Life In The Fishbowl: A Hidden Aspect Of Disability - The Mobility Resource

Life in the FishbowlMy husband is a 25-year experienced high-level quadriplegic. In his case, he can shrug his shoulders, turn his head and tell a joke funny enough to make you fall down – but physically, that’s all he’s got.

I have a full-time job and we have a 13-year-old son. Because of this, we’ve hired caregivers over the years; some hourly who come in part of the day and some who have lived with us – to help care for him because of the intensity of his needs.

Caregivers give me a lot of freedom because they allow me to be gainfully employed full-time, give me time to be a better mother and allow me to be a wife first instead of a caregiver first.

Caregivers administer medications, give him showers, do bowel care, bladder care, get him up in his wheelchair, feed him breakfast and lunch, even wash and change the sheets on our bed, all independently while I am doing other things. Sounds totally rockin’ awesome, right?

Well.

Sort of.

You know how when your parents come for a week long visit? You suddenly realize that you can’t get out of bed in the morning in your crappy pajamas with a hole in the butt and slink out to the coffee machine with your hair sticking out 80 ways. Well, that’s life every day with a caregiver around. You have to at least put on a modicum of reasonableness, which gets really old, really fast. If there’s one place you want to be uber comfortable and be able to look like the bride of Frankenstein if you want to, it should be your own house. And not have a set of eyeballs potentially casting judgment on you.

And you also get to parent in front of a caregiver. Your child makes the straight-A honor roll and we celebrate with a big high five and ice cream sundae? The caregiver shares that intimate moment with you. Like it or not. Child swings from the rafters while beating his chest and you get frazzled and maybe don’t react in the very best way you would if you weren’t tired from work, weren’t trying to figure out what to make for dinner and weren’t also cleaning up the mess the dogs just made? Too bad, the caregiver just heard (and usually observed) your less than perfect response. And may be passing judgment on your parenting skills.

Want to talk about something private with your husband? Better talk quietly or ask the caregiver to leave the room, which is always awkward to do (and just begs for eavesdropping). Irritated at your husband because you have asked him eight times to do something and eight times he has failed to do so? When you ask (not as nicely) the ninth time, the caregiver gets to hear you ask but doesn’t know you have asked eight times before. So the caregiver is probably passing judgment on your communication skills and patience.

And in the case of a live-in caregiver, it is even more difficult. This person is up in your business 24/7, quite literally.

We currently have a live-in caregiver and in exchange for the massive convenience we derive from this, we give up privacy. He sees me in my crappy pajamas with my hair sticking out 80 ways (note: I did throw out the ones with the hole in the butt). He sees me in my not so perfect moments as a parent and he sees me get irritated at my husband. But he also sees the good – when I shine as a mother, how much I utterly adore my husband and how devoted I am to him.

But despite this, no matter what, the point is: he sees it. He sees it all because he lives here. In our house. Under our roof. 24/7. In our home, we can never escape observation. Yes, we each spend time away from the house and in our respective spaces, but you can’t live with someone and a) not see them pretty much all the time and b) get under each other’s skin to at least some degree.

So that caregiver thing. Love it. Hate it. Need it. Can’t do this gig without it. But it’s a double-edged sword and a delicate dance.

 

Photo credit: josullivan.59 / Foter / CC BY-NC-SA

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