Our Co-Executive Director, Barbara Byer, created this care booklet when her own son, Ben, was diagnosed with ALS.
“I recently came across a booklet I made years ago for Ben’s caregivers, listing everything from his favorite foods to the time his son came home from school to important contact numbers. The book itself is an inexpensive folder I bought at Staples. It contains a number of clear plastic slip cases that hold 8 1/2” x 11” paper that can be changed as often as needed. Each of the sheets I prepared has a different focus:
Page 1 - Caregiver Responsibilities
Page 2 - General Weekday Schedule
Page 3 - Household Tasks
Page 4 - Important Contact Numbers
Pages 5 to 10 - Favorite Recipes
The extra empty sheets are convenient for holding information about supplies, bills, inquiries, etc. It’s a handy way to keep important information together.
Households are busy places and the more information that’s available, the easier it is for someone to step in and help out. Specific sections on where equipment and supplies are located, what to do in case of a coughing jag, food preferences for meals and snacks, appointments with therapists, doctors, how to adjust equipment, and more. Every household is different. Every person living with ALS has different needs at different times.
A booklet like this helps everyone – the full-time permanent caregiver, the once a week person, a cousin who wants to be helpful but only once in a while, a good friend who is afraid of mishandling an issue.
As I looked through “What’s Happening at the Byers” a brightly colored child’s drawing with birds and sunshine fell out, a caregiver application, Walgreen’s delivery ticket of supplies and photographs from 2007 of happier days, a brief look at the past that made me smile.”