Inching Forward

I'm sure Mom is still sparkling somewhere.

This is a hard one to write. Mom snuck away during the night last Saturday, sometime in the two-hour window between 11 p.m. when I fell asleep reading in the bed next to her hospital bed, and 1 a.m. when I woke because I couldn’t hear her breathing.

When I checked on her, I believe she had only just died—her hands were cool, but her head and chest were hot (she’d been running a fever earlier). My immediate reaction was upheaval: shock, panic, fear, profound sadness. I was temporarily frozen. And I think I felt cheated, that after all these months of privately dreading the moment of her death, she left while I was sleeping, and I missed it.

I sat in the chair beside her bed and slowly calmed down. I kissed her, chatted with her, held her hand, straightened out her covers, brushed her hair, sent out my requests to the Universe for her peaceful passage to whatever adventure is next for her, texted my brothers (it was the middle of the night, my youngest brother was halfway here and had stopped for the night). Then I decided, greedily, to go back to sleep and keep her with me till morning.

Early Saturday morning, I made the necessary calls. Hospice came to do their “assessment” (verify and declare her dead), and the funeral home came to collect her—I admit I had to leave the room for the “draping” (it’s a body bag, Mr. Funeral Home Guy, you can say it). Shortly after, one of my brothers arrived. 

I spent some time dismantling our “care center”—stripping the hospital bed, putting away all the hospital-ish accoutrement, unhooking the oxygen generator (I had to do this last; I wasn’t sure I could do without the constant reassuring drone after four months). There’s nothing like furious hyper-responsibility and a list of chores to stem the grief floodgate, but it only lasts so long. Eventually, the steam ran out. We had to take to our La-Z-Peoples and sleep. 

On Sunday afternoon, my other two brothers arrived. We all worked on an obituary, sorted through paperwork, talked about Mom's final wishes. We went out to dinner and had a great time laughing and remembering, then came home to watch a sci-fi/western marathon.

Yesterday (Monday) was a little harder. My brothers all needed to hit the road early, and the medical equipment people came to take apart the hospital bed and haul it away, along with the O2 generator and tanks, and the commode. Suddenly, it was just Ray and me. Mom’s room – the biggest in the house – was a wide open, very empty space.

I realized as I looked around her room that I was already formulating to-do lists: sort the clothes for a giveaway, go through the jewelry for the kids and grandkids, collect her collection of stars in one place for family. As soon as I realized I was task-ifying Mom’s death and disappearance, I stopped. I was exhausted and raw. I gave myself permission to shut her door and spend the day resting, sleeping, watching silly TV.

I will probably need more of these rest days—we’re never really done grieving, we just slowly adapt, learn to live with vacancies. I don’t quite know what to do with myself yet. Time seems expanded somehow, round and fuzzy almost, after the intense, demand-heavy, scheduled, linear life of the past months. Mom had been in Hospice care since January 1 of this year, but the year before that was a time of her declining health, many, many medical appointments, and 4 hospitalizations. And before that was breast cancer radiation, knee replacement, eye surgery, and chemo for CLL cancer. It's been a long, hard road.

I’m not afraid of death. I’m sad to see my mother go, and I have all the typical feelings: I should have said this or done that; I should never have said this or done that; we didn't have enough time; I'm a motherless child. I have those other feelings too, for which we’re conditioned to feel guilty: relief, release to finally be a “grown up,” freedom. I’m secretly delighted that I can take a shower whenever I want, go to the store, sleep in. I don’t beat myself up for these feelings, knowing that grief always calls up the full range of human emotions.

I know, too, that death is the natural conclusion to our time here. And although I don’t know what, if anything, comes next, I believe death isn’t the end. We are, after all, powered by electrical energy, and energy doesn’t die—it just changes form.

Ray and I are inching forward now. I’m looking forward to a reading later this week with a dear friend, where I will see former colleagues. Afterward, I will celebrate poetry, friends, and Mom at our Little Town bar with a glass of wine and the live music she so loved. And if her energy is sticking around for a bit longer, as the Tibetans believed, I know she will be there with us, dancing.

Here's a little poem for us all, for the days ahead...

Easter's Thin Veil

It’s Easter, Eostre, spring…symbolic point between winter/spring, or death/new life. This seems a fitting time for things to change, and things are definitely changing here at the Row. 

Eggs for the Giant

Mom has turned a corner and seems to be standing (metaphorically) at the veil (also metaphorically). She fell a couple weeks ago. It wasn’t a hard boom-fall; it was more of a no-strength-left crumple to the floor. After that, walking just seemed too hard, and she hasn’t been out of bed since. She sleeps almost all the time now, except when I raise the head of the bed to have her drink something or eat a few bites of pudding (with her meds crushed up in it).

Sharing a Cracker

I’ve had two main reactions to these recent changes: (1) anxiety and (2) panic.

The anxiety came because I felt woefully unprepared for the practical care of someone who can’t get out of bed, respond, or feed herself. Thankfully, our amazing hospice folks were here to teach me the mechanics of bed-bound hygiene. But I have so many more questions: How hard should I try to make Mom drink and eat? How long do I keep sneaking in meds for other conditions, while the cancer is killing her? Is the cancer killing her, or the conditions for which I’m sneaking in meds? How much can she hear? see? feel? Should I be near her always, talking, reassuring, or should I let her rest and have some peace?

The panic came because sheit got real. My mother is dying. She’s not slowly moving toward the veil now; she’s moving back and forth through it, sometimes here with us, sometimes somewhere else. I tried hard not to let my crying-blinking-deer-in-headlights stare show when the hospice nurse said two or three times, euphemistically, “she’s had a change of condition” and said they’d start coming every day.

Daughter's Three-Cherry, Strawberry, Blueberry Pie!

Masha's Blinchikis (Russian Crepes)

For now, I’m keeping the anxiety and panic to a minimum by doing things—my hyper-responsible way of coping. I’ve been sending near-daily updates to family. I finally did the impossible and called a funeral home. I’ve been making a list of people I’ll need to notify. I cleaned out closets. I did medicine inventory. I sorted shoes. I've started getting all my daily chores done before dinner, as if that little bit of tidy organization has the power to keep the veil from closing behind my mother.

GOOD Friday Service at Our Lady of Cabernet

Playing Pat the Baby

Drawing Lessons, Egg Art

Another anxiety reducer is family: My three brothers have been coming and going. We live in four states, but at one point in the last few days, Mom had all four children around her again. My oldest brother and I had an evening out at Our Lady of Cabernet, where my brother sat in with Ray and the band. I got a big, beautiful dose of the best medicine—singing a few songs with friends—and saw other people I’d been missing. Over the course of this last week, Mom smiled occasionally, tried hard to keep her eyes open for a minute or two at a time, and once or twice, moved her hands or feet to Leon Redbone on her CD player. We had a houseful for Easter dinner, so she had a parade of beloveds moving in and out of her room all day.

When my youngest brother and his partner leave this week, Ray and I will settle back into the quiet vigil. We'll take the puppy out, watch movies, Ray will run errands, we'll ready the garden and putter around the house. And every now and then I'll sense, fear, hope for, deny, or  welcome, the billowing of that thin veil.

Babies...Travelers in Both Worlds

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.