{Eldercare} In Life and Caregiving, Don’t Be Surprised by Suffering

 

An essay about eldercare by Pamela Price

My mother, the glamour girl

Like many of my friends, I’m at that point in life where things keep happening.

Parents are sick. Kids are struggling to become adults. Jobs are lost and sought. Hormones shift and we vacillate between moods.  Our outrage against social injustice rises and falls with the news cycle, leaving us emotionally spent. Deals fall through at the eleventh hour.  Our friends and family begin to die off. Administrative errors lead to unnecessary paperwork. We get sick.

Some weeks it feels like we’re opening door after door after door only to have the contents inside tumble out and crush us. It’s oppressive, soul-stripping, and mind-numbing.

When I feel that sense of overwhelm, I’ve learned to turn back to words that I encountered in my early forties, five words that have resonated within my heart again and again, given comfort in a most curious way.

I’d like to share those words today through a story, all in hopes that you can derive some benefit from those words, too.

Note that this is a lengthy essay. Prepare to settle in.

* * *

Over three years ago we persuaded my 70-something-year-old mother to leave her home in Northeast Texas. Disfigured and crippled by severe Rheumatoid Arthritis, she’d exceeded her ability to care for herself and my childhood home years before but, like me, she’s stubborn.

As luck would have it, an assisted living facility just five minutes from my house had space. They were willing to accept her until the money ran out and she qualified for Medicaid.

All summer and fall I worked on the logistics and coached her through the anxiety of what felt to her like “giving up” on her life. Transportation was ordered for her. Items were selected for her new room. Meanwhile, I let a fantasy develop in my head: a sweet tableau that included me biking to her house every day with the kid in tow, our sitting and reading with her, and me writing while she and her only grandchild visited.

That dream died while I was en route to her house on December 31.

 

An essay on eldercare by Pamela Price

My mother and an unnamed cousin

New Year’s Eve was on a Friday and my husband, son and I were on a highway near Corsicana, Texas when I got the phone call. On the line was one of Mom’s neighbors, a retired nurse who popped in to check on her regularly. 911 had been called.

Mom was sick. Very sick.

We reached my father’s house, and my husband and son piled out of the car. I raced to the hospital ER, where my mother was violently ill and not terribly intelligible. There I found myself, for the first of many times, advocating for my mother’s care. That particular night a kind-hearted nurse–an angel, really–helped me circumvent a stupid decision by an ER doctor to send her home.  Heated words were exchanged. With the ER nurse’s help–and some fierce logic and advocacy on my part, I managed to get my mother admitted.

Once she was in a bed, I began to unravel the extent of my mom’s health decline. She needed to be in a nursing home, not an assisted living facility. I would have to reconfigure all the plans. Over the next few days, I had to select a nursing home in fifteen miles away, reconsider what Mom could take with her and what need to be moved permanently to my home, and generally reinvent the plan from scratch.

Meanwhile a hospitalist, a nurse on the orthopedic floor to which Mom was assigned, and I worked to keep Mom in the hospital just long enough for the ambulance company to reopen on Monday so that we could change the destination formally. The doctor, with a wife newly diagnosed with RA herself, was in visible shock at how the disease had mangled my mother. He kept pressing for more tests. Little did we know then that the root cause of her illness was a sneaky intestinal “twist”–something that would damn near kill her 8 weeks later.

In early January–as people toasted one another or gobbled down “lucky” cabbage and black-eyed peas, I was still so supremely confident in my own ability to accomplish any task and to outfox any bureaucratic hurdle that I felt a constant rush of adrenaline. I was experiencing my first “eldercare high,” a powerful sense of purpose. I spent days going between my mom’s house, the hospital and back again–ending up exhausted at my dad’s house and collapsing into bed.

I know now that that sort of behavior comes with a cost.

We often say that young people think they are invincible, that they think they will live forever. I’ve never really believed that per se but somewhere around the age of 40 the reality sets in that the clock is running out on all of us. Between that January and now, December 2014, the universe has seen fit to ensure that I am aware of my own clock–and that rush I felt often comes with a physical price to caregivers. (The mismanagement of my own stress likely helped to trigger my Graves’ disease.)

However, with the help of that endorphine rush back in that rural hospital, by the first Wednesday of the New Year, the moving van was full and my family was loaded up. I said “goodbye” to my darkened childhood home for the next-to-the-last time. Mom was in an ambulance ahead of us, already halfway to Central Texas by the time we left the driveway.

As we drove, I began to feel ill. The adrenaline that had carried me for days was wearing off and I felt a horrible sense of loss as the reality dawned on me. I was the caretaker now. My mother, still of sound mind, would need a staunch advocate for the rest of her life. Her hands were gnarled and her legs useless. More than that, she was terrified of uprooting and moving from her safe nest to, of all places, a nursing home.

 

 

An essay on eldercare by Pamela PriceMy mother in a costume in her childhood home.

When I was growing up Mom regularly said that the last place she’d ever want to live is in a nursing home. So much of what she feared–bureaucratic sloppiness, petty theft in-fighting between staff, “mean girls” behavior between residents–has proved prophetic at different times, in different facilities.

On the drive from Paris back home to San Antonio, I found myself choking on my own fear and terrified at what had happened to her body, which had taken a rapid decline in 6 months. How could all of these awful things, these changes have happened so fast to derail my perfectly designed plans? Worse, when I called to check on her after her arrival (we were still driving), she compared “this awful place” to the nursing home in my hometown that she’d most despised.

She hated her situation. She was, she said, in Hell. She was angry at me. Clearly, I had failed her.

We were both in pain now.

* * *

The next morning, having barely slept, I awoke early and drove alone to the nursing home. On the way, I passed a church sign that read “Don’t be surprised by suffering.”

I almost drove off the road into the ditch. In my head, I knew that the church was usually good for a compelling sign. In my heart, I knew that particular message was meant for me in that moment.

I’d like to say that I immediately took that message for all its implications–that suffering is part of human experience and that if we accept it, we can move toward higher ground in a crisis–and lived happily ever after.

Instead, as the Universe has presented challenge after challenge to my  mother and I in the intervening years, I find myself circling back to those words over and over again in various settings: in doctor’s offices, in ERs, in surgical waiting room, and while on hold with bureaucratic offices.

Each time I contemplate that phrase in the context of my life, I find a new, deeper level of understanding of those words. People have asked me how I manage to do what I do–write books, homeschool, help my mom, and care for my own self.  Honestly, when I’m in the thick of it, I manage by meditating first on the release of my surprise at suffering and then try to release the accompanying pain. Regular expressions of gratitude help, too.

And I pray more often than those closest to me realize.

Don’t. be. surprised. by. suffering.

Suffering. If we accept it and work to be unfazed by it, we can address it optimally. If we are shocked, angry, bitter, we block ourselves from making what progress we can.

It sounds so simple. And it is. I just wish it wasn’t so hard a lesson to grasp, or that we each have to go through our own struggles to fully comprehend the truth: that suffering is ever-present, that acceptance is the first step to finding comfort on the other side of the latest set of hurdles.

 

An essay about eldercare by Pamela Price for RedWhiteandGrew.com

 

 

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{Eldercare} In Life and Caregiving, Don’t Be Surprised by Suffering

8 thoughts on “{Eldercare} In Life and Caregiving, Don’t Be Surprised by Suffering

  1. This is beautiful and gut-wrenching. I love the sign that was meant for you. What a powerful lesson. I pray 2015 holds less suffering for you all.

  2. Jade Rivera says:

    Thank you for sharing this beautiful story and truth with us. This reminds me of a scene from a Sopranos episode (of all places, I know) that resonated so hard I’ll never forget it.

    In the scene a Russian woman says to another character, “You Americans, you think you deserve to be happy, no one deserves to be happy.”

    Happiness is not a birthright. The realization that I was going to have to work for my happiness was and is a great motivator. Thanks for the reminder.

    1. “The realization that I was going to have to work for my happiness was and is a great motivator.” <–What a great idea. I really like the way you said that. Thanks for the note, my sweet Jade.

  3. This really hits home with me. I came to the realization just a few weeks ago that I am caring for my family for 3 generations – our children, my husband & myself, and my father (in a nursing home) and, though not directly caring for her but constantly in touch, with my mother who has breast cancer. I’m often overwhelmed -especially in the early days with my father – who was also angry at being placed in the home though he also could not walk. I get frustrated b/c my own health is often so demanding – bi-polar, scoliosis, and allergies – all seem so simple but are constant health awareness demands. Now, I get a call today that the radiologist that read my (first) mammography this week now wants a bi-lateral ultrasound to make sure it is just cysts he is seeing. Boom. Not what I wanted to hear…I’m a little scared. Thanks for sharing Pamela.

  4. Thank you for sharing this, Pamela. I’ve wanted to know more of the background to what you’re going through now. I can’t imagine the depth and complexity of this journey you’re on. The way you write about it is so therapeutic to all who read it. (Your gifts as a writer shine through–even in your distress.) You’re such a powerful articulate advocate for your mom. It’s so inspiring. Remember to take care of your sweet self in all of it, too, as much as possible.

  5. I’m so sorry for everything you had to go through. I worked in a long-term care facility 5 years after I graduated just because I loved them so much. You are not alone in your struggle I promise and you are doing everything a daughter is supposed to do. I’m not to that road so I don’t yet -Fully- understand, but one day i will be.

  6. colleenpence says:

    You so eloquently stated many of the feelings I’ve struggled with this week (and these past few years, really). My mom suffers from Parkinson’s. My dad is her primary caregiver and he receives help from home healthcare aides many hours each week. But her disease is taking a huge toll on him too. Thankfully, I live around the corner from them and can help out as needed (and I visit often). But watching them both struggle with these roles is tortuous. This week was a particularly bad one. Because Parkinson’s is a degenerative disease, I am bracing myself for worse times ahead. Your sign will continue to flash in my mind. Thank you, Pamela.

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