Caregiving Chronicles: Difficult decisions and bad hospital TV

I’m sitting in a dimly lit hospital room next to a sleeping mom (Ho-Ho). She’s just been transferred from the neuro unit of one hospital to the acute rehab unit of another.

It’s like Groundhog Day 'round these parts; two lesions in four months. ER to rehab to home...and back.

Multiple Sclerosis is an asshole.

poster_from_postermywall (1)This time, while Ho-Ho’s symptoms are similar to this fall’s flare (that’s sounds like a sweet 90s rave), they are far more debilitating.

Now she holds my hand while she rests.  Sometimes I lay next her – the first time in years that we've shared a bed without me being a resentful jerk. Fine, I'm still a resentful jerk, however, my ire is directed solely toward ion Television's programming directors and their seemingly limitless catalog of Criminal Minds episodes. Sweet Mother of Pearl, people, switch it up once in a while!

In terms of her prognosis, and after decades of stubborn refusal, the doctors finally convinced Ho-Ho to start taking an MS modifying drug. My reaction? Do we want to slow the progression of a disease that has already reduced her quality of life to mopping up drool or falling asleep on a commode? Alternatively, do I want to help make a decision for someone that could, in effect, eventually lead to her death? And if so, we have no idea the timeline nor how it would actually play out.

So that's an easy choice, right?

Life was much simpler when she was a pissed off, ornery broad. It sounds simplistic, but the emotional wall that formed between us provided a well-defined boundary when it came to caregiving. Hospitals, medications, appointments, sundries – I could do it all and leave without feeling much of anything. Go ahead and dissect that, armchair therapists.

Now I struggle to leave her alone in the hospital. In all honesty, Ho-Ho requires more help than nurses can provide given their caseload.

“She’s calling us every 10 minutes to use the bathroom,” they say. I respond, ‘be grateful you  don’t feel the urge to go that often’… with a smile, of course. But it’s easier if we (family) just manage everything when we can.

Shuffle from bed to bathroom grab bar, pants and underoos down, run the water for 12 hours while she tries to use the restroom, give up, ‘roos and pants back up, shuffle and back to bed. And repeat.

I pray for her health to improve, but a dark corner of my warped psyche wonders if it would more humane for her to go peacefully before things continue to decline?  What kind of life is this for Ho-Ho? I feel like I am prematurely mourning her death while taking care of her. Talk about a mindf%$^.

But if you ask her, this is what she has to say…which I suppose is all that really matters, right?

This life, man. It’s nuts.

Want more like this? Check out the Caregiving Chronicles archive.

No one ever accused me of being rational. Follow Swirleytime on twitter @swirleytime and Facebook for interesting stories, links and a lot of self-deprecating humor.

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    Annie Swingen

    Chicago-based hyperbole enthusiast. Mom to a kid and sometimes my mom. Overboard (1987) obsessed weirdo. I like the funnies in life.

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