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.
Cindy Louise Santana Guinn died yesterday morning. Around the Compound, we are all numb with shock. She was one of the younger kids in her family, and her brothers and sisters, nieces are devastated as is her twelve-year-old son, Connor.
An ambulance took her to the hospital Wednesday morning and, two days later, she was gone. She left in just about the way she did everything–in a hurry.
On Monday, she mowed and trimmed the lawn, then worked on some soaker hoses and pulled some weeds, bee-bopping around the yard as usual.
Normally, Neil, our permanent houseguest, would cook her breakfast downstairs in The Cellar and she’d chow down bacon or sausage, eggs, and biscuits a little before 9 o’clock, swigging down a huge glass of orange juice. She always wanted mustard on her sausage or bacon biscuit unless there was a tomato involved. Then she wanted mayonnaise. “You gotta have that mayo the minute you say tomato, she told me.
Monday, I was down with aching legs, and Neil was gone to a job in Lawrenceburg, so she didn’t get breakfast. About noon, I texted her.
We didn’t go through our standard ritual for finding each other outside. I’d usually yell “Cindy Lou” and she’d reply “Where are you?” until we saw each other somewhere on the grounds.
I texted, “Hey, I bet you’re hungry. You want a bowl of leftover chicken and dressing?”
“Oh yea,” she answered, “leav on sid porch.”
So I did. A few minutes later, I saw her skip up the ramp and go back down eating. She could put away some food.
Neil cooked her the last breakfast she had here. Neil and Cindy were a funny thing together. They loved each other. Every once in a while Cindy would slap Neil on the butt and then say, “But you’re just not my type.” He’d often help her fix a lawnmower or truck or something else at her sister Cathy’s, where Cindy also lived with Lee, Cathy’s wife, and Brenda, a friend. (It’s a big house.)
The last time Cindy called Neil for help, a big snakes had wound itself into a tree trunk. Lee was mowing the front yard, saw it, and drove on. All these women were scared of snakes. Lee had assembled a scraper on a pole. Neil and Oliver, Neil’s teenage son who was here at the time, used the snake pole to lift it out of the tree and then herd it across the street so it could climb somebody else’s tree. Neil says a large audience of neighbors gathered to witness the event.
Last July, Cindy and I were pulling weeds, as usual, in the lower garden close to the ravine. She was on the side closest to our big ditch where a birdbath has been sinking. She said she thought she’d move the birdbath and attempt to fill in the low place. I said okay and she started toward the spot, turned around, and crossed fifteen feet of yard with three steps, climbed a curly willow tree, and hung onto a branch. I wish I’d snapped a photo, but I was on the ground laughing too hard to get up. I knew she’d just seen a snake.
She was down the tree just about as quickly as she’d gone up, and described a “big black snake, I mean half a foot around and four feet long” stretched out along the base of the birdbath. She shivered a little and went back to her project. The snake had taken a high-speed exit to the ravine and Cindy was happy. I was still laughing.
We didn’t hug or get close, hadn’t for months, but she had vacationed in Florida a couple weeks ago and was now extra-distancing. She was a big hugger, as were her brothers and sisters. She always visited Grandma until Covid took over the land. Sometimes she brought presents. We missed the hugs.
Cindy was a fixture around The Compound for at least seven years. She tended our lawn and gardens once a week. Sometimes she helped move stuff. She painted and wallpapered my studio. She’d jump on a ladder and change a lightbulb or clean a fan. She shampooed carpets and upholstery a couple times. One year, she volunteered to clean the windows because, you see, she’d mixed up the “most awesome” cleaner. I don’t know what the mixture was exactly, but the windows sparkled.
A graphics designer in the past, Cindy felt a special calling to run her own lawn and garden business. She might have weighed 100 pounds, but she was tough as nails. She said she owed that to her Puerto Rican DNA.
Family was everything to the Santana kids.
They’d lost a sister, two brothers, and their mother. Maybe those losses made them cling even tighter. Then Cathy’s son died a year ago. That was really tough. Now this one.
I don’t know how we’ll memorialize Cindy, but right now the huge patch of wildflowers, zinnias, marigolds, cosmos, and sunflowers pay homage. Cindy and I decided on planting a “pollinator garden” a couple years ago, so we just let the grasses and whatever grow up in that patch, bloom, and feed birds, bees, and butterflies–and whoever else shows up to eat. She made me buy lots of sunflower seeds.
That patch will go to seed this fall. I’ll collect and sow them next spring. The volunteers and self-seeders will grow again. I’ve got some sunflower seeds and someone in my online gardening group said to go ahead and plant them.
Dave and I wanted to send food to the house last night. I finally settled on Publix fried chicken and all the sides, but when I got to the deli, the clerk said they’d have to fry some more. I didn’t want to wait, so I rounded up a boneless ham, potato salad, baked beans, green salad, rolls, and two pies.
The sun was going down when I pulled into the driveway. The sunflowers–the Alaska Mammoths, American Giants, wild ones, and all the rest–cast long shadows in the cloudy sunset, every head bowed in sorrow.
I saw a fox yesterday morning! He (or she–I couldn’t tell) sauntered across the back patio, turned his head to look at me, and trotted across the neighbor’s lawn and under his carport. He was a youngster, hadn’t gained all of the red coat he’ll sport in a few months. But the tip of his tail was white.
We haven’t seen foxes on the property in years now. The first year we lived here on the ravine we counted sixteen, eight of those babies born to two mamas. We watched them play from the window in Mom and Dad’s den. Mom would call, “Dad says come over here. The foxes are out.”
He loved the foxes. He was miserable and depressed that first year here from the farm, and what saved him the next spring were the foxes and his garden.
One sunny day, one of the mothers brought all eight kits up from the ravine to the south lawn. These two vixens seemed to babysit for each other. One of the kits aggravated this mother-in-charge so much that she finally smacked him into a somersault. He didn’t seem to be hurt, but he did stop jumping all over her. Dad laughed. “I guess she straightened him out!” Our six-year-old grandson said, “They look like little grey dogs!”
Too soon, the foxes grew into young red dogs who scampered around the back of the property and watched our every move. Very often, we’d see little heads pop up from the ravine to check us out when our own grandkits rolled a ball or staged races in the back yard. They kept Dad company from a short distance while he worked in the garden. Sometimes we’d hear him talking to them and they seemed to listen. At night, when driving in to the garage, shiny eyes appeared in precise formation along the bank.
And then they were gone.
At the time, I wondered if they left because Dad cleaned out too much of their cover from the ravine. Clearing the banks was his favorite thing to do next to growing his huge vegetable garden. I also saw somewhere that if a fox is sick, the others move away from him. Then I read some good wildlife research that said foxes only live communally when raising young. When the kits are ready to hunt alone, the skulk breaks up and each one goes his separate way. That made more sense.
Dad asked about them several times a week. “Have you seen any of the foxes?”
We did see two scraggly yearlings and researched treatment for sarcoptic mange in red foxes. On a trip to the co-op, I purchased injectible Ivermectin and began to lace bait. This is not a simple thing to do as the medication kills the mange mites but does not kill the eggs. So the Ivermectin has to be given consistently over a long period of time.
One of the two seemed to improve and the end of the second year, the only fox we saw was a very sick one not long for this world.
I told Dad, “Maybe they’ll come back and raise another family.”
I’m hoping the one I saw yesterday homesteads somewhere in the ravine.
Tuesday, November 19, was the first-year anniversary of Dad’s passing. I thought about it every day during the prior week, but it did not cross my mind until afternoon of the actual day, while driving to an appointment for cortisone injections in my knees.
I remembered taking Dad to the orthopedist at St. Thomas to look at his knees. I knew there would be no surgery, but Dad wanted to ask for replacements for his deteriorating joints. I even had the nurse put a sticky note reminder on Dad’s chart. “Dr. Shell, please note that Dad (Mr. Blair) has scleroderma.”
Dr. Shell is a loving doctor. He never mentioned the scleroderma but said, “Ernie, we don’t want to do any surgery, because I think it would just be too hard on you.”
Dad answered, “You’re the doctor,” and agreed to the cortisone shots. After a couple days, Dad said they didn’t help at all.
I was early for my appointment so I pulled in a shady parking lot off Woodmont Avenue close to the hospital.
“So what do I feel?” I asked myself. If someone had asked, “HOW do you feel?” the answer would have been “Okay” or “Fine, thank you, and you?” But what I really felt was a hard ball of emptiness in my middle, an insistent necessity to remember, and a full-body strangeness I could not identify. Perhaps it was just a self-protective disconnect.
I’ve tried to do what Dad asked. We moved my writing place from The Cellar to Dad’s study, not a small job. My new place is now labeled The Study. I’ve made it through all of the books, sorting boxes into Sell, ThriftSmart, Give-to ____, and Keep. A bookseller carted off 500. I’ve browsed through fifty-plus years of well-filed sermons, pulling out those with special meaning. A dear friend who teaches a men’s group wants the rest. We’re giving him the file cabinets, too. He’ll need to bring his big truck.
After a few minutes, I entered traffic to St. Thomas and parked three levels down in the basement. It’s the Heart section. The other parking levels are Star and Clover. I always park in the Heart section so I’m sure to remember where I parked.
I was still early but the nurse came to get me right away, deposited me in a room, and asked if I needed shorts or could I pull my skinny pants legs above my knees. I took the navy blue disposable shorts and laughed out loud when I pulled them on and climbed on the stool to the exam table.
I was overcome with grief so suddenly. In the room alone, I remembered the three weeks of absolutely mania in this hospital. On the third day, Dad turned combative and kicked an ultra-sound technician. He had to be restrained. He disowned me for allowing such treatment. I remembered trying to get him to eat. All he wanted was either a brownie or chocolate cake. Doctors and nurses alike brought him chocolate somethings. He finished none of it except for an entire brownie one day that a nurse brought from home. I remembered how he popped his heart monitor sensors as soon as the nurse who had reconnected them left the room. He took his clothes off and scooted down the bed several times a day. He begged me to give him “a shot to end all this.”
There was so much craziness managed as best they could by the well-trained, caring staff. I was so hopeful that my father would get out of this world soon, but it took a while.
Jonathan, the Physician Assistant, is talkative. He always has something topical to relate the moment he walks into the room. He shook my hand and patted my shoulder.
“How are you today? I mean, really.”
I started to cry. “I’m sorry,” I said. “Today is the first anniversary of my dad’s passing.”
He patted my shoulder some more. “Ah, that’s rough. Go ahead and cry. There’s nobody here but me and you.” He handed me a box of tissues.
“This is the same room where Dr. Shell saw Dad.” I explained that just being in the hospital triggered my emotion. He said he could understand, especially, you know, being this same room. Then he told me about his father’s passing. I think he said it was three years ago and that he still remembers. He said he feels something on the anniversary date but he doesn’t weep. His father was wracked with dementia for almost three years.
I said I was grateful that Dad’s three years prior to his death weren’t like that. I said three weeks was plenty. Jonathan said his dad wasn’t mean or combative and that three weeks of that would be plenty for anybody.
I noticed I had stopped crying. Jonathan said, “Well, should we get going on these injections?”
I thanked Jonathan when he left the room. I hope he knew that I was grateful for much more than the medication.
I thought about keeping my paper shorts. That made me laugh and I tossed them into the trash, left for check-out, and scheduled another appointment in February.
For some reason, I got off the elevator at the Clover level, two floors up from where I parked the van. When the elevator door closed, I started crying.
I plopped my purse on a bench in the hallway and sat beside it. A woman came by and asked, “Are you alright?”
“Yes, I’m okay. Thanks for asking.”
Then a woman pushing an old man in a wheelchair stopped beside the bench. “Honey, is there anything I can do for you?”
“No. Is that your dad?”
He grinned and answered for her. “Yes, I am. She has to do so much for me she probably wishes I wasn’t.”
She just shook her head and smiled.
“My father died a year ago today,” I said.
“Oh, dahlin’, you just cry all you want. Do you have a Kleenex in that big old bag?”
“I do.” I pulled out tissues and wiped my eyes.
The woman bent over and hugged me. She smelled of musk and vanilla.
“Okay, you gonna be okay, fine even. Now we got to get on up to the sixth floor.”
I thanked her and she said she knew I’d do the same for her.
When I got to the van, I remembered I needed to pick up prescriptions at the pharmacy. I re-applied mascara, eyebrow pencil, and tinted lip balm. I decided I looked fairly presentable.
I still feel the unnameable strangeness. Maybe it’s grief, or stress, or a bit of depression, I don’t know. No need to try to get rid of it but just live into it, as a pastor friend says I must.
I feel grateful for those people who “live into” my grief and comfort me.
My father’s spirit wafts over and through The Compound, this odd old place where we live, the house, grounds, and ravine. His presence permeates The Study. A chickadee hops around on the Rose’o’Sharon bush outside the window. Squirrels bury walnuts in the spot where the foxes played. This room is peace. My mind is quiet.
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?”
When I was in my first year of college at San Jose State, three little brothers came to live with my parents in Montana. One of those little boys, Jimmy Lee Wong, died yesterday mid-day.
Jimmy Lee Wong was the oldest of the three, eleven months older than Jerry Lee, who was eleven months older than Johnny Lee. Two of the boys were mentally challenged as was their mother. Their father, Lee Wong, was very old and had died only a couple of months before. The boys had already been in three foster homes. Lee Wong was Chinese, thirty-five years older than Lucille Deserley of the Pembina Band of Chippewa under the leadership of Chief Thomas Little Shell. Lucille, a beautiful young woman in the one photo I’ve seen, died in childbirth when the boys were just toddlers.
It was a couple of days before my Christmas break when Dad drove the boys from the Social Services office in Great Falls to our home in Lewistown. When I arrived home from a long drive home from the Billings airport, Mom called them from their basement “suite.” They bounded up the stairs whispering to each other, hands over mouths, and lined up in the kitchen. I guessed which name went with which boy. What I remember most is their eyes. Against their copper/olive skin, their eyes were big, round, and almost black.
Everything the boys brought with them, all their worldly goods, the entirety of their belongings, fit in two cardboard boxes and one Chinese trunk. The trunk was almost empty except for an envelope of ten pictures, a couple of books, and a ginger jar they gave to Mom. The boxes contained a few pieces of clothing each and some old pots and pans. No coats. It was December in Montana and there were no coats.
Mom issued a “please help” to the ladies of the church. Those women blessed us and gathered good coats, jeans, shirts, and shoes. Mom sent me on a run to the five and dime (Woolworth’s, I think) for underwear. When the manager saw my pile of whitey tidies, tee shirts, and insulated pieces, he asked me who on earth I was shopping for. When I told him, he sighed and said, “I think we can afford a donation here.”
Those three didn’t talk much at first. I coaxed them, and then they turned loose. Well, Jerry and Johnny became quite the conversationalists; Jimmy, not so much. For all the years the Wongs were in the Blair home, Jimmy’s main communication consisted of “Good, Mom,” which he said after every meal, every snack, and “Mom, Mom, somebody farted.” Those two statements are etched into our family’s culture. We still quote Jimmy.
The years were good–and bad–to the Wong boys. Jerry and Johnny wound up in Tennessee when Mom and Dad moved back home. In his late teens, Jimmy developed schizophrenia in addition to his other challenges, and since the boys were unadoptable and wards of the State of Montana, he was moved by the State of California to Billings. He has been under the supervision of a caseworker as part of what we used to call sheltered workshops. It was a lucky move for Jimmy. He thrived there, always had some kind of job, and was eventually allowed his own apartment where he was found in the floor yesterday.
For the past several years, Jimmy came to Tennessee for Thanksgiving or Christmas. We always bought him DVD’s to add to his immense movie collection. As an older adult, all of the words he never said when he was a kid came out, constantly and with frequent repetition. He laughed loud–at anything and everything. He was excitable when talking about problems he may have had on his job or with some other member of the center. Almost every year, he wound up in the ER with an asthma attack.
The word from his caseworker is he died of a rupture in his esophagus where it meets the stomach, caused by Barrett’s Esophagus Disease and the cancer that followed. We had never heard that he had the disease nor the cancer. We just knew he had a lot of reflux issues, asthma, and heart problems.
He was visiting a friend in his apartment building yesterday morning and didn’t stay long. The friend said he’d make some coffee. Jimmy didn’t want coffee. He said he just wanted to go home. It wasn’t long until his best friend George went to check on him and found him in the floor. He was already gone.
Last night, after talking with Jerry several times, I emailed a scanned copy of written permission to the funeral home in Billings to perform the cremation. I explained that I have no legal right to do it, and that I was doing it at Jerry’s request. The woman said, “That’s okay, we just need a signature from a family member.” I didn’t offer anything else.
Jimmy Wong, you came to this earth for hard times, but it seems you finished well–with friends and family and helpers who loved you. In your voice, I’m saying, “Good Jimmy.”
I’ve seen it, a kind of numbness that sets in with a loss. A love that is irreplaceable, someone who was the last ounce of family glue, or the always-there funny-but-deep friend—any one of them creates an uncharted hole for us to sink into, scale the walls, clean up, and fill in. Affirming the good psychological work by Kubler-Ross and private counselors (and despite the efforts of grief groups and the prayers of the faithful), the loss really becomes about the one left behind. The numbness—what to do with the numbness?
Sara Walker died on August 28. Sara Walker, Camden and Scott’s mom, Brian’s wife, Dinah and Michael’s sister. She and Brian were friends of my son John and his wife Vicky. Brian was one of John’s best buds in high school, and Camden and Scott enjoyed play dates with my grandbabies, Jameson and Carly. Sara was Dave’s physical therapist after his shoulder surgery a few years ago and a “rock” to her colleagues at Star Physical Therapy in Brentwood.
A baby girl, Camden and Scott’s sister Anna was stillborn in December, 2010. In early 2011 Sara was diagnosed with Stage IV colon cancer. Doctors did not believe the two events were connected, still don’t. Through this last year and several months, Sara waged a valiant fight against this monstrous destroyer. She exhausted every clinical trial available.
Sara chose to post updates on the Caring Bridge website and she consistently proclaimed that “either way, I win”. She said if she won this battle, she would get to raise her boys and be a wife to Brian; if she lost, she won the final victory and would go home to Heaven where she would hold Anna in her arms and praise God forever.
As of a few minutes ago, Sara’s Caring Bridge site was visited 697,665 times since she began to tell her story. I wonder if that is a record in Caring Bridge history.
I don’t think I ever really thought we’d lose Sara.
Just a few weeks ago, Dave’s friend John Walker died suddenly of a heart attack. John Walker, international banker, father of Scott, husband of Shelley. The name Walker is coincidental. So is the son’s name, Scott. As far as I know, the two Walker families did not know each other.
A close friend said John had recently been diagnosed with a heart problem and was waiting for a second opinion. He was the last person you would ever expect to have a serious health issue. He did all the right things: ate right, played tennis two or three times a week. He was always laughing and joking. With all his exuberance, John seemed to live a low-stress life. Who would have ever thought…
I dreamed of John a few nights ago. He was laughing that big, full laugh and shaking hands and bouncing around the room at the Cross Corner, his sports bar after-work stop where a Celebration of Life packed the place on that Thursday night in July.
At 2:00 p.m. the day before Sara died, I rounded a curve on John Bragg Highway, the place where I start slowing down to turn off the busy four-lane onto the country road that takes me to my weekly meeting with the writing group. It’s a bad spot with no turn lane, just over a little hill, and you have to turn from the faster left lane while doing everything possible to warn the drivers behind you to slow down or pull around.
The minute I crested that rise, I felt the rush of that hormone that floods us when we’re scared. That release of adrenalin occurred almost simultaneously with a violent collision of what turned out to be an SUV and a motorcycle just where I intended to turn. Twenty-foot flames shot into the air as both vehicles caught on fire. My leg shook so hard that I could not drive. I managed to pull back into the right lane to roll onto the highway’s shoulder. Four fellow drivers drove off the road, too, some of them easing to a stop, some skidding and screeching at the site. Car doors flung open and strangers became neighbors before the emergency vehicles arrived.
I sat watching the fire. The ambulance was there but there was nothing to be done by the paramedics but watch. My friend, the host of the writing group, called to ask where I was since she had expected me earlier. She jumped on her scooter to ride down to the intersection while I took the back way to her house. I met the Woodbury Volunteer Fire Department truck not too many minutes before I met her at the end of her lane. Or maybe it was the Readyville Volunteer Fire Department.
When we sat down at the breakfast bar in the kitchen and pulled out the laptops, we learned of the fatality in the collision. Several hours later, the Courier said that a twenty-eight year old man from Woodbury, the driver of the motorcycle, died when he hit the SUV turning off John Bragg Highway. The bike was traveling at high speed from the opposite direction that I drove and it lodged under the bumper of the other vehicle. Both caught immediate fire.
The man’s name was Ray Knox. I didn’t know him but the news said they called him Ray-Ray. The only news source I could find that reported the wreck was the Cannon Courier, the small town Woodbury, Tennessee newspaper. The obituary said he left a son and three daughters, his mother and grandmother, sisters, and a “host of aunts, uncles, cousins and friends.”
These were untimely, unpredictable deaths, all of them. I have not experienced a death of someone so close to me, let alone a sudden one, so I recognize my inadequate empathy. The pit I feel for Sara’s passing is a tiny pin-prick indention compared to that of Brian and the others but, even so, there is this numbness. I can’t imagine who could ever take John’s place or who would feel so adventuresome as to try. There’s a hole. And then there is Ray-Ray, someone I do not know but someone who left a host of mourners and multiple stages of simultaneous grief, people who will never, ever, forget that Monday afternoon when they got the call.
Vice President Joe Biden spoke at Ground Zero on the anniversary of the 9/11 attacks. This is a man who knows the utter shock of a sudden loss, having lost his wife and a baby daughter in a car crash in 1972. His two toddler boys almost died. Biden’s empathy allowed him to speak a personal truth. “…no matter how many anniversaries you experience, for at least an instant, the terror of that moment returns; the lingering echo of that phone call; that sense of total disbelief that envelops you, where you feel like you’re being sucked into a black hole in the middle of your chest.”
I’ve tried to write this story since way before 9/11. I couldn’t find a way to close. Now it comes to me that the reason I could not find an ending is that there really isn’t one.
My sorrow for Sarah, John, and Ray-Ray seems like grief-by-association, a feeling that is both instant and lingering, close and yet far away, vague but piercing. I see that, because we have this marvelous capacity for life and love, we are all on the trajectory of losing or being lost. We wept this year for Mary, Dave’s mother. She was ninety-two but we wanted more time with her; we miss her. My mother and father, who are so vibrant, have the predictable battles with the illnesses of aging. I’ve had over sixty years with them, but I don’t see any trade-off in the works of their long lives for less grief. I try not to think that Dave might someday leave me, or that I might die leaving him to deal with the same grief that I fear for myself.
So when I acknowledge that I will lose, I keep coming back to “What will I do with the hole? How will I treat the numbness?”
Tuesday night, author Anne Lamott spoke at Tennessee Tech University in Cookeville. Anne Lamott seems like an old friend, one with wisdom I’ve relied upon, humor I’ve adopted, and faith that makes me wonder. My friend Leslie, an equal fan of Anne’s, picked me up for the hour-and-a-half ride. Since Leslie lives in Huntsville now, we catch up in spurts when she comes to Nashville. We talked all the way to Cookeville, and all the way back. We discussed health issues, aging parents, and loss. We didn’t talk about the “fear” of loss, but it was on my mind.
While we sat in the second row of the big auditorium and Anne told a poignant story about a recent date-gone-badly, I remembered something she wrote about dying, about losing somebody who is your world.
“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.”
I pray that all the ones who loved Sara and John and Ray-Ray learn to dance. I hope I dance. I hope you dance.