I’d 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 stayed with patients overnight. Regardless how demanding my responsibilities, I knew that when I left the bedside, I’d have three to six days to “recover.”
It was a time to prepare myself for next week’s activities that could range from cooking a meal, to witnessing a friend’s active dying. My downtime—something that allowed me to recharge my batteries—is a luxury many 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 her 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 long-term caregivers go through.
Addressing the physical needs of someone with a chronic or terminal illness is difficult enough. Adding in the emotional needs of both that person and yourself is like being tossed into a riptide.
I’ve been in patients’ homes where the physical caregiving was provided by health-care workers, 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. Unless you have provided constant care for someone 24/7, it’s difficult to understand the struggle caregivers experience satisfying their loved one’s needs and their own.
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—a totally irrational emotion I was ashamed of having, since I did (and still do) love her, and knew my needs were trivial compared with hers.
Similar guilty feelings are expressed by long-term caregivers. Although these feelings are present, caregivers rarely feel comfortable talking about them. Why? Because the mantle of “Mother Teresa” is often imposed on them by others or themselves. Expectations, regardless of the source, can become strait jackets from which even Houdini wouldn’t be able to escape.
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. Caregivers experience flip sides of emotions; love—hate, acceptance—criticism, and gratitude—rejection, just to name a few that might occur in a single day. Some caregivers would say within a single hour.
Try to imagine what you might feel after giving up your life to care for an aging parent, who screamed at you that you weren’t doing enough for her because a meal was ten minutes late. And you knew her ingratitude would continue until her Alzheimer’s eliminated this hurtful behavior.
Having contradictory emotions 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.
With increases in lifespan, people are living longer with chronic and terminal illnesses. That aunt who 10 years ago would have died from an incurable disease, is alive today and in need of constant care—maybe for the next five years. Will you be ready when it’s your turn to become a caregiver for a loved one?
Stan Goldberg 2011