caregivers for disabled people

Did you know Ming is disabled by ocd?   He mentions narcolepsy often, as his disability.  But ocd complexifies the narcolepsy all day long.  (This post is about caregivers for disabled people.)

Imagine needing to keep track of everything you do, including pills you take, but you fall asleep a hundred times a day.  Imagine needing things to be just so, with laundry, dishes, and other water-related cleanliness activities, but you are not sure what’s real and not real, because you’re half in a dream, much of the time.

What is reality is a big deal.  We need to be able to trust our own minds.  The medications used to treat ocd and narcolepsy can contradict one another.  His narcolepsy is treated with stimulants in the daytime, but stimulants can make ocd worse.  Ocd can be treated with stuff to help you relax, but if Ming relaxes, he falls asleep.

support

Being Ming’s partner, I give a lot of support.  Sometimes it’s exhausting, and I would like a break.  Being inter-dependent with him is my joy.  But sometimes caring for him feels at my expense.  I can get overly-attuned to him and need better boundaries.  But that can be scary too because connecting with him feels good also, and I need help too–I’m also disabled, by different things.

When we’re in a meeting and he’s falling asleep, I can easily nudge Ming and wake him up.  I can feel him falling asleep, almost without seeing him.  My soul is with his soul.

Easily I can reach for his hand and squeeze it.  He’ll wake up, sit up straight for a few seconds, and fall asleep again.  Well, he’s mostly standing up, for meetings now.

“Did you take a pill?” I can whisper, or ask if he has an energy shot.  Some people chastise him for drinking those–they don’t have narcolepsy.

But sometimes, I just want to attend the meeting!  I’m there for my own reasons, not really to wake up Ming.

If I let the other people in the meeting see Ming fall asleep 20 times, is that ok?  If Ming is more important than I am, more functional in many ways, is it my responsibility to wake him up?  I know he and I are not in a contest of who’s more important.  But it can hurt, to think he’s the one more needed at the meeting.

Ming is disabled, but socially he’s pretty normal.  At least he can be around people.  With my social differences, I’m the weird one, and seen as fragile in ways that may or may not be accurate.

flowers imagined

I’m a caretaker, caregiver, unpaid caregiver.  The disabled overworked spouse of a disabled person, doing a fuckton of work with little thanks.

Who would thank me, really.  He could, but he’s asleep.  His mom could, but Ming is not her job at all, anymore.  Someone should be taking care of her too, but she’s covid-alone, losing her voice in her apartment from never using it.

Ming’s friends could thank me.  But I don’t remember them thanking me either…  Probably no one knows how much I would enjoy that, or how much work I do.

I’m imagining dew-wet flowers in a classic bouquet shape.  I’m crying.  Wrapped in the crinkly plastic, with a little packet of flower food I throw away.  “Thank you for caring really fuckin’ hard for this person,” the card would say.  I can’t even think who would send it.  Guess I could send it to myself?

A bouquet of flowers isn’t what I really want, though.  Help is what I really want.

nice thing

Ming washes his hands a hundred times a day?  Not sure.  I’ve seen him unload the dishwasher–he’s the only one who’s allowed to unload it.  There are rules about what he can touch, and then when he has to wash his hands, after he touches what.

“I don’t make the rules,” is an oft-repeated phrase in our family.  If only we could find who made the rules and ask for some revisions.

Ocd means Ming’s hands can get so dry they crack and bleed, because the skin gets dried out from washing it.  Especially in winter.  The backs of his hands, his wrists, the vulnerable pinky side of the backs of his hands.

So a nice thing I do sometimes is ask Ming if I can put lotion on his hands, at night.  He usually lets me.  He’s usually half-asleep. “Here, give me your hand,” I say.  “Is that ok?”

“Yeah,” he says, happy and three-fourths asleep.

“Give me your other hand.  Does that hurt?”  I inspect them as I rub the lotion, to see how bad they are and where any cracks are forming.

“No,” he says, his eyes closed.  “Feels good.”

“Ok, all done.”  At night because that’s the only way the lotion can stay on for more than a few minutes.

questions

“How asleep are you right now?” is a funny question that’s pretty common at our house.  “Are you awake?  How are you feeling?  Do you have an energy shot?  Are you going to be ok?  Can I get your help with something?  Can I talk to you right now?”

Hmm, this was supposed to be a post about nice things to do for someone who has ocd, but it’s something else now.  I’m thinking of other unpaid caregivers I know.

People are so under-supported, in our culture.  What a shit show.  Who is actually getting what they need?

If you are caring for someone disabled, probably you are not getting what you need.  Or if you’re caring for a baby, toddler, kids, elder.  Are you nourished, given breaks, supported emotionally, helped with making decisions?  Have enough money?  Have enough alone time?

How about sleep and delicious foods your body is asking for?  How about touch and smiles?

I guess paid caregivers also are not getting enough, but maybe paid caregivers have money to hire a house cleaner or get a massage?  The point of money is maybe you could do stuff like that.  But probably paid caregivers are also unpaid caregivers, huh.  Coming home to kids or whatever.  Different demands different places.

I remember exit surveys at the hospital.  I have a spouse, so they let me go home.  They were not comprehending what my spouse could or couldn’t do for me.  They made me sign a form and quickly left.

I’ve asked Ming not to break his hip, because I can’t lift him.  My dad broke his hip, long ago, and my mom was expected to do impossible things.  Like caregivers for disabled people often are.

helping others

I guess I would ask that you support the caregivers for disabled people you know.  Work is real.  The work I do is significant and valuable, despite a lack of paycheck.

If you work a paying job full time, probably you can rest at home afterward, or have weekends.  Caregivers for disabled people don’t get breaks a lot, sometimes.  I live here.