Caregivers' Needs -vs- Patients' Needs
Family caregivers have a great many needs and all too often, the sites devoted to helping caregivers, seem to have caregiver needs inextricably confused with the needs of the people they care for.
It‘s true, many of our “needs” are intertwined. We both need to understand the illness or disability, the medications and the therapies that are involved in the treatment and how to use, clean and maintain any equipment or protheses that are involved. We both need to know how to work with doctors and hospitals so our "family patient" gets the most comprehensive care. We both need to understand what can be expected in the future and how to prepare for it.
Additionally, in this day and age, most family caregivers don't get into caregiving knowing even the old fashioned basics. We don't know how to lift a patient out of bed, how to make a bed with a patient in it, how to give an enema, how to take a pulse. . . the list goes on and on. We don't know what devices or aids may be available to help us. We don't know how to judge the severity of symptoms as they relate to our "family patient's" condition.
Much is learned in a hodgepodge manner, on the fly as the saying goes. “Training” may be no more than a conversation with a home health nurse or hospice worker who comes in once a week or twice a month. He or she may have satisfied the requirements to gain state certification but otherwise have no previous nursing experience and have little to offer except a card that says something like “Call if you need help.“ “Training” may be reading the instructions on the back of a package.
Beyond a need for adequate training, family caregivers, in order to serve the best interest of the people they care for, often need a working knowledge of their personal finances, permission to receive their private medical information and the authority to act in their behalf. We need to know the ins and outs of our family patient's insurance. We need an understanding of Medicare, Medicaid, and Section Eight. Some "Street Smarts" really doesn‘t hurt. We need the advice of a competent attorney, know how to find one and know how to pay his bill. We need to know more about 911 than how to dial.
But then, there are the special personal needs that family caregivers have, that largely result from a single problem that caregivers can be all too familiar with but no one is really talking about. How do you handle the rest of the family? George who wouldn't lift a finger to keep it from falling off. Peggy who thinks you sold your house, quit your job and moved in with Mom to live free and get more than your fair share of the "inheritance" -- which has probably gone to pay medical expenses but, of course, she's never going to believe that!
Then there is the dirty side of the caregiver coin. The Black Secret that goes way over the top of just being expected to do more than you are capable of, worse than when the caregiver/patient relationship becomes so co-dependent that neither is getting the care they need. What do you do when as a family caregiver you begin to harbor so much resentment that caregiving becomes destructive. How do you recognize it, when things turn ugly? What can you do about it?
Future articles planned for this site will cover all these aspects of caring for someone else. As for links. I am finding so much general medical information and so little specific information regarding practical home nursing, that this may well be one of the most difficult section to develop.
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