It’s not over, but it is better. The fever is gone. The body aches have subsided for the most part. The headache is much improved, although the full, foggy head is still around. I’m eating broccoli salad for breakfast. Now to get the coughing to subside.
I was already having some trouble with my asthma, warranting a visit with the pulmonologist week before last. I had a televisit with my primary care physician yesterday. We talked mainly about the anti-viral drug. It has several side effects that I don’t like. She prescribed it, and if the symptoms should suddenly worsen, I’ll take it later today. I feel like my body can deal with this mild case.
The pulmonologist had a few better ideas. Use the nebulizer. Use the rescue inhaler. Lie on my belly for 30 minutes several times during the day. Evidently, that helps the lung tissue on the back. Huh. And then she told me to take some Vitamin D, some zinc, and Vitamin C. Increase the aspirin dosage to 325.
I think about all those people who had a real case of this cruel virus, so bad that millions died. I’m in the compromised bunch, and I am so thankful that President Trump spurred a quick development of the vaccine.
I’ll do everything they tell me to do. No one told me not to work, so it’s back to packing (and unpacking) a few more things.
We didn’t intend to move this soon after Mom’s passing, but then this house popped up and three other family members and our realtor saw it just about the time Dave and I saw it (they were searching) and everybody thought it was the perfect house for us!
It was quite the deal but we closed on September 19, and now we’re packing and moving. Packing and moving are now “quite the deal” since we are not taking everything and there is an estate sale in November. Staging the house for sale and preparing for an estate sale are two entirely different things that shouldn’t happen simultaneously.
But we’re known for some chaos.
We’ll tell you more later. There’s so much more to say.
I am healing in this most gracious Airbnb in Fernley, Nevada. My brother lives here, but we hadn’t seen each other in three years. I brought some of Mom’s ashes. Denny says they’ll be buried with him.
I’m not sure what kind of restoration I need, but I think I’m receiving it here. I haven’t wept yet, but I’ve wandered around in some sort of a brain fog for weeks, and sometimes I can see a black hole on the right side of my body. The hole travels with me when I’m walking.
Toni, my host, lives in this 1100-square-foot house on a tiny plot of land here in the desert, but she is a Master Gardener, so she has a front lawn and back and flowers everywhere. She offers her master bedroom as a rest for the weary, a quiet oasis where love abounds and healing is possible. She is a joyful provider of shortbread cookies, muffins, and so many goodies I can’t name them all. She runs a not-for-profit (a real one that makes no money) to feed about eighty seniors in this small town. She used to cast movies and videos with some big names, and I bet she was good at it, but she seems so happy with this life of hers that her grace is contagious.
The kitchen is a bright, cool place to be in the mornings. I open the back door for more light and (dry) air. The same little lizard suns on the privacy fence every day. There is a wide easement beyond that fence where wild horses and one donkey appear every morning. I haven’t seen them yet, but I’ve been watching. One time a few years ago, I saw some wild horses on the drive from Reno to Fernley.
So many familiar reminders have appeared since I arrived. I saw a woman in the grocery store with a huge windcatcher tattoo wrapped around her arm, just like one of the seven Mom attached to her walker handles. At Toni’s house, little things keep popping up: a small, decorative screen door like one I bought (and don’t know if I even still have it), the flour sack towels, a hat that is so much like one that Dad wore in the garden (it took my breath away), a bird print outdoor pillow that is the same fabric I have folded up in a drawer, the identical taupe checked fabric of my bedroom curtains on the dining chairs. The sunflowers.
Oh, there’s more. The one that made me laugh is the bubble gum machine. Jade and John had one. It was just like Toni’s except theirs was red. The story that goes with that one has to do with a certain twelve-year-old son renting out his Dad’s Playboys and stashing the money in the bottom of the bubble gum machine. I only found out about that about thirty years later.
My rental Nissan Rogue sports Tennessee plates. When I arrived at Toni’s house, she was watching the last Hallmark movie I watched with Mom. I didn’t notice the Tennessee license plates until Bev mentioned it. Toni later told me she thought, “Surely that woman did not drive here from Tennessee!” And in Wal-Mart in Fernley, NV, a shirt with Nashville on the front!
We’re having a family gathering tomorrow. Denny, Bev, their children Jim, Angie, Jena, and their grandchildren. I’m not sure who else might be invited, but it’s going to be a large occasion with Olive Garden food, music from the great-grands, and lots of stories! Jim’s wife and the greats will choose which pieces of Mom’s jewelry they would like from a large cache I brought with me, except for Angie–she gets Mom’s wedding rings. Bev got to choose last night.
Mom died peacefully in her sleep on June 24 after a one-month illness. Tomorrow marks one month out. It’s too soon to expect too much restoration on my part, but I feel something working.
I thought Toni said I should look for the horses between 6:00 and 9:00 a.m. (Huh. Duh. Brain fog.) This morning, when I told her I was still watching for them, she said no, it’s between 4:00 and 6:00.
We don’t have wild horses in Tennessee. I’ve set an alarm for tomorrow at 4:00 a.m. It’s almost 11:00 a.m., and my little lizard is still sunning and running from one rail to the other, and I need to shower and get to my brother’s house.
But tomorrow morning, I’ll be waiting for wild horses.
They say, (the people who know),
the universe is mostly space.
An empty place.
Furthermore, these people who know
insist that the same is true
for me and you.
We are all, it seems,
just lots of nothing
between tiny bits of solid stuff,
just barely enough
to hold us all somewhat together and,
to the world, make it appear
that we are here.
But this one thing I think I know for sure:
a person needs a God to know
and room to grow.
And one place where there’s God and room,
from everything I’ve seen,
is the space between.
Physical Therapists came yesterday to get Mom to stand and transfer to the reclining chair. The goals for her care have been the same for several days now. They are written on the dry erase board.
Keep systolic blood pressure under 180.
Decrease oxygen demands.
Out of bed.
The two therapists aimed at Goal #4. When they asked if she wanted to get out of the bed for a while (the orders are for two hours,) Mom said “No.” When coaxed about three times, and asked if she would help them get her up, she said, “Okay.” She helped to swing her legs around off the bed, and the female therapist said, “Well, look at you! And you’ve got a pretty pedicure, too!” When each therapist linked an elbow to each of Mom’s for support, she tried to push herself up with her hands, one of which is laden with IV needles and tubes. She got up, sort of, but she had no strength to turn herself to the near right to sit on the chair.
After the third try, they put her back in bed. She bent her knees on command and helped them scoot her up in the bed. Then they adjusted this fancy bed to simulate a chair.
She fell asleep as soon as they left the room. When her head bent dramatically to her shoulder, I lifted her head and re-positioned her pillow to make a support.
I wondered, What are we doing here? And then I thought, She really needs to be at home.
This morning, two nurses used the fancy lift in the room to move her to a chair. That machine is amazing! She ate five spoonfuls of oatmeal, drank half a cup of milk, and has been sleeping ever since. The breakfast tray sent earlier was not touched. At lunch, she tried to drink V-8 juice, but it didn’t taste right to her.
Getting her to eat is not one of the goals, even though she eats very little. I’m pretty sure I can prepare food that she won’t eat as well as the hospital does. (I threw that little funny in to make sure we see a little humor.)
The plan is to move her upstairs to what I have always called a step-down unit, a section of the hospital for those moving from ICU to regular hospital rooms or skilled nursing facilities. The criteria for that move is when she is medically able. While she is there, the caseworkers might usually plan for her move to a rehabilitation center. That is not going to happen, the move to a rehabilitation center. I’ve put that out there for everyone.
This morning, watching Mom sound asleep, crumpled in the bed, vulnerable to whatever treatment she receives and whatever is going on around her, I know she needs to be at home, in her own familiar bedroom, with Dixie, Dave, and Neil, and normal routines. (Well, “normal” for the Compound residents might not look normal, but it’s our normal.) We can plan for Home Healthcare, and we will provide true care at home.
She is more lucid than she has been, and she understands a lot of what I tell her, but she is still not completely in the real world. Or maybe it’s that she is in her world, and who’s to say that’s not the real world.
Now I wonder if she will ever be medically able to leave the ICU and at what point the doctor says, “Okay, I give up.” A nurse told me, “They don’t do that. They just keep trying different things.” Her awareness has increased. Her oxygen demands have been met and could continue at home. She’s helped out of bed each day. But there’s that first goal: If she did not have the high-powered drugs delivered by the needle in her arm, she would stroke within hours.
Today, three nurses tried twice each to start a new IV. Mom’s veins are fragile. I asked, “Okay, what’s the next step?”
A pretty blonde nurse answered, “We call in the professionals, the IV therapists.”
About thirty minutes later, a tiny woman appeared with gear in hand. She looked experienced. I asked if I could watch. On the first try, she couldn’t get the IV in, but on the second try (in the other arm), she made a perfect deep stick and entry. I learned a bit and was glad she let me watch, but that’s not really what I want to look at. I hope I never see another needle in Mom’s arm.
I like to picture Mama sleeping in a gauzy forest bed of flowers between two white veils. Through one of the semi-sheer curtains, she sees and feels the comfortable life in her apartment in the Compound and the beauty of all the blooms and foliage right now outside her kitchen window. Dixie runs over to lie in her lap every morning. Dave cares for her as he would his own mom. Neil fixes things and makes her laugh. I’m always there for her. She drinks orange Gatorade every morning followed by her favorite homemade mocha, enjoys her lunch from a tray on her lap, and eats sliced strawberries soaked in sweetened milk. Her nightgown is laid out on the bed each evening, along with night underwear and hospital socks.
Behind the other veil, there is a beckoning Bright Light, so bright that the semi-transparent drape almost disappears. At some point, the Love in that Light will become irresistible. The soul will make her choice.
At the end of this day, I watch her sleep soundly in her ICU bed. Today, she has fulfilled the requirement of getting out of bed and proven her awareness has increased by remembering her full name and the month she was born every time someone asks. (1931? She doesn’t come up with that.) She receives the oxygen well and is not struggling to breathe.
Her blood pressure spikes again and a nurse starts the IV drip.
I think, for this moment, Mama is warm and happy in the space between.
Just a few short months ago, Mama was truly declining. And then, a couple weeks ago, not long after I wrote the last blog piece, Mama got up from her chair!
Mama didn’t like that motorized wheelchair. Her physical therapist told her if she didn’t want to use that, she better get in gear and exercise those legs! I heard her when she made her first trip to the kitchen sink and did kicks and stretches for fifteen minutes. Then I heard her again the same day. She started walking laps around the apartment with her walker.
She didn’t say it to me, but I heard her. “You just wait and see what I can do.”
After about three days, she started dressing herself in the mornings, cleaning if there happened to be an accident in the night. She layered on the Thrive Causemetics eyeshadow stick to match her shirt, penciled in her eyebrows, and fluffed up her hair. About two days after that, she went to the kitchen and poured her own Gatorade (her way to start the day) and got her pills from the daily box, put her eye drops in, and ate her probiotic gummies.
Then, and only then, did she call me to come up from my downstairs office. (I call it The Study. Dave calls it Your Cave. I try to make it down there by 6:30.) It was close to eight o’clock, which means I have almost an hour and a half to take care of some kind of business before caretaking duties begin.
Now, when I greet Mom, it’s only to finish up daily cleaning tasks in her bedroom and make us both a cup of coffee. Well, she drinks a homemade instant mocha mix that we strive to keep enough of in her canister. We visit about this and that, mostly her reporting what she has learned on the phone with friends and family or the TV. I do housework and laundry in between tales.
On shower day, she helps as much as she can. I wash her back and make sure her hair is rinsed well. We both dry her off and get her ready for the day.
I go back to give her some lunch, or some days, she reheats leftovers from the day before, and I sit down to eat lunch with her about three days a week. About five, I return to make a light supper and do her “turn-down service.” I lay out her gown and night socks and a couple pairs of underwear on her bed, check her c-pap to make sure it has enough water, and place her evening pills in a shot glass on the kitchen counter.
I shouldn’t have been surprised. My mother has been bouncing back her whole life.
March, it turns out, is Women’s History Month and one of March’s days, the 8th, is International Women’s Day. I thought I’d tell you a little story about when Mama made her stand for her rights and equal pay with her male colleagues at Texas Boot Company.
When a new Department Head came in a few years after Mom began her stint as a Regional Credit Manager, he interviewed all the managers, sort of a getting-to-know-you outreach. His name was Jim, and the departing Head, Bill. At the end of their talk, he said, “And I’m going to continue Bill’s work on trying to get your pay up to the men’s.”
I can just see Mom’s eyebrows. “Oh?” she said. “Just how much do ‘the men’ make?”
He said, “I’m not sure of each one, but I can find out.” He reached behind his desk to the credenza, pulled out a black notebook, and thumbed through until he landed on the right page and put it on the desk in front of Mom, upside down, and left the room.
Mom could always read fast, especially if she was looking at numbers, and she got what she needed to know in the few seconds the book lay open.
She called me the next day and described what she saw.
“Do you know a lawyer who would take my case?” she asked.
“No,” I said, “but you really need to file a complaint with the EEOC.”
“Alright. How do I get started?”
“I think I’d just call their office downtown and ask what you need to do.”
She did. It didn’t take long for her to get an appointment. She called and asked if I could drive her to downtown Nashville. Always ready for a fun fight and rarely finding one, I was happy to take the day off and oblige.
I’m surprised they let me go into the meeting with her but there I was, listening to Mom give voice to a wrong, headed toward the right.
When she was finished, she crossed her hands in her lap and let out a long sigh. “Do I need to find an attorney?”
“You have an attorney. He’s coming through the door.”
Both of us sized up a very tall, muscled black man standing in the doorway. He introduced himself.
Mom said, “Nice to meet you,” and I said, “Likewise,” and we shook his hand in turn. Mom said later that she was thinking, “Well, if they don’t give him what he says, he could just beat it out of them.” It made me laugh.
Texas Boot was owned by General Shoe Company. Both the EEOC attorney and the General Shoe attorney, a woman, arrived the next day. The EEOC man came first and called General Shoe. The company’s attorney was in New York but arrived just after lunch.
The General Shoe attorney’s assistants started pulling personnel files, Mom said, to try to find something against her that they could use for leverage. There wasn’t anything there.
In less than three weeks, Mom received a check for several thousand dollars from the company’s treasurer, accumulated underpayment for years of service as Regional Credit Manager for the West Coast. Harry Vise, the former owner of Texas Boot, and now GSI’s head of the Lebanon plant, called Mom to his office. He said he wanted her to know there were no hard feelings on his part.
Then they talked about old times. Mom and Dad went way back with Mr. Vise. Both had worked in the factory many years before when he owned the company. Dad had been a Cumberland University married student with a wife and two children and needed part-time work to help support the family. Mom’s income as a fancy stitcher on Western boots was their main income. Mr. Vise, who was Jewish, knew Dad as a minister and called on him often when someone in the factory needed guidance or spiritual help. There was always room in some department when Dad had hours he could work.
At Christmastime, Mr. Vise insisted on a company party, where there was a small show and the singing of carols. He always requested Joy to the World. (We never understood that.) I remember singing for that party when I was about eight years old. I think I performed my rendition of I’m Gettin’ Nuttin’ for Christmas. At the end of every party, every employee received a gift basket from Mr. Vise. There was always a turkey in the basket—and a ham.
The local head of human resources asked Mom if she was really staying with her job. She said yes, and he asked if she would like to be Jim’s Assistant department head.
She wondered aloud what kind of increase in pay might be at hand. He said none, but the duties would change some.
She declined on the spot and said if the company ever intended to pay for a real Assistant Head, she’d like a shot at it.
The General Shoe attorney called every morning for several weeks to ask Mom if she was being treated well. Mom said she hadn’t noticed any difference, that she’d always got along well with all the men.
She kept her position, receiving regular raises until she retired at age 67. She kept in touch with several of the men she worked with and talks to her old department head every couple of months just as she did with Mr. Vise until he died in 2015.
I’ve loved Women’s History Month so far, learning about, or remembering, women who have made rich contributions to life in these United States. This morning, on The Kelly Clarkson Show, a guest said he would like to go back in time — I can’t remember how far — to experience life before technology and such.
“Wouldn’t you?” he asked.
“Well, no, I wouldn’t,” Kelly answered quickly, “because I’m a woman!”
Mom and I both laughed and cheered. Mom said she didn’t want to go back to any place in time because she loves right now and is excited about what changes come in the next few years.
No wonder she’s my International Woman of the Year. Forever.
For relatives and friends with whom I don’t communicate regularly, it’s tempting to say, “Fine.” I can’t see that more explanation would be helpful, certainly not to me. When close friends ask, I try to gauge the amount of time I have to answer. Sometimes I say, “She’s requiring more help now, but her mind is still sharp.” If they have time to listen, and I have a few free minutes, they might click that button that says “Learn more.” Then we engage each other briefly.
I am completely honest with my writing group, The Five Ladies-in-Writing. I know they genuinely require some details. If I haven’t asked myself the question, I sometimes have trouble formulating an answer. That’s how I learned to talk to myself about Mom; I try to speak to her condition, her care, and even my worries about the future near and far.
So, self and caregiver, how’s she doing?
Things are definitely different than a year ago.
Last year, the first time I saw Mom each morning, she was sitting in her recliner in the den. She’d made her bed and emptied her bedside commode. She’d washed herself (showered on Thursday and Sunday), put on clothes and makeup, and coordinated her jewelry to complement her outfit. She’d taken her morning meds and checked her blood pressure and weight. More often than not, she’d be drinking her morning cup of mocha. I’d found an old recipe for Instant Mocha; non-fat dry milk, powdered creamer, Nestle’s Quik or a store brand of chocolate drink mix, instant decaf, and Truvia. The TV would be on Channel 5 so she could watch Gayle King and the boys.
She’d ask what I was cooking that day, and tell me whether she’d like to have some of it. If not, she would cook for herself. She’d remind me of appointments, mine and hers, for the week, and ask me what I was going to get into that day. She’d tell me what she’d put on the grocery list, so far. Dixie would come flying into the room and demand that Mom give her an animal cracker kept on a shelf in a table by Mom’s chair.
After her treats, Dixie would settle into Mom’s lap to get morning loving.
Nowadays our morning usually goes like this. Mom calls me when she wakes. I give her a few minutes, maybe five, to sit on the side of the bed to get herself acclimated to being up. When I get there, she has part of her clothes on, or none. If she hasn’t been in the bathroom to wash, I bring her hot washcloths and towels. Somedays, we clean more than others. Maybe the bed is wet, maybe the rug beside the bed, maybe just her gown. We finish dressing. Sometimes she wears an outfit that is clean that she wore the day before. Sometimes I choose more clothes–and shoes to match. Sufficiently clothed, Mom begins the twenty steps to her dressing room with her walker.
(On shower days, Tuesdays and Thursdays, our routine varies a little. But this story is about all the other days.)
While Mom is making her way to the dressing room, I go the opposite direction through the house, turn on lights and lamps, check the pad I keep on her lift chair (she doesn’t use the lift!), unplug the new motorized wheelchair that she’s yet to master, and retrace my path to her dressing table. Sometimes she is on the vanity stool, more often just beginning to sit.
We begin her beauty routine. She applies cream to her face. I arrange her hair with a plastic pick, making curls around her face and smoothing the back. She loves hairspray and the curling iron when she’s the stylist, but I find that both make her hair brittle so I spray it with some texturizer and tweak it a little. I’ve found the softest eyeshadow pencil that both holds its color and goes on smoothly. She has blue and hazy purple. She chooses the color for the day. She wants eyebrows. I pencil them in with a charcoal pencil. She would like mascara, but the woman has double fur framing her eyes akin to Liz Taylor’s so I’ve convinced her to skip that step. (Actually, she tells me every once in a while that she wants mascara, but I tell her “Oh no, you’re not going to cover up those furry eyelashes! I’ve seen what happens when she applies mascara and I don’t even want to try it.) Lipstick: She needs dark, bright colors. She chooses from several Maybelline New York 24-hour colors. If she is feeling well, she puts it on. If not, I do it. Either way, we are as likely to miss as hit her still perfect natural lipline. I clean the oops with micellar water. She usually applies the gloss.
“Do I have earrings?” she asks. I turn to her bedroom to find a pair to match her outfit. She clips them on. If one is loose, I re-clip it.
“Okay, am I ready to go?”
I answer, “Looks like it to me. You look beautiful.”
While she walks through her dressing room, Dad’s bedroom, and down a short hall to the den, I place her morning pills into a shot glass and pour a glass of Gatorade. I take both to the den and set them on the table beside her chair. I grab her water bottle from her walker seat to exchange it for a clean one full of ice and water.
In her chair, she finds her bottle of probiotic gummies and eats them with her Gatorade, applying eye drops for her glaucoma. I return to her bedroom, empty and sanitize her bedside potty, turn the lights off, and wash my hands in her bathroom.
I ask if she’s ready for her coffee. She still drinks the mocha mix, just wants to call it coffee.
Sometimes I drink my second cup of coffee for the morning. I ask her what she wants for breakfast. She usually wants a shake, but this morning she ate sausage, half a serving of rice pudding, and toast. She drank a glass of milk.
Dave calls to ask if she wants to see Dixie. She always says she does. After Dixie eats a plate of scrambled eggs, two animal crackers, and a small handful of cashews, the two of them begin their daily love-in.
Dad’s birthday was September 25. He would have been ninety-two this year had he not died at eighty-nine.
I don’t really believe in heavenly birthdays. I mean, if you’ve arrived at that perfect resting place to walk streets of gold and sing in that angel choir, I can imagine a more logical celebration might be of the day you got there. That would be that day you made the transition from earth, flying to the skies. For Dad, that would be November 19.
Still, I think of Dad every September 25, and small and large events always pop up to remind me of him.
This year, a Saturday, I was in my study editing a book for a friend when Neil (our semi-permanent houseguest) knocked on the door. He held out an old pocket knife with a faded tiger-painted pearl handle and said, “I just found this. I bet it was your dad’s.”
I took it from him and answered, “Looks like his. Now if one blade is broken…” It was. I didn’t know Dad still had the knife, but I remember asking him, “Why don’t you get a new one?” He told me, “Because I like this one so much. I’m used to that broken blade. In fact, it’s come in handy in some situations.”
I laid the knife on the base of my computer monitor and stared at it for a while. The last time I saw Dad use it, he was cutting bright red string to secure tomatoes to their cages. I tried to get him to use something less showy, maybe green, but he got a big roll of crimson twine, free, from a packing company and was proud to use it.
Since Dad died, I moved my office from The Cellar to The Study. The Study was Dad’s place on the ground level of their apartment. He had it framed and made into a room when they first moved in. It was where he hid from Mom and the TV. His old wooden desk, a sofa, and all his books (about 600) and sixty years of sermons lived there, too. I sold most of his books and moved his desk out, and brought over all my furnishings and books from The Cellar, the efficiency apartment in the basement of the main house and now Neil’s place. This year, I got artwork on the walls and started using this room every day.
I come down to The Study about 6:00 am every morning. Saturday, September 25, 2021, was the same. I don’t see anyone until Mom wakes up, and I go upstairs to help her get her day started. After Neil presented himself and the pocketknife, I thanked him and, since I’d been whisked away from my editing tasks so suddenly, took a few minutes to get back into a work mood.
I hadn’t slept well the night before, so an afternoon nap was in perfect order. When I woke after an hour-and-a-half, I grabbed my phone to see if I’d missed any messages. Somehow I wound up on Gmail instead of Messages, and a New York Times headline caught my eye. “Breaking News: An Amtrak train derailed in Montana, At Least 3 Dead.”
When it was time to give Mom supper (about 4:30), I sat down for a few minutes in her living room. “Mom,” I said, “Did you see that a train derailed in Montana?”
“Oh, no. You know, that’s what your dad was afraid of when we were on that train trip to California.” My brother Denny and his wife, Bev, had given Mom and Dad tickets on the train from Nashville to California. Mom loved every minute; Dad hated it. He swore everyone that was on that train (the one to California) would be killed. He told Mom that when he got to California, he was going to get back the money paid for the return home from Amtrak and find an airplane with a flight to Nashville.
“No, you are not,” she told him, probably a bit firmly. “The kids gave us this trip because they thought we’d enjoy it, and you’re going to behave yourself.”
He did, but he didn’t like it.
We picked Mom and Dad up in Kentucky, and Dad swore he’d never get on a train again. He didn’t.
Now, sitting with Mom, I pondered what this coincidence meant, if anything.
“And on his birthday,” she said. “Amtrak. We were on an Amtrak train.”
It was time to get home and start dinner for the rest of the family. I took some compost to the porch and happened to look to the lower garden. The red dahlias had burst into bloom. They were always in bloom for Dad’s birthday. He loved red, especially red roses. “Hey, Sis,” he would ask me every September, “Are those red roses blooming in your lower garden?”
“No,” I’d answer. “They’re not roses; they’re dahlias.”
“Well, they sure are pretty. You’re certain they’re not roses…”
This past weekend was the date for the Southern Festival of Books. Dad loved any event featuring the written word. He preferred non-fiction: politics, theology, biography. I’ve been a volunteer host for sessions for years, and Dad always wanted to know about my authors.
Like last year, the event this year was staged virtually, for the most part. I received notice of the authors who would be in conversation for my session. I got three favorites: Bobbie Ann Mason (she wrote In Country), Wiley Cash (A Land More Kind than Home), and Ron Rash (my favorite book from him is Saints At the River.)
Volunteers receive the author’s current work in the mail to use for preparation. We usually make a short introduction for each author, and we prepare questions to stimulate discussion between the authors. Serenity, the woman in charge of the sessions told me, “You don’t have to do much for these three. They know each other, and I expect them to just take off between themselves without much help from you.”
I didn’t get to read all three books before the session. I received Wiley’s novel, When Ghosts Come Home, and Ron’s collection of short stories and a novella, In the Valley, about a week before the event. I finished Wiley’s and read three selections from Ron’s. I received Bobbie Ann’s Dear Ann this week, several days after the SFB. The day before the session, I was still preparing, and the day of the session, I was trying to wrap up bios for each author. I found good information on the publishing house’s author website for Bobbie Ann’s and Wiley’s. I had to go to Wikipedia for more information on Ron Rash.
While I’d talked to each of these authors at book events, I’d never really engaged them. I hoped they played off each other as I’d heard suggested by Serenity.
They didn’t. I had to lead a bit during the session. It felt somewhat awkward at times.
Bobbie Ann appeared a little wafty, but some say that’s normal. Wiley was cute, young, and animated. Ron…well, Ron was thoughtful and quietly funny, subtly spiritual, I guess, the type of guy you just want to pat softly on the shoulder. But I knew what he’d be like. I’d seen on Wiki that his birthday is September 25.
I don’t cry much, but when I do, it’s usually because a truck full of Cub Scouts just drove by in a 4th of July parade. It gets me every time.
I didn’t cry when Dad died. The tears appeared months later heading down the street to my doctor’s appointment at St. Thomas Hospital. I thought of the conversations Dad and I had on the way to visits with his primary care physician, and a hole bored through the middle of me. There’s no way to fill that kind of hole. It’s best to just let it scab over and scar.
Mom dreaded this appointment with the cardiologist. At her last visit six months ago, he’d told her to cut out salt entirely and lose some weight. Mama can’t stand for anybody to be unhappy with her. He was just doing his job when he told her to mend her behavior. She hadn’t seen him in a year, and she had suffered congestive heart failure while vacationing in California. He legitimately wanted to curb any fluid retention. She thought he would surely give her a talking-to this time since she hadn’t lost a pound, nor had she completely cut salt from her diet.
On the way to I-65, I tried to make light of Mom’s worry about her encounter about to happen. I told her, “Don’t let him rattle you, Ma. Just say, ‘uh-huh’ and ‘I’ll do better next time.'”
“Or,” I added, laughing, “when he says you didn’t lose any weight, you tell him, ‘Well, you didn’t, either!'” We’d noticed that last time he’d picked up about twenty pounds. He’s always been a natty dresser, and he still looked good in his yellow plaid jacket and blue pants, but we were sure he’d had to purchase some new ones.
St. Thomas is not known for the easiest parking arrangements. There was no space in the semi-convenient open-lot parking downstairs, where we would normally take an elevator up three floors and walk down a long hallway. We had to park in a multi-level garage across the street, walk down a long skybridge connecting the garage and hospital, then directly into the other end of the Heart Institute. In my mind, the distances are fairly equal. There is a small difference, though. That skybridge is ever-so-slightly uphill.
I offered Mom one of the hospital wheelchairs waiting just outside the skybridge doors.
“No, that was way too much trouble the last time we did that. I can do better with just my walker.”
“Okay,” I said. “We can rest along the way if you need to.”
She needed to rest several times. Fortunately, the hospital designers saw the need for padded benches built into the windows every twenty feet or so. The seats are chair-height, so I tried to get her to sit in her rolling walker. She wanted to sit on the bench. Getting up and off the bench to grip the walker’s handlebars was difficult and required assistance.
When we finally reached the entrance to the Heart Institute, the nurse screening for Covid-19 waved us into the large waiting room.
“Go ahead and get her seated up in the front,” she said. “Then you come back and I’ll check your temperature.”
Mom sat on her walker in a section of chairs near the registration desk. I had pre-registered the night before but was still expecting more paperwork, or tablet work, once we got there. To my surprise, there was nothing more to do.
I sat down beside Mom. She was spent and breathing too heavily to talk. She looked pitiful.
When the nurse called Mom’s name from the doorway to the exam rooms, I quickly stood and met her at the doorway to say, “She can hardly make it. This might take a minute.”
I turned back toward Mom. Deborah called out, “Did y’all just walk across the skybridge? Oh, God love her. Keep her right there. I’ll bring a wheelchair.”
“I’ve never seen her so exhausted.”
And right at that moment, I saw my usually lively little mama grey-faced, eyes drooping, and so short of breath that her mouth was halfway open. Maybe what shook me was some form of pre-grief. The Universe suddenly reminded me that I won’t have her with me always.
I know that in my head, but this knowing, this moment of sorrow, was a gnawing in that hole in my middle, maybe opened just enough to make me break. I could not let my mother see me crying.
Mom was relieved to scoot onto the wheelchair seat. The nurse quickly wheeled her to a room, helped her into a chair, and rolled the wheelchair into the hallway. The room is small. I stood just outside the door.
“If you don’t mind, I’ll take her back to the garage in this chair. I can come back and get her walker.”
She answered, “Honey, you just relax in here with her, and we’ll take care of the rest.”
The doctor arrived in about fifteen minutes. He seemed so happy! He began by cheering Mom’s blood pressure, her stable weight, and her obvious (to him) sparkle in her eyes. He directed a question to me.
“Don’t you think she’s doing well?”
I nodded. “But wait, what’s that on your mask?”
He answered, “I was just about to tell your mom that we have a new addition to the Blair family tree.” (His grandmother was a Blair in Texas, and he has always insisted we’re all related.)
He pulled his pictures up on his iPhone, turning it this way and that to make sure both Mom and I got a good look at this little six-month old in snazzy yellow plaid overalls, blue jacket. and a matching bowtie on his white shirt.
“Oh, what a cutie!”
“Isn’t he a handsome young man?”
He answered, “Oh, that little fellow has us all wrapped up in him. Oh, my.” He closed his eyes and moved his head from side to side. “His name is Walter.”
“Walter!” Mom said. “My husband’s Grandfather Blair was named Walter.”
After the baby talk, the doctor said, “You’re doing well. I think, and let’s see if you agree, that we should see you again next year. Of course, you can always call if you need us.”
“I guess I’m doing well for my age,” she said.
“You’re doing well for any age,” he answered.
Mom and I got the giggles when he left the room, bemused by the way Walter captivated this cardiologist-surgeon, and relieved that no one seemed unhappy today.
“He was just too enthralled with that new grandbaby to fuss at me,” she said.
The nurse appeared. “Diana, I’m going to take her to your car. You just bring the walker.”
I lifted the walker into the back of the van, backed out, and stopped at the elevator doors.
Mom thanked the nurse and closed the van door.
“Next time,” she tol me, “I’ll take that wheelchair at the beginning.”
We pulled out of the garage. “Ahhhhhh, sunshine!” I said.
For Dad, it’s Alive Hospice, Murfreesboro, Tennessee.
The Nashville facility was full and the admissions nurse so determined that Dad needed to be there that she sent him to the Murfreesboro campus at midnight Friday.
Daddy rests in a large room halfway between the nurse’s desk and a family room containing comfortable chairs, recliners, and couches that flip into beds. There are several family rooms here, one with a dining area in front of a wall full of windows. The light streams in as if on cue.
In Dad’s room, we keep the lights dim. The room is quiet and peaceful; so is Dad.
He only stayed at the skilled nursing facility less than two days. We knew it was not the place for him, and when his kidneys began to fail Friday, the attending nurse practitioner recommended an immediate move.
With the help of the SNF’s social workers and nurses, Alive Hospice Nurse Gail ordered an ambulance for 11:00 P.M. They arrived at 11:45, two youngsters in ball caps reading Medic One.
“I’ll be riding in the back with him,” the smaller one said. “I see his diagnosis here is dementia. Has he ever become combative or kicked or punched a nurse or tech?”
I hesitated. “Yes, he did at the hospital, but that was when he was in complete psychosis. He’s not doing that now.”
“Well, I just wanted to let you know that if that happens….”
Big Guy butted in. “No, no,” he told his sidekick. “If something happens, you just let me know and I’ll pull over to the side of the road and come back there to help you get him calmed. We want to be very soft…soft.”
I could actually imagine a scene like that.
I left before the ambulance. The ramp to I-440 was closed, probably because of a fatal accident earlier in the day, but when I turned around to go the opposite direction, there were cars making left turns onto the interstate so I followed them.
I met Shirley, the night charge nurse, the techs, and the front door security guard. Shirley went over the care plan, medications that they’d be using, and ways they operate. She said the doctor would see me on Saturday. I told her it was already Saturday.
A nurse stuck her head in the room. “I am wondering what is taking that transport so long. Did you leave a long time before they did?”
“No, I was right in front of them, but I bet they got to that closed ramp and found another route.”
Turns out, that’s exactly what happened. They were automatically re-routed.
Dad was awake. Shirley explained what was happening.
“Ernie, we’re going to give you some pain medication and then we’ll give you a bath first thing and get you all freshened up.”
Two techs and two nurses busied themselves over him. He talked to them in slurred speech and from an altered state, but they caught about every third sentence.
“You are a handsome man,” one said. Another asked him about his 72-year marriage. “What’s the secret?” she asked.
“Let each other be free to grow and develop” is what we think we heard. I confirmed that he might have said that.
Then came the washing of the private parts.
“Ernie, we are going to have to wash you down there. Normally, we’d just let you do it, but you have some leftover bm there and we want you to be clean, okay?”
“Ah, you girls just want to look at me,” he said. “All the time.”
We all laughed at him.
“No, we don’t, but I’m going to raise your gown and clean you up and then we’ll put a fresh pad and gown on you.”
He picked up a towel a tech had left beside him. “Then I’m just going to put this over my face,” he said, and hid his whole head from the offending eyes.
We laughed some more, but they got him cleaned up and bundled up in his new bed.
Dad now gets a pretty stiff cocktail of haldol, morphine, and a valium-like drug. The dosage is small but repeatable. If he is not calm twenty minutes after the last offering, the nurse starts the routine again, or she slightly increases the morphine.
He lies quiet in the bed most of the time but when the meds start to wear off, he twists, grimaces, and mumbles.
The grandsons and families came to visit yesterday, including Jaxton and Savannah, ages 5 and 3. Neither was upset by Grandpa’s condition. Savvy said hi to him several times, anxious to get an answer from him. Mom was glad to see the little ones.
I stayed last night. I played music to him and sang to him, hoping something might connect. In the middle of the night, I heard him say, “Diana.” I wasn’t sure of that until I sat up and waited for him to call me again. It’s like what happens when you try to say my name without being able to move the tongue.
“Lie-ah-uh,” it sounds like.
“What, Dad? What do you need?”
He grasps my hand. I kiss him on his old bald head.
My daddy hovers, sometimes thrashes, naked, his mind somewhere along an invisible jagged line between his tiny spot of time and space on earth and the ultimate reality of Infinity.
His heart beats so fast sometimes that we fear stroke. Doctors get his heart rate down and his blood pressure goes up. Get the blood pressure down too low and some other wheel falls off the old bus.
He fell in his bedroom sometime very early a week ago Tuesday morning. Before we found him on the floor with a bloody gash on his head, he’d pulled shirts, belts, and a bootjack from his closet. He told us he’d ducked into a shed for shelter from the rain and realized he’d stepped into some man’s corn crib. Then he couldn’t get out of the field and had crawled through rough straw for miles.
Dad did not get confused because he fell; he fell because he was already confused in the night and hallucinating. We’ve seen a slow slide toward dementia for about three years, but since last Christmas the disease has tracked him like a cat, consistently and with increasing speed. We’ve watched a wretched auto-immune disease rob him of the ability to enjoy food and then to swallow well. His legs grew weaker and weaker, so often he could not stand, even with his walker.
In the emergency room after the fall, he fought with three cats, two black and one black and white, that kept pouncing on the bed. Every time he kicked them off, they came back. I shooed them away. He re-told the corn crib story with variations and repeated an earlier adventure stripping tobacco with two youngsters who would not talk to him. He was pretty sure they could talk, they just wouldn’t. The ER physician called a hospitalist to provide overnight observation.
Once in the room on the fifth floor tests began, including an ultra-sound on his legs. The technician came in Wednesday morning, made it through the scan of one leg and then Dad refused. He kicked at the machine operator. She dodged and moved the equipment. He kicked some more. When nurses arrived to rescue the tech, he doubled his fists and slapped at them.
I said, “I don’t think you’re going to get that next one.”
She smiled and said, “I’m pretty sure of that.”
Within a few hours, the a-fib grew worse and Dad grew so wild and combative I wished for restraints. They came quickly. He did not sleep–not one wink-– for four days. One night, I bent over to pick something up just under the edge of his bed and even though his hands were tied, he grabbed my hair. It took a few minutes to pry his hand loose.
My dad’s wild mind fashioned a scary story with escalating horror. He gave me the base plot as he dressed me down. I was trying to kill him, leading a band of nurses are my followers. He kept saying that he can’t believe I would do this for money. “Greed. Evil. You are no daughter of mine.” I stood stark still, as if at attention, stung and disoriented. The words might have attached themselves to a deep sorrow if I hadn’t heard a voice. “This is not your dad.”
For several hours, there was a huge farm machine loose on his farm. We–the nurses, Jade, John, and I–had already destroyed the farm with this wrecker/excavator. We knocked down trees and ran through the shallow creek, breaking the flat limestone into small pieces. We were going to let it run over him, and then it was somehow above him and we were preparing to let it fall to crush him. One hour we were setting him afire. Another time, we were trying to poison him.
He disowned me, then started yelling again. I tried to slip a dry mouth lozenge in his mouth but I wasn’t quick enough. He can’t bite since he has no teeth but he clamped his jaws shut, turtle tight. Then he said to the air on his left, “Jameson, look at your mother. This is the kind of mama you have.” Jameson is my grandson, not my grandson, and he is safe at home in his own bed.
Dad got back to serious yelling. “Where is Mom [my mother]? She’s the only good person around here.”
The student nurse asked, “Does he like music?”
“Yes!” I said. “I can’t believe I haven’t thought of that. I should have brought in a player. There’s no music channel on the TV.”
Wait, I thought. I could stream from my laptop.
I grabbed my almost-dead HP from my bag and began the frustrating process of hooking up to the hospital free-for-visitors wi-fi. It’s a finicky network. I spent twenty minutes and then gave up.
Dad changed the venue. “Help! Come on, we’re down here in the bottom by the creek. They’re trying to crucify us all.”
The last time he had mentioned crucifixion, the nurses were attaching restraints. I watched him pull at the cords and thought of rodeos and roped calves. I remembered a pig bound and hung for slaughter at my grandfather’s farm, and of holding my dog Murphy for an injection.
That night, I left him praying. The words were plain and the sentences cohesive. “Lord, thank you for this life I’ve been given. And if you want me to die now, I’ll come. I ask you to forgive Diana and all these evil persons who are doing this to me. They know not what they do. Take care of their little children.” I walked out of the room, on down the long hall to the parking garage.
The next time, he was on the hill at the farm in Smith County. He called for his mother. “Mama, come on here. I’m up on the hill. They’re about to kill your last son. Don’t you see the smoke?”
He did not remember that seventy-two years ago on the same day, Halloween, he and my mother took a long taxi ride to Georgia and married. He was seventeen, she “fourteen-almost-fifteen,” they said.
My mom waits at home, not really worrying, just pondering. She is dressed in blue matching pants and top, her curly hair neatly combed back, and her ensemble accessorized with the usual rings, earrings, bracelet, and necklace.
After two days and several doses of psychiatric drugs, the restraints were removed. He was still agitated but not trying to hurt anyone. He rolled his sheet and blanket into a wad and tossed them to the floor. He pulled his arms through his gown, easing the heart monitor through a sleeve. The gown and a couple Chux pads found the floor. I heard a pop, pop, pop as he removed the leads to the heart monitor. He seemed pleased that he had wires to untwist. He repeated the process several times.
He slid down the bed and pounded the foot rail in a surprisingly steady rhythm. He called for my mother, yelling louder than he’s been able to in years.
I told him, “Dad, Mom is not here.”
Sometimes, for a minute or two, he believed me when I told him, “You’re in the hospital, Dad.”
“In the hospital? What am I doing here?”
I told him, “You have to stay for a while until you get better, and you are getting better.”
“Am I in South Carthage?”
“No, Dad, you’re in Nashville. At St. Thomas.”
At times, it connected and he said, “Oh-h-h-h-h-h.” Another time he added, nodding his head, “So that’s the problem!”
One afternoon, he asked, “Did you know the cats are back?”
“No,” I said. “What are they doing?”
“Oh, they’re just lying around down there at the foot of the bed.”
I said, “But you’re not trying to kick them off.”
“No, I got used to them.”
From time to time, the psychiatrist Dr. Le Coguic stuck her head in the room to ask a few questions with telling answers.
She: What year is it, Mr. Blair? He: 2017. She: When were you born? He: Five, twenty-nine, no. Five, nine, no. Twenty-five. She: That’s good enough! Now who’s the President? He: Truman. She: Hmmmmm.
I snuck in a word there. “He really knows. I asked him myself yesterday and he said Truman and I said, ‘No, it’s Trump, Dad,’ and he said, ‘Yes, that’s who I mean so just pretend I’m saying Trump when I say Truman.'”
Dr. Le Coguic laughs out loud. “Good enough!” she said.
The next time she asked him, he said, “Oh, that damn Trump. Truman.”
The morning of November 7, I walked into the room where a soft-spoken chaplain introduced herself to me as Gail. She was asking Dad if he was a spiritual person. She didn’t understand him, but he answered her, “I suppose so. I’ve got a Master’s of Divinity from seminary.” I translated a few sentences to her until Dr. Chris MacMurdro from the Palliative Care Department stepped in. Because Dad was still talking with Gail, Dr. Mac asked if we might step down the hall to talk.
“Call me Dr. Mac or Chris,” she said and explained her specialty. After several minutes of discussion about what I might expect or anticipate or decide, Dr. Mac told me with his refusal to eat or drink, Dad would likely be gone in two weeks. It’s too early for hospice, she said, but you will need them. If Dad goes to a skilled nursing facility, he might get a few days.
Just as Dr. Mac and I were ending our conversation, Gail approaches us from the doorway of the family waiting room. “Your dad,” she said, and placed her hand over her heart. “Oh my. And thank you for helping me understand what he was saying. I could understand him after that.”
“Good,” I said.
“This is the first time a patient has prayed over me,” she said.
“He did?” I asked.
She teared up. “I asked him if he would like me to pray with him, and he took my hands and said, ‘I’ll pray for you.'”
“And he did?” I said.
“Yes, and now I have to go sit down somewhere and cry.”
Later that day, when I told Dr. Mac the evening Zyprexa seemed to make Dad more agitated instead of less as it was supposed to do, she wanted to revisit his history of hallucinations and his increasingly weak legs. “Let me go back and look at his chart again,” she said. “I’ll call you back.”
“Dad,” I said, “would you drink one of your protein shakes? I have a cooler over here with three drinks in it. Which one–chocolate or vanilla?”
His eyes lit up a little. “Chocolate!”
I rolled the bed up and offered him the straw in the bottle. He tried to take the bottle.
“I want to drink it. Myself.”
“Well, okay.” I grabbed some Chux pads and tucked one around the top half of his body. I helped him hold the drink, with him struggling to wrest it from me, until I knew he’d had enough that he wouldn’t immediately pour the stuff all over himself.
He drank almost all of the eight ounces. He drank almost ALL of the EIGHT OUNCES, the most food of any kind he’d had since more than a week ago.
Dr. Mac called. “Diana, this is not Alzheimer’s. I’m thinking more like Parkinson’s with Lewy bodies. That would explain the reaction to the Zyprexa. Do you know much about Parkinson’s?”
“Enough. A lot,” I said.
She said he wanted to confer with the hospitalist, Dr. Meadors, about switching him over to something like Valium, which would be much more effective if we were treating Parkinson’s.
Sure enough, the Valium (or whatever it was) helped calm him. Dr. Mac called to say that Dad appeared now to qualify for in-patient hospice, and she had arranged a meeting with Rosie from Alive Hospice downtown. She explained her wish for inpatient hospice.
“The Parkinson’s thought changes everything. His medications seem to be headed in the right direction. He could use the meds management at inpatient to get them all tweaked to the point that you could manage him at home with the help of home hospice.” She fears for my ability to physically manage him at home right now and for my mother’s emotional health as she watches Dad decline.
I made her promise that she will always work toward our goal of getting him home. She repeats to me all the information I’ve given her, including the DNR and comfort care directives.
End of day, Wednesday, November 7. Dad slept peacefully almost all night.
Yesterday morning, he knew me when I arrived. He smiled and said, “Hello, honey.” Dr. Mac called to discuss the latest strategy since he has improved enough that he probably does not qualify for inpatient hospice. “We’re thinking we can send him over to the rehab facility.”
Dad and I sat in quiet most of the day yesterday. He was tired. He thought he might want sausage and eggs. I tried. He drank a bit of milk shake. I tried again. I massaged his aching hands with cream, swabbed his gums and washed out his mouth.
“You’re going to make me bald,” he said when I rubbed his head. That’s a little joke we have. Not long after that, we both dozed at the same time.
When I told him I was leaving for the day, he said, “Be careful driving home. Is it still raining?”
I said, “No.” It did not rain all day yesterday.
Just as I started to exit the room, he called softly but firmly, “You are going to call Red Blair to help you get that big machine off the hill, aren’t you?”