What happens when the person you love slowly becomes someone you barely recognize—and sometimes even a “They”? That question haunts me more than anything else about PSP. I think awareness of the issue may offer some help or at least preparation to some, myself included.
Being part of this community has taught me something important: frustration isn’t a weakness or failure – it is a natural response to the overwhelming scale of the challenge of PSP and it must be for many other conditions like it. Every relationship has its tensions, but when life is magnified through the lens of a disease that changes both mind and body so quickly, those tensions can feel unbearable.
Under normal circumstances, some of these emotions might break relationships. But with PSP, there’s a need to double down and hold things together – and that necessity can make everything harder, causing bitter feelings of resentment, anger and probably regret.
Caregivers often see apathy, sudden rage, and the heartbreaking loss of communication and cognitive ability. It’s lonely. It’s painful. Often reading caregiver stories, it feels like the person you love is no longer the same or even there. And while I’m still navigating these early waves (albeit it is already pretty stormy), I’ve glimpsed how they impact those caring for us. I’ve had moments of apathy and rage that don’t feel like “me.” I’m slower than I used to be. And to be brutally honest, I wasn’t always easy before PSP—I was, in many ways, a pain in the backside. So now? Well, let’s just say I’m probably the premium version of that pain.
I keep coming back to one word I have seen a few times in caregiver conversations: “They.”
“Why do THEY do this?” “Why won’t THEY respond?”
It is not that I judge this in any way, I understand it but breaks my heart because that word signals something devastating – the patient has become “They,” not Dad, not Mom, not a spouse, not a friend. Just… “They.” I understand that feeling. And it terrifies me. The last thing I want is for my wife or kids to stop seeing me as “Beej” or “Dad” because my behaviour changes or I become unresponsive. Being a control freak makes that fear even worse.
I can’t speak for any other patient, only for myself: these changes are not intentional (see my posts on Apathy and Lability) They’re not deliberate. Research shows that after an outburst – what’s called emotional lability – patients often feel deep regret. I know I do. It’s painful to realize what you’ve said or done, knowing it wasn’t what you meant. Right now, I can still apologize to my wife, my kids, my friends. But I can only imagine how much harder it is when you can’t share that regret.
I don’t have generic advice (and anyway I am far from qualified – I am a retired accountant and management consultant) – just a hope for me and others for whom it is relevant: that my loved ones and I can hold on to our relationship through this journey. And if that’s not possible, then at least hold on to the understanding that the person inside is still there and doesn’t want to cause you pain. I honestly don’t know what’s worse: being so apathetic that you’re no longer present or feeling the pain of your actions. Apathy might numb the hurt, but the loss of empathy is its own tragedy.
I pray that my family – and all families facing PSP – can navigate this journey with connection intact and pain minimized. This disease is brutal, and my heart goes out to everyone living it, without judgment, only compassion. For now, I’ll savor every moment and hope the later stages stay far away. More than anything, I hope I never become a “They.”
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