I’ve been a bedside volunteer for more than five years; sitting with dying patients and their families once or twice a week for up to four continuous hours. Sometimes I stay with patients overnight. Regardless how demanding my responsibilities are, I know that when I leave the bedside, I’ll have three to six days to “recover.” It’s a time to prepare myself for the next week’s activities that can range from conversing about life, to witnessing a friend’s active dying. My downtime—something that allows me to recharge my batteries—is a luxury caregivers don’t have.
I thought I understood what they went through, until my wife suffered a stroke from a heart arrhythmia. Overnight, my daughter and I became 24/7 caregivers for my wife’s physical and emotional needs. Fortunately, she recovered with no lasting disabilities. But the three-month experience left me with a new and deeper understanding of what caregivers, especially those who are by themselves, may feel.
As a volunteer I was trained to have compassion for patients and understand the grief their families are experiencing. But I’ve found that some non-involved family members, staff, and volunteers often misunderstand the effects of long-term caregiving. Dealing with the impending death of a loved one is difficult enough. Adding on the mantle of “primary caregiver” can be devastating. For many it’s analogous to being tossed into a riptide. I’ve been in homes where the physical caregiving was provided by a professional; allowing the family to focus on the patient’s emotional needs. I’ve also been in homes where physical and emotional care were provided by the same person. When one person is responsible for both, misperceptions are apt to develop.
For example, Anna’s reluctance to allow a new pain medication for her sister was viewed as an ego dispute between Anna and the nurse. What the nurse didn’t realize was that during the six months of providing compassionate care, Anna had unsuccessfully tried to convince her sister to use this narcotic when it would be needed. What Anna expressed to the nurse wasn’t hostility, but rather the frustration of not being able to reduce her sister’s suffering.
There are unwelcome changes that occur in even the most compassionate person when caregiving is constant. For example, after three weeks of redefining my life in terms of my wife’s needs, I stopped activities that had given me pleasure. Although I knew it was necessary to subvert my needs to hers, I couldn’t help feeling some resentment—an emotion I was ashamed of having since I do love her.
I’ve found similar feelings expressed in my conversations with people who have been responsible for providing long-term care to their loved ones. We may feel guilty even thinking about placing any of our needs first. Although these feelings are present, we rarely feel comfortable talking about them.
A patient once said to me, “Dying is hard work.” I agree. Possibly being the primary caregiver for a loved one is right up there in difficulty with dying. Both the dying and the caregiver experience flip sides of emotions, such as love and hate, acceptance and criticism, and gratitude and rejection. Often these contradictory emotions are felt within the same moment. Having them is neither right nor wrong. They germinate from situations that are so expansive, those of us experiencing them are forced to sit still and just observe. If we can be accepting, we try to show ourselves a little compassion. Sometimes, we can’t do it alone.