A friend recently wrote in her journal about having to take time off to be a temporary caretaker for her partner, who had not-minor surgery on his shoulder. I sympathized with her experiences, but she was careful to point out that the few weeks she spent caretaking in no way compared to the years I devoted to helping my parents die.

I disagree.

Caretaking for long periods of time is different, sure; and the cumulative effects of the stress is severe. No argument.

But I think any time you take responsibility for the life of someone who is physically or mentally unable to tend to their own needs, you slip into a surreal world of suspended priorities. In my book Grieving Futures I talk about “The Miserable Tolerance,” the point at which everything flattens out into two dimensions of importance: what needs to be done now, and what needs to be done later.

In that strange place, the caretaker’s next coffee is as important as the next feeding or wound care session or medicine dose: everything is so damn important that it becomes impossible to give weight to anything. It’s a blur of exhaustion and desperation. Sleep is planned for but rarely truly achieved. Worse, outside of the bubble, the world continues on without noticing.

It’s that part which causes the most dysfunction, even for short term care-takers. Life — your job, your social life, your car repairs — continues on as if nothing cataclysmic has happened. To be honest, although I don’t mean to sound cruel, this is one area where mourners have the upper hand because society at least allows mourners the right to be divorced from reality. That right isn’t granted to caretakers, who are expected to “work around” their obligations as if caretaking is the mental equivalent of walking the dog.

I sometimes get that “look” when I tell people I moved home at 22 to care for my parents full time. I know they are wondering why the hell I didn’t get a job, or go back to school, or something normal and sane like that. To be honest I planned to, at first. Then I sunk like a lead marble under the surface of trying to take care of two physically damaged people who were unable to take care of themselves or each other. Words cannot describe how exhausting that was for me.

So when someone says they have to be caretaker, even for a brief period of time, I remember those days when The Miserable Tolerance ruled my world, and I hope for better for them. I hope that every caretaker gets a chance to sleep at night. I hope they get to take off early from work or even just take off from their job for a while. I hope that their time in the surreal bubble does no lasting harm. I hope, anyway.

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