This blog is supposed to be about me, not about her, but her stuff effects my stuff, all the time. This blog can’t be just about me without reference to her, because my life is all about her. I’m living around the edges of her needs. Each day of mine is only livable in response to her. Take her sleep, for example.

It’s hard to work a job where you never know when your next shift will be, until it begins, and you never know how long it will last, until it ends. You also never know what exact work you’ll be doing, during that next shift, until the work is handed to you. You just have to deal with what comes up, when it comes up.

My (unpaid but not thankless) job as a caregiver is like that. Since I never know when I’ll be paged or what she’ll need, and I can never take a vacation, I joke that I’m on call 25/8. The job is unpredictable because Hazel’s needs are unpredictable and vary from hour to hour; and because life is unpredictable and throws different things at us, and when it throws anything at her, I have to cope with it for her; and because her sleep is unpredictable.

A lot of people with ME have trouble with sleep.

A lot of people with PTSD have trouble with sleep.

A lot of autistic people have trouble with sleep.

A lot of people with Trigeminal Neuralgia and similar chronic intense pain have trouble with sleep.

Hazel is all those kinds of person and yes, has trouble with sleep.

Her longest stretch of no sleep, that I recall, was 44 hours. Her longest stretch of sleep, that I recall, was about 16 hours.

Every now and then I track her sleep, as a part of tracking her health. A recent 9-day stretch went like this:

33 hours awake.
15 hours asleep.
8 hours awake.
5 hours asleep.
28 hours awake.
8.5 hours asleep.
19 hours awake.
5 hours asleep.
23 hours awake.
7 hours asleep.
16 hours awake.
7.5 hours asleep.
15 hours awake.
8 hours asleep.

Her sleep is all over the place. At the end of that stretch, she was sleeping nights and awake days. Throughout the previous 7 days there were times she slept in the day, and nights she was awake all night.

It’s scary, to see how bad she is, at times like that. When she’s gone without sleep for 24 hours or more, I can see the pain in her drawn and haggard face. I can also observe the pain in her behavior. She’s in so much pain and so exhausted she can’t process incoming input like, for example, a question asked of her, and if she does at last understand what I’m asking, she can’t process her own thoughts to formulate a response, or if she does formulate a response, she may not be able to make the physical effort to speak.

Sleep-deprived, she’s at her most sensitive. Windows are shuttered and lights are off. The least sound in her vicinity makes her whimper in pain. The sound of a neighbor playing basketball, the ball gloinging loudly as it’s dribbled on the pavement outside of our house, has her groaning in misery. Her wordless howl when another neighbor revs a loud motorcycle or blasts a car stereo is almost unbearable for me to hear, and if the noise continues long, I would do almost anything to make it stop.

The sound of my daughter howling in pain is something I sense as much in my shoulders and in my gut, as with my ears. It’s an aggravating sound, like fingernails on a blackboard, that would make the most heartless stranger tense their shoulders, and wince. I’m not heartless, nor a stranger, so while I’m tensing my shoulders and wincing I’m also feeling the howl like a knife in my gut: my child is in horrible pain. What can I do?

To stop the noise and ease her pain, I have taken my life in my hands. I have gone outside in my pajamas at 3am to talk to semi drivers and ask them to stop idling their trucks. I have approached strangers and asked them if their motorcycle has to be so loud, and if they really have to work on it right there or could they move it elsewhere. In this road-raging world, conversations like that can get people killed. I’ve been called a crazy bitch and (because I was using a wheelchair) a stupid cripple, when I’ve approached people to ask as nicely as I could, whether they could be quieter, explaining that a very sick person was experiencing pain because of their noise. People don’t give a shit, mostly.

Of course I try to help get her sleep on track and keep it there. Unfortunately, drugs don’t do the trick. When we were both prescribed medications that were supposed to promote relaxation and sleep, both of us responded with an atypical, paradoxical reaction, getting tense and wired on the supposed sleepy meds. Evidently some people are atypical and that’s us.

She does all the “sleep hygiene” stuff, or as much as possible. Some is impossible. For instance, the experts say to use your bedroom only for sleeping. Someone who is mostly bedridden, as she is, can’t take that advice. She does, however, have one side of her bed for sitting up, and the other side for sleeping. She sleeps on the side farther from a window.

Melatonin didn’t help, in normal doses, but in extremely small doses—one drop of a melatonin liquid that recommends a whole dropperful as a normal dose–it seems to mayyyybe be helpful. The jury’s still out on that.

Sometimes, I can nap, if she’s been up in the night and needing me to cook and serve meals or stop noises or clean up spills or whatever. Sometimes I can’t nap. Sometimes I’m stumbling through a sleepless night or worn-out day, just doing my best to provide for both our basic needs, and those will be the days when helpers call in sick, when things break around the house, when landlords keep me on the phone for an hour at a time, when life throws things at me and demands that I handle them instantly.

Anyway, long story short, she doesn’t sleep in regular cycles, it’s been a lot of years and we’ve tried a lot of remedies, and the upshot is that all she can do is to do her best to sleep nights, and all I can do is what parents of infants do: I sleep when I can, and I’m on call day and night. And sometimes I tell people, who expect something of me, “sorry, I can’t deal with this right now.”

And I silently pray she will sleep. I might joke that I’m on call 25/8, but I’m human, and I let myself be human, and take care of myself by saying no to the world, so that I can say yes the next time my daughter needs me.

p.s.; your help keeps me going through the dark and sleepless nights. If you can help me help Hazel, here’s where to go to donate:

How Sweet It Is

Valentine’s Day is on its way and my sweetness level is low. I’m scraping the bottom of the jar.
And can’t my daughter please just be a honey?

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.