The Samurai Caregiver

Perhaps in Shakespeare’s time, A rose by any other name would smell as sweet but that’s not necessarily so in the twenty-first century. Today we know that words can inspire us to achieve goals we never thought possible, but they can also fuel ethnic, racial, or religious prejudice. Given the speed of communications in the current age, what was politically correct twenty years ago is politically incorrect today. The meanings of words change in our ever-changing world. Case in point  there are any number of terms used to describe those of us who care for loved ones because of our feelings for them and our sense of family responsibility. Academicians and policy makers refer to us as informal caregivers, a term I personally detest. I know why the term exists. It is meant to distinguish us from those for whom giving care is a job or a profession. And indeed it is important to distinguish us from them.

The academicians and policy makers refer to paid or professional caregivers as formal caregivers to distinguish them from us but to also somehow show that we are linked together by the fact that we all give some sort of care. I always laugh when I hear the term formal caregivers because an image of doctors operating in black tie, and nurses aids in evening gowns, immediately comes to mind.

Today neither of these terms informal caregiver or formal caregiver makes sense, and yet they are so ingrained in the literature and in the minds of researchers and government employees that they are still constantly used. It is hard to break people of old habits, but when words convey a negative attitude, suggest a hierarchy of being, or conjure up pictures that are false then we must make the effort to change them. It isn’t easy, but it can be done. I am sure that all of you can think of words that once were commonplace that are not heard much in public these days.

You may be wondering why I am making such a big deal of this. Fair question. The reason is that so many of us that care for chronically ill, disabled, or aged loved ones feel isolated. Isolated caregivers don’t have a sense that there are million of others, just like them, maybe even four or five in a two block radius of where they live. But how can we locate each other if we don’t have a common name that defines our group, that lets us recognize the commonalities between us?

Recent research by the National Family Caregivers Association (NFCA) and the National Alliance for Caregiving (the Alliance) has shown that many of us don’t like the idea of having a label, or a group name. Participants in five different focus groups held all across the country said in one way or another, The care I give is something that I do. It doesn’t define who I am. That’s true in part, but no one name, title, or group identification defines any of us these days. I am a woman, a daughter, a wife and a professional. I am black. I am one of a group of more than 25 million people who provide a significant amount of hands-on care to disabled or ill loved ones. I am always all of these things, and more, but depending upon the context of a conversation one role takes center stage for a while. So if you agree with me that informal caregiver is a terrible term, what do you think we should call ourselves? A common term is caregiver, plain and simple. The problem with that of course is that it doesn’t tell you which type of caregiver is being referred to. In addition research shows that many folks who would fit under the caregiver umbrella really do not like the word. They associate it with those other caregivers, the ones that get paid. They think it is clinical.

The research shows that many of us are more comfortable with the term family caregiver because it implies the emotional connection between care giver and care receiver, even though it is much less familiar. I find that when the subject comes up, that’s the term I use to refer to myself, and I think it fits quite nicely. In recent years the media has been carrying many more stories about family caregiving than it ever did in the past. Newspapers for instance tend to mean family caregivers when they simply use the term caregiver. Perhaps over time caregiver will come to be the shortened form of family caregiver, but until then I think we should stick with the adjective and refer to ourselves as family caregivers to dispel confusion and to reiterate the fact that our relationship with the recipient of care is one that is based on affection and/or familial responsibility. In addition to the fact that it helps lessen feelings of isolation, there is another very good reason to adopt the title of family caregiver, and that’s because it provides us with some very significant power, power to help bring about changes that can make a positive difference in our loved ones care and the quality of life of our entire family.

Many of the family caregivers that are uncomfortable thinking of themselves as caregivers, also don’t see that caregiving can easily be like a job, more work and responsibility than was ever possible before the advent of modern medicine. They just don’t see the connection between the difficulties of caregiving and the fact that our healthcare system was never set up to help patients with chronic conditions, which of course is what our loved ones have. That’s why Medicare is in such sad shape these days. It is paying doctors to put people in the hospital but not to spend time talking with them, answering their questions, giving them advise and counsel. As advocates for our loved ones, as advocates for us as their family caregivers, we must come together and speak with a common voice that says we want, and need our healthcare system to be more responsive to people with chronic conditions. After all the majority of healthcare expenditures are spent on people with chronic conditions. Let’s make that money work for us by providing the type of care and services we need.

This is our issue good quality, affordable healthcare that is consumer focused and consumer friendly. Healthcare that is flexible so that it meets the needs of individuals, and healthcare that respects families and considers family caregivers as real members of the healthcare team. If we don’t stand up and demand it, why should we think it will ever come to be?