This is usually where I try to find the silver lining, but today, I’m just telling the truth: I am bone-deep exhausted.
For those who don’t know our life, my husband has global aphasia after a stroke, which has profoundly affected his ability to communicate and understand. Physically, he can stand and walk, but it’s a grueling, slow-motion process that requires a cane and constant vigilance. We have built our world around speech therapy, physical therapy, and the relentless reality of his limitations. It is a life rooted in love, yes, but also defined by a frustrating, soul-crushing fatigue that comes from being perpetually on guard.
The Aphasia Barrier: Hearing, Misinterpreting, and Ignoring
Aphasia is so complex. My husband can hear me. He often understands the emotional tone of my voice. But when I give a simple instruction—something absolutely critical for his safety—it often feels like my words are scrambled, misinterpreted, or simply ignored.
“Please don’t try to get up without your cane, you’ll fall.”
“No, you have not taken your medication yet today. You must take it.”
He does not listen, or cannot listen, I don’t even really know. Or he’ll insist on doing something that directly contradicts a safety instruction. It’s not out of malice; it’s the damaged wiring in his brain. But when I have to physically rush over and intervene, every single time, to prevent a fall or stop a medication error, that exhaustion boils over into burning, frustrated resentment.
The Slow-Motion Menace: Walking, Willpower, and Risk
The ability to stand and walk—even extremely slowly with a cane—adds a terrifying layer of complexity. Mentally, he still feels like the strong, independent man he was before the stroke. He desperately wants to be capable, and that desire is wonderful.
The problem is the profound mismatch between his will and his physical reality. His judgment is impaired, his balance is tenuous, and his slowness makes every movement a high-stakes gamble.
I am trapped in a cycle of repeating the same phrases—”Wait,” “Cane, please,” “Let me help“—a thousand times a day until my voice is hoarse. He does not want the help. He wants to do everything by himself. And that great… until its not. It feels like I am constantly battling him, not just the physical challenges, but his sheer will to do whatever he wants, regardless of the danger.
The Burden of Responsibility
When he attempts something dangerous or ignores a boundary, the physical act of intervention is only the beginning. The real toll is the mental weight of knowing that if I don’t stop him, he could break a hip, suffer a serious fall, or worse. His entire physical well-being rests on my shoulders, 24/7.
And when I ask him, firmly or gently, to follow a vital safety rule, and he immediately tries to circumvent it, it feels like a painful rejection of my efforts. I know it’s the aphasia, the brain damage, but sometimes, I just want him to listen. I want one moment of simple, effortless cooperation.
If You’re Here, Please Know This:
If you are reading this and relating to the constant, weary battle of wills with your loved one, please know this: You are not a bad caregiver for being angry.
You are allowed to feel frustrated. You are allowed to feel trapped. You are allowed to resent the unending difficulty of this situation, because this is a relentless, demanding reality that neither of you chose. Acknowledge the deep, draining pain of it.
My Pledge for Tomorrow
Tonight, I am going to let the exhaustion have its moment. I will allow myself the temporary relief of tears and the anger at this unfair situation.
Tomorrow, I will find a way to shift the perspective. Maybe I need to look into new, more robust physical aids. Maybe I need to call a counselor who specializes in aphasia-related behavioral issues. Maybe I just need a long, quiet walk—alone.
But for tonight, I’m simply putting down the weight. And if you’re carrying a similar burden, please give yourself permission to put yours down, too, even if it’s just for five minutes.
What is the most effective coping strategy you’ve found for dealing with extreme caregiving fatigue?
