How Things Work When Your Lover Is Also Your Caregiver

I know that eventually, I’m going to have to ask this person I’ve been in a screaming match with for three hours to take me to the bathroom, which can be really awkward. “You can be such a douchebag! That said, I have to pee.”

Oct 8, 2012 at 10:00am | Leave a comment

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“I don't know how this is going to work,” my mom said as I was imploring her for the twentieth time to please not be negative, telling her that I believed in him, that I knew he loved me, that I surely loved him, and that we wanted to get married.

I knew we needed much, much more than love to make it work, but I believed all she needed to do was to stand back and let me prove it to her. As I said these things over and over, with as much firmness and conviction as I could muster, I was secretly thinking to myself, “I don't know how this is going to work either.”

My mom assumed that Gary was the first guy that I'd been with, and I'm sure she thought that I was throwing away my life to follow this guy just because he was my first kiss, my first grope, my first you-name-it -- you know, all the usual stuff that an average girl experiences in her late teens. But because I was already 21, she couldn't forbid it or ground me to keep me safe until the novelty wore off and the “puppy love” faded. She had to let me go.

So far, this is not a unique story. Plenty of women are so-called late bloomers like me, and they’ve had to have this same argument with their mothers about dropping everything and moving away to be with their first serious boyfriends before the relationship has hit a year.

What's different about my story is that I had been physically dependent on my mother for even the most basic things for my entire life; she had to hand off that responsibility to someone new, and she was terrified.

I have cerebral palsy (CP); mine is classified as spastic quadriplegia because I am spastic (tight, constantly-flexed muscles prone to spasms) and affected in all four limbs, which means I am completely unable to walk and I lack the strength, coordination, and balance needed to do self-transfers. If I need to be moved anywhere -- from my wheelchair to the couch, to the toilet, or to my bed -- I need complete-lift assistance.

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One of my tattoos.

Over time, my mom had become increasingly unable to do these transfers by herself, so she and my aunt had worked for over a year to get me enrolled in a program at the University of Houston that provided attendant care on a full-time basis. It allowed me to live in a dorm room by myself and go to class or anywhere else independently, all the while knowing that attendants were back at my dorm complex -- on call 24/7 -- to meet the needs of me and a few dozen others. This was the independence and opportunity that my family wanted me to have.

So, in my mom's mind, I was giving up my spot in this wonderful program just because this Gary, a guy I barely knew, was pressuring me to move in with him. (He never pressured me ever, but my mom thought he had, no matter what I told her.)

She kept trying to talk me out of it, even after Gary had secured a ground-floor apartment for us (he had been living with three roommates in a not-wheelchair-friendly house) and started taking some of my stuff with him when he drove back after visiting me at UH on the weekends.

When the fall semester ended, I came home from UH to my mom's house for my very last Christmas break as a resident of Houston, and she talked to me at least five times a day about calling off the move. She alternated between anger and sadness, and she got upset when, at our extended-family gathering on Christmas Eve, I received dishes and towels and other housewarming gifts. She argued until January 2, 2000, the day that Gary picked me up to take me to my new home. 

Despite my absolute certainty that this was a very right thing to do and the deepness of my feelings for Gary, as we pulled out of my mom's driveway, there was a miniscule part of me that wished she had done something extreme enough to stop me.

It wasn't because Gary was the first guy to come along (as my mom believed); sexually, he was probably the tenth, and my doubts were due to my experiences with numbers one through nine.

In school, guys I met never showed an interest in me. Many people mistakenly think that I am disabled mentally as well as physically because (1) I'm clumsy, spastic, and using a wheelchair (2) my voice is a little slow and slurred and (3) my arms naturally curl up against my chest when I’m not actively holding them down. (In other words, I am the very picture of the look exemplified by Timmy on South Park.) If they don’t actually talk to me for any length of time, they’ll never have any evidence to contradict that initial assumption.

Between guys being put off by my appearance and my constant, nagging fear that everyone I met thought I was mentally retarded, I never had the confidence to flirt until I found online chat rooms (very new to me back in 1997), which were where my words rather than my wheelchair made the first impression.

Plenty of guys would come to like me, but whenever I would finally share the fact that I had CP, every guy anywhere near my age would lose interest pretty fast -- either because they balked at the potential responsibility of taking care of me or because they were afraid my disability would put a severe damper on having hot-monkey-love, standing-up-against-the-wall, semi-acrobatic sex.

Older, middle-aged guys would often stay interested (probably because the possibility of getting some from a 19-year-old trumped everything else), but I knew there was no real future with a guy near (or beyond!) my mom’s age. She would have absolutely refused to accept me dating someone that much older that me. So, I had a few casual flings, but nothing really developed from it.

Then I met Gary, who was just three years older than me, and so I was shocked that he didn’t lose interest when I told him about my CP. He’d previously had a job where he worked around people with severe mental and physical disabilities, so he wasn’t thrown by the sight of my wheelchair (or me, for that matter).

We soon started seeing each other every weekend when he drove down to visit, and during that time he learned most of the stuff necessary to take care of me -- everything except the particularly gross or difficult stuff (which I still left to the attendants), and I was afraid he might not be able to handle it once it was on his shoulders. 

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As soon as we pulled into the parking lot in front of our apartment, my stomach began to rumble in its nervous way and I was forced to put him through his first desperate run to the toilet with me squirming in his arms, nearly causing him to drop me. He received similar crash courses in everything else I had shielded him from within the first month -- including things that the average guy goes to great lengths to avoid every month, if you catch my drift. 

Saying it was stressful would be a gross understatement. Think about all the points of conflict any couple has to deal with when they first move in together: chores, dividing closet and bathroom space, deciding what to watch on TV, choosing meals, etc. (Also, imagine the contrast between me growing up with a borderline “neat freak” mom who kept things spotless and Gary coming from a run-down house shared with two other bachelors his age; as such, there were just a things I had to teach him, like, “Dirty laundry shouldn’t be tossed on the floor,” “Floor laundry shouldn’t be picked up and worn again,” and, “Vacuum cleaners are a handy way to keep your carpet from looking like the floorboard of a taxi.”)

Now, add the fact that I’m extremely limited in how much I can contribute to all the household chores and that he has to physically care for me virtually all day, every day.

In short, it was pretty rough, and the physical caregiving can make the normal ups and downs of a relationship a lot more complicated. Have you ever had a fight with your partner and you just had to leave for a bit to cool off? Maybe you go over to a friend’s place to watch a movie, go out for a drink, or take a long walk just to clear your head. Well, those options aren’t there for us; he can’t leave for hours at a time because I’ll have to go to the bathroom or I’ll just need help sitting up correctly in my chair. As such, arguments can’t end with the finality of a slammed door, and apologies can’t start with a sheepish, “I’m sorry,” when he comes back home.

Without that break, we can get stuck in the emotional quagmire of shouting, tears and unending argument, and I know that eventually, I’m going to have to ask this person I’ve been in a screaming match with for three hours to take me to the bathroom, which can be really awkward. “You can be such a douchebag! That said, I have to pee.”

In the end, though, his caregiver role sort of became the break that other couples take after an argument. When I need something that can't wait, such as food (I tend to forget to eat until I'm lightheaded), the few minutes that he spends getting food together is a few minutes of relatively gentle quiet, and the fact that he's hurrying to finish getting dinner ready so I don't actually get sick is something that I take as pure display of affection and loyalty.

By the time we're finished eating, no matter what horrible things we might have said to each other before, the anger has cooled in both of us. The next time he picks me up after that, I kiss the side of his neck, then we’re usually stumbling over each other to be the first to apologize for everything.

I think that’s why we're still together 13 years later. How we make things work is to just keep going like everyone else until the next need comes up -- and it’s usually just the distraction needed to move past whatever stupid thing one of us said or did.