The Ugly Things No One Wants to Talk About In Aphasia Caregiving

by Brian Baez, Caregiver Liasion

“You’re so inspirational! I don’t know how you do it!”
I bet you’ve heard this too. After hearing your story about how aphasia has affected your everyday life, your well-meaning friends and family are eager to shower you with praise. Sometimes you try to downplay it, or share some deep life lesson that being a caregiver has taught you.

What you may really want to say is “Actually, this sucks!”

But you wouldn’t dare say those things out loud because everyone will think you’re a terrible person. You’re not supposed to think or say these things.

Raise your hand if you have ever wanted to say out loud all the ugly things you feel when it comes to being an aphasia caregiver. Go on, raise them. No one’s watching. I GUARANTEE you are far from being the only one because it’s completely normal! Here are just a few of the confessions I have or other caregivers have about their loved ones and their relationships:

  • “I’m 28 years old and I have a husband I many never have a conversation with again. What am I supposed to do? Who would fault me for leaving?”
  • “We have a two year old daughter, I work full time and I go to school full time. He’s jealous of the time I have to spend with the baby but he doesn’t help at all. He has no initiative and I can’t go on like this”
  • “I don’t feel like a spouse anymore. It’s no longer equal. It feels parental.”
  • “(They) are just not the same person, and I don’t like who (they’ve) become”
  • “I’ve done everything I can, and I can’t do any more.”

Maybe now, together, we can shed some of the guilt we feel about being completely human in a situation we never thought we find ourselves in.

These types of “ugly feelings” are nothing to be ashamed of. Your life has completely changed, and it’s the way our minds know how to process. The thoughts themselves are not dangerous, but what can be harmful is keeping them lock up, and stifled. Over time, they can build resentment and anxiety, leaving you feeling lost and isolated.

Sharing these things with a trusted friend or therapist in confidence can be an enormous relief. What other ways can we process these feelings? Maybe send out a message in a bottle, or tie it to a balloon and let it go! Join the Caregiver group on Aphasia Recovery Connection and meet others like you. There are many creative ways to heal, but first you need to acknowledge these feelings are just a part of what makes us human!

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