An Unexpected Journey

Dear Reader: My Mother’s death was not an “easy” one – not that any are, but don’t we all hope for one? I journaled little except for journal entries on “Caring Bridge” during the last three weeks of her life and I was too spent to write much after her death. Two years later, during a writer’s group, we were given a writing prompt “At the end of the journey . . .”  and I found myself writing about those hectic weeks.  I wrote a short first paragraph and a couple more. There it sat in my computer in my 2011 writings until I found it a couple months ago. I share it now with you in this space. I have learned I am ready when I am ready. 

At the end of the journey. . . I found myself present in ways I never knew possible. It wasn’t the journey that terrified me. It was the fear I would not surive.

Esther quilting a baby blanket for her first great granddaughter after four great grandsons. Quilting for her family was her love language.

Thanksgiving 2004: My seventy-nine-year-old mother is extremely ill and in the hospital with a new diagnosis – Congestive Heart Failure, a long-term effect of diabetes and high blood pressure. The family drives the 150 miles to be with her in the hospital the Friday after Thanksgiving. She had cardiac bypass surgery a few years ago. We’re not sure how long we’ll have her.

My mother does not know either. In true “get-things-organized-and-done” fashion, she tells Dad he should marry Ruth, a recently widowed friend. Dad doesn’t want to hear about it. He just wants mom well. Mom knows she is the wind beneath my dad’s wings. Dad is the visionary, often in public leadership positions. Mom quietly keeps his home and life’s small details organized and on-track. Who would find his keys, his wallet, and those little rolled-up pieces of paper full of thoughts, ideas and reminders he sticks in his shirt pocket.? Who would balance the checkbook?

She rallies this time and several more times over the next four years. Each time we think we are going to lose her. Always, always, she finds her way back.

Thanksgiving Eve 2008 unexpectedly finds her in the urgent care center once again, instead of driving to join the family gathered for a few days in Wisconsin. She tells me she cried as reality sank in that she would not be with her six great grandchildren.

The Monday after Thanksgiving, we wait with Dad to hear the results of an angiogram. “She probably just needs a stent,” I tell dad, trying to reassure him. Oh, who am I kidding? I am trying to reassure myself.

The cardiologist explains, “There is really nothing more we can do for her.” This is not the news we expected. Mom accepts the news without noticeable emotion. She is a quiet, private person. Feelings are not easily shared.

Dad suddenly begins walking around her room looking for an apron and ends up mumbling something to the darkness outside her fourth-story window. He never wears an apron. He doesn’t cook and certainly not today. He recovers, enough to realize something is wrong with him.

The MRI confirms he had a mini stroke. This explains the few other times we have noticed he has seemed confused, but quickly recovers. He spends the night in the hospital on one floor, with Mom on another.

He is still confused the next morning, asking me. “Did you know there was a young girl in here all night. She even went into the bathroom with me,” shaking his head in wonderment at what this world is coming to. “Did anyone know?” I do to my best to reassure him she was assigned to be there as a helper.

December 2008: Galen and I move in with them for the month of December as we adjust to this new crisis. Mom is now on continuous oxygen, a long hose following her wherever she goes. Dad continues to vacillate between clarity and confusion. One evening he tells us he was preparing for speaking at a camp coming up soon.

A delightful experience

Steak and Shake becomes our late-night getaway. We spend our anniversary at the mall, trying out Sleep Number beds, and eating at the “Smo-King Pit” –  best BBQ place we can ever remember. Eli’s Coffee Shop becomes my personal get away – a house turned coffee shop at the other end of the block from where I grew up. We spend Christmas Eve poring over our Christmas Ornament album, the one I made the beginning of the year. It’s the closest we can get to our own Christmas. Galen stays with them, giving me the gift of returning home for a couple of days to participate in the Annual Christmas program at our church, a highlight of my year.

By January, we leave them on their own, returning to visit often. Their friends check in and provide meals. Rt. I 55 south from Chicago to Morton becomes all too familiar.

February 2009:  In two short months, Mom enters hospice care. It’s clear to all of us; we are nearing the end of this journey. There is nowhere else to go. There will be no scenic routes, no side trips. There won’t be “oh­-she-did-it-again” stories, one of those “she-fought-back again” kind of tales. She remains at peace.

When she does talk about it, it’s mostly with dad.

He asks her one day “What will you miss.”

“Your kisses.”

May 2009:  We move them into a studio apartment five minutes away from us. Mom is still in hospice. Dad has back surgery. due to spinal sltsenosis which had made it almost impossible to walk. Despite her weakened condition, Mom insists on spending the entire day at the hospital, refusing to leave until she can see him, and know he is alright. Over the next weeks the care for both is overwhelming.

One afternoon, I walk out into the parking lot, raise my fist to heaven and “yell” to my brother, under my breath, “Gordon, what are you doing up there. You were supposed to be here to help me care for them as they grow older. Get down here right now.”

(I know he would have helped. Before he died, he had come to stay with them for a few days so we could get away on a much-needed pre-planned vacation with friends. Two months and twenty-seven days later he was gone.)

The determination that has brought Mom back to us time after time, makes this part of the journey difficult. She fights to maintain her independence and her dignity – major losses of aging (or terminal illness).

I watch her fumble as she sets up her many medications each week. She insists on writing her own checks and doing her own bathing. All the while, she is unable to see she can no longer do it safely. Perhaps it’s her strong will. Perhaps it’s the effect of the disease that reduces the blood flow to her brain. Likely, it is a combination of both. Her heart is working hard, but it cannot keep up.

Summer 2009: Dad recovers from his surgery, our son’s family comes in from PA with a new grandson and my brother’s wife visits from Montana. There are days when Mom and Dad  both feel good and enjoy each other’s company.

August 2009:  We take them back to their home in Morton, Illinois where they served the Rural Home Missionary Association two different times in their ministry. There is a farewell reception giving their long-time friends a chance to express appreciation for them. What a joy to listen in as people shared their love and appreciation for my parents.

Everyone knew they were saying a final goodbye to Mother. Mother knows it too, so much so that she goes to bed expecting to wake up in heaven and is disappointed when she wakes up in her own bed.

She begins having trouble sleeping, becoming increasingly restless, culminating in a sleepless night. She moves back and forth from her bed to her recliner. An evaluation by the hospice nurse results in her admission to the in-patient Hospice Care unit.

Fortunately hospice is to take care of the pain. God is to give peace. But neither seems to be working. The restlessness continues to consume her. It grows in ferocity until she can’t sleep, sit still, or focus. What has happened to the peaceful death we have counted on? They tell us she is experiencing “Terminal Agitation.”

With help from the staff, I begin a crash course so I can explain this agitation to family members and friends. Terminal Agitation is characterized by sudden agitation, anxiety, anger, or confusion as death approaches and is most likely caused by physiological changes within the body. The personality change can be sudden and dramatic, leaving everyone feeling helpless and overwhelmed. The unusual behaviors can surface suddenly and unpredictably.

Restlessness and agitation in the last stages of dying is not unusual. It can be managed in most cases. For my mother, the usual medications don’t work. Powerful medication that would have put me to sleep for hours barely phases her. Unaware of the rugged night she’s had, she tells me she slept well. The nurse tells me otherwise.

There are moments of clarity as she shows the nurses her manicure. “My daughter did it,” she proudly tells them with a beaming smile.

Suddenly she is using her stern mom voice, insisting “Now you listen to me. You get out of my way so I can get up and go to the bathroom.”

“No Mom, I am not going to move. We need to wait for help from the nurses.”

Moments later as we still wait, she wistfully asks, “I was a good mom, wasn’t I?” I assure her she was.

At times she is angry at anyone who tries to help her, except for Dad. He lovingly sits by her bed, holding her hand, speaking in soft, gentle tones. We spare him her worst moments taking him back to their apartment to rest. He’s relieved to have others caring for her.

Why does God seem silent as we deal with this wretched terminal agitation, with its unexplained anxiety and agitation taking over her body, soul and spirit?  Why is it my mother, a strong woman, with a deep and abiding faith cannot find a peaceful death?

I now have a more realistic view of how this journey can be. God does not promise an easy journey. My cousin Bobby reminds me we were created for life, not death. The process of dying can be ugly.

My feelings rise and fall with Mom’s episodes. Sometimes I am angry at her and at the same time, filled with love and patience. I sleep at night and stay present to her during the day.

I am aware of others giving me the breaks I desperately need. Some came to sit with us. Some came to sit with her so we could have a break. My friends and my counselor become the face and arms of God to me.

I become more aware of God’s presence among us, learning ever so slowly to rest in the moment – to be present, knowing I can take the days, weeks, and months to come to process what has happened. After her death I will have time for the confusion, the doubts, and the questions.

She has her last conversation with Galen the evening of September 24. She tells him she isn’t worried about dad, “Just make sure he gets a new coat and a hat.”  She also spends time with her three older grandsons in the evening, reveling in their presence.

The next morning, after a turbulent night, she lapses into a coma. Four days later, quietly and alone, she leaves us at 4:00 in the morning with little warning. Even in death she doesn’t follow the norm, doesn’t display any of the usual indications to let us know she would be leaving. I wish I could have been with her, but I remember a dream she related to me a couple of weeks ago in one of her more lucid moments.

“Last night I dreamed I was dying.”

‘Who was with you? “

“Oh, no one.”

“How sad. I am sorry you were alone.”

“No, I liked it better that way. Saying goodbye would have been too sad.”

The quiet life she led being the wind beneath my dad’s wings, is how she slips away from us.

We go out for breakfast that morning with two of our adult sons who have families of their own. “I don’t know how to lose a wife,” my Dad says, I’ve never done it before. I’ll have to learn.”
I order pancakes “Just Like Mom’s.” I don’t know how to lose a mom.

And Dad? He continued to live in his studio apartment. He never remarried, not Ruth, not anyone. He did, however, have a meaningful friendship with a widowed lady from the church. She would drive by in her big white Lincoln Continental. She would take him out to lunch to the envy and delight of his fellow residents gathered on the patio where they watch and comment on the comings and goings of their fellow residents.


And now Dear Readers, perhaps you would like to share your story. I’d like to hear it. Perhaps others would like to hear it too. Difficult as this journey was, I am comforted by knowing my Dad is in heaven with her and she is no longer missing his kisses.

11 Replies to “An Unexpected Journey”

  1. Carol,

    I remember your parents well. Your Dad was president of MIB when my husband Tom and I met them. Tom had been accepted to go to school at MIB. We came to look for jobs and housing in Lewiston, as we had 3 children, 9,7 and 4. This was the summer of 1976. Your parents offered to let us stay with them while we were there looking. I though that was such a nice thing to do as we didn’t know anyone. I found out later that they were very hospitable people.
    I relate so much to your story of caring for your parents. The last few years of my mom’s life we came to see them once every 4 to 6 weeks or if there was an emergency. My husband was a pastor so it was easier for us to drive an hour and a half away and stay for a few days. There were times I had to stay and help for a month at a time. Those times were hard. My mom had dementia so her personality changed, which was hard to deal with. She passed away and my dad was left alone. We had tried and kept trying to get him to come stay with us but he wouldn’t, lived in his house 50 years and wasn’t leaving. We still came and visited every 4 to 6 weeks. Finally after a few years we could tell he wasn’t taking good care of himself and a couple of neighbors had taken advantage of him. We had to make the hard decision to leave our church and retire early and come live with him. He lived several more years. The last 2 years he was alive our daughter and 3 young adult granddaughters had to come live with us. She’d been divorced for awhile and just wasn’t making it on her own. Really crowded but they were a big help to us, especially my daughter and her oldest. Because of them we were able to keep him at home until he passed. The last six weeks were extremely difficult. I know the Lord had a good reason for them moving in with us. They are still with us and have been able to help us out at times when we’ve needed it.
    Looking back I can see God’s hand in everything that happened. Funny thing, my husband wrote his senior paper on God’s plan to take care of your family. When it came time to do that there was no denying what we needed to do based on what my husband wrote years ago.

    Peggy Stevens (husband Tom)

    1. Peggy, thank you for sharing your story here. You honored and loved you parents in ways only you could do. It is hard on so many levels. Dads last 14 months with us were hard and good all at the same time. He broke his hip and could no longer live in his apartment. I often wished he could have lived at some wonderful place that would have cost way more than we or him could ever have hoped for, yet as I said – hard and good. I suspect we are about the same age….I think of our own aging. Can’t help but do so. We’re doing OK on our own, but at age 75 and 77 it’s not like that will last forever!

  2. Carol, your parents were great people. I just loved, loved them both. Thanks for sharing.
    This blog/ writing makes me think perhaps I need to do the same for my Dad’s passing. He was an amazing mentor. As an ordained Mennonite minister, he was also very forward thinking to choose a daughter (female) to lead a business in the Automotive Aftermarket. Thanks Dad. I do mean that. He groomed me well to take over his business but, there was so much he didn’t try to warn me about. He left me learn myself. Dad passed of Alzheimer’s in October 2020. He became a person none of us knew and could be mean and ugly. It was the disease but it has taken me a long time to recover from some of his words about my leadership and business style in the early stages of his disease.
    Again, thanks cousin. Judy

    1. You’ll be ready when your ready, Judy. Writing about your Dad will be a treaure for your children and particularly grandchildren. Yes, It makes sense it takes a while to be ready. After the loss, it takes awhile to have a more wholistic memory of especially when you went through what you did with your dear Dad. good to see you here, Cousin.

    1. Ahh, Sid, My online writing friend. Thank you for your encouragement in so many ways during those 5-hour marathon writing groups and others along the way. Your big smile and encouraging words are a gift to me each time we end up on the same “Shutup and Write” groups.

  3. Carol this entry is so tender and real – I read it over and over again and give thanks for your dear parents. ??

    1. Thanks Donna. And thank you for proofing this piece, for your suggestions and for listening to me process as I wrote this over the last weeks. You’re a good friend

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