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Lessons I Have Learned |
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I did not set out to enter geriatric social work. Quite the contrary, my experience had been with societies' discarded and abused youth, the most violent of inpatient juvenile offenders. I have found little similarity between those kids and my current work with Alzheimer's disease, if for no other reason that the first at least still possess some responsibility for their condition. Needless to say, I have had to learn very quickly. In my graduate school internship, a multitude of opportunities and phenomenal teachers were to be found. In such an environment, one learns to roll words like psychosocial and acetylcholinesterase off the tongue with refinement, and have some clue what they mean. Even (and especially) beyond graduate school, I delight in my fortunate opportunity to learn from people that know what they are doing. While school is a wonderful place, it is also pleasant to be paid to do what you enjoy. Sometime after receiving my first paycheck, the neurologist who directs our Memory Disorders Unit introduced me to the most wonderful caregiver. Dr. John Growdon's motives may genuinely have been to present me with exactly the type of case I required for my own pet research. In the end, it also served to provide a reminder and lesson as to where some of the best teachers were to be found. First hand accounts are one of the best ways to gain knowledge, and after all I am in the knowledge business. I search for clues to personality in the complex dance that is human behavior. It is a constant search to discover ways to tweak caregiver interventions like Scotty or Laforge would goose the Enterprises' engines for efficiency. I spent the most wonderful hour or so with this caregiver. By the end, I was enthusiastically firing off what we call "doorknob questions," ones used by clients in therapy to prolong the session one more moment. In that one session, I gleaned more insight as to what caregivers need and how to provide it than in countless textbooks. To survive, a caregiver must be selfless and dedicated. Patience for a caregiver is not so much a virtue as a bonafide occupational requirement. A sense of humor, the ability to not minimize but change perspective, must be cultivated. Family and friends coming together can provide vital love, understanding and support. Caregivers must have resources available, and the luck to be either extremely weathly or painfully poor so as to access them. They become adept at nimble navigation of the system, the Internet and their patient with equal dexterity. Ultimately, caregivers thrive on understandable information, helpful models, simple compassion, and the knowledge someone is available when their world seems to be experiencing World War III. They need more directions and road maps, than they do someone to take them where they need to go. Perhaps these are things I always knew and I simply required jogging of my own rather poor memory. It is inconsequential where they were learned, seeing them in operation firmly imprinted them on my mind. Of course, I might be chided for basing such conclusions on a single case, hardly the results of rigorous scientific methodology. For me, it is more important to have an example of how through a combination of healthy personality and environmental factors, the profound negative consequences of being an AD caregiver can be significantly eased. It is sort of like a mini burning bush for the faith of my novice scientific experience and career. Caregivers are ordinary people caught up in extraordinary events. They display innumerable responses to adversity, and provide examples of the finest and worst we as a species are capable of. Overall most caregivers respond with the best they can do with what they have. They are rarely pitiless, deeply dedicated and always generous often to the point of exhaustion. They provide amazing poetry, profound comments and wonderfully humorous anecdotes that both teach and heal. When lost, it is often because no one has shown them what to do, so they figure it out on their own. Few are prepared for the demands of caregiving, that most respond so nobly has restored some of my flagging faith in humanity. In the end, I am deeply indebted to every caregiver I have met. Of course without them I would not have job, but without them I also would not have the tools to do my job well. In the end, a lot of what I do is reuse, revise and rephrase what works for other caregivers. I am sort of the ultimate psychosocial recycling plant when it comes to Alzheimer's disease, I just don't get paid as much as your average garbage man.
by Daniel Paris, MSW
Last updated: January 3, 1998
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