Saints and More Saints

I sometimes feel a little conflicted about writing these blog posts, or at least, about sharing them. I'm not fishing for affirmation or praise. I don’t want people to think I’m over here being all heroic and altruistic. Believe me, I’m not. 

Back when Mom was still conversational, she asked me a question to which I gave a knee-jerk answer. I had complained to her—yes, complained—that neither of us was getting enough sleep because she got up every two hours during the night. She asked me, “Are you doing all this because you love me, or because you think it’s your duty?” I answered, “Because you’re my mother, and I adore you.” Which is/was true. But I’ve had time to think about it, and my answer wasn’t the WHOLE truth.

I’m doing this for a few reasons, and none of them have to do with me being a saint. In fact, remember the horns I mentioned in the last post? Yeah. Mom, in her liminal state, can probably REALLY see mine now…;)

Reason 1: I DO love my mother. I want the best for her, or at least the best I can provide. My mom got short-changed in her life. She was smart, curious, interested, and ambitious as a young woman. Then she married my dad at 17 and started at 18 having babies every two years. That’s what she’d seen the women around her do, and what was expected of most young women of her era. Although my dad sometimes reminded her that she was uneducated (she had a high school diploma) and not really qualified to join in their college-going friends’ intellectual banterings, Mom earned at least some of Dad’s degree (she wrote and edited his papers). But she would never have the opportunity to get a degree of her own. So now at least, I want the choices to be hers, and she told me many times when she still could, that she wants to be home for this transition.

Reason 2: I DO feel a sense of duty. I have an unusually expressive caretaking gene. An inherited or evolutionary aberration. A visiting poet once called me “hyper-responsible” when I dragged him out of our Little Town watering hole because he was 10 minutes late for his reading. I wanted to punch him in the face when he said that, but I knew he was spot on.

Reason 3: I believe dying at home is the best possible death, unless you can sprout fairy wings and flutter off into an enchanted forest on the back of your singing pet unicorn, while eating Doritos (all of which I’ve requested for my own demise). And I know dying at home is only a good death IF home has been a happy place, and IF you have loved ones who will stay with you and look after you. Those are two SUPER BIG ifs, but we're lucky that Mom has both.

Reason 4: I’m processing. I have a LOT to process—Mom dying, Dad dying, my real and imagined parental issues, retirement, change, Covidfear, aging, what life looks like moving forward, why Emergen-C changed their formula, housebreaking a puppy, the neuroscience of consciousness and reality-creation, orchid repotting…the list goes on. Good grief; how do people who DON’T write make sense of their lives?!?

Reason 5 (and honestly, my main reason): My grandmother, who mothered me while my own mother worked days and many nights, died at home. Mom and her friend and roommate Hope took care of her. Grandma died in the room that had been her bedroom for 50 years, surrounded by her own smells and sounds, her pictures, her bed linens, her hideous wallpaper, her picture window looking out at our ancient cottonwood trees, the ghost children who came to visit in the end, and the ghost church ladies who talked too much. She was soothed now and then by trains rumbling past a block away. And on her last day with us, we were all there—a circle of family around her hospital bed, holding her hands, brushing her hair back, stroking her face and arms. I don’t know if this made leaving easier or harder for my grandmother, but it seemed peaceful to the rest of us. It meant the world to me to be holding her hand for her last heartbeat, for that moment of letting go. I promised myself then, that if I could, I would give the same gift to Mom that she had given her own mother.

Honest, I’m not noble, I’m just very, very lucky—that my retirement and Ray’s retirement coincided with Mom needing more constant care, that we have a safe home and the resources to stay in it, that we have support from Hospice, that I’m still physically able. And I’m really stubborn—no matter how exhausting, frustrating, sad this is at times, I persist, by gum, because it’s also joyful, rewarding, hilarious, and because I made a promise to myself 30-some years ago.

Also, I couldn’t do this without support. Ray first of all. I can take care of Mom because Ray takes care of me. He reminds me to eat. He feeds the canaries. He makes me smoothies every morning. He runs all the errands. He takes care of this naughty baby landshark (aka puppy) we brought home. Other amazing people have been leaving us gifts of food, sending cards and flowers, stopping for visits, volunteering their time & energy to give me breaks. My kids and their spouses have cleaned, cooked, stayed with Mom when I need to leave for a bit, picked up and paid for my medicine, provided my tech support, cheered me up with their hilarious good humor and their adorable children. My brothers and sisters-in-love have given me full nights’ sleep, manicures, spa days, dinners, yarn, tax prep service, Lay’s Stax, and really, anything I ask them for.

Baby landshark at rest.

The upshot of all this blabbering is that there ARE heroes and saints involved, and they’re the people in my beautiful bubble—my family and community—all of whom make it possible for me to be the awkward, goofy, sometimes bitchy, bumbling, pigheaded genie in this lamp, granting Mom’s last wish.

Perfect Mom Moments

My mother looks at me sometimes like I have horns and blood-tipped fangs—as if she’s part afraid, part confused, part disgusted. At other times, she looks at me, rolls her eyes, scowls, and shakes her head, as if no one could be more ridiculous and annoying than I am. At other times, she looks at me with pure overwhelming love.

My point is, dying isn’t something I can “figure out” or get a handle on—at least not in the way my obsessively, overly analytical brain would prefer. There’s not a chart or graph I can consult, no “Ten Sure Signs…” meme, no Ted Talk that outlines the basic, consistent steps and timeline of dying. The doctors can’t tell me what to expect beyond the universal physiology of death, and the Hospice nurses, for whom I have the greatest respect, don’t know much more that I do.

There’s only, right now THIS is what’s happening.

For example, one day Mom can’t walk. I have to half-carry her from her bed to the kitchen table, as I speak loudly into her good ear, “Take another step. Now take another one.…” I aim the kitchen chair at her from behind, even as she’s melting toward the floor. She’ll sit at the table across from me, and when I ask if she’d like something to drink, she might mumble something unintelligible, or not respond at all, or not acknowledge that I’ve spoken. If there’s a spoon, she may scoop up air with it and eat these pretend bites. She may wad up a napkin and try to use it like a spoon.

That night, she might sit up in bed every two hours, all night long. How she pulls herself up, I’ll never understand (because I’m too tired to stay up and watch). But something eventually wakes me up—faint tapping on the hospital bed rail, swinging her feet into the bed frame, pulling up the bedding—and I get up, lay her back down, cover her up, put her oxygen back on, and go back to bed. At some point I’ll say, “You have to go back to sleep; it’s only X:00 in the morning.” The other night she answered, “You’re a liar. I know how to read a clock.”

The next day (or after the next nap or three days later…), she’ll grab hold of her walker and practically spring out of bed with little help, truck out to the kitchen (with minimal help), and wait for me to push her chair up behind her. She’ll say, “Look at these beautiful babies!” when she sees her iPad photo slideshow, or “Could I have some orange juice?” while I stare at her in wonder.

The next day we might be back to nothing quite working, or she might be confused and angry, or she might be doing great, or we might be onto something entirely new. It’s like caring for an infant, who turns into my mother, who turns into a snarly teen, who turns into a ghost just on the edge of my vision. Each requires a different kind of care and a different level of emotional fortitude from me. And I’ve learned not to take anything personally.

There are momentary miracles, too, that fill me so full of love I think I'll burst. Like the other night, as I was helping Mom up from the kitchen table, I brushed against her hand with the walker handle. She gave me a look I can’t quite describe—an “Are you trying to kill me?!? look—and when I said, “I didn’t do it on purpose, I’m just clumsy,” she SMIRKED. That look had been a deliberate tease. Then, as she was lying down, and I lifted her legs to help her into bed, her leg slipped out of my hand and dropped to the bed. She looked up at the door and called out, “Frank?!? Help me, Frank!!” And here’s the thing: She looked at me and smirked again. We don’t know any Frank, and she was totally goofing around!

Or this morning, when I told Mom to hug me for a minute so I could get the bathroom door closed, she hugged me and started moving side to side. I realized she was dancing! She laughed, and I laughed. It was a perfect Mom moment.

Maybe Mom’s daily abilities and demeanor are a function of brain chemistry. Maybe they depend on the strength of her resistance that day. Maybe they’re determined by how much protein she ate the day before. Maybe they’re the result of cancer cheesecloth-ing her brain. These maybes used to drive me insane, with my compulsive need to study, research, and explain…well…everything. But I’m (slowly) learning the WHYs and HOWs don’t really matter. What matters is what’s happening right now.

This morning, as I was guiding Mom’s walker forward, she looked me right in the eyes and asked, “How did you learn to do this?” I said, “We’re learning together.” And she smiled. Perfect. Mom. Moment.

The (real) Parent Trap?

Dad and Mary

I haven’t talked much about my dad, or at all really, but he’s also part of my current situation.

My mom and dad divorced when I was 12. They’d been married 15 years and had 4 kids. Their divorce was not amicable. I won’t go into the gory details of the split, the ensuing years of animosities and slights, or all the stories my mother told me over the years about what a no-good louse he was.

What I’ll say is that my dad, who is 91 today, lives in my hometown Big City with his 3rd wife of 32 years. He considers himself a born again evangelical Christian. He’s a tRump supporter and hard-core Republican. He’s an ex-vice cop and gun advocate. He’s pretty much everything I’m not. He’s also dying.

Dad has mostly untreated prostate cancer that has spread to his bones, spine, and probably other places (he’s gone off treatment against medical advice more than once because of its side effects). He still gets around his apartment with a walker, and he’s still pretty clear-minded except when he self-medicates for the bone pain. This is a sad time for my dad; he’s brimming with remorse for past deeds, and he struggles with his religion’s promise of (undeserved) forgiveness.

To complicate things, my dad and I weren’t on speaking terms for decades. He was a lousy dad, and I was a hard-headed kid. But in recent years (since just before his cancer), I decided I’d wasted enough time and energy lugging around my load of grudges and resentments, hurts, disappointments, and longing. He was an old man, and he wasn’t going to change. So I opened up the lines of communication. I made him a poster with pictures of his kids, grandkids, and great-grandkids, labeled with their names, many of whom he’d never met. Then Mom decided she liked him okay again.

Before Mom was housebound, she and I went to the Big City to visit Dad as often as we could, and she and Dad talked on the phone several times a week—with his wife on speaker. The visits and calls were slightly flirty and full of I love you’s (kinda weird, for me at least). Now, Dad calls a couple times a week to ask how I’m doing and to check on Mom, again with his wife on speaker. My oldest brother, who lives in the Big City, runs point with Dad. I guess we’re all buddies now.

Mom, Dad, and (slightly confused) Me

This new family luvfest doesn’t mean I’m so magnanimous, so true to my Buddha nature, that I’ve been able to let my parental issues go entirely. But my parents are dying, at the same time. I need to shelve my parent/child conundrums in order to be present and compassionate and not waste any of this time in their lives, nor the lessons it offers me, all of which I consider holy. And even if my parents (and possibly me) don’t realize it, maybe this is their last gift to me—a lighter load of old baggage to carry forward. Here's my mom and dad, singing a duet...

"Go gentle" my foot.

My mother and Dylan Thomas—they’re buds. And she’s taking Thomas’ advice; she WILL NOT be going gentle into that good night, thank you very much. Old age is definitely burning and raving in Mom’s world.

Mom has a combination of advanced CLL (a blood cancer), atrial fibrillation, and congestive heart failure, and we’re moving in on three months of home hospice care. We’re at the point now where communication is very hard. She can/will—sometimes—answer yes or no, and she will sometimes surprise me with sudden, spontaneous utterances, some that make sense (“Your puppy…sheesh.”) and some that only she understands (“Why is it moving?”). But mostly, communicating seems too hard for her—it takes too much energy.

It doesn’t help that she’s deaf in one ear and has only limited hearing in the other, or that she’s blind in one eye with only blurry vision in the other. (I try to see the "lesson" in everything, but seriously...how much IS one person supposed to deal with at one time?) I think it takes too much effort for Mom to navigate between this world and the muffled, cloudy, uncertain world in which she must be living.

Mom’s days have been whittled down to the bare essentials: She wakes, goes to the bathroom, goes to the kitchen table, eats/drinks, goes back to bed. Rinse & repeat 4-6 times a day, though that frequency is dwindling. She needs help every step of the way. She has brief moments of clarity, which I’ve learned to recognize in her eyes. For example, when I said, “Should we curl your hair?” she immediately gave me THAT look, the one I’ve been getting since my teen years whenever I do or say something idiotic. She was ALL there for a second, and I busted out laughing.

But mostly, Mom is unsettled and restless. For two months, she woke every two hours throughout the day and night, like she had an internal alarm, and insisted on going to the bathroom. I came to believe “bathroom” just meant she wanted to get up; Mom has always been at the center of things in her life, and I don’t think she can stand being “out of the loop” (even if we’re all just somewhere trying to sleep) or imagining there might be things happening without her. Hospice has helped us find the right med combo that lets her sleep more peacefully at night—she still wakes two or three times a night and sits up in bed, silently shuffling her blankets. I get up and help her lie back down, and she goes back to sleep.

I wonder sometimes if her restlessness is really fear. Mom doesn’t have any religious beliefs or spiritual practices, and though she’s said she’s not afraid of dying, she is certainly clinging to life. She has unbelievable grip strength, and she is always holding onto something, which I find an apt metaphor for this stage of her life. She even grips the guardrails of her hospital bed in her sleep. And I mean GRIP, as in, I’ve had to gently pry her hands from guardrails and grab bars. I can imagine that for someone like my mother, who’s always had a personality larger than life, non-existence—oblivion—might be the scariest thing of all.

Not long ago, when Mom was still more able to talk, I managed a brief visit with a friend, also in hospice care at home. And when I got back, Mom asked what our friend believed would happen when she died. We talked about it for a while, but I got the sense she was no closer to any kind of peace or comfort of her own. I’ve talked to her about the physics of dying—electrical energy that’s released but never stops existing—but that doesn’t seem to allay her anxiety either. Instead, I usually get THAT look, the one I get when I talk about tofu, organic kelp flakes, ghosts…or curling her hair.

Mom - pretty as these flowers.

Now we’re beyond conversations. I still talk to her (sometimes I’m so sure she hears everything), but mostly she doesn’t answer. I tell her everything’s okay. I tell her we’ll be right here with her. I tell her we’ll make sure she’s not in pain. I tell her we’ll take care of each other. It’s all I can do really. I could talk to her about samsara, and coming back around on the wheel of birth, life, death, rebirth, until we understand true buddha nature and free ourselves from the repeating cycle, but I’m pretty sure she’d either pretend to be asleep or give me THAT look. Again.