I used to worry about my husband when he was due back home and running late, that he might have fallen or been in a car accident—both of those things had happened.
“Do you worry about him?” my mother asked quietly during a dayslong visit to their home. She’d seen at close hand what it was like for him to walk with a cane and a crooked back, how easy it was to lose balance and fall.
“No,” I said. “I had to stop doing that.” I tried to explain how getting myself worked up in the absence of news—we were married before cell phones were in constant use—helped no one, especially not me. It just wore me out.
Sometimes it felt like I’d hardened myself a little, in a self-protective way. Instead of walking around unable to keep my mind on anything else, flinching at the blare of a siren and inwardly muttering prayers, I concentrated on assuming everything was fine. I was still alert for sounds of arrival but not in a near-panic.
When Theo was young, I worried about him having a seizure. When we were out, I kept a close eye on him. My sister Monica would say, “He’s fine. Stop it,” as she drove us somewhere and I kept turning around to check on Theo in his car seat. I thought, “She doesn’t understand what it’s like.”
Bad things can and sometimes will happen, and it’s natural to worry about someone you love. Men who walk with canes will sometimes slip and fall. Children who have seizures may have them again. It’s hard to live on high alert; it’s hard to be watchful but not overly anxious.
Suppertime
Our mealtimes have changed over the years. When we were a family of three, we ate meals together. Around the time of the divorce, when Theo and I had moved out temporarily, we got into the habit of eating supper while watching TV together, the good or cheesy old series on MeTV. More recently, after TV became a power struggle over the remotes and when to stop watching, we’ve mostly been eating separately. And now, since our kitchen needs work, there is no table surface available. So, timeliness in “coming to the table” isn’t an issue.
Theo tends toward being underweight, so this is a constant concern. He doesn’t like to answer questions like “What would you like for dinner?” His answers to questions are private, he says, or I’m supposed to already know the answer, despite my repetition of “I’m not a mind reader.”
When I fix a meal for him, I let him know that it’s on the stove or in the warmer. He doesn’t like interrupting a computer game to eat. I listen for the sound of him walking to the kitchen to get the plate or going to the current location of the silverware to help himself. If I discover that he still hasn’t collected his plate after awhile, I tell him I’m putting it in the fridge.
Anyone partaking of a meal cooked by someone else, I feel, should come to the table promptly, comment on the food positively or at least constructively, and in general show gratitude. I am kind of a slow, clean-as-I-go cook. When I’ve spent time on fixing a meal, it’s not nice to find good food sitting out past its best time to be eaten, turning slowly colder and drier. Sometimes when I make something new to him, Theo just leaves it there; he won’t even put it away. It’s upsetting to see food wasted.
I worry over how much Theo eats + over how much time goes by before he eats + irritation building to a cook’s rage + frustration mounting to a sense of helplessness. Those are natural emotions, but in this case they can become an example of caring too much.
If I start to feel upset, I try to note the anger without fanning it higher, to say to myself calmly that Theo is missing something good.
I look at the facts:
He needs to eat.
He’s not cooking himself.
I fix something.
He eats it—or doesn’t.
I also set a limit on how much I’ll do. If I cook a meal that gets rejected, I don’t cook another one. It’s a one-time deal. We always have food around that he can help himself to, as well as high-protein chocolate drinks. (Theo knows how to use the microwave, but lately he’s eating soup cold from the can or hot dogs right out of the package—my blood pressure is rising as I type: Breathe.)
At the same time, I’m still his mother and responsible for him and his health. I stay vigilant to how he eats and what he eats, his weight, perceived or actual. Theo refuses to weigh himself because he doesn’t want me to monitor his weight.
Words, Words, Words
Another example of caring too much can happen when nearly all of the caregiver’s actions on behalf of the one with special needs are rejected or met with hostility.
These days, Theo is uncooperative, unhelpful and can be downright nasty to me. Public school is behind him, but he’s refusing—and has done for a long while—to even talk about finding “staff” who could take him out for appointments and activities. Theo doesn’t want to talk about work training or what he might be interested in doing or in finding a place to live with support. He’s simply opting out, saying he doesn’t want to be a part of society.
Since I’m a participating member of society—buying things with money, voting, believing in God—I’m part of that social system he rejects. “You know nothing of the world,” he says dramatically.1
After pushing back on something I say, like a reminder of how much time is left before we need to leave the house, Theo may tack on a string of things like “You’re dumb, you’re stupid, no one likes you.” This might escalate to “You’re fake, you don’t exist, you should never have been born.” (When he calls me something milder like “nerd,” I know he’s cooling down.)
Theo also says, “I don’t want your love.” I respond either with silence if it comes as part of an angry rant or by calmly saying that I love him, sometimes adding “and I always will.”
I’m sure that other mothers who live with adult children with special needs are in similar situations. Once in a doctor’s waiting room, a young man kept saying to his middle-aged mother, “You don’t love me. You don’t care about me.” She answered in a rote way as if she’d said it a thousand times that yes, she did love him, she loved him very much.
Another reason to figure out how to not care too much: A regular barrage of criticism, insults, and verbal abuse can cause a kind of brainwashing, an internalizing of the negative. It’s not good for you!—for women particularly, since we’ve been conditioned to keep giving and giving, especially for our own children, and self-sacrifice as necessary—but we shouldn’t give up our souls!
How Not to Care Too Much
How to protect yourself, then? How to not care too much? First, and I’m going to use a double negative here, this wording is tricky:
Not Caring Too Much ≠
Not caring too much is not equal to:
Not caring at all or being callous
Not loving
Hardening the heart
Christians and Bible readers will recognize the expression “to harden the heart” (Psalm 95:8, Hebrews 3:19). “Harden not your hearts” appears in the liturgy of the Mass, only in our area it’s usually read aloud as “Hodden not your hots,” which makes me laugh (being able to laugh is another good way not to harden your heart). Either way, it’s a memorable expression, and a reminder that in protecting our mental health, we do not want to become hardened. We want to stay loving and open but with a bit of detachment from the anger and abuse so that we don’t identify it with ourselves.
It’s like when you undress for bed at the end of the day. Where your body was constricted by clothing, you might have lines impressed on your skin, from bra straps or a tight waistline or indents lining your ankles from pleated socks. You might rub at the marks or apply some lotion, to let the skin rest and repair during the night.
The spirit, too, feels dented from verbal battering, which makes both body and spirit feel injured and exhausted. The more of this experience, the more it can affect our mental health and physical health, too. It’s helpful to do a reality check: “I’m doing what I can, and that’s all I can do. I’ll pay attention to [my adult child, in this case]. I will take care of myself. I will ask for help if I need to. I’ll cry if I need to (in private).”
Fear of the Unknown?
I’ve thought a lot about why Theo is taking this anti-society stand now. As Theo approached the age of 18, he talked about preparing to leave and take up a new life in a fantasy setting. He was so convincing about it that his music therapist asked me if I thought he was really going to leave. I was pretty sure that he was using this fantasy for his own reasons but wasn’t really believing that he could do it. Well, his eighteenth birthday passed by, and we didn’t hear any more about it.
I’m speculating that Theo finds it hard to imagine life as an adult and as a participant in society, so for the time being he’s putting up this ideological barrier against the unknown. For him, it’s a way of taking some control over his life.
When Theo says, “I don’t love you,” it doesn’t bother me because I don’t believe it, though I’m sure he may feel that way in the moment.
While thinking about this, suddenly I was 12 years old going on 13 and back in the basement “den” of my childhood house, facing my angry father. The oldest of four girls, I was soon to enter junior high in the seventh grade. Forms had been sent listing “activities” to sign up for, with a lot of encouragement to “participate.” I had refused to sign up for anything (to my mother, who had told my father). So we were having this private talk in the basement.
My dad said I had to choose activities to participate in. I said I didn’t want to. I was as angry as he was. My dad looked baffled and furious. After some discussion, he asked, “Do you love me?” with a pained expression I hadn’t seen before.
“Yes!” I glared back at him while feeling the opposite.
I don’t remember the rest of the conversation except that he tried to convince me about why I should join in—did he mention it was supposed to be fun? My dad was a serious, intense kind of guy, so he wasn’t convincing when talking about fun. He said I had to promise to sign up for something. Then we had this Yoda-like exchange.
“Promise!” he said.
“I’ll try,” I said, and in spite of several back-and-forths2 I would not budge from this conditional acceptance.
After this flashback, it occurred to me that at that transition point I was resisting the change from a more carefree world to the highly structured one of junior high, where you changed class with every bell and had academic “requirements” to meet. It wouldn’t be like our afternoons and long summer evenings of neighborhood kids all playing outside, making up our own games, bicycling, and so on. And I think I was a little afraid of the future, as Theo might be now.
Finding a Balance: What Theo Said
A couple of days after I’d fixed on the title and subject of this essay, Theo said to me, “You care too much.”
“Well, that’s interesting. Synchronicity,” I thought.
A couple of days after that, he said: “You care too often. You care too much. I know how to balance caring and not caring. You don’t.” (Of course, I immediately wrote that down.) Where does Theo get these ideas from, I wonder? The last time I remember him mentioning balance was when he used the word unbalancing about a year ago.3
Anyway, I think Theo is correct. I need to find a balance between caring and caring too much. Here are some conclusions I came to:
Focus on what is
Do what you can, stay vigilant for change, let go of the rest
Take care of yourself, mentally and physically
Ask for help if needed
When you’re a new mother, especially of an infant who’s had medical problems, I would say that caring too much is not an issue. I’m not sure it’s even an option. But even if you have a new baby with apparently excellent health and a normal life ahead, you’re wired to be on high alert. Next time, we’ll return to Theo’s infancy.
Next: Nightwalking and the Wisdom of Nurses
Note: I used the terms mental health, spirit, and soul not exactly interchangeably here but as the spirit moved me.
Like Thorin Oakenshield speaking to his nephew Kili in the movie The Hobbit
From memory: In the Star Wars movie The Empire Strikes Back, Yoda says fiercely to Jedi-in-training Luke Skywalker, “Try? There is no try. Do—or do not.”
See Unbalancing Act, Feb. 20, 2023.