The Unpleasant Reality

Is this what any of us want?

As a hospice chaplain/spiritual counselor, one concern often raised by a family member or friend is the state of his or her loved one. Regularly used is some variation of the phrase, “They would be disgusted to know they ended up like this.” While one of the primary goals of hospice is to reduce and manage any pain or anxiety, our care cannot remove the effects of memory loss or reverse the signs of aging and decline. Sadly for those rightfully grieving, guilt can creep in that they did not prevent their loved one’s illness and decline. Sometimes this is accompanied by a memory of that person specifically stating they would rather die than end up confused, bed bound and frail. How do we deal with our failure to meet such a request? In my mind, it is important to reckon with two contrasting elements of such a concern.

First, we must recognize that all people share a desire to avoid death. But since we cannot avoid death we desire to control the way in which we die; hoping to avoid the most unpleasant aspects of aging and death. I would wager that most people when given a choice would like to avoid spending their last days confused, constantly in a wheelchair or bed, and reliant on others to feed and change them.

While it is understandable to have this feeling it is unreasonable to request this of a loved one. In reality, it was unlikely a request, but simply that person sharing honestly that he or she was afraid of losing him or herself physically, mentally and emotionally. The fact that a person has progressed to a point that he or she is dependent on others for care is most likely not the fault of the loved one or even the person themselves, but rather the natural progression of that person’s illness. While it is fine to acknowledge that the person would be troubled to see him or herself in such a state, it is unreasonable and unfair for loved ones to assign guilt or blame to themselves for that which is out of their control.

Secondly, regardless of how your loved one became ill, the kind and loving thing to do is to care for them. This becomes more difficult when the person does not recognize you, does not thank you, and might even express anger that he or she cannot do what she wants or live where she wants. It is painful to receive such responses from a loved one even if we know the response is unwarranted or misplaced. The honest truth is that you do have a choice to leave that loved one behind, refuse to pay for care, and do your best to forget about them. Most of us would recoil at such as suggestion knowing that part of our duty to those we love is to care for them, in part because we want to honor the person we love, but also out of the hope that we too would be cared for in our hour of need.

Therefore, when the troubling thought that a younger and clear-minded loved one would respond in fear to seeing his or her current state, remember that fear is normal for all us, especially confronted with it as we are as caregivers; and that despite our desire to avoid the undesirable, we honor our loved ones not by preventing what was unpreventable, but by providing care in the most difficult of times.