Caregivers and Personal Assistants
My injury wrote this book for you.
“Give me a fish
and I eat for a day,
Teach me to fish
and I eat for a lifetime!”
* While this quotation appears too frequently in some literature, it well expresses the spirit behind learning as many independent living skills as possible, and minimizing one’s dependence on others.
For the ‘60s Generation, it was the Summer of Love. The morning of July 4, 1967 was hot and muggy. I was 18 years old and had graduated from a parochial high school just a few days before. Instead of hanging with hippies in the Haight or educating America’s political conscience in Berkeley, I was working for the summer on the east coast on Martha’s Vineyard, Massachusetts.
The Vineyard is that well-known resort island about seven miles southeast of Cape Cod. As any island, it is surrounded by beautiful ocean beaches.
That 4th of July was a holiday for me from my clerking in a clothing store, and in the early morning I sprang out of bed and pulled on my swim trunks. I was in great physical shape and thoroughly enjoyed bicycling the five miles to the Vineyard’s South Beach. I had planned to spend the day tanning, swimming, and boosting my social life.
After an hour of tanning, munching on apples purchased from the local A & P Supermarket, and listening to the AM-radio ‘60s rock of WBZ (Boston) and WABC (Manhattan), it was time to cool off in the Atlantic. Around ten o’clock that morning, I paddled my bare feet through the hot sand and climbed up onto a concrete bunker that nosed out into the crashing, cold surf. Standing tall at the front edge of the bunker, I looked out toward the huge waves rolling toward my toes.
As many of us teenagers had done on previous days, I curled my toes tightly around the front edge of the pier, leaned forward like a cat about to spring toward a mouse, and dove head-first into the bluish-green curl of a huge, incoming wave.
That simple dive would change the rest of my life, and make possible this reference book.
I felt the cold, refreshing splash of salty ocean slap my face as I entered the water—and then I heard a “snap.” Regardless of the large appearance of that wave, I had apparently dived the 15 vertical feet downward into a 5-foot depth of low tide. My forehead hit the sandy ocean floor, my neck snapped at the C-5/6 level, and my body was instantly and painlessly paralyzed below the level of my broken neck.
A surfer saw me floating face-down and before I had used my initial deep breath of air, I was pulled from the water. Still very conscious and cracking jokes as a probable defense against my body’s traumatic state of shock, I was eventually flown by air ambulance to Massachusetts General Hospital in Boston.
As I felt the small plane touch down on the big city runway, I sensed that my new lifestyle had just begun.
My acute care at MGH began with ten and one-half hours of cervical fusion surgery, followed by several weeks of lying prone on a Stryker frame with a 35-pound cervical traction that had been anchored to my skull.
My widowed mother temporarily left her Upstate New York home and moved into a summer sublet among “all those ‘60s hippies” on Boston’s Beacon Hill. With patience only mothers have, her daily stays at my hospital bedside provided a beginning to the essential psychological support that my adjustment required. It was the closest time that my mother and I had or would spend together. Thank you, Mother, I love you.
My medical situation stabilized after two and one-half months, and I was then transferred to the Sunnyview Hospital in Upstate New York for an additional 11 months of rehabilitation.
I was then, and remain, paralyzed below the chest with neither motor control nor sensation. Medically, I am classified a “quadriplegic” or “tetraplegic,” because all four limbs are partially or totally affected. Typical of other “quads,” I have partial use of my wrists and arms but no finger movement.
This situation may sound depressing to able-bodied folks, however I discovered early that I could minimize depression simply by minimizing thoughts about my inabilities. Perhaps when carried to an extreme this is classic denial, however I quickly learned to avoid teasing myself with wanting to do things that were beyond my new set of abilities.
Instead, I learned to concentrate on my abilities, set some realistic goals, and get back on life’s track. The first step was to learn all I could about living as independently as possible from my cabinet of rehabilitation advisors at the hospital.
As it is for so many types of physical disabilities, the objective for my inpatient rehabilitation was not a cure back to able-bodiedness. Instead, it meant receiving authoritative advice from highly trained medical professionals on making the most of the physical abilities remaining from my disability. Surgeons, rehab physicians, nurses, aides, physical and occupational therapists, social workers, and psychologists each had separate areas of expertise for training people with various disabilities in accommodating their limitations. Over the next few months, I tapped these specialists for all the rehab skills they could offer me.
As I progressed through the specialists, I noticed one serious void that no one could address in much detail—even now, over 30 years later.
I realized that most people who have significant physical disabilities will require routine physical assistance from others in order to accomplish daily activities. Some folks will require very little help, while some will need a lot. According to the duration of the disability, the need for help might be temporary or life-long. For me, these activities include the assistance that I need with activities of daily living (ADL), household upkeep, and pursuing goals of education, career, recreation, leisure, and even sex while living life to its fullest.
The state of the art for learning help provider management skills then was much what it is today. There are few health professionals or reference texts that adequately address how help recipients with a disability should best manage the aides who provide that physical assistance. Most “aide/nursing” books in bookstores teach attendants or aides who provide the help in the methods for performing nursing procedures. Others coach loving family caregivers in how to cope with maintaining their own emotional and physical health while providing unending assistance to a family member. In contrast, very few teach the person who receives help in how to manage the quality of that help while working harmoniously with the providers.
If you require help from others, you are—indeed—the owner and president of a lifelong small business. When you find, hire, train, and manage paid aides (aka “personal assistants” or “PAs”), you are operating your own small business. In a similar way, when loving family caregivers provide some or all of your help, your management concerns shift from employment to human relations. Family caregivers are not paid by check, but instead by appreciation. While expressing appreciation, you are also taking special steps to shield them from overwork and burnout.
Unlike your other career or job, if your PA business goes into a slump or you get tired of managing it, you cannot choose to change careers or go out of business. You have no choice with this one. Your dependence on physical help from others is as lifelong and permanent as is your disability. Your PA business must always be a thriving and smashing success.
. . .
In order to be active and to maximize independence, you—or a trusted family representative—must be in control of the quality, type, and scheduling of help that you receive. If you are not in control of these factors and working in harmony with the people who provide assistance, then you have lost the freedom to choose your own lifestyle. To lose personal freedom is much worse than merely losing independence—it is losing one’s spirit and soul!
. . .
As you will see throughout this comprehensive reference, management skills are essential regardless of which of the three provider resources are used: family caregivers, agency aides, or personally employed PAs. Even if you use trained, agency aides, it will be you—and not an agency supervisor—who must know and routinely use skills for instructing, supervising, and keeping happy those aides around your unique needs. You—the help recipient—will be instructing, managing, and providing feedback each day to the provider who assists you. It is common that the two of you will seldom see an agency supervisor more than once each month.
If your disability requires you to use help from others, and you want to be as independent and in the public mainstream as possible, then you should have the skills for independently managing those help providers. You should be able to recruit quality help providers—whenever and wherever you need them—and use ongoing management skills to keep them for as long as possible.
Throughout your lifetime, you will be using the RISHTMP Cycle two, three, or more times each year to get the help you need. RISHTMP, a term coined in this book, stands for recruiting, interviewing, screening, hiring, training, managing, and parting ways with the aides you use. As mentioned, routinely implementing this management cycle is perhaps the most important small business skill you should master. You cannot allow your PA business to fail, and efficiently operating it requires as much technical knowledge as does a traditional small business.
For over 30 years now, I have hired and managed the attendants and aides who have helped me. My ability to hire and use help in a wide variety of settings has enabled me to enjoy a life rich in education, careers, and travel—even though I remain 80 percent paralyzed.
The foundation for all of these freedoms has been my ability—and insistence—to manage the people who provide me physical assistance. From over 30 years of experience, there is absolutely no doubt in my mind that if I were to lose control of the quality of assistance I receive—as well as the quality of people who provide that assistance—I would lose control of my lifestyle, quality of health, optimism and spirit, and perhaps my sanity.
I propose that if you are dependent on assistance from others, one of your most important life-sustaining skills is the ability to select and manage your help providers, as well as the quality of their assistance.
This comprehensive, indexed reference will enable you—who uses physical help, or a family caregiver who coordinates it for a loved one—to work in harmony and mutual respect with help providers, while also being in control of the help they provide. Consequently, you can safeguard your personal freedom and be active in your chosen lifestyle.
Thousands of people in many countries have maintained control of their disability, lifestyle, and personal spirit through the management techniques in this book and its previous editions. These strategies have worked for me, for those people, and they should work for you!
Alfred H. “Skip” DeGraff
Author, publisher, wheelchair user, and PA manager