It's a Pity [Party]

This is my self-pity blog post, so stop here if you’d rather not hear me wallowing. I try not to let myself go here often, but it’s an inevitable detour for caregivers. We aren’t taught, especially in the U.S. “bootstraps” nation, how to care for people who are dying, so we definitely aren’t taught how to care for caregivers, even ourselves. I recently joined an online caregivers support group, thinking, at last! People who get it! I discovered quickly that it was a litany of horror stories about physical, mental, and emotional exhaustion, resentment, and giving up. I feel their pain, I want to help each of them, but I CAN'T. TAKE. CARE. OF. ONE. MORE. THING. I quit the group.

Mom’s been having a rough few days, which means I’ve been having a rough few days. She’s more agitated and contrary. She falls asleep at the kitchen table but either refuses to go to bed, or when she asks to go to bed, she stays awake and restless—lifts her head off the pillow every few minutes, pulls at her bedclothes, or (more rarely now) sits up on the edge of her bed. She’s either verbally unresponsive, although she’ll often look at me when I talk to her), or she talks but doesn’t make sense (usually at 4 a.m.).

She’s been mostly sleeping through the night, though I wake up two or three times, as if my body clock is still set for the days when she was getting up every two hours. And some nights, I still have to get up once or twice to lift her legs back onto the bed and re-do her covers, after she’s tried to get up and has thrown her bedding on the floor.

I’ve been sleeping in Mom’s room since last December. Sometimes now I lie in bed and just listen to her breathe. Sometimes, when I can’t hear it, I lie awake waiting, hoping I’ll hear it any minute, or (if I’m being brutally honest) hoping I won’t. That may sound cruel, but it isn’t—I sometimes wish my mother would float through the veil in her sleep and not have to wake to another day of her traitorous, deteriorating body, and to the awareness (I’m sure she’s aware on some level) that her mind is leaving her too.

Also, not to put too selfish a point on it, I’ve come to feel that caregiving for someone who’s terminally ill is TRAUMA for you both. There’s no getting better on the horizon. Even your best caretaker efforts can’t fix dying. There’s only the question of how you can contribute to the best possible end, which will still be the worst possible end—losing someone you love. Even faith in an afterlife—her faith or mine, whatever shape that takes—can’t stop grief. And now I’ve read that anticipatory grief is a thing. Holy sheit.

Caretakers don’t often talk about (outside online support groups, I’ve learned) the isolation and self-pity that are natural parts of caregiving. I don’t go out. I rarely see friends. My husband sleeps in a different wing of the manor. I’ve cancelled all of my own health/wellness care. I recently got approved for state-assisted respite care, so I could leave the house. But because of nursing/staff shortages, I get only three hours a week. THREE HOURS out of 168. These are not cumulative, either; they can’t be rolled over for a 6-hour week now and then. 

My life is on hold indefinitely. But I have to cheerfully listen to what other people are doing, accomplishing, enjoying, where they're going. Then I stew in my guilt over not being more cheerful or happier for others. I have no schedule because Mom has no schedule—she might sleep two hours, she might sleep 45 minutes. She might be up from 1-4 hours. So there’s no time during the day that I can count on for “me” time. I’ve been working on this post for three days, writing at the kitchen table a bit at a time, between Mom’s awake times. And I had to stop working on it several times, because I started crying and couldn’t see.

Sidenote: I’ve had MANY, MANY offers of help. People have brought food by the truckload so I don’t have to cook. They’ve sent cards and flowers. They’ve volunteered to come stay with Mom so I could have breaks. It’s hard to explain why I turn down these offers—she’s still aware enough at times to know someone else isn’t me, isn’t familiar; she can’t remember most people now. She’s still aware enough to be uncomfortable with other people getting her on a commode, changing her, washing her, cleaning up her bed. She gets scared when things vary from our routine.

Yesterday, I gave Mom a butterscotch malt and said, “You love ice cream, don’t you.” Mom said, “Wonder Wonder Wonder Bread,” and I knew without a doubt that what she meant was that ice cream is the best thing since Wonder Bread, something she and my grandma both used to say about anything they dearly loved. Then later in the day, a picture of my daughter and her children popped up in Mom’s iPad slideshow, which she looks at every time she’s up. Mom said, clear as a year ago, “God, those kids love her, don’t they?” and she smiled. I put a video of my brother's band, The Linoma Mashers, on her iPad, and she busted some swingin' moves in her chair.

These tender moments, even though they’re becoming more rare, can usually pull me out of my whirring, sulky, monkey mind. They remind me why I’m doing this. And I’m not writing this so y’all will tell me what a great job I’m doing or offer more help, although I love you all to pieces for this. I’m writing this because I get it. If you went through this yourself and it was before I knew, I get it now, and I love you for having been through it, and I wish you healing. If you’re going through it now and you need to wallow, I get that too, and I’ll listen. And when there aren’t enough of those tender moments, please know that it’s OKAY to have as many good, cathartic cries as you need.