: "Never say never.”
Whether your loved one has disabilities or is aging and in need of caregiving now or in the future, preparing for what might happen is crucial for everyone involved, and especially if you find yourself the sole caregiver. How will all the individualized approaches you do for your loved one be passed on for others to continue giving your loved one a safe and dignified life? When people have learned about my new caregiving handbook, the most common positive feedback includes how helpful the book will be for their caregivers. How detailed the book is. Adults with aging parents express what a valuable asset it is to help them navigate caregiving. Adults who were former caregivers of aging parents who have passed, expressed they wish they had a book like this at the time.
Yet my “expertise” did not come from proper preparation. While we always made sure Rayna’s future was secure financially, and having Tovah, her older sister, stepping up to the plate when needed, I thought Rayna was also completely secure with engaged caregivers. But I was wrong.
In retrospect, I was putting her care together like a million–piece jigsaw puzzle as each situation arose. A caregiver would take Rayna in the community and not bring a water bottle or snack, something Rayna likes to have with her, or her caregiver would play inappropriate music in the car, or cook what appeared to be a delicious dinner, but not how Rayna liked it.
Each time I gently corrected the caregiver. I didn't catch on that I was assuming they would do things the way we wanted. I merely redirected them when it was not how we approached the task, until Rayna brought up one request herself: asking me to tell caregivers not to put pocketbooks on the couch or kitchen table. I began to realize I couldn’t assume they would know about all of Rayna’s specific needs, and I also came to understand the importance of communicating her needs to them. And that's how I ended up writing a caregiver’s handbook, which proved to be a game changer.
I hope my book will help you be prepared as far in advance as you can, and that it will enable you to drop the “un” in “unprepared.” While you need to live in the present, you also need to be proactive and prepare for the future. The more you document the specific lifestyle and details of your child or aging parent or any loved one who has caregiving needs, or you are able to anticipate their future needs, the smoother life will be for your loved one and you. And for your eventual caregivers, it’s a win-win.
