Caregivers carry a tremendous weight, which is why those on the outer circles of support need to give the main caregiver a chance to vent without judgment. Those on the outer circles need to offer support to prevent caregiver burnout. Moreover, caregivers need to be given space to feel whatever they need to feel.

Kimberly Williams-Paisley tackles the weight of caregiving in this latest installment of our online book club speaking about Kimberly Williams-Paisley’s book, Where the Light Gets In. She writes about her mother’s experience with primary progressive aphasia.

Space to Speak

Caregivers need to be given a space to admit what they’re feeling. While Williams-Paisley’s mother is in an appointment, her father tells the family how he feels on page 81:

Dad knew we were well beyond small talk. He spoke rapidly in a whisper. “I’m tired,” he said. “Your mom is really challenged at work. We fight a lot more at home. She wants to do everything herself, but she just can’t anymore. I want her to stop driving, but she’s stubborn, and I don’t know how to get the keys away from her.”

It’s not just about venting stress. By sharing his feelings, he informs his children where he most needs help as a caregiver. The day to day tasks are stressful, but he also needs support in helping his wife understand and come to peace with her limits. Venting gets everyone in the family on the same page, working towards the same goal.

Asking for Help

Sometimes help isn’t offered because the caregiver doesn’t let people know that they’re overwhelmed. Williams-Paisley admits about her father on page 132: “The truth was, he told me only later, the job was so hard for him at times that he felt uncomfortable asking anyone else to take it on.”

Moreover, he doesn’t think anyone else is up to the task. She writes on page 133: “Dad couldn’t imagine that anyone else would know Mom well enough to keep her from being hurt or even more discouraged than the disease already had made her.”

Of course, other people could do the job or help with the job. It’s not that the caregiver isn’t important, but there are other people who can help if they know what is helpful to do.

Accepting Help

Sometimes it’s pride that keeps the caregiver from sharing their heavy weight. Williams-Paisley’s father is proud to be his wife’s caregiver. On page 131, Williams-Paisley writes that her mother “didn’t realize how much Dad was doing for her. In fact, he seemed to take great pride in being the only one she wanted help from.” It makes him feel good to be needed. He likes that she trusts him and turns to him in her moment of need.

Moreover, her father also dreads the day that his wife will not know how much she needs him or will not need him anymore. On page 144, Williams-Paisley writes, “All the same, he wondered how much grief he would feel when this intractable stubbornness began to fade. Now, though, it was too intense, like a lightbulb with blinding wattage.” The now is intense, but it also shines a light on the loss that is coming in the future.

Do you feel a similar weight as a caregiver?

Image: Victor Freitas via Unsplash