Caretaking Chronicles: Three Simple Words?

I liked to play word association games in my head.  They are a simple way for me to figure out how I feel about a certain person, place or thing. I like simple. I mean, I eat cereal for breakfast, people.

Let's take the word mom. + the first three words that pop into my noggin.

Perm! Beads! oh, and big belts.

Perm! Beads! oh, and big belts.

- At 5 I said, "perm, beads, street fairs." She still loves those HUGE necklaces but holy baby J did she have a collection back then. And a slight mullet. She really had a nose for style in early 1980s.

- At 7 I said, "perm, beads, blue-light hospital (Northwestern)". I told you she liked those necklaces. At 28 she went numb and was diagnosed with MS. They had good lime Jell-O at that hospital.

- At 9 I said, "Chicago, Nintendo," and you guessed it, "perm". From 4th-7th grade Ho-Ho lived with her parents in South suburban Chicago when she wasn't hospitalized for psychiatric reasons. They got me a Nintendo and I got fat over the summers, and every weekend I visited. It was glorious (except for the hospital part). I even got to hang with my great grams, Mildred, as she lived with my Gs as well.

- At 16 I  said, "Independent, perm-on-the-top-party-in-the-back, selfless". She was only 37. I thought I got away with everything (and she thought she got away with that mullet). Looking back as someone close to her then-age, I realize what a complete and utter moron I was. I also realize how sick she was when my friends and I would intercept letters sent to her imaginary lovers signed with her pen-name, "Elizabeth".

- At 18 I said, "Worry, intelligent, maybe-this-will-work?" I graduated from high school, tried to go to college near her and ended up transferring home. Two-thousand miles separated us and for the most part, things were OK for her. A disappearance here or there, and when she eventually showed up, she was wearing a fellow plane passenger's too-tight clothes (she stole borrowed their luggage) . But, I mean, for the most part, OK?   And by OK, I mean my grandparents spent their retirement carting her around the country and writing her second master's thesis when she had to be hospitalized. God bless my grandma and her experience as a psych nurse and grandpa's affinity for driving (gas-brake-gas-brake is how he rolls).

- At 25 I said, "SHIT, SHIT, SHIT". I realized just how much work my grandparents had put forth and how massively fucked up the mental health system is in America, and in particular Arizona. We tried to maintain the status quo for as long as possible, but things got too out of hand. With family members spending hours  on the phone, sifting through piles of receipts and collections notices, and month-long visits to the desert we conceded we couldn't do this from afar. So we moved ourselves and Ho-Ho back to God's country so that we could streamline her care and have more oversight over her daily shenanigans.

So. Many. Phone. Calls.

So. Many. Phone. Calls.

- At 30 I said, "Hope, beads, cosmetics". Within a few months of moving to a supportive living facility in Oak Park, IL, Ho-Ho was down 20 lbs., drenching herself in enough perfume that she smelled like a French whore and constantly buying make-up. When she wasn't exercising or at Walgreen's (they should name an aisle after our family), she was in the weaving room vigorously waving to everyone that walked by. She LOVES to wave. And she loves to call me 20 times a day. But she seemed happy with her chunky necklaces and new friends which meant we could all breathe a little bit.

IMG_5339

Maybe no more psych facilities? Maybe she just needed her meds balanced? Maybe I could make myself forget out the six-month in-patient facility we had her committed to if I just bought enough blue eye shadow for her?

- At 35 I say, "Exhaustion, resentment, guilt". And of course love. I mean, that's obvious, right? Because the exhaustion and resentment lead to guilt. But if you didn't love the person for whom you are caregiving, you couldn't feel guilty, right? At least that is what I tell myself because I feel like anger and resentment are such harsh responses to an absolutely blameless situation. And I know those emotions are incredibly misplaced when directed at Ho-Ho - it's this God-forsaken disease(s) that has/have completely altered the trajectory of her life, and as a result, ours' too.

This is a really hard process,  especially because it's so isolating. You have to learn to accept inevitable  truths that seem even more gut-wrenching than the finality of life. And this is coming from a person who is so grateful to have such a supportive network; my heart aches for people who are alone in business of caregiving. It's a real bitch.

I suppose the saving grace in this whole thing is the perspective that the three words chosen to describe a situation or person are constantly shifting, evolving even. One day "exhaustion" might turn to "happiness" or "relief" (often from my own guilt).  My one day was Friday and although it has since passed and we are back to a new, more unpredictable baseline, I'll take it.

Click here to check the archive of Caretaking Chronicles - I promise they are mostly funny.

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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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