Caregiving with Grace

PRO is delighted to bring this WONDERFUL resource to the Parkinson’s world. The book reviews we’ve received are enlightening, heart-warming, words of satisfaction, words of gratitude and only positive.

We express our gratitude to Dr. Powell for giving Parkinson’s Resource Organization the exclusive right to distribute the book in any way we see fit, but particularly she would like us to make money from it to be used in carrying on the legacy of her Caredfor Joyce Powell (died 6/1/2010) by continuing to help caregivers of people with Parkinson’s.

THE FORWARD: “Getting old isn’t for sissies!” I’m certain that you have heard people say this. It is often aid with such conviction, especially if some old and frail individual says it, that is both amusing and sad at the same time. Usually, the speaker is referring to the various and sundry maladies that may have afflicted him/her (hereafter referred to as “he” or “him” for convenience of expression.) Also, usually, he is referring to his own most recent affliction.

What if the affliction is of such a nature that the person becomes dependent upon someone else to help him with his ADLs (Activities of Daily Living)? This is how untrained Caregivers are recruited. The person may be a relative or a friend. In almost every case, this scenario of someone in a
household assuming their role as a Caregiver is unexpected and not part of the lifelong plans.

Hence, a lot of Caregivers start their career as amateurs! From the time we are old enough to give dying some thought, most of us say, very emphatically, that we do not want a long, painful death. For most people, this means physical pain because this is the horror of our world. But until we are faced with the long, slow, painful-to-watch process of wasting diseases, we usually make the “not me” statement and then go on with our lives as we have not yet discovered the world of the “Long Good-bye.”

I’d like to address the problem of terminology. I cringe whenever someone refers to me as a “caretaker”! Even some doctors lack the insight to use the word CAREGIVER. Anyone in this role not only gives care but also gives a part of themselves as they perform their tasks. I have not found a good term in the literature for the recipient. Terms like “care recipient,” patient, spouse, victim of some disease all fall short of describing the individual, who, above all, is STILL an individual who happens to have some affliction, like Parkinson’s disease. “Caregiver” is a compound noun. I am proposing “Caredfor” as a term to cover everyone in the recipient role. The common and powerful threads are LOVE and CARE.

Caregivers are everywhere. A huge percentage of them are untrained, unprepared, and unpaid. This book is written for these people. They just happen to be present in a household that suddenly (or slowly) has someone whose needs can no longer be met by themselves. Most of these unmet needs are filled by non-professionals. The world of caregiving is often a silent visitor, sometimes creeping up on us like the fingers of ground fog, sometimes engulfing everyone with one sudden catastrophic event.

In many cases, neither the Caregivers nor the Caredfors are fully aware of all the ramifications of the new status. All too often the Caregiver is neither trained nor prepared forthis new set of circumstances. And the learning curve for Caregiveris as diverse as the problems
addressed. A large percentage of the demand for Caregivers comes with the onset of a chronic (and frequently disabling) medical problem present with the Caredfor. Once the disease has been diagnosed, the best ammunition that a Caregiver can have is to learn as much about it as he possibly can. For one thing, everyone involved needs to understand the progress of the disease and be aware of the adjustments that will be necessary at each stage. This is no small task. In fact, quite the contrary, it is a challenge of stupendous proportions. In order to have an effective caregiving
environment, both the Caredfor and the Caregiver need to understand fully the needs of the Caredfor at any particular time. The Caredfor needs to know what is still possible for him to do. The Caregiver needs to provide the remaining effort to accomplish the task(s). 

You might ask what credential I bring to this treatise. First of all, I admit to being an amateur – especially in the beginning. Second, I have attended many courses on caregiving and have read lots of books, pamphlets, and other literature that address this subject. Last, I have been a willing caregiver for my cousin and best friend, Joyce, who has had Parkinson’s disease for 30 years. Alzheimer’s for 6 years and had a colostomy for colorectal cancer 12 years ago. Overcoming the challenges of each has not been easy at times. But Joyce, my “CAREDFOR,” is still such a delightful person that trying to view these challenges as just part of life has provided me with an education that makes continued caregiving possible. And it has helped put a lot of things into a perspective that might not have evolved otherwise. No one ever promised that life was going to be easy. And many sages have stressed living in the now. Eleanor Roosevelt made the following observation that has helped me understand “the disease process,” as medical people keep calling the bizarre behaviors, etc., that are part of the routine.