Nurses come to the profession to provide care for individuals and, in some cases, populations. It is what we do best and for most of us, what we like to do. Many of us also become spouses and parents and care for our families as well: It is part of the bargain.
So, when our parents themselves become elderly, we find ourselves taking on another caretaking role. For most of us, even though we understand in our heads what it means to grow older and to need assistance with medical issues and even activities of daily living (ADLs), we have a hard time accepting this for our parents. The transition is equally difficult for our parents, who may still view us as that less competent child of 15 or 20, when we are really 40, 50, 60, or older. Our parents often also express their unwillingness to be a burden.
The challenge of being a caregiver to an aging parent is one that many of you are taking on, as I have. Some of your parents are like mine; they have been stalwart, independent individuals who got through many hard times because of their strong will and extra hard work. Now, their independence is threatened, the body and mind are unable to do what the spirit still wills them to do, and in some cases the mental capacity is diminished by dementia, Alzheimer’s, or a stroke.
For many of us, caring for a parent presents a bigger challenge than we have ever faced with our own patients. The difference is that, with a parent, we know this “patient” intimately. We know of his or her lifestyle, of dreams and wishes that may still be unfulfilled, and of the willingness—or unwillingness—to comply with new treatment regimens. Sometimes we know our parent will not comply, that it is too much to ask of him or her. Our own immortality is threatened when we see a once strong and vibrant person reduced to needing assistance with ADLs or unsafe in the home in which we were raised.
We find ourselves advocating for our parents’ needs while they tell us not to make such a fuss. Most of us have thought that professionally we could work the healthcare system; after all, we tried it successfully on behalf of our children and perhaps a spouse. Suddenly we find that Medicare doesn’t pay for basics like eyeglasses or hearing aids, both necessary for functional independence. We find that the home health aide who might make it safer for our aging parent to live at home comes only through private pay mechanisms, or only twice a week for 2 hours to provide bath care. When our parent who lives in another state visits our house for a few weeks and becomes ill, no one in the local emergency department will provide services because they don’t know the primary provider, who is out of state.
In these circumstances, it is hard for us to recognize when we should step back and be the daughter or son. Our best role in this situation may be as the daughter or son, asking a nonrelative to be the advocate. It is important to refocus and look at all options, to make decisions taking into account the needs of the parents and the larger affected family. An unrelated advocate may be better able to help us see these options.
As possibly the only nurse in your family, you may be the one everyone in the family looks to to provide the caring, the decision making, the advocacy. You may know a nurse who takes on the whole burden of care of an aging parent. Is this person doing a good job of staying intact and rested? Probably not. I hear nurses say they are thinking of quitting, or have already quit, a job in order to move back home to care for an aging parent. Stop and reconsider. Remember that, in the short term, what might make sense can jeopardize you and your family in the long term. Looking for other solutions may be far more appropriate. It is important to continue to take care of ourselves.
One thing I have learned from my experience: Involve the whole family to the extent they are capable of being involved. Family members may all have unfinished business; the opportunity to make their own peace with the parent and their relationship is important for each member of the family. Weaving the parent’s care of whole cloth leaves the cloth intact for future family support system needs. Your parent will understand, and you will be part of a family unit that survives.
Rebecca M. Patton, MSN, RN, CNOR
American Nurses Association