Tuesday, September 24, 2013

My Inspiration: Martha Stewart. And Yoda

I'm not sure how to describe the last three weeks.

I want to be eloquent and walk you through a chronological process of grief (denial, arguing, bargaining, depression, acceptance). I wish I could write "Ta da! In the course of one essay, Emily's back on her feet and feelin' fine!"

It's been much messier than that. I'm still somewhere in the middle of a tangled mass of emotions, memories, wishes, and gratitude. My emotional landscape looks like Dagobah: swampy, dark, uninviting.

I'm struggling. I'm self medicating with food and I haven't run in weeks.

My home has become a shrine and it's painful. All the photos and artwork from Mom's memorial service are laying around the house, waiting for a place to belong. We moved all the funeral flowers into our garage so the cat doesn't eat them. Wilting bouquets and the sickly sweet scent of lilies greet me every time I go downstairs. I had a collection of Mom's coats hanging in our entryway, waiting to be delivered to the consignment store. I stuffed them all in a bag and moved them out of sight. Songs pop into my head that make me think of her, and a melancholy cloud settles on my psyche.

People keep saying "Let's get together! Let's grab coffee!" and I smile and nod and then hide. I'm tired of being transparent, because I don't feel transcendent anymore. Ironically, I'm also annoyed when people don't ask how I'm doing. The glow of love and support we received the week Mom died has faded. Frustratingly enough, I'm still the headachey, anxious, cranky person I was before. I'm afraid of finality, of dying, of not saying the things I really mean to say to the people who mean the most to me. I worry about losing other family members and visualize tragic accidents. I feel pessimistic, discouraged, and drained.

But I do know this: My path through grief will be one of creativity. It is already littered with fabric scraps, paper clippings, yarn fuzz, and tacky glue. The aching in my heart is only eased by a frenzy of art projects and tactile keepsakes. Maybe they are gifts to offer at the altar of grief. Maybe I'm leaving knickknacks for people to remember me by after I die. Maybe I can sense Mom is close when I'm surrounded by art supplies.

I'll show you what I've been working on soon.

Meanwhile, I'm reminding myself that life goes on, even in swamps. There will still be stories to tell and encounters to report. I'll continue to share them here.

Monday, September 9, 2013

The Final Goodbye - Guest Post by Dad

Please welcome guest blogger Erik Johnson, my dad. He offered to share his reflections the morning of our memorial service for Mom, but warned me that it's not a "feel good, inspirational piece." Authenticity matters more to me than chirpy "everything-happens-for-a-reason" sentiments, and Dad doesn't pull any punches. His writing is raw and sincere. I love this post because it speaks of his devotion as a husband and love for my mom. I'm proud to share it with you.
Thursday, September 05, 2013, 7:00 AM

A little over thirty-six years ago I woke up in bed alone like I did today. I puttered around the house alone like I did today. Got dressed and got in my car alone like I will do in four hours. And thirty-six years ago I drove to a restaurant which I will not do today.

Thirty-six years ago with much excitement I told the waitress and some guys sitting at the counter in that restaurant, “I’m getting married today!” I was eager for others to share my joy. I was happy beyond belief and could not keep my happiness a secret.

Turns out that happiness was understated and too restrained. The marriage I was about to enter on August 23, 1977, would become the best marriage on the planet. Vicki and I somehow put together our lives in a such way that it resulted in nearly non-stop bliss. Even allowing for a touch of exaggeration in my overly optimistic, selective, and hyperbolic memory, few would deny, Vicki was the best wife ever.

In four hours I will drive alone to church to attend Vicki’s funeral. She died four days ago. I will not be stopping at any restaurants. I will not be telling any waitresses that I’m bursting with joy. And I will not be looking forward to the day’s events like I did in August of ‘77.

Like our wedding day, I have little responsibilities. Fewer, in fact. My only task back then was to say “I do” and kiss the bride. Today all I have to do is show up. Thirty-six years ago Vicki and her team organized our wedding day in such a way that all she had to do was show up, look beautiful, say “I do,” and kiss the groom. Today a team of helpers and friends, including our five grown children, have organized her funeral in such a way that all Vicki has to do is let us honor her memory. 

I looked forward to our wedding day for eight long months, the time between getting engaged and getting married. I’ve dreaded this day for six long years, the time between getting the diagnosis of Alzheimer’s disease and attending her funeral. Unlike a marriage that begins on a definite date, I never knew when Vicki would take her last breath. We’ve had many close calls and I’ve said goodbye to her on many panicky occasions. As this wicked disease gradually destroyed her mind I experienced many mini faux funerals. She not only kept on breathing after each near death experience, she kept on smiling, humming, singing joyful noises, and jabbering her word salad. She handled this disease better than me.

When her organs started shutting down nine days ago I started a bedside vigil. I loved visiting her during her two years in the nursing home because I loved her. But as her breathing became more labored, her eyes became less focused, and her morphine injections increased I had to fight the urge to flee the horror of saying goodbye for the last time. I somehow overcame my gag reflex, keeping a garbage can close by in case my nausea turned to vomiting. I was determined to resist my death avoidance impulse.

I held her hand on our wedding day thirty-six years ago and during this disease told her over and over, “I will hold your hand till death do us part.” During our courtship she once told me in a poetic and romantic way, “I never knew what hands were for until I held yours in mine.”

When I had to run home to feed Zelda the cat I told our kitty, “If Vicki passes away while I’m here feeding you I will never forgive you.”

I spent Vicki’s last two nights in her room. My sleep was fitful, not only because nurses came in every four hours, not only because her oxygen machine made a racket, and not only because I set my phone alarm to wake me every ninety minutes to tell her I loved her and change the washcloth on her fevered brow, but because I loved hearing her snore. We haven’t shared a bedroom in over five years and hearing again the sound which at one time drove me crazy was now music to my ears. I wanted to cling to every last vestige of life she had.

On Sunday morning I left her room so aids and nurses could attend to her needs. I sat for a short while with a friend who brought me coffee and then returned alone to Vicki’s room. Her breathing was still labored only now intermittent. The space between breaths lengthened. I pulled my chair up close, raised her bed so she was at eye level. I grasped her bird-like hand and told her, “I never knew what hands were for until I held yours in mine.”

Her breathing became less frequent. Her feet were cold. I squeezed her hand tight. She took a breath. I told her for the millionth time, “I love you.” She took a breath. I told her for the millionth time how much her children love her. She took a breath. I told her, “I’ll be good.” She took a breath. I told her with deep sobs how much I’ve missed her for six years and how much I will miss her. She took a breath.

I looked to heaven and said, “Lord Jesus, into your hands I commit her spirit.”

She never took another breath.

Wednesday, September 4, 2013

Thank you, Roxy

A favorite fellow resident in Mom's nursing home was Roxy. Back in January 2012, I posted a photo of Mom holding her:
Always a pet lover, Mom enjoyed seeing this kitty in the halls when she was still able to take walks.
Roxy didn't forget.

She made several appearance in Mom's room in the last week. When we all visited on Wednesday, Roxy helped herself to the spare bed in Mom's room. She sprawled out and napped as we visited. Hubbins patted her generous tummy and whispered to me, "I think she gets extra treats."
What a great place for a cat to live! The temperature is always warm, there are eager folks around every corner to scratch her belly and under her chin, crocheted afghans and quilts a-plenty to curl up on, and judging by Roxy's size, no shortage of food.

On Sunday, after Mom passed away and we gathered once again at her bedside, Roxy was back.
For the first time in two years, Roxy jumped up on Mom's bed.  She stretched out across the width of the mattress at Mom's feet. She purred and snoozed for hours. She didn't get down until it was time for Mom to leave the room.

It was a special comfort.

Rest in Peace

My dear Mom passed away September 1st, a little after 10:00. It was a beautiful Sunday morning.

On Friday, I spent six wonderful, draining, emotional hours with Mom and Dad in the nursing home. Visitors came and went as Mom slept.
  • The primary Hospice nurse came in the room to answer questions. We asked for signs to look for that she might need more pain killer. She told us candidly that she was amazed Mom had made it through the night (which surprised me, since all the health care staff had been reluctant to say anything indicating a timeline). She cried as she told me and Dad how special Mom was, and how rare it was to get to meet someone like her. She said several times she could tell Mom had Joy, and Loved Life. We nodded in agreement and smiled (I thought, "Oh, if you only knew!"). When she left the room I said to dad with mock irritation, "What?! So Mom is 'head of the class' in her nursing home too? She can't go anywhere without excelling!"

  • A former in-home caregiver, Cheryl, came and sang to Mom (In the Garden, Swing Low Sweet Chariot, Sweet By and By). She had the boldest faith of any of us, and as she wiped Moms face, told her firmly, "It's almost time to see Jesus!" We had all been too shy and doubtful to say something so absolute, wondering silently to ourselves if such a place as heaven could really exist, and whether we will have any faith left to speak of without Mom's example. But of course, coming from a Bible-believing sister, these were words of comfort for Mom. 

  • My mother-in-law came and sat with us for a few hours. She used to work in the very same nursing home, in the special care unit for Alzheimer's patients. She said she loved working there, and for years afterward, whenever she saw a grey-haired person in a wheelchair, her heart would flutter. She told us how strong mom looked, and how beautiful. It was so comforting to have her there. 

  • Mom's room on Friday was like the eye of a storm: serene and powerful. Outside her door was chaos and confusion (figuratively and literally), but being in her presence, on the very border between life and death, nothing else mattered. We all gravitated toward the head of her bed, cooling her face with a washcloth, holding her hand, stroking her arm as it lay on top of the sheet, speaking our love and concern (my dad asked multiple times, "How are you doing, Sweetie?" as calmly and naturally as if she was just under the weather with a cold). She was the epicenter of our concern, and all the ripples of influence and importance originated with her. 

  • There was one close call Friday evening when Dad and I were sure she was within an hour or less of her last breath. All the tears and panic resurfaced and the losses of the last six years surged through our memories with a sense of urgency. This is it. Dad phoned all my siblings to update them and give them another chance to say goodbye if they wanted. I asked him if he wanted some time alone with her. When he said yes I couldn't bring myself to leave the room right away, and stood at the edge of the small sink in her room to wipe my eyes and blow my nose. From the mirror above the sink, I could see mom and dad's faces. It was the same scene I'd observed all evening, but the reflected image seemed surreal. Mom's face was still relaxed, mouth open, eyes closed. But seeing her reflection, her face directed toward Dad's, I was struck by the look of love on her face. Her head was titled as if she were listening intently, commiserating, empathizing (one of her greatest strengths). Dad wept. I forced myself to leave the room and allow them this one last intimacy. 

  • I was only in the lobby for a minute or two before Dad texted me, Come back, Emily. "It must really be the end," I thought, and walked as fast as I could back down the hall to her room. My next thought was, "Either this is the bitter end, or there's been a flash of lightening and a miracle, and Mom will be standing full-bodied and healthy at Dad's side." Neither scenario was true. She was unchanged; dad was wiping his face with Kleenex. 
I left the nursing home around 8:30pm, went home and slept like a rock. Dad spent a quiet Saturday alone with Mom, which he said was very peaceful. Olivia and I spent a little time together, relaxing as much as we could in the relative calm.

Sunday morning, I got a slow start to the day and planned on bringing Dad lunch at the nursing home. After showering, I went outside to my little garden and picked flowers for Mom: sunflowers, roses, and zinnias. At 10:20, Dad called. I could tell from his tear-filled voice. He simply said, "Hi, Emily. It's over." I said I loved him and that I'd be right there.

I felt relief. Her suffering was over. The haze of morphine and dementia was also over. I got in my car and sobbed, "Thank you," overwhelmed with gratitude for Mom and that Dad was with her, and that the waiting was over. I got to the nursing home in less than 10 minutes (even though every other driver on the road seemed determined to go 20 mph). In the hall, a nurse made eye contact and said "Your Dad is in the room." I smiled. I knew. He wouldn't be anywhere else. I came through the door and hugged him hard.

The day before, I didn't think Mom could look any less like herself. She had become so frail, so brittle-looking, so distant even while sleeping. But there was no comparison Sunday morning. The nurses had repositioned her and there were no wrinkles in her bedding. Her skin was whiter. She was gone. I stroked her hair and kissed her still-warm forehead. The struggle was over. The uncertainty about how much time we had left was gone. The ache was deep but so was the reassurance that I had said to Mom everything I needed to and supported Dad in the best way I knew how. It was enough, and it was good.

Dad told me that a friend of his brought him coffee an hour or so earlier, and they sat in the courtyard outside the dining hall. After half an hour or so, Dad said he wanted to go back and visit Mom again and his friend left. Dad noticed right away that Mom's breathing was different; the pauses were longer between breaths. He checked her feet, they were cool and her legs were mottled. He cried with her and said his goodbyes again. He held her hand and prayed, "Lord, into your hands I commit her spirit." And she didn't breathe again. It was finished.

Thursday morning, September 5th, we'll honor Mom with a memorial service and celebration of her life. I'm looking forward to being surrounded by people who love her. The service details have been in place since the end of April, so there's been very little planning or decision making necessary (thank goodness). We've collected photos and Mom's pen and ink artwork and calligraphy to display. All five kids are writing a letter to her in place of a eulogy.

It's going to be a day full of meaning and love, just like her life.