Tired: Caregiving, Grieving, and Pitfalls of Parenting

Have you ever seen One Flew Over the Cuckoo's Nest? Bancini is tired, and when he does talk, it's to tell everyone, over and over, that he's tired. Those images of Bancini rising up and telling everyone his truth have been in my mind a lot lately, and not because I just finished teaching the novel again in the first summer session.

I'm tired. Not just bodily tired, either. Tired in spirit, in psyche. Tired. That sums up my emotional reality right now. 

I'm tired.

And that makes me feel guilty. And heartbroken.

Because I'm tired and it's not fair to the people who need me to not be tired. I'm sad. And that makes me feel more tired and more guilty and maybe the heartbreak is the real reason I'm tired, not the other way around.

This summer we've made significant changes, struggled with decisions, worried about making sure everyone gets what they need, but those changes and decisions mean I've spent much time anguishing and then feeling the grief and its tandem guilt weigh me down.

It's not fair, on so many levels, and the fact that it appears to be my problem only, not my children's, makes it all the worse. I may be in the middle of a pity party, except I don't feel sorry for myself. Well, I hope that's not what it is. I won't let it be, if that's what's going on. I would personally kick my own ass, if I weren't so tired.

See, here's the thing. There's no book on how to parent an adult child who needs continued care. There's no book on how grief will settle into one's chest and create a fist sized hole of ache that takes one's breath away when it's least expected. Not one I've found, at least, that tells how to navigate this and get out on the other side.

One of the changes made this summer was reducing Bobby's volunteer load to one day a week and having him home the rest of the time with his sisters. And honestly, that's worked out beautifully in many ways. It's stopped the weight gain he was experiencing with the opportunity to eat constantly, and it's allowed for about twenty pounds of weight loss for him--that's great, and positive, and when the grief isn't twisting my heart and shredding it, I feel happy about that, that we're getting that issue under control before diabetes can settle in and create challenges I'm terrified we can't overcome.

He loves being home with his sisters. They get along so well, have the same interests and spend hours with each other, happily invested in those interests. Also great when grief isn't clouding my vision.

They baked yesterday, and they were all so proud that they'd worked together. It was lovely. Of course, when grief isn't making my stomach feel like there is a ton of bricks in it.

The grief comes when it isn't fair. I have three happy, healthy children who are delighted with the changes we've made, the lives they are building and their deepening relationships with each other, the increasing interdependence that in my heart, when grief leaves me the fuck alone, makes me certain they WILL be okay because they really will have each other, and together, they can do everything, anything.

So if everything objectively and without the prism of grief is going so well, if they are so happy, making progress, enjoying themselves immensely, why do I feel like Bancini: bone-crunching weariness that leaves me wanting to weep and wail?

It feels like a betrayal of all they are accomplishing and that I'm indulging in a pity party. It's not all grief, perhaps not--the lingering depression that muddies my perceptions doesn't help. My frustration with health issues and the meds I'm on to deal with them has certainly been a contributing factor to the Bancini Effect, as I've decided to call it.

Here, though, even though guilt piles on, is the truth, the crux: I expect the heartache when I do guardianship papers. I expect a twinge of it when I do the SSI paperwork each year. I'm prepared for those. I know they're coming, and I have hope that the grief I feel on those occasions will lessen, float away. Leave.

I wasn't prepared for this summer, when Lily took over some of my responsibility for helping Bobby through the day. I wasn't prepared for her being able to be his alert system, reminding him of the things he needs to do. I was less prepared for how fine he is with her taking over some of that responsibility for me. That he was happy she does it. I know, it's actually a great thing--interdependence, a joyful, willing connection between them that is mutually gratifying for both of them--he helps her, she helps him--it's all good.

It isn't fair that they can be so good with that while grief twists me up and wrings me dry and leaves me devastated. If they're okay, then I should be too. I've done my job--I've taught them that we all have differences, that we all struggle, and that when we work together, help each other, those struggles are lessened, and it's all good. It's okay.

I taught them that, but the mother in me that sees my beautiful young man with a heart so pure and sweet and giving and then grieves for those differences between him and "normal" young people his age (at his age I was married and mother to his two-year-old self) obviously isn't walking the talk.

So I bury the grief and become Bancini, tired, and that's bullshit, too. It's okay to be sad that things are different while still celebrating the wonderful in those differences. To do anything else means making the problem worse.

It's not my children's problem. It's mine. I grieve for what I wish for them and when I deny that sorrow I let it grow and eat at me and that could make it their problem, too.

They are beautiful and happy and making their own lives, lives that are different from the norm, but that's okay. Just like it's okay for me to let sorrow out of its lock box and talk to it, point out to it what we do have and how wondrous it is, even if it's harder than I wish for them.

The grief still lingers, an ache in my chest, and maybe accepting its constant companionship is simply part of hitting middle age and living a full life where joy and sorrow walk hand-in-hand together.

Not acknowledging that we ache when our children struggle through hardships is one of the pitfalls of parenting--it closes our eyes to the good, the sublime, the wonderful. It denies that reality that life is sorrow and joy, frustration and satisfaction, exhaustion and vitality, and all the other contraries.

It's my job to get a handle on this reality and model it so that my three will be equipped to face life, ready for its duality. I have a feeling, though, that they may already be better equipped: they truly have each other.

And maybe that, making myself check my inventory, will banish the grief for awhile and let me refresh my spirit.

After all, witnessing these children's beautiful spirits is the greatest blessing in my life:



E Fischer said...

Isn't the grief really a masquerade for the fear you may not be doing things right? A nagging consideration part and parcel of having a larger than normal responsibility where your children are concerned? Add to this overexertion, physical fatigue.
That sense of responsibility that your actions could have a more severe negative effect is quite overwhelming.
Unfortunate indeed since the gains accomplished are quite marvelous.

farmwifetwo said...

I've been tired for nearly 14yrs and counting... I'm not convinced it ever truly ends.

Supports??? Laughs, hysterically....

melbo said...

I think I've said it before that I'm unsure how much/if/when/what is appropriate when it comes to "coping". Is that what life is about? Coping? If we are consumed with coping, how do we expend energy on anything else? It's this I suspect that lies at the root of my own depression and that of many others.

I wish I knew what the answer was. I can only extend my hand to you and offer support though. I admire all you have done and are doing ... your thoughts, your family, your writings are a credit to you.

Sending much love and hope that the cloud begins to lift for you soon.xxx

Sharon Morris said...

Maybe when we deny our truth, particularly to ourselves, it needs to yell a bit louder to be heard? Ive worked out, at least for me, this is a cyclic thing, and actually is functional for the most part.
Wishing you well.

Attila the Mom said...

Oh, you said this all so beautifully. I hear you. I really hear you. (big hugs)

K Wombles said...

Eric, I think that fear is mixed in there heavily.

fw2, completely understand hysterical laughter.

melbo, Sharon, Attila, thanks. I appreciate the support. :)

Stephanie said...

Give yourself permission to grieve. In my experience, guilt is a draining, tiring, leeching force that eats you alive.

If guilt gives your conscience a momentary boost that empowers you to repent, apologize, and set things as right as you can make them, then guilt serves a purpose.

When guilt lingers over things you cannot control--including your feelings about things you cannot control--then it serves no purpose.

You are a great mom to some great kids. But you have made mistakes. You will make some more. You have had feelings that were inconsistent with your beliefs. You will have more feelings that are inconsistent with your beliefs. Give yourself permission to be imperfect. Give yourself permission to grieve. Give yourself permission to want something different for your children. And tell the guilt to go back to hell where it belongs.

K Wombles said...

Thanks, Stephanie. I appreciate your words and support. I will. :)