How It All Began

It all began with a question from my daughter, Rayna, who has had a brain injury since the age of three. When Rayna was in her late twenties, she began living on her own with assistance from the state of Connecticut Acquired Brain Injury Program.

So, I turned over the reins to caregivers. Well, loosened the reins. Always a mother. Because memory issues are part of her disability, many times, I am her spokesperson.

“Mommy, can you tell staff not to put their pocketbooks on my kitchen table or couch?” Rayna asked. “They can be dirty.” So, staff were informed of Rayna’s request. Asked, answered and done, until… soon after, I stopped over Rayna’s apartment during lunch time when she did not have staff that afternoon. I opened her refrigerator and saw tuna salad. “Rayna, want lunch? When was this tuna made?” A shrug told me that we needed to find an alternative, not knowing the tuna salad’s age. Wasting potentially good food is frustrating, so back to the request-staff-drawing board. “Staff, please label leftovers.” Requested and agreed.

Now I needed to remember two requests.

Rayna’s simple question planted a seed as more and more directives popped in my mind. I should tell staff about this; remind them about that; let them know how to… so I started a list. I realized that, while these caregivers were skilled, they did not know how Rayna’s household was run. Not necessarily like their households, or the households of other clients they might take care of. The more I wrote, the more ideas sprouted to keep Rayna safe, happy and living in a smoothly run household. I found comfort in putting these directives in writing. Rayna’s preferences of how she likes chicken cooked, how she likes her washable dresses hung on velvet hangars to dry, pillows arranged on her bed… was a lot to keep explaining.

The list grew and grew and grew. I decided to categorize topics. Pocketbook request went under general rules; leftovers labeling belonged in a kitchen list. I added new topics: Laundry, Going in the Community, Keeping track of medical information…

As life progressed, so did the information needed to be communicated to staff. Lists begat Sections; Sections begat Chapters; Chapters begat Table of Contents. From Rayna’s pocketbook request came the birth of a handbook.

And that birth eventually brought forth a sibling as the epiphany hit me that if this handbook is valuable for Rayna’s care, wouldn’t other families of loved ones be able to benefit from my ideas? Use the lessons I learned on this caregiving journey? That’s when I decided to morph Rayna’s handbook into a how-to book. To teach families of loved ones the steps in writing a handbook for caregivers and using Rayna’s as an example—thus the upcoming Who Will Butter My Toast? And how did that title come to me? Well, that’s a story for another blog.

Stay tuned!