Bad News

Avoiding Bad News, Family Secrets, and Aphasia

No one wants to hear bad news. Unfortunately, there are times when we need to receive it. When Kimberly Williams-Paisley and her family receive the bad news of her mother’s primary progressive aphasia diagnosis, they all bury their heads in the sand like ostriches to give themselves time to process the information.

Keeping family secrets is the topic of 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.

Secrets From Others

Williams-Paisley is asked to keep the secret inside the family. Her mother isn’t ready to share the information with the rest of the world; not even friends or neighbours. After all, she originally even kept the diagnosis from her children. Her father states on page 71,

She asked me to keep it private until she was ready. So that’s why we’re just telling you now. It’s really important to her that you guard her privacy and not talk about this with people outside the family. She doesn’t want sympathy. She doesn’t want you to treat her any differently. She wants you to laugh with her about this as much as possible. And anything you need to say to one of us, you can say to both of us.

Williams-Paisley respects her mother’s wishes, but her insistence that it be kept a secret cuts Williams-Paisley off from support she may need. She’s asked to pretend that nothing has changed when everything has changed, and not process it the way she wants to process it.

Secrets From Yourself

And that is exactly what she does, refusing to cry since she sees expressing that emotion as a sign of acceptance. On page 71 she admits, “I felt that if I gave in to their sorrow I would be accepting that this was real, and I wasn’t willing to do that yet.”
Crying makes it real, and she isn’t willing to believe it yet.

Her parents also refuse to mourn or consider difficult questions. After the diagnosis, her sister, Ashley, joins online support groups and researches what to expect from PPA. She speaks with an end-of-life specialist on what to expect from the final stages of dementia. She’s able to arrange a call between her parents and the specialist, but it doesn’t quite go as planned. On page 73, Williams-Paisley writes about the phone call:

The talk felt like a sermon from someone who thought she knew everything, and my parents didn’t want to hear it. They didn’t want to discuss end-of-life decisions. They had a different focus: taking the advice that Dr. Nealon had given them just before they left her office on the day of the diagnosis. “Enjoy each other while you can,” she’d said. It wasn’t enough, Ashley knew, but again she had to back off.

The specialist’s advice is sound, but their parents aren’t ready to hear it. The specialist’s goal is to help the mother make difficult, end-of-life decisions so she can have some say for how things will unfold. This is important to do before she loses the ability to express herself. But her mother isn’t ready to consider the possibility.

Do you also keep difficult information close or do you find it more helpful to tell others?

Image: Watari via Unsplash



  • Laura
    December 12, 2018 at 2:47 pm

    I have PPA and I want to share that I also wanted to keep it a secret but my husband thought otherwise and I’m so glad for it. He wanted tell the world that I had PPA.

    There is a study at Northwestern University in Chicago for people with PPA where you give them the time, then you receive compensation for the time you have given. It’s really worth it.

  • Susan Malkowski
    December 12, 2018 at 3:53 pm

    I also keep this to myself. I dont want anyone – family or friends feeling sorry for me or treating me differently ( Poor Sue). I am a VERY active person volunteering my time for PADS and monitoring wildlfe for the Forest Preserve. Have practised Tai Chi for 12 years. The thought of not being able to be ME scares me to death. The uncertainty of my future brings me to tears sometimes.

  • Kathy McNett
    February 16, 2019 at 1:39 pm

    I have PPA too. I’ve been active many years in Kansas in primarily 2 areas that talk about sharing your diagnosis, so to speak. With one, my daughter contracted a rare disease when she was 2, and it has since become the #1 reason for acquired heart disease in children. In the meantime, life was a nightmare and presented a number of challenges as she grew into the school system. The other is lengthier to explain but has the same effect of speaking out about it frees you up from shameful secret keeping that can stand in the way of necessary help. After all that talk, I didn’t feel keeping the diagnosis of PPA a secret would be any different. Boy do I almost wish I could take that decision back though. Once they read dementia, all babysitting requests immediately stopped. I don’t feel I have the same respect from my children in any area of knowledge at all. Then, in December, my children ‘helped’ me move to a new apartment and in the process, got rid of everything they didn’t think was necessary to my life anymore. The measure of necessary was whether or not it would be needed in one of my daughter’s homes, when the time comes that I need to move in with either of them, even ranking an order of which it would be first. I have no idea what meaning my life is suppose to have now when it seems I have nothing to contribute to anything, anywhere. My girls are saying ‘I love you’ but it is like I’m already a ghost in their life. Maybe this is their way of dealing with losses to come, but meanwhile, I need to find meaning and hope in the present but it very stripped. I even stopped attending church because it was so difficult to process everything there at the. I thought there might be home visits to stay connected, maybe be a stop for the carolers at Christmas, and things like that, but that hasn’t happened either. It’s all very surreal.

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