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Words

Words. They can be strung together, beads and gems, to express something with texture and sparkle. Entirely frivolous or deeply significant. Sometimes I can capture a moment or sense of spirit, maybe heart beats on paper, and a story unfolds.

Wednesday, August 14, 2013

I Was Wrong


From the beginning of this series of blog posts I wanted to write about family relationships, the way they can change. Some grow stronger, others crack or break irreparably, especially with illness or death of a loved one. I saw it when my daughter died, and then again with the death of my husband. Maybe someone presents at the perfect time with grit previously unseen while another disappears. Neither expected. A hero surfaces while someone else avoids a chance to save the day. 

But I didn’t know how to tell this part of the eldercare story without venting or ranting, or being perceived that way no matter how carefully crafted my words or intention.

I still don’t know but I’m writing it anyway because it’s too significant to omit. Excising it would play into the protection racket.

I add a qualifier. This is my tale from my experience. If you spoke to someone else in my family their version could sound different and not untrue from their perspective. 

But it’s important to entertain the possibility that your family could fracture from the strain of prolonged illness. Or, I hope for you, become closer. Perhaps some of both.  

August 29th marks the fourth anniversary of the evening we were told Dad had six weeks to six months to live. Since I was told. I drove to their home in the woods early one Sunday morning, pulled my tentative parents out and carted them to the medical facility I trust most, a drive of four hours. I was able to convince them to come by promising that if I was wrong, I’d happily drive them back that night. First I needed to hear from an expert that Dad was okay. 

Within 30 minutes of arriving at the ER I was told Dad had a tumor that covered half of his brain. He snored with his usual roar on the gurney next to us as the doctor spoke to me. I repeated the words to my mother who sat in stunned silence in the waiting room. I called my husband, my elder brother, then my son. Brother One phoned Brother Two. 

Six weeks to six months. But four years have passed. Dad has outlived Mom. On the list of the unexpected, that would be at the top.

Neither would I have predicted I’d lose my family as I knew it. I thought we’d hang tough and hang together. Would spell each other, help each other, console each other, and together contribute to Mom and Dad. Imagined tears and blow-ups and all the emotions and expressions that stress and illness can foment but ultimately, thought we’d be together.

I was wrong.  

After Dad’s diagnosis and Mom’s concomitant illnesses my parents were placed in assisted living a mile from me. I could walk to them. Saw them nearly daily when they lived in California.

I’m a daughter of a certain generation. My parents' expectations of me were different and greater than those of my brothers in this circumstance, as were my expectations of myself. 

I didn’t ask anyone to do what I was willing to do and didn’t expect out-of-county and out-of-state brothers to equal my assistance minute for minute when mile for mile they were further away. I was explicit in saying this. 

But I thought we’d find geographic parody, each doing what he could from his corner.

I was wrong. 

As the sprint became a marathon, the illnesses more grave, and the wear and tear
greater, Brother One stepped up his support, coming from Arizona at scheduled intervals while Brother Two’s assist slowed to a trickle. His wife said we lived too far away to help. She'd need to drive an hour.

I ruminated. I ranted to my husband. I bored myself with my never-ending internal preparation for a meaningful dialogue with my missing sibling.

Actual discussion with him did nothing to influence behavior; I was hurt and angry. I felt abandoned. I wondered why someone I’d always stood by wasn’t standing next to me. 

I fretted on behalf of our parents. The youngest. The cherished. The one in whom they’d most delighted was nearly absent save flocked and glittered holiday cards signed by his wife, “We love you so much.” But little sitting next to. Being with. Listening to.

And no relief for me.

So I asked a clear question. “What can I count on from you so I can plan? What will you do?” 

He was warm. Kind. He smiled. Nodded in understanding. He did not answer and I wouldn't hear what was in the silence. 

Then I emailed. 

He did not reply.

I thought perhaps the sound of my needy voice or sight of my name in his electronic in-box grated on him so I asked my son to call when something was necessary. One day he said, “Please don’t ask me to call Uncle again. His voice, it changes to a ‘what do you want now' tone, and I feel really angry.”

I convinced myself that maybe my youngest brother couldn’t witness the deterioration. Maybe the baby of the family had been so protected he couldn’t watch our parents die. Maybe he couldn’t see me age at warp speed.

Maybe he thought I was made of sterner stuff and didn’t know we were the same stuff. Perhaps he didn’t understand I faced each day as frightened as he but without his contribution had to access my reserves more frequently. I had to dig deeper because he wasn’t. Didn’t realize I’d accept a spade if he didn’t own a shovel. 

Maybe when his wife said she loved me like a sister I’d misunderstood. I’d never had a sister. Maybe sister-love was different than I thought. Different than the way I loved my brothers. Maybe sister-love wasn’t designed to go the distance.

Maybe he thought because I'd managed through the loss of a child and husband I was better prepared. Didn't know when I'd faced the unreasonable, unthinkable, I hadn't been hardened in the crucible but instead was burned and shattered inside. 

While he offered none I devised excuses for him. 

When I couldn’t keep up with caregiver chores any longer, the doctors’ appointments, shopping, hospitalizations and surgeries, hauling one parent to see the other, intercessions with facility staff, when it was too much for me, even with husband and son helping and Brother One flying in and out, we put our heads together to find what we might ask of Brother Two that would not require interruption of his schedule, or travel from his home.

Paperwork. Mom and Dad’s accounting and bill paying.

We found the easiest thing Brother Two might do that would make the biggest difference if lifted from me. Brother One made an email request describing what we needed. Would Brother Two pick up a file box of bank statements and monthly bills, all paid, and take over where I left off so my home office would be free for me to work when I wasn’t with Mom and Dad? Could we change their mailing address to his so that invoices and insurance mail could be reviewed and filed at his house?

He did not respond.

Then I knew. 

I could fool myself no longer. It didn’t matter the reason. He wouldn’t be part of the care team. It wasn’t about distance. Or ease. Or schedule.

It was about something I didn’t understand.

In the pain I wondered why we didn’t matter enough. Why didn't I matter enough?

So I stopped.

I put emotional distance between us. I didn’t ask or phone again. I quit thinking of him as family. It hurt but not as much as being left behind while from my vantage point it seemed his life progressed unchanged.

He was a stranger with whom I shared DNA. A child I’d once walked to kindergarten on his first day of school. The thought of him had me pitch between grief and rage. 

I promised me I'd keep him out of mind, prevent myself from inventing relationship that was not there; I'd stop expecting or hoping.  Or agonizing. 

If I thought of him by accident, I ordered myself to stop. To make the pain go away.

I quit on him. I quit on us. And I admitted I’d always known our relationship was as close as I was willing to knit. Was contingent on my will to do the work. I hoped what I’d already done was enough to keep us close. That he would notice I was gone.

Again. 

I was wrong. 

When we moved our parents to Arizona, Brother One called to tell Brother Two. To the best of my knowledge Two didn’t visit to say good-bye. I thought I couldn’t be surprised. I was. But I don’t think my parents were. They'd long arrived at a place of acceptance I had yet to find. 

Brother One has taken over nearly all contact with Brother Two if there's a change in health status that should be shared. We disclose so when we look in the mirror we know we've acted responsibly. We keep no information from him that might alter his ability to make informed decisions. 

Two days before Christmas, Brother One called me to say Mom was being moved to hospice. He was devastated. To ease his way slightly I made the call to Brother Two before I left to help in Arizona. And say a final good-bye to my mother.

Brother Two stayed home to celebrate Christmas with his widowed father-in-law so his wife’s family wouldn’t think he’d abandoned their tradition; he volunteered this to me when he arrived after the holiday. 

Mom spoke for the last time. “My baby,” she whispered when she saw him. 

When we were young, would fight and argue, scream and scrap as siblings do, she would say, “One day your father and I will be gone and you’ll just have each other. Don’t fight. You’ll be what’s left of our family.”

Wreckage. That's what's left of our family.

Dad’s care goes on. On Easter and Father’s Day he received his Hallmark greetings. But I don’t think he’s seen my younger brother. 

Brother Two is a very nice man. With a wonderful smile. He tells a good joke. People are drawn to him.

He’s charming. And pleasant. 

When friends think of fun they never want to try without him.

He’s an athlete. But apparently lacking stamina.

He’s a sprinter. But I'm guessing not a marathoner.

He’s a lover, not a fighter. Not for Mom and Dad. Or, for me.  

I think he's a family man. 

Just not my family. 

As time has passed and others tell me their stories, I hear a version of this one again and again. Questions left unanswered. Dreams and expectations dashed; disappointment deposited instead. 

I don't pretend to understand. Why, if a chance exists that the journey could be made easier, do families not use each other as a splint to prop the broken spirit? Why splinter, fracture, and wither away?

Do they come back together again? And heal? 

I hope so. I don't like being wrong. 


4 comments:

  1. Pam, so much of what you write leaves me speechless. In deep thought, thinking of my own family, and wondering what, if anything, can I say to help you. Then I realize I can't say anything. All I can do is to say, "Thank you". Thank you for writing; thank you for sharing. But a thought does come forward: Brother 2 may not be helping you the way you'd like him to help, but maybe he's not able to deal with the loss, the inevitable loss. The 3 of you are all different--no doubt like the 4 of us Hottle Girls. Don't give up on him -- not yet! Love and hugs to you.

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    1. What you have said has also occurred to me. It has also crossed my mind that because I am willing to handle the most unpleasant of tasks it gives opening for the less willing and/or capable to disappear. Not like things won't be handled, right? So I know I have a role in this outcome.

      Insofar as executing responsibility to be communicative, I've been a champ and haven't had a partner. That is the hardest part. To be left wondering. I have distanced myself so as not to be angered or disappointed; if an opportunity presents to reestablish rapport, I will then be less likely to miss it due to rampant ill emotion. That said, I'm not planning on creating the opportunity. It will unfold with another at the helm.

      Thanks for being such a loving and compassionate friend and supporter.

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  2. Pam,
    Very honest.
    I too, do not have the power to take the pain away but I am certain you will find the answer. Perhaps you already have.
    For me and my broken family the answer has been acceptance. My therapist encouraged me to be the "glue" for my family and I had to finally tell her I was not up to the task. We need more than glue to save us.
    The sad part of it all is that my parents would be so sad to see how me and my 6 siblings are not involved with each other anymore.
    So I made some decisions. I decided NOT to spend anymore energy on those who do not wish to be in my life. I have decided to accept what is. I also decided to make an effort to build on those relationships with those who do wish to see me. I feel this is the best I can do to live up to my parents legacy. They worked so hard all of their lives for us and it would be a shame...a crime...to not try and mend the fence where I was able to.
    So, I guess what I am saying in very simple terms is we do what we can and what we know is right. That's all. I did this when my parents were alive and when they both were ill. And now, I have to continue to do the same now that they are gone.

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    1. I'm trying to do as you well articulated, what I can and what I know is right. I attempt to refrain from judging harshly, ask for what I need, monitor my "80%", watch for a door that could open, and while doing all this, protect my heart. At this age I've seen many unexpected things happen; in the end it might all shake out differently than it appears right now.

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