That Christmas, I fantasized that I could discover a gift that would stop the destruction of ALS. Or that I could give Lance a beautifully wrapped present that would remove his pain. Historically, I could find, make, or schedule an experience to surprise and delight my husband. That holiday would be like none other.
How can one truly enjoy the holidays when each day is an emotional and physical challenge? I felt like a cracked pane of glass—with just a tiny bit of pressure, I’d shatter. But it was Christmas, and we traditionally put up a tree and outside lights, decorated the house, cooking elaborate meals, and enjoyed spending time with family and friends. So, I pretended that nothing had changed; this was just another Christmas, but it wasn’t.
I was determined to make that season as festive as previous years. In the past, we’d searched to find the perfect fir tree and took pains to decorate it and the house. Setting the tree in the stand was always an adventure—Lance splayed out on the floor to adjust the knobs in the tree stand while I held the tree.
“Is it straight?” he said.
I can barely see his legs sticking out from under the tree. My face is smashed against a large branch. My arm isn’t long enough to hold the tree and see much of anything.
“I can’t tell from here. All I can see is your legs. I need to be further away. I’m going to take a few steps back.”
“Don’t let go of the tree!”
“Well, goofball, tighten the screws so I can step back.”
My fingers are sticky from tree sap, and the grand fir’s pungent scent has overwhelmed my nose.
“Who are you calling a goofball?”
“You! Dorkman,” I laughed.
When we finally got the tree straight and secured, Lance hauled out the boxes and containers of outdoor and indoor lights, tree and house decorations, the Santa collection, holiday towels, dishes, and more. Each year the number of bins grew as I found new treasures at Christmas bazaars and after Xmas sales.
“Don’t you think we have enough ornaments?” he asked every year.
“You can never have too many ornaments or decorations,” I say while opening a box of red and silver mercury glass garlands.
“Besides, something always breaks. So I’m just trying to replace what’ll get destroyed by the critters or you.”
Sipping champagne while decorating, we’d make up stories about the ornaments—the more ridiculous, the better. Lance could get me laughing so hard I would snort, which was his goal.
“Do you know where this ornament was made?” he asked. He holds up a glass orb encasing a silver bell and a snowflake. It looks ethereal, and I hear a slight tinkle.
“No”
“Well, I remember that we bought it at that village market in Vic.”
“That ornament didn’t come from Spain,” I said.
“Oh yes, it did. I clearly remember a tiny man with a large nose and a scraggly beard in a booth with a green cover. He only spoke Catalan and told me that his ornaments were made by fairies that lived in the forest. He explained the story of each one and described the fairy that created it; according to the man, the fairy that made this one had long black hair and blue eyes the color of the sea.”
Lance smiles at me, and I can see the small boy he once was. His eyes sparkle like tinsel.
“Really,” I said
“Absolutely. He even told me the fairy’s name. It’s Oswena.”
“You are such a clown!”
We would never be able to do that again. Nor would we have a fir tree again; it was too much work for one person. Now our conversations were limited. I’d ask Lance questions, and he’d either nod or tap out a sentence on his iPad.
“Good morning, honey. Were you able to go back to sleep?”
I’d gotten out of bed four times to rearrange his pillows and administer more pain medication the night before. Each time I heard him through the baby monitor, I shot out of bed and down the stairs.
He nodded and smiled. I smothered his face in kisses, feeling the sandpaper scratch of his whiskers. The blinds were still closed, and the room was full of shadows. I turned on the overhead light to get him ready for the day.
“Do you need the mouth spray?” I asked
Lance’s mouth dried out, especially overnight, because he wasn’t producing enough saliva. I never realized before how important saliva is to comfort.
He nodded. I rolled over the turquoise cart on wheels. It contained all the things we needed—waterless body shampoo, adult diapers (in case the condom catheter slid off in the night), extra gauze pads and tape, scissors, numbing cream for his feet, Balmex for diaper rash, tissues, and his pain meds. All were easily accessible and in one place.
“Do you want a bed bath today?”
He shook his head.
“What about a shave?”
Again, he shook his head.
Holding up clothing options, I asked: “Do you want to wear sweats or pajama pants? We aren’t going anywhere today, so you can hang out in pajamas if you want.”
Lance pointed to the pajamas.
“Red or black? If you want black, I’ll go get a different t-shirt, so you’ll still be stylin.”
I emptied the urine bag and made sure I didn’t dislodge the condom catheter while dressing Lance. Then, while I got him organized and transferred from the hospital bed to his wheelchair, our son Blair assembled the artificial tree, unbeknownst to me.
I walked into the kitchen to prepare Lance’s morning formula and meds, my slippers softly thwacking on the oak floor. Lance guided his motorized wheelchair behind me. I glanced into the family room and saw a six-foot forest green tree aglow with tiny white lights next to the stone fireplace.
Gasping in surprise at the tree’s beauty, tears erupted from my eyes. Blair, dressed in jeans and a University of Oregon sweatshirt, turned around when he heard us enter and grinned at me.
“Oh, Blair Bozo! It’s beautiful. Thank you.”
“Yeah, I thought I’d put it up while you got Dad dressed. Are these sad tears or happy tears?”
“A little of both,” I said
Throwing my arms around him, I buried my face in his shoulder, my tears and runny nose leaving a wet spot on his sweatshirt. He squeezed me in reply.
“Hey, could you feed your Dad so that I can take a shower? The formula’s on the counter, and there’s a new syringe next to it. You’ll need to crush his pills; they’re already in the mortar.”
“Sure. Where’s the gauze and tape?” He asked
“In the top right drawer of the sideboard. You good?”
“Yep.”
Traveling anywhere was stressful for both Lance and me. It took extra planning to get him ready and safely loaded into our converted van, his wheelchair locked in place. The van was a massive vehicle. It took a long time to accelerate and even more time to come to a stop. It was like steering a container ship.
Each time the side door opened, the ramp gliding out with a metallic scraping sound, the van slowly lowering itself, I remembered that Lance was helpless once he was strapped in place. I was anxious every time I drove it.
What if you can’t stop it in time? There aren’t any airbags that will protect Lance in his wheelchair. What if you miscalculate its size and sideswipe another car or the guard rail? What if one or two clamps fail and Lance’s wheelchair starts to shift? What if we get in an accident?
So often during those thirteen months (and one day) between Lance’s diagnosis and his death, I tried to prove to the world (and myself) that I could handle everything, manage everything, maintain my good humor, and create a safe and happy environment for Lance. Attending concerts, cooking elaborate meals, hosting guests, buying, wrapping, and delivering Christmas gifts were my attempts to pretend that my world wasn’t unraveling before me.
Christmas afternoon, I loaded Lance into the van while Steve and Belinda (Lance’s brother and sister-in-law) climbed onto the rear bench. Belinda’s feet dangled above the floor like a child in an overstuffed chair.
We were off to celebrate with the kids and grandkids. Blair and Jackie were hosting an open house. Members from both families gathered to share hearty soups and fresh loaves of bread. The wine and cocktails were abundant; the Christmas tree was colorfully lit; the house was full of lively conversations.
I don’t remember much of that evening other than I stuck close to Lance the entire time. I worried that he would need something, and it would go unnoticed. I just sat holding Lance’s hand and observing the activity around us.
Ever watchful, I noticed after two hours that Lance was tired. There was a gray shadow under his eyes. I said, “let’s go home.”
When he was safely in bed, his pillows arranged to reduce pressure on his hips and legs; I wrapped my arms around him, burying my face in his shoulder, inhaling his scent. He smelled a combination of the lavender body lotion I rubbed on him every morning and sweat.
“I love you, buddy. Merry Christmas. Will you be okay so I can take Steve and Belinda to their hotel? I should be gone about twenty minutes.”
He nodded his head and smiled. He looked drained; the bones of his face more prominent every day. I knew the celebration had been exhausting for him, but I think he knew it would be his last. I turned off the lights, closed the door, and herded Steve and Belinda into the car. Dropping them off at their hotel, I wished them a Merry Christmas and thanked them for coming to celebrate with us.
When I got home, I remembered that Zoey, our tiny seventeen-year-old black and white Papillion had diarrhea that morning, and her behind was a little stinky. So I decided to bathe her before I went up to bed. She was curled up in her basket in the kitchen, head buried in her tail. I put her in the utility tub and began to wet down her backside. ONE EYE HUNG OUT OF ITS SOCKET when I turned her head toward me. Suppressing a scream, I wrapped her in a couple of towels and called the emergency vet clinic.
“Hello, I just found my Papillion with one eye hanging out of its socket. Can I bring her in right away?”
“Of course, because it is after six, the doors are locked. Ring the bell when you get here, and we’ll let you in.”
What do I do about Lance? I can’t leave him here alone for an extended time, and I don’t know when I’ll get back. Why didn’t I check Zoey earlier? My God, when and how did this happen? How long has she been in pain? Call Blair and Jackie, see who can come over immediately.
Blair didn’t answer his cell, so I called Jackie.
“Jackie, I have to take Zoey to the emergency vet. Lance is in bed. Can you come over right away?”
“Of course. I’ll grab my coat and be right over.”
“Okay, I won’t wait for you. I don’t know when I’ll be back,” I said
“Don’t worry. I’ll spend the night. Go!”
I wrapped another towel around Zoey and placed her in my lap, plugging the address to the Emergency Clinic into my GPS.
Jesus Carol, how could you have not seen that? What happened? Oh, my God, Zoey, I’m so sorry! Please hang on. Oh God, Zoey. My poor little girl.
It was ten-thirty on Christmas night, and the streets were devoid of traffic. I drove as fast as I dared with Zoey in my lap. Ringing the bell, I paced, waiting for the staff to answer the door. I could barely speak; I was so distraught. I held Zoey in my arms while filling out the paperwork and approving treatment. Within minutes, a vet tech led me to an exam room and gently took Zoey out of my arms.
“I’m going to take her to Dr. Jackson for an exam. Then the doctor will come and talk with you about treatment,” said the Vet Tech.
I nodded and watched her turn and walk down the hall, her tennis shoes squeaking on the tile floor. The door to the exam room slowly closed behind her. There were a couple of chairs along the wall. A sink and brown cabinets lined the other wall. I don’t know how long I sat there. My brain was on fire with anxiety, guilt, and recriminations.
What could have happened? Maybe she bumped into Monte, and he snapped at her. But I didn’t see any blood, just her eyeball hanging out. Oh, God! I don’t know how much more I can take!
The Vet walked in after a discrete knock on the door. She was about my height with strawberry blonde hair in a ponytail and wearing green scrubs. She looked about 30 years old. She smiled one of those smiles that expressed sadness.
“Hello. I’m Doctor Jackson.”
She reached out and shook my hand.
“I’ve given Zoey some pain medication. Typically, we can do surgery in cases like this and place the eye back in the socket. However, I’m not sure that is a good idea given Zoey’s age. She’s very frail.”
“Are you suggesting that I put her down?”
My eyes began to fill with tears again, and I began to sob loudly.
Dr. Jackson reached out and put her hand on my knee while grabbing a few tissues. When finally able to speak, I choked out:
“I’m sorry, it’s just that my husband was diagnosed with ALS earlier this year, and the disease is moving much more quickly than we were led to believe. I’m his primary caregiver. We’ve been married thirty-three years, half of my lifetime. Over the years, every time we’ve had to put down an animal, we’ve done it together and supported each other. Now I have to do this alone. This is just the beginning of having to do everything alone.”
“I’m so sorry about your husband. I can’t imagine what you are experiencing. Do you need some time to decide about Zoey?”
I shake my head.
The door closed with a soft click; I began to sob again. I felt as if I was being abandoned by everyone I loved. I don’t know how long it was before the doctor returned with Zoey, an iv needle in her right front leg. Her leg was so thin I could see the light through her skin.
“Be careful of her leg. You don’t want to pull out the needle. I’ll leave you alone,” said Dr. Jackson.
I held that tiny body and gently stroked her head, remembering how we both went gray simultaneously.
Zoey, I’m so sorry. I’m sorry I didn’t check on you right away. I don’t know how long you were in pain. I’m so, so sorry. I love you so much. You have given me so much love all these years. I don’t know what I’m going to do without you.
I don’t know how long I sat holding her. Eventually, I poked my head out the door.
“I’m ready,” I called out into the empty hall.
Dr. Jackson returned with two syringes on a tray.
“I’m going to give her something that will cause her to go to sleep, and then the final injection will allow her to pass away peacefully.”
I held that tiny body, tears running down my cheeks while I watched Dr. Jackson inject the medications. I continued petting Zoey’s head and silently telling her how much I loved her. Finally, the doctor pulled out her stethoscope and listened to her chest.
“She’s gone. You can take her home, or we can arrange to have her cremated and her ashes returned to you.”
“I’d like her to be cremated, please.”
She took Zoey from my arms.
Shortly thereafter, I was in the reception area, signing all the forms, and giving the receptionist my Visa card. I didn’t even try to read the documents; I just signed them.
The receptionist escorted me to the door, unlocked it, and held it open for me. I stumbled to my car and drove home. It was challenging to see the road through my tears.
The house was dark and silent when I got home. I walked into the kitchen, poured myself a couple of fingers of vodka, and sat at the old oak kitchen table staring into space.
I can’t believe what is happening to me, to us! What’s next? I know what’s next. I can’t think about that now.
Finally, I went to bed at about two o’clock.
I got up at my usual time, dressed, and went down to see if Lance was awake. I peeked in the glass door and saw his eyes were open, and he was staring at the ceiling. I opened the door quietly. It took me a couple of attempts before I could speak. My throat felt as swollen as my eyes. Finally, I reached out and held his hand, still warm from being under the covers.
“Hi, Honey. I’ve got some bad news. Last night after you were asleep, I found Zoey with an eye hanging out of the socket. I don’t know what happened. I rushed her to the emergency vet; the doctor said she wouldn’t survive the surgery given her age. I had to put her down.”
His face crumpled like a sinkhole, his mouth opened, and a primitive inhuman howl erupted from him. Tears streamed out the corners of his eyes. I began to cry again and leaned down to embrace him.
An Executive coach, Carol Putnam believes that coaching can help to launch people forward toward their goals while they gain new perspectives, and deeper self-awareness. She is straightforward and direct in her approach while incorporating creativity, spirit, and humor as she engages with clients. A believer in the power of expressive writing to heal old wounds, uncover possibilities, and facilitate creativity, Carol has completed extensive training in expressive writing and is certified to teach over twenty journaling techniques. She publishes a weekly email blog, called Thriving Thursday.
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