regrets

Aphasia Regrets

Kimberly Williams-Paisley has regrets. She outlines them in the first chapter of the book, along with the blessings she found through her mother’s experience with primary progressive aphasia. The two balance out to form shades of grey, or, as Williams-Paisley states, “Our lives today are no longer black and white.”

This is the 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.

Aphasia Regrets

Williams-Paisley realizes that primary progressive aphasia itself is outside her control. Therefore, she doesn’t have health regrets, but she does have pain when she thinks about the ways they handled her mother’s diagnosis.

On page 14, Williams-Paisley states:

My family made many missteps. I regret the things I didn’t have the nerve to discuss out loud. I wish I hadn’t listened to Mom’s misguided requests for secrecy and autonomy rather than to rational, practical advice from people outside the family who could have offered help to both of my parents. I’m sad that I didn’t keep a closer watch on my father, my mother’s primary caregiver. I’m sorry I had to be a long-distance caregiver, caught between tending my mom and mothering my own children. I hate that my sister wound up carrying so much of the burden.

Speaking up, communicating, watching out for one another: these form the backbone of Williams-Paisley’s list. It’s a personal breakdown of her situation, but they’re universal regrets that so many people share.

To Speak or Not to Speak

The primary regrets all center on communication: Speaking about aphasia inside her family, even when it goes against her mother’s wishes, by asking questions. Also, speaking about aphasia outside her immediate family so she can lean on friends and family for support.

On one hand, it is her mother’s primary progressive aphasia, and her mother’s choice to talk about it or not talk about it, share it outside the family, or not. But the rest of the Williams family is affected by the diagnosis, and they leave support on the table and questions unanswered by holding their tongues.

Having Each Other’s Backs

Williams-Paisley’s secondary regrets all involve her mother’s caregivers. She doesn’t feel like she paid close enough attention to how her father was processing her mother’s situation. Did he have the support that he needed in order to be her primary caregiver? Moreover, because Williams-Paisley lives far away, she has guilt about her own role as a long-distance caregiver. The first situation is easily remedied by regularly checking in on the primary caregiver. The second situation doesn’t have an easy solution.

Aphasia — either primary progressive aphasia or aphasia that comes after a brain injury or stroke — is not something you can predict or practice. You are thrust into an unwanted life change. It is easy to know that rationally and understand that a person shouldn’t have aphasia regrets, but much harder to pull off.

Do you have any aphasia regrets? Have you worked to release them?

Image: Maranatha Pizarras via Unsplash

Comments

3 Comments

  • drsflagler
    August 22, 2018 at 11:24 am

    Thank you for this post. Its very inspiring.

  • Dawn
    September 11, 2018 at 10:26 pm

    I’d like to hear more about people who are in situations that force them to be long-distance.

  • Linda
    September 29, 2018 at 11:21 am

    I’m not sure you could call it a regret, but it took so long for Mom’s diagnosis that we really had very little opportunity to do anything to help her slow down the progress of her Primary Progressive Aphasia. I wish the diagnosis had happened 4 years sooner. I have been her primary caregiver long distance for nearly eight years, ever since my father passed away. We knew she’d had a stroke, but the changes were sudden and seemed more like dementia combined with stroke aftereffects. She wanted to continue living where she had lived with Dad, and we wanted to give her time and comfortable spaces. I don’t regret giving her independence for as long as we could. There’s so much to this whole experience that it isn’t possible to cover even a tiny bit here. But it helps to know there are other people who understand what I am going through, because they are experiencing these difficulties too.

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