My friend with terminal cancer could no longer drive to her doctor appointments. I was taking her to an appointment for the first time since she had stopped driving. I was in a hurry and going the quickest route possible, knowing it was uncomfortable for her to sit for long.
She was getting anxious telling me a different route to take (a longer route). My agenda – to manage her discomfort by getting her there quickly. Her agenda – to have some semblance of control over this event by having me take the familiar route.
Often those with chronic or terminal illness strive for a sense of control. Especially with each loss that comes along in their decline. They grasp even more intently for control over their body and their environment.
Conflict often comes when caregivers dictate what they feel is best for the patient or loved one. I viewed my friend’s physical comfort as the priority, she saw her emotional comfort of a familiar route as the priority. After communicating our expectations, the tension was resolved.
It’s important whenever possible, to communicate our intentions as caregivers and ask
our patient or loved one what their expectations are. Then we can work together to create an outcome that honors both perspectives. This kind of communication can help to alleviate power struggles.
A client of mine had been a caregiver to her sister with ALS in her own home. There were times when my client would express frustration about what she viewed as her sister’s stubbornness.
Over time my client’s sister began to lose her ability to speak clearly, yet she refused to use a special headband pointer to spell out words. Not wanting to be bed bound, she insisted on being placed in the Hoyer lift to be able to sit in a recliner for a few hours each day.
These control issues were exasperating for my client. But in talking it through, she began to understand the natural tendency for anyone who is losing control of their physical faculties, to hold tightly to whatever is left in their control.
It’s important for caregivers to understand this phenomenon of losing control. It’s a survival instinct that we all possess. When we understand this concept, we are better able to be understanding and compassionate. We are able to give care in the best way possible.