You know how it is, when you’re just too tired to keep going, and you feel you’ve given everything you’ve got to give? You need a rest, and at least for the moment you’re fed up with the demands of your chronically-severely-ill and autistic adult child when you, yourself, are chronically ill.
Possibly, probably, you don’t know how that is. It’s not usual. That’s why I have this blog. I’m trying to explain an unusual way of life. There are so many unusual aspects to this life. There’s how nearly-impossible it is to get her appropriate medical care. There’s the social isolation. There’s the constant shopping and returning items and shopping again. There’s acting as an interpreter, and as a buffer, and as a liaison, between her and the rest of the world. There’s scraping for resources. And there’s rare moments of sweetness. Just at the moment, the sweetness is feeling all too rare.
With anyone else, this would be an abusive relationship: the beloved who always makes demands, who never shows appreciation, who finds fault with everything you do, and who never does anything for you, is not a person you’d stay with in a romantic relationship. When grown offspring behave this way, normally they’re no longer welcome to live with their parents, or if they do then certainly they’ve got to change and follow some ground rules for civil behavior. Extended family members who act like this, become at best distant and barely-cordial contacts. In a friendship, it wouldn’t be tolerated for long. Whoever treats you this way, your caring eventually burns out and turns to resentment, and you make the changes or the break you need, for your own emotional survival.
But when the beloved in question is your grown daughter, who can’t help how she reacts to the world, and who has not another soul to care for her, there’s no room for burnout. There’s no possibility of a break, or a change. It’s just the way it is, and I roll with it, from day to day.
One way to roll with it is to blow off steam. There are not a lot of people I can talk to who understand how it is. I talk to my therapist and after several years working together, she mostly understands, but there are still times I have to explain. We talk around and around some issue, and pick it apart, and grope for analogies though there aren’t a lot of situations that this is like. It’s its own thing, and we’re living it. Anyway, I can blow off some steam talking with my therapist, but often I wish the rest of the world could relate.
So much do I wish that, that here I am spending several paragraphs of preamble and background and, I don’t know, sort of cushioning it all, when I just wanted to say that it’s disheartening at the moment. Earlier this week I thought I had made her my best ever batch of cornbread, springy and moist, and she described it as too squishy and damp. She wanted a mocha this evening and I could barely stand and walk, I was so tired, but once again she’s sleep-reversed and her migraine was intense and she needed the caffeine, so up I got and made it. I thought it was the best mocha I’d ever made. She said it was too sweet.
If she could cook for herself–or shop for herself, clean house for herself, place phone calls and fill out forms and deal with bureaucrats for herself–she might be content with a little less perfection. If she could do those things, she might appreciate my efforts more. If she could see how much pain I am in myself, and what the efforts cost me, she might– what’s the point of those ifs? She can’t. And I’m just sick enough myself, and we’re just poor enough, that there’s not much I can do about it but make do.
Today, she slept while I did our household business and chores, and I guess I ought to have rested more, but the weather was lovely and I did a little gardening, figuring that was “my” time. Doing something that gives me pleasure is necessary to help keep me going, right? I’m so grateful to have a garden. I’m getting it ready for bees, and I saw a honeybee on a dandelion today. Delight! But by the time daughter woke at last, late in the day, needing breakfast, my caregiving day was just beginning but I was already exhausted and aching.
I pushed myself and made her meals and beverages. When a cooking smell bothered her I opened windows. When neighborhood noises were too much for her I closed the windows again. When that wasn’t enough I went out to investigate and see if I could find out what the noise was and whether it could stop soon. A whole string of things were hurting her, and a whole string of solutions were inadequate, and it would not have done a bit of good for me to snap.
All I can do, is do my best, and let the criticisms roll off, and be delighted when, every now and then, my efforts do delight her. And yeah, I can blow off a little steam. It helps. Thanks for listening.
She’s really trying to relate well, and to transcend the pain, and to not be bothered by the irritants. Actually the worst thing, that hurts my heart the most, is when she does realize how hard she’s being on me, and apologizes. There are days when it seems everything she says starts or ends with, “I’m sorry.” I tell her, “Don’t be sorry. You’re doing your best.” I let her know, the best I can, that I do see her efforts. She can rarely let me know she sees mine, but every now and then, she does. When she can, she goes out of her way to thank me. She always was so sweet, before she got sick, and that person is still there, struggling to express that sweetness through a barrier of pain.
I’ll rest, and I’ll hope to gather a little pollen from somewhere, to make a little more honey in my heart. Gotta find the sweetness that sustains me and if I don’t have it and can’t find it I’ve got to make it myself. And I’ll make the mocha less sweet, next time.
p.s., If you can be a honey, and make life sweeter for Hazel, here’s the link for donation pollination: Pathways of Healing (and a pocketful of hope) for Hazel.