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Filtering by Category: Mom

gold tried in the fire : part 6 / well I got some gold inside me too

bethany

This is my story of the last year, told in six parts. Paragraphs in italics are my dreams, and the dated snippets come directly from my daily journal. I trust my family to forgive me for all that I've shared, because I can't tell this story without including the heart parts … and some of them are raw, and hard to swallow.

Part 1 / Part 2 / Part 3 / Part 4 / Part 5 / Part 6


well I got some gold inside me too

Dad showed up the next morning, sans sleep, and put himself back to work on the deck. We all wobbled a good bit. Some of us limped along, some of us worked ourselves ragged, some of us didn't sleep much, some of us slept a lot.

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Michael went back to LA and spent two more weeks on his installation job, while the boys and I did a few small things on the house, and spent a long weekend in PA helping surprise a friend for her 50th birthday. It was a lovely sort-of-head-clearing trip, with great conversations and some deep sleep.

Sol LeWitt Wall drawing #89 being installed at MOCA Geffen in LA. More than 1,500 6” squares with lines in four directions.

Sol LeWitt Wall drawing #89 being installed at MOCA Geffen in LA. More than 1,500 6” squares with lines in four directions.

Back in Chicago, I struggled with feeling flat, untethered, and invisible. Intimidated by the amount of work to do on the house, and very limited in my energy levels. Limping for sure.

Michael got back from LA very late one Friday night, and at 6:40 the next morning a dumpster was dropped off in the driveway, as we had deck and bathroom demolition debris to get rid of. I wake up to a loud backup BEEP-BEEP-BEEP right outside our bedroom window, realize that the 6:45am alarm I'd set for the 7am drop off I'd been promised was useless, throw a sweatshirt and slippers on over my garish leggings-as-PJs and run out the door, nearly bumping into the side of the delivery truck. I'd had a very short and “yup”-punctuated conversation with a U-Fill-It man to arrange the drop off, and as I walk up to the driver's window, which starts a good 18 inches above the top of my head, I hear a “Well I didn't expect you to come out of there!” delivered in an amused and measured Mr. Rogers-ish drawl. It turns out he is the one I'd spoken to on the phone, and the price is $30 cheaper than I thought I'd heard. After he drops the dumpster right where I want, and scrawls me a receipt on a piece of notebook paper torn out of the same kind of little spiral-bound thing Dad keeps in his pocket, he allows that “Since I got it dropped right on the first try, and you're happy with the price, my day is DONE and I should just go back home right now!” He then tells me to “just call when you want it gone” and pulls out of the driveway, dwarfing Matilda on the way by. As I head back into the camper in the hopes of more sleep, I see that not only is Michael now standing by the garage grinning from ear to ear, but the neighbor next door is also intrigued, though still pretending to take care of his dogs from the front porch. I think we were all equally amused, and was grateful for a humorous start to the day.

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We started to find our groove again, though still tired. The deck was finished, the bathroom demolished and started over, and we fit in some lovely meals with friends that hadn't been possible before. Mom's birthday rolled around, and nibbled at our hearts. I filled some of the hole by making time to write letters, which helped me think about things and process some memories and feelings. I still love the exercise of writing long-hand, once I find a pen or pencil that feels just right. My thoughts seem to come out a bit differently that way too.

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Dad took a big job off of the schedule by hiring a roofer who was pretty hungry for work, and I was delighted. We were still pretty loosely connected in our family of four, scattered mentally, and running on fumes. As my thoughts started to ramble a bit towards what might happen after we left Chicago … land and building and putting down our own roots … I felt the exhaustion nibble away at the hope that we'd have enough energy to get the whole dream going. “Feeling old. Scared-of-starting-from-scratch old.” We had to let it go, and just focus on finishing well.

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In late May, the lists we'd made months ago and then buried were dug out and posted on doors all around the house, and it started to make finishing seem more possible. There were plenty of things to cross off, and it made the place feel more like a work zone and less like my old home. Appliances were serviced, and a few more big checks written. Rooms started to get finished and staged for sale, and more and more things dragged out to the curb for anyone to take, or dropped off at charity.

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Dad came over as often as he could, and started arriving at 9am on Saturday mornings in his work clothes, carrying a pair of Venti Starbucks coffees. Bernie spent every free day he had working on painting outside and plumbing and drywall and flooring. He was updating and finishing what he'd started back in 1984, when he designed and helped build the addition that took our small 3 bedroom ranch and turned it into a 4-ish bedroom house with plenty of space for guests and entertaining. His attention to detail made Michael and I feel quite a bit better about how our approach to painting and refinishing had gotten a bit obsessive, while Dad noted our mutual approaches with humor, patience, and ultimately, real appreciation.

The kitchen was left for last, and the soft spot in the floor by the sink had to be addressed. Under a single sheet of vinyl flooring, it was tricky to fix without having to redo the entire floor, or replace more than just the rotted part of the subfloor. They came up with a system, removed a whole bank of cabinets and the sink and dishwasher, peeled back the vinyl and part of the wall … and discovered a deserted mouse condo, complete with a neat row of drained mini cream containers and the ID tag that belonged to Chico, Mom and Dad's last cat who had been dead for a good 10 years at least! It was kind of fun to remove all the previous layers of flooring in that spot, and match the various colors up to the layers of paint that Michael had sanded off of the old back door. I love piecing together old house clues into a story.

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The final stretch, the loooong stretch, took up the last few weeks of June, and then slid into July. We'd hoped to leave by July 4th, but there was still a garage to clean out, driveway to refinish, trees to trim, stuff to dispose of, hardware to find and install, carpets to clean, things to label, freezers to empty, paperwork to sort and fill out, prices to set, birthdays to celebrate, last dinners with family, last chats with the neighbors, last trips to drop things off at Park Ave and reStore and BTP (Dad's work) and whatever thrift store happened to still be open.

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Somewhere in those last two weeks we also had the camper worked on, the truck worked on, passport applications submitted (just in case), the mountains of stuff we'd put in the house brought back out and sorted, bins bought to store the excess that had been acquired since we last tried to pack it all in, flowers watered one more time, and finally all of our stuff crammed and jammed back into Matilda and the camper. A seemingly endless flurry of lasts and oh-well-that-won't-happens and feelings and memories and hopes and aches and did-you's. Then that long late afternoon wait for the boys, who sat on the porch in the sun while I finally went over every corner of that house and property, taking pictures and inhaling it all for one last time. It felt full of love, lit with memories, and ready for someone else. Another letting go, another good end.

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I never expected all the gold. The things I did expect; working with Michael in our usual easy way on the house, helping Dad more than Mom, spending a month or two … none of them turned out anything like I imagined. I had no idea of the depths I'd have to go to to care for Mom, or the strength I'd find in utter dependence on God in order to do it for so long. The nearly crushing weight of the responsibilities I'd be given, and coming to the absolute end of myself in that arena, only to discover that the end result was the healing of a fear that I'd held onto for 40 years … disappointing my Dad. That the relationship I had with my sister-in-law Rene could grow so much deeper and wider, and more transparent and lovely than it ever was.

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I never envisioned that Stephen and I would find a shared joy in more than puns and walks and photography battles, discovering a language of the eyebrows and eyes and heart that went well beyond our childhood button-pushing (though it's still alive and well!). That Martha and I would spend months together in the home we grew up in, holding each other up, and burrowing even deeper into the certainty that we are mutually loved, seen, adored, and needed. That the boys would get to spend so much time with their cousins, and get past the bumps of teenage-hood and competitiveness and into the easy enjoyment of each other's company.

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Who knew that my Mom, in her completely helpless state, could be so big, loving, delightful, and heart-responsive that I'd fall in love with her so hard and so deep I'd wonder why I ever gave up on that kind of relationship with her years ago. That her shoes would sit next to Grambie's in the doorway of my heart.

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That my father, who I've adored as long as I can remember, and canoed with, worked for, spelunked behind, renovated houses with, traveled alongside, learned fearlessness from, given birth in front of, and thought the world of … that he would open up his heart to me, letting me see the vulnerability I thought was in there but was always hidden. That we'd share the sweetest communion we've ever had while walking Mom to the door of heaven. That I would get to hold her right hand, and watch him, as she took her last breath.

I'm thankful from every nook and cranny of my still-tired body for every single bit of the last year, glad to now be looking at it in the rear-view mirror, and working on finding my stride and voice as the next phase comes into view.

Onward.


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gold tried in the fire : part 5 / cause you got gold, gold inside of you

bethany

This is my story of the last year, told in six parts. Paragraphs in italics are my dreams, and the dated snippets come directly from my daily journal. I trust my family to forgive me for all that I've shared, because I can't tell this story without including the heart parts … and some of them are raw, and hard to swallow.

Part 1 / Part 2 / Part 3 / Part 4 / Part 5 / Part 6


cause you got gold, gold inside of you

Mom’s funeral was set for the following Thursday, with a visitation the night before, and the days in between were fairly insane, especially the first one. Friday kicked off with emails and calls and more emails, travel plans, printing programs, choosing a casket and cards and flowers, visiting the cemetery with Dad to confirm the plot, family dinner, loud conversations, and more decisions … with many of us initially tired to the point of being virtually non-functional. Aunt Charlotte was a rock in the middle of it all.

The next few days filled up with food shopping, guest room prepping, schedule arranging, neighbors to invite and chat with, photo boards of Mom's life to make (my personal therapy) … all the bits and pieces that enable a sudden gathering of 180+ people that all loved Mom, and loved us too.

We also fit in those things that funerals and weddings both seem to prompt … special clothes, haircuts, slices of unexpected joy in finding out who's planning to to come, and last minute photos of family groupings that never seem to happen otherwise. The busy seemed to push the tears aside, and I welcomed the distractions, especially as Michael had left Sunday morning for his LA job, and wouldn't arrive back until early Thursday morning. It was all a blur.

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By the time Wednesday came, my stomach was in knots. There was the emotional hurdle coming of seeing Mom's body in the casket for the first time, and the knowledge that if history was any indicator, the likelihood that I would make it through the evening without someone's hug squeezing me into a puddle was pretty slim. I hadn't found any real tears yet, but knew they had to come sometime. I also wished Michael were with me, and missed his shoulder … and the kind of squeeze he gives my hand when he sees how fragile I feel.

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After a lovely lunch with some family that had arrived early, I got the boys dressed in their finest, and managed to be the first carload to arrive at the funeral home. I waited for reinforcements to arrive before venturing in, and was thankful it was Stephen that showed up. We walked up to her casket together, and I think were both were equally relieved to find out that she looked even less like 'herself' than expected. It was just her body, not Mom, but it made it easier to think of it that way when she looked nothing like she did in life.

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People started pouring in, and seemingly never stopped. There were stories, hugs, reunions with folks I hadn't seen in 20+ years, meetings of new cousin in laws and babies, crowds in every possible corner, and a hum and burble of conversation that filled the room with a lovely fizz. Yes, there were tears, but they dried quickly. When the time to leave came and went, with the crowd only slightly thinned out, the funeral staff had to politely ask everyone to wrap it up. It was the happiest visitation I think I've ever attended, and I left with a bounce in my step and a pile of love to take home with me. I squeezed in a bit of time with cousins afterwards, and then collapsed into bed, very thankful for the support of so many of my own generation … especially the one who I told Not to come, and she did anyway.

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Fortified by a bit of sleep, the arrival of my husband, and a piece of bacon, we all arrived at the funeral home nearly on time the next morning, and were quickly told where to park to be in line for the procession that would follow the funeral. The room filled even more quickly than the night before, with some overlap and many new arrivals. I couldn't seem to get to everyone before it was time to sit down, on the stiff couches at the front with their discreetly placed boxes of kleenex. The rest of the room was filled to bursting.

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Stephen took the first part of the service, sharing thoughts on who Mom was, what she believed, some things she said to us kids, and a couple of hymns for us all to sing. During one of them, Praise the Saviour, I struggled a bit. The singing truly sounded fantastic, but it was the one I sang to Mom almost every night when putting her to bed and she'd often joined in, even just by mouthing a line or two. So in my internal attempts to distract myself from my emotions, as we're singing, I wonder what my brother-in-law Bobby is thinking about this song? I can't see him behind me, but I know he's not familiar with most of the songs we grew up with. Does he know it? I discover later that during that song he got very intensely and uncharacteristically emotional, and couldn't figure out why. He looks up, and clearly sees Mom standing and smiling at the front of the room, in a white robe with long flowing sleeves … she raises her arms and seems to be directing the music. He reacts with happy tears and goosebumps.

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After my Uncle Bill had a few words also, it was time for everyone to file past Mom's casket for the last time. I was glad family got to go at the end of the line, and gave her one more kiss on the forehead. The procession to the cemetery was a bit of relief, especially watching the two white escort cars zooming ahead and behind at the intersections, looking very much like a pair of sheepdogs working to keep their whole flock together. At the cemetery, I watched with increasing misgivings as we didn't seem to be heading to where I knew the plot to be, but stopped at the mausoleum instead. My trepidation turned to a strong feeling of dislike as I realized her casket was being wheeled inside, and we were to follow. Apparently the ground around her grave was too wet for a crowd to gather, thanks to recent rains. I didn't like the feel being trapped in a big and rather dark building.

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The place was two stories of solid marble, had several aisles with crypts in the walls, and a wide staircase curving up to the second floor behind us. There were only a few folding chairs in the area where they wanted us to sit, and I did so reluctantly as I'd rather have stood around the edges, as most folks did. I felt uncomfortably exposed. My Uncle Danny stood up, and shared some thoughts he had for the family, before asking us, with a wobble in his voice, to sing one more hymn together. This time it was Jesus That Name is Love, and by the time we hit the 2nd verse I was thinking that there was no better place to give Mom a final send-off than in that stone-walled space. The acoustics seemed to be utterly perfect, the singing flawless and of one voice with no one dominating, just a heart-filling sound that seemed to lift the entire group of us outside of our bodies too, into a ball of joyful noise suspended somewhere between heaven and earth. I got goosebumps.


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It seemed a bit strange to just walk past her casket and out the door, but we did, and headed off to a meal for everyone back at the church building. It was lovely to sit down at a big long table with old friends and new friends and rarely seen family, and have all the food and other details taken care of by another willing crew of familiar faces. The rest of the day was filled with cramming in as many conversations as I could, having a quiet family meal back at Park Ave, and talking to other visitors until I nearly disintegrated and had to collapse in my own bed. The day was over, and Mom had gotten what seemed like a perfect sendoff.

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After a last impromptu family gathering at Teddy's Diner for breakfast the next morning, I had to give my sister a hug goodbye, and got a sudden thump in my solar plexus. This was it, the end of this era … with all the shared time and tasks and feelings and fellowship, and we were parting ways for who knows how long. It hurt.

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There were several more of those moments as the rest of the visiting family was sent off, and yet another one when a few of us went to Mom's grave (it turned out they'd buried her right after we left the day before) and Dad shared some thoughts. I scattered dandelions, because in the scurry of the day I'd forgotten to bring any of the bouquets we'd received.

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Then there was nothing left to hide behind, and the question of moving on without Mom was squarely in front of us all.

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gold tried in the fire : part 4 / refocusing the flame

bethany

This is my story of the last year, told in six parts. Paragraphs in italics are my dreams, and the dated snippets come directly from my daily journal. I trust my family to forgive me for all that I've shared, because I can't tell this story without including the heart parts … and some of them are raw, and hard to swallow.

Part 1 / Part 2 / Part 3 / Part 4 / Part 5 / Part 6


refocusing the flame


March 15 / Working with M was the cherry that came after caretaking. Nathan has eaten part of it.

March 17 / Bawled in pm … Letting go of “needs”. Long ago loss of church (we called it meeting) as support and home, 4N405 as home, Mom and Dad as home, land requirement as home … letting go of a need/want for all of that in order get rid of the holes, and feel whole.

It's clear that in the thick of things (sorry Nathan), I wasn't all about trusting and accepting and doing things out of love, there was still a lot of I Want and I Need and I Deserve getting in the way of going full steam on the good that was in front of us. Full steam was really half steam at this point, and we still couldn't seem to find a rhythm that worked.

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Michael signed up for a Sol LeWitt art install in LA in April. I knew it was right, but didn't relish the thought. The boys sadly gave up on going to TN for a camping trip, it just couldn't be worked in. Fynn started countless projects that stalled for lack of help from his parents. Cousin Ashriel came for five days, and he and Paul helped Douglas belatedly celebrate his 17th birthday. The deck re-do got underway, and Dad came over often to help. Nathan finished up his work, and headed back East.

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The boys got roped into the cover-the-floor/clean/scrape/power-sand/spack/hand-sand/touch-up/vacuum/clean/paint routine on every wall and ceiling in the house, and did a lot of yard work and deck work too. Mid month, the deck was looked at by Bernie (our architect friend, the kind that spends all his days off helping you with your projects and then tries to take you out to dinner) and the half-fix we'd been pursuing was deemed unwise. The deck was ripped out down to the piers, and started over. I painted trim and windows till my eyes crossed. Menards started feeling like a second home, and the receipts piled up. In sync and full steam or not, we were making real progress.

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Martha was in town when her birthday rolled around in early April, and she sat with Mom that morning. I chose to go to church with my family, and most folks stayed around for pot-luck dinner afterwards. Dad went straight home to be with Mom and Martha for lunch, and I felt a strong urge to do the same, so followed him back to Park Ave. Mom didn't seem to be feeling well, and was reluctant to eat much. I fed her while Dad ate, and the four of us sitting around their small kitchen table filled it up perfectly. I didn't know at the time, but I believe it was the last meal she took at the table. She started sleeping more and more, and wasn't really into eating or swallowing much. Dad realized she was hitting the “all sleep” stage, and fought it a bit just to make sure. We were back to where we were three months ago in the hospital … sad, torn, and getting realistic about her prognosis.

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Stephen took the lead in getting funeral plans started, doing lots of research, and organizing things to share with Dad when he was ready. My very first reaction was “aren't you assuming a lot?” but I very quickly became thankful that he was taking the lead on it all, and saw he was clearly right that Mom's time wasn't too far off. Martha decided not to go back home, though she'd only planned to stay for a week, and we started showing up almost every evening at Park Ave for a sing around Mom's bed. The fact that she was at home, and all of us kids were there, made it all so much nicer than it could have been.


April 16 / Mom tried to purse her lips for a kiss!

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I started spending most of my days at Park Ave too, and Rene adjusted to feeding increasingly unpredictable numbers of people. We all were softer, and sometimes edgier too, depending on where we were at in our processing. Every day I wondered if this was the day I should spend the night, just in case it was her last.

April 17 / Read to Mom my friend Hannah's vision of being presented in heaven to her Father. Cried.

April 19 / She woke up a tiny bit. Last day she was up in the wheelchair.

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On the 20th, I stayed the night in Mom and Dad's room. She hadn't been awake all day, and seemed to be completely unresponsive. Once Rene got her as comfy as she could in bed, on her side to ease her rough breathing, Dad and I shared the watch. I spooned with Mom all night in her hospital bed, watching her breathe. “Can you not watch with me one hour?” playing through my head. I was utterly exhausted, and dozed on and off. Woke Dad at 5 when her breathing got really shallow, and we watched her till the sun came up, wondering if she'd go as it did. She didn't.

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Mom skipped a few breaths in late afternoon, then was once again steady all night. I tried to watch with Dad, but we were both so exhausted he decided we should just go to sleep, and trust that she'd be there in the morning. She was. I slept in the chair, but from 12 to 1am I perched at her side and watched. I was reminded of Douglas' birth. “When will it ever happen?” This too was a real struggle for the energy to see it through.

April 22 / Harder and blurrier and clearer at the same time. Why is she still here? So close but in limbo. Hasn't been responsive for three days now. All in a turmoil at the house. Dad took the chair and I fell asleep in the bed next to Mom, at some point managing to wake Dad with my snoring. Without his hearing aids, he at first thought Mom's breathing had changed!

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I dreamed that I was in a concrete room/hall at the corner of an industrial building, and there were people milling about but no seats. Fynn's cat Sparrow (a skinny version of her) was wandering around people's feet, and I realized someone was putting out food for her … oh … there it is. I go to look, and realize it's her brother Edmund's severed head (body eaten away but no blood) and he's still alive and not suffering. Just
helpless. Ugh. I didn't pet him, how can you pet just a head? I wanted to find Michael so he could put Edmund out of his misery, but realized that killing a head is harder than a body. Crush a skull? Distress. Woke up disturbed, but more so than I was in the dream itself. Fear of interpretation I think.

Mom was clearly Edmund, and I took it as confirmation that she wasn't suffering. That she was food for her sibling? That was a little harder to see, but we'd been wondering if Mom was hanging around to see her sister, who was due to arrive the next afternoon. I knew it would be very hard for Aunt Charlotte to see her that way, after not having seen Mom for over a month, and the huge changes in her during that time … yet perhaps it was necessary for some reason? Mom kept herself close for almost her entire life, and didn't really let that many people all the way in. She loved deep and hard, but didn't express her affections verbally to any but Dad really (oh those letters!) and yet we knew we were all well loved, and very well served. Her primary love language was acts of service, and birthday cards of course. To hang on the edge of life for a few extra days to see her sister? I think that fits her character perfectly.

Of course, when she didn't let go within an hour or two of seeing Aunt Charlotte the next day, despite even shallower breathing, I began to wonder. Now what? Don't we get to see and understand all the reasons why she's still here? The nurse came, gave her a bit of morphine, and said she could go anytime. I was fraying at the edges and desperate for sleep, and went home briefly to connect with my husband and boys, but left again feeling even more fragile than when I'd arrived. Somehow God lifted me up during the drive back, and I arrived back to Park Ave with a fresh shot of energy.

The 24th was another night spent curled up in the easy chair at the foot of the bed, straining to watch Mom's chest move as her breathing was so quiet as to be inaudible, especially over the oxygen that was on 24/7. The relentless focus on her state was exhausting, though strangely exhilarating too, and made it difficult to think about anything else. Once again, tunnel vision. We all spun in circles, trying to finish the plans and lists and documents that were going to be needed for her funeral, and all the people that might want to come to it. A pile of things that all hinged upon her death, which was closer than it was yesterday, but still unpredictable and unknown. Practicality and chaos bouncing off the walls, sometimes in the same room in which she was lying unmoving and unresponsive, her spirit still inhabiting the body that she could no longer control in any way.

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The next morning, a Thursday, the watch continued, while Michael and Bernie were still madly working on the deck over at the old house. Only so many people can sit vigil, and as many as could were still going about their regular daily business. I went home for dinner with the boys, and realized how fragile they were. They knew what was coming, and found the whole scenario unsettling and hard to handle. I came back to Mom's labored breathing, and positioned myself in her room again. Others came in and out, caught naps, checked in again, and she was given a dose of morphine to try to ease her breathing. When Stephen checked in a second time, and didn't leave, I slowly realized that this was indeed the night. By 10:30 the room was full, with Dad, Stephen and Rene, Paul, Uncle Bill and Aunt Charlotte, Martha, and I. Michael joined us around 11. There were a few quiet songs, intense silence, and incredible focus. I held her right hand, stroked her arm, and told her in my heart to let go. Her face was turned towards Dad, and I watched him watch her. The emotions held in every furrow of his brow, move that he made, and breath that he took … remembering them now still takes my breath away.


The focus was hard to maintain, and my mind jumped around like crazy. “Cup of tea after? How is Aunt Charlotte doing? Did I make too much noise? Is Rene OK? Remarkably OK. My back hurts. I can't see her eyes at all, and am both glad and sad that I can't. Martha must be missing Tom. The air is filled with slight electricity. I can feel the hum.” It started to pour rain outside. Her body jerked several times, and her breathing paused here and there. “This is really really it! She's at the very last few minutes of life. She's almost free! She will see Him! Be whole! Be light!” Alternating smiles and tears. Slower. Shallower. Longer pauses. The longest pause … with nothing at the end. Dad closes her eyes. Stephen checks his watch, 11.21pm. We all draw in a breath, almost willing her to do the same, and feeling the incredulity that we still can, and she can't. She's crossed over.

Dad says “Let's pray” and does. I open my eyes after a few words, not able to stop watching her neck. I see the tiniest flutter. (I don't process until a bit later that I don't think she quite let go until he did. I am stunned, but not surprised.) He finishes thanking God, and we all do whatever comes into our heads. I say “Welcome home Mom!” to her still body, lay down her warm hand, kiss her cheek, give Dad a hug, and slowly walk out to the other room.

She is gone. Immeasurable relief and so much joy for her. Awe at the experience. At getting to walk her to the very door. She is Home.

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The next phase begins.

Tea is brewed (I wasn't the only one with the thought), calls are made, Dad is left alone with her. The hospice nurse gets lost, and arrives very scattered and out of sorts. I go back and sit with Dad for her visit, and stare at Mom's body, marveling at how it's already started to change. The nurse is very kind, but off kilter. She never quite recovers, has to be called back to remove the forgotten catheter, and is still there when the funeral home director arrives. Perfunctory condolences are given, details discussed, funeral times set, and the room is somewhat crowded and chaotic. Unused hospice supplies are being handed to the nurse to take back, she is reaching behind the funeral director to grab them, the funeral director is asking about bed sheets and whether we need them back, and Dad and I realize that this is the moment where Mom's body … Mom who was always claustrophobic … her body is about to be wrapped up in a sheet and put into a colorful paisley body bag and zipped up. I feel glued to a horror movie, as Dad also realizes what's coming and tries not to look from where he's still pulling supplies out of the closet, but he feels what I'm watching ... the wrap, the lift, the slide, and the zip … and he can't help but glance over at the very end of it even as he's saying “That is something I DON'T want to see.” It's heart-shakingly final. Her spirit is gone, and her body has left the house.

After a few more details, I give Dad a big hug, knowing he needs to be alone but I'm heartbroken for him. Michael and I climb in the truck and head home, my first night there in six days. I am motherless.

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gold tried in the fire : part 3 / sifting the ashes

bethany

This is my story of the last year, told in six parts. Paragraphs in italics are my dreams, and the dated snippets come directly from my daily journal. I trust my family to forgive me for all that I've shared, because I can't tell this story without including the heart parts … and some of them are raw, and hard to swallow.

Part 1 / Part 2 / Part 3 / Part 4 / Part 5 / Part 6


sifting the ashes

We got the house tidied up from the whirlwind move that left things all over the place and drawers half emptied. We decided that yes we were taking the camper with us to the beach, so there was an epic sort and removal of the majority of the things and projects the boys (well, Fynn mostly) had flung all over the basement and any other surface that wasn't already covered. A daunting detangle in a space that had been in flux for weeks, and barely kept functional as it was. I also started to get glimpses of how much I'd buried that might start coming to the surface if I dared to relax, and worried a wee bit about that. To top it off, the weather was bitterly cold, and in attempts to empty our black tank before leaving we discovered the valve was frozen. Trying to thaw it with a space heater blew a fuse. I gave up. Our camper isn't built for winter use so the tanks are not heated, and we'd been doing everything we could to keep them from freezing and cracking. We finally pulled out from between the snowbanks on Thursday afternoon, staggering with tiredness, cold, and a dawning elation at being pointed towards the beach and Michael's family.

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Two Days on the Road : one freezing night at a truck stop pointed into the 5° air blowing at 20mph and leaving the truck running all night to power the furnace, one frozen and cracked sewer hose, one night in a WV campground that was miraculously open, one warm bourbon at the empty campground's non-empty bar, one tire changed for a couple of ladies stranded with their trailer, one late night arrival, one backing up of a very long driveway with the camper, one cozy tuck in between two huge beach houses, many hugs of welcome.

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Seven Days Together : one solo sit in the hot tub, one girls afternoon out, one CodeNames tournament, two family game shows, one beach photo session, two personal breakdowns, four ducks consumed, six fantastic meals that the women didn't have anything to do with, one forging demonstration, 14 life updates given, every day filled to the brim with intensity.

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Seven Days Home : one caravan to Raleigh, one fantastic pizza joint, two lovely days with Uncle Dick and Aunt Judy, three days in a familiar state park, one set of taxes almost finished, one lovely Fynn Fort, one night in a free riverside campground on WV land George Washington used to own, one speed bump at 30 mph, one smashed litterbox, one epic camper mess, one long gearing up to return to work, one safe arrival back at 2nd Ave.

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We dragged ourselves back to work; emptying the house one box at a time, visiting at Park Ave (the new abode), celebrating Paul's birthday, sitting with Mom on Sunday mornings, and starting to pick away at the overall renovations on the old house. The lists were daunting. Michael spent his days on working on the house, and his nights on communicating with family over some subjects kindled by the time together. I'd assumed for years that Michael and I would be the ones dealing with the cleanout and fixup of 2nd Ave, and Dad had confirmed that in the fall when the decision was made to move them into Stephen and Rene's place. I love working with Michael, and we'd both been looking forward to this for months. So why were we having trouble getting up to full steam ahead?

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The cumulative weight of the first six months in Chicago wasn't entirely lifted in the two weeks we'd been gone. I'd barely scratched the surface of anything emotional to be honest, and had come back to more adjustments, endless decisions of how to get rid of things, a preoccupied husband, and a daunting list of things to accomplish. There were more social opportunities now, which were lovely, but we both struggled. Part of the difficulty was due to the transition from a tightly structured schedule as to my responsibilities to Mom and Dad (pre vacation) to a family life with a day job (post vacation), and the resulting re-negotiations of how decisions were made, balanced, and executed. The focus was no longer so narrow, and the emergence from tunnel vision a bit blinding.

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We finally found a working groove, got going on spacking and sanding and painting, and Michael's brother Nathan showed up to join the fray, bringing his very welcome electrical and plumbing expertise to the stack of lists now living on the dining room table. The lists that were partly buried under a dish of keys, piles of things to go to Park Ave, envelopes of photos to sort, boxed up teacups to mail, and things to get Dad's input on the next time he stopped by. We sailed jerkily through the next month and I struggled with some resentment at sharing Michael as my work partner, and deep sadness at old issues rearing their heads.


March 1 / Stephen to Mom … “Mom, you raised three little pigs …” Mom “No, I certainly did no…!” … her most coherent response in months!

March 2 / Dreamed I was watching and caring for Grambie

The Sunday mornings I usually spent with Mom were delightful and quiet. Most often just the two of us, though sometimes Michael came along. I came to fully appreciate the changes in our relationship that had come about during her care, and really enjoy the closeness. She wasn't super responsive, but still reacted to things with her eyes and the very occasional word, picked up and ate small snacks with her increasingly gnarled fingers, and listened to stories and music. I'd tell her things, and assume that she knew exactly what I meant. The painful truth was that as fiercely as I'd loved my Grambie (Dad's Mom) during her life, I hadn't felt that same fierceness for my own Mom until the last six months. It made quiet time with her all the sweeter.

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March
3 / Dreamed about an eight-ish year old girl, a “princess”, being driven down a road in a cart, surveying. She saw groups of women in funny handmade green suits walking across fields. The princess character sees them. Freezes for a second, then resumes the ride but is changed. The ladies see her and are a bit wary, but are not threatened.


Being back in Addison, working in the house I grew up in, and temporarily in a very similar social circle to the one in my teens and 20's, was a bit of a mind flip. I'm no longer the same person I was in those years, the one who believed that other people had a right to judge everything we had, did, and wore, because a good bit of our income was based on donations from folks wanting to help out Bible Truth Publishers, where my Dad worked (and still does). I felt I had to always be useful, helpful, and an example to others of a holy and modest Christian. I had to help my family be worthy of the charity that we accepted.

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I built that self image on my “approval ratings”, and so never wanted to disappoint anyone, especially not my father. I wanted to be all the things I was supposed to, but the internal dichotomy grew between the image I tried to project, and the person I was covering up in the process. I grew roots of worthlessness and unworthiness, because I could never live up to the standards I set for myself, or felt were being set for me. I tried to be more liked, more loyal, more humble. I also got somewhat proud of how unworthy I was, though I labeled it as piety at the time.

I believe my identity now, at 48, is closer to the 7-year-old who moved to Chicago in 1978 than I've been for nearly 40 years. That girl was confident, rather outgoing, self-assured, happy, and a bit wary of change. She didn't have a self-image to live up to, but knew who she was, and didn't shy away from it. The shift really started to take hold last spring.

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A few months before we came to Chicago, I had a dream. It was triggered by having a friend help me dig up the unworthy/worthless roots, which set off a cascading realization as to where so many of my defaults came from. My identity was not rooted in who I was born to be, it was based on what other people thought of me. A slippery slope for sure, and one that I'd scrabbled on for most of my life. I knew in my heart that my true freedom is being unafraid, confident in knowing that I'm loved and approved of by the God who made me (thanks to Jesus), and that love is a gift I was born to share. Divorcing myself from the deep need for my fellow humans' approval was daunting though, and I had to have a little help in getting the process started.

I dreamed that I was in a slowly moving and loosely knit group of people, no known destination or purpose or scenery. Only person I knew was Michael, and I didn't see him but knew he was there. I became aware of a slight warmth and fullness growing in my abdomen, and realized it was pooling blood ... and that I was internally bleeding and it was going to kill me. There was no distress or pain, just curiosity and a sense of very limited time left. I rather enjoyed the feeling, mostly out of curiosity, but also found the warm belly to be comfortable. I thought almost idly of heaven, and thought That Will be Nice, but didn't focus on it.

I started to feel like maybe there were some people I should talk to before I died, and had an itch to call my parents. I don't know if I did or not, nor do I remember any words being spoken at all, but the feeling passed. Possibly because I realized the end was coming soon. I had a more urgent desire to talk to my cousin, and Michael helped me find a room off to the side somewhere where there was a desk and access to a phone somehow. I just made it in the room and into a chair, but could feel my life ebbing away. I had to acknowledge that I didn't have the strength to call and talk, and felt very slightly agitated about that.

I don't remember dying, the dream just ended there, and shifted into a different one in which I ran into a couple more people that I thought I should contact. What came clear to me was that the blood of Christ was filling me up to the point that the false identity (worthless and unworthy) that I'd been building on had to die. I had to be reborn, in my heart and my actions, as nothing more than a child of God, no strings attached. It left me feeling light, strong, and peaceful. I was still drying the wings of this newfound freedom when we got to Chicago in August, and I dove back into the bosom of my birth family.

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That's a lot of navel-gazing digression, but I had to lay it out to get to my point. Diving in and being very quickly handed the reins of responsibility, by my Dad, for something I'd never expected to have to do, and then not getting one single iota of judgment from him for any decision that I made, most of which directly affected the life and well-being of the most precious-to-him human on earth? It was my father, and my Father, saying to me that if you do this for me, and for her, and for love, that is all that matters. I do not condemn you, shun you, or judge you as unworthy for any decision that you make. I just love you. There will be gold too. Oh yes, there will be gold. It's not about earning approval at all. It's just about doing the good that's put in front of me, with everything I've got, and trusting the results to God. What immense relief I find in that, and stronger wings too.


As John Prine puts it …


Well I'm thinking I'm knowing that I gotta be going
You know I hate to say so long.
It gives me an ocean of mixed up emotion
I'll have to work it out in a song.
Well I'm leaving a lot for the little I got
But you know a lot a little will do
And if you give me your love
I'll let it shine up above
And light my way back home to you.

Cause you got gold
Gold inside of you
Cause you got gold
Gold inside of you
Well I got some
Gold inside me too

Back to Part 2 / On to Part 4

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gold tried in the fire : part 2 / turning up the heat

bethany

This is my story of the last year, told in six parts. Paragraphs in italics are my dreams, and the dated snippets come directly from my daily journal. I trust my family to forgive me for all that I've shared, because I can't tell this story without including the heart parts … and some of them are raw, and hard to swallow.

Part 1 / Part 2 / Part 3 / Part 4 / Part 5 / Part 6


Turning Up the Heat


Nov 29 / I dreamed that Cedar found my purse, which had been stolen, but wouldn't give it back. I had to poop in public.

The number of people who sent cards, prayed for us all, thought of us, brought meals, worried about my sanity, texted, called, stopped by, and just plain lifted us up, were legion. All of it was lovely. I didn't reach out at all though, rarely answered the phone, and pretty much kept my head down. I felt I had to in order to survive, and that reaching out and touching the world beyond my immediate one was dangerous. It made me lose focus … and yet I needed it too. My regular identity and role in life had all but disappeared in the circumstances, and Cedar, knowing me intimately, was holding on to it for me until I needed it again. Giving me an anchor, a touchstone, a place to find myself again. The tricky part was knowing that I would not come out the other end of this experience the same. The fire would refine me too, or at least get rid of some of the crap. My weaknesses would be exposed, even as I learned and grew.

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Managing Mom's care, and the disbursement of all the household possessions, was not a one person job. In all the intricacies of those participating … family interactions, hired caregivers, meals together, and the ever-changing needs of both Mom and Dad … exposed weaknesses abounded, many of them mine. Poor or incomplete communication, blindness to the things our arrival had taken away from others, martyrdom, head-down plowing ahead woven together with control issues, pride, holding grudges, wrong assumptions … just a few of mine that surfaced. Those of us that were together the most often, Stephen and Rene and Paul, Martha and Alex, Michael and I and the boys, and of course Mom and Dad … we found a lot of rough edges, had a lot of hard conversations, and learned to understand each other immeasurably better. It wasn't easy though.

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You can't go through intense emotional experiences without some fears and insecurities surfacing, and when we sloshed into the pools of loss that scattered behind Mom towards the end, it got rather slippery. We Rules are pretty adept at buttoning up our feelings, and at least appearing to be stoic in the face of great internal upheaval. We grieve behind closed doors. Hayhoes (Mom's family) seem to come with the wash Warm setting, and are pretty good at letting the tears out when they need to. Neither family, in my experience though, is likely to willingly name the elephants in the room, or address any rough subjects head on, at least not without a fair bit of prodding. We keep things pretty close, and soldier on. There's also a good dose of Wait and See, which means that you take fewer preventative measures than you do remedial ones. This can be hard to marry into. Thankfully though, those in the family who were not born with the last name Rule have introduced a healthy dose of plain speaking and It's Worth a Try! into the mix.

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With these inherent biases, I'm guessing I managed to step on Rene's toes more than anyone elses, and my insensitivity and head-down blinders caused me to offend her multiple times. One interaction, which I hope she'll forgive me for talking about, involved a phone call in which I took ownership of some project that I thought would make things easier for her, not realizing that it was yet one more thing that used to be her purview. She felt slighted and upset, and I got equally emotional on my end. We retreated to our corners to reflect, and when we reconnected a few hours later, we both were able to see each other's hearts, and vulnerabilities, and realize that assumptions and fears had sabotaged the entire exchange. She helped me see that taking more responsibility isn't always appreciated, and that not explaining myself better was a big hindrance to understanding. I was beginning to see in all my interactions, with everyone … that if I could see the motive behind a statement, and address what was emotionally driving the comment more than the words themselves, potential conflict often evaporated.

(I find it extremely amusing that just as I finished typing that paragraph, a friend texted me to ask “Is it true that the way Stephen used to breathe would bother you when you guys were younger?” I think I still have some sensitivity issues myself!)

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Without getting into any more nitty gritty, over the course of our time in Chicago God worked for good in every single relationship that I had, and could see. Some hugely, some quietly, some loudly. He smoothed edges, prompted realizations, healed breaches, poured on understanding, illuminated fears, fostered empathy, grew patience, taught frank communication, mended breaks, and removed blocks. He knit us together in ways that I didn't quite see coming. No one gave up, and everyone gave it their all. We all found more gold, and were Seen, and loved.


Dec 2 / House emptying progressing, and the reality that it won't be here the next time I come is hitting hard.

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Dec 9 / Dad determined to get Mom in the car with the Hoyer lift. We do, and he takes her for a ride to Stephen and Rene's. She was very pleased.

Dec 14 / Dad at the dinner table shared his thought that buying gold tried in the fire … some of that gold is Mom, as she is now. I cried.

As the month rolled by, it started to hit home what an incredibly stable presence Mom was. Her character didn't really change despite the Alzheimers, other than a period years ago where she was still talking a lot while her filters were going, and did some uncharacteristically blunt speaking of her mind. She otherwise had no real shifts in her demeanor, in almost vivid contrast to the rest of us. No anger, fighting back, arguing, or complaining. She quietly and happily kept on … surrounded by our fussing, dancing, swallowing, worrying, rearranging, second-guessing, and stressing. She was the steady thread that we tangoed with, but never knotted. Her presence was unflappable.

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By mid December, the fact that Mom was in a downward slide was pretty clear. She started having occasional seizures, and though short, each one took a very visible toll. She was out of it a lot more of the time, drooling frequently, and sleeping longer. Getting responses from her was growing more and more difficult too. As she declined, I struggled with the responsibility. Dad had clearly given me the job of decisions regarding her care for the time being, and he was always careful to not second guess whoever had the job. The worse she got, the fewer options I had to work with. By the end of the year, she was clearly sick, but would perk up for a day here or there, making us think she was on the rebound.

Dec 30 / Everyone off. Sick, tired, scared. Dad and Mom stared each other down for awhile, and she cried. Real pain.”

Jan 2, 2019 / Mom miserable. Could quiet her with “God loves you. Christ is in your heart, the Spirit in your belly.”

Jan 4 / Mom won't drink. Scared that I'm not able to help her. I told Dad that I'm out of options.

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On January 5th, after a nudge from her sweet Saturday caregiver Annabelle, and discovering that her blood pressure was dropping, we all agreed she clearly wasn't in a position to be helped at a clinic, and needed immediate intervention. I called 911. They arrived within 5 minutes, and the paramedics got her out the door, down the ramp, onto a gurney, and into the ambulance in a sudden rush that left me almost shaking. Dad rode with her to the hospital, and as they pulled away I stood on the sidewalk with Michael's arm around my shoulders, rather stunned by the sudden and enormous feeling of relief. The responsibility was off of my shoulders.

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She was stabilized in a few hours, successfully treated for sepsis stemming from a UTI in a few days, and tested for her ability to swallow with no success. I spent most of each day with with them in the room, reveling in the times that it was just the three of us, with no other visitors, though family came often, and others too. It was lovely, quiet, and peaceful, and she was awake and more alert than she had been in the previous few weeks. One afternoon, Dad coaxed her to say “I love you” back to him, and she clearly tried to respond. We all processed the thought that there was nothing anyone could do though, and that she was not likely to rebound in any real way even though her infection was gone. Letting her go. Hard, but at peace.

The staff started politely working to boot her out of the hospital to some form of home care or hospice, and Dad began working on his own to get her to swallow again. We'd been trying for days to get her regular Dr to return calls, with no success. On Friday afternoon, after murmurs of three or so days of waiting to get into a hospice facility, and researching home health options on our own, Dad's favorite doctor came in. When she heard that we hadn't yet gotten a call back from Mom's GP, she asked his name, said she'd go call him, and came back with the news that Mom had a bed at the nicest hospice in the area, and that she'd be moved there in an hour! It just so happened that Mom's GP was the new head of the facility … God in the details for sure.

She was picked up and moved into a huge beautiful room with a double hospital bed, and every amenity you could think of. Dad moved in with her. The next morning they took her off of all of her meds, and her doctor explained that there was nothing more to do but make her comfortable. Hearing it from the him made the remaining bits of hope fade, the situation clearer, and hearts heavier. There was acceptance, but it was painful.

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It only took a day to understand the rave reviews I'd heard about hospice, and wonder at the spirit of nurses who worked there day in and day out, as they bore no resemblance to the ones at the hospital. The focus is on helping folks die with dignity, not fighting to keep them alive, and the peace that permeated the place was tangible. No rushing gurneys, loud noises, beeping monitors, or lights on all night. The only beep and scurry I ever witnessed was a 'bed alarm' when someone had managed to get up that wasn't expected to and they feared a fall. The staff truly take cares of everything, leaving you to just enjoy being together.

If you ask though, they'll tell stories … the lady who lived on chocolate pudding for four years, or the one who walked out to the nurse's station to say “I can't wait for my aunt …” “But she's coming tomorrow!” “No, I can't wait.” and walks back to his room with perfectly good vital signs, goes to bed, and never gets up. There were more, and I became fascinated at how the nurses maintained their empathy and kindness in the face of such constant death and loss.

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Mom's brother Danny and his wife Chris arrived the day she got moved, and stayed for several more. Danny got her to smile. Dad got her to sip water with a straw. Then slid a few bites of baby food down her throat. Hope sprouted. The nurses got Dad to eat, despite his assertion that he wasn't hungry. Visitors came and went. Kleenex abounded. Family sings with Paul or Michael playing guitar, the nurses apologizing but shutting the door as we were a bit loud. Stories. Laughter. Mom kept eating. Now there was hope that she might be well enough to transition to home hospice, and the mood in the room clearly shifted. It also became clear that we were the anomaly at our end of the hall, the room next door had changed occupants almost daily, and it was hard to watch.

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It was confirmed Mom could move by the weekend, and that “home” now meant Stephen and Rene's place, where the renovations to the in-law apartment were being frantically finished. The final plumbing was whipped together by Michael and our friend Bernie. A whirlwind move of furniture and basics was orchestrated by Rene, several others pitched in, and we managed to bring enough touches of home and pictures and things over that by the time they released Mom two days later, she had turned it into a most warm and welcoming space, with everything they needed already put away. I rode in the ambulance this time, and it started to hit me as they were unloading her and wheeling her into the house. This is it. They are never coming back to 2nd Avenue, that era is over. A lump lodged.

We all had dinner together that night, with Mom pulled up to the table in her wheelchair and even chewing a few bites of chili, and it was a gathering I'd never expected to see happen again. Delicious in every way. The hospice nurse came and went, and I helped tuck Mom in one last time before we left, forcibly swallowing my heart. Our bedtime routine had always been the sweetest part of the day. As we were walking out the front door to go home to the camper at 2nd Ave, Stephen smiled and said “Have you felt the transition yet?” In that moment the final piece hit home … I'm relieved of all responsibility for them both. A bigger lump, another swallow, a bittersweet relief. The baton was passed.

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The transition was a hard one for everyone. New roles, new boundaries, changed routines and needs and “wait but whose job is that and how are they going to do it?” Everyone bent over backwards to make it as easy as possible, but there were a lot of changes for everyone, and it took weeks to get it all sorted out. For myself, looking back it reminds me a bit of my feelings when I moved out of my folk's house after college, and into my own place. I didn't go 'back home' for a meal for months, working to establish my independence and territory and way of doing things. My folks clearly felt it, but didn't push me in any way. This was a wee bit like that, from the other side of the fence. Knowing that I needed to keep my hands off and my mouth shut, it wasn't my puzzle to solve or responsibility at all, and I'd just muddy the waters if I tried. We didn't wait months to visit though, and fairly quickly got used to whose living room was used for what, when doors were to be open or closed, and how to navigate visiting in a home with two households in it, that overlapped in so many ways.

I had plenty to do anyway, there was more than enough work at 2nd Ave to keep me busy and out of trouble … and we had a trip to plan! One of the things that I'd had to mentally give up on was going to the Vedder family reunion, which had been scheduled to start on Jan 26th in NC. Somewhere in Mom's slide in December, I'd tearfully let go of the assumption that I'd make it there, and left it that if God could work miracles, and let me be free to go without leaving Mom at death's door or being in danger of missing a funeral, then that was great. I did not, however, see any way in which He could pull that off. It clearly looked impossible. She ended up in the hospital on January 5th, and I mentally and guiltily calculated the possibilities that she could die and a funeral be had before the 26th, and set it aside. She moved to hospice on the 11th. I went through the same drama in my head, still not seeing how it might work. I wasn't counting on it, no, but I certainly hadn't quite let it all go, had I? It wasn't until the doctor OK'd her move to home hospice that I allowed myself to believe the trip could, and probably would, happen. She was happily settled in their new home by January 19th! A miracle for sure.

Back to Part 1 / On to Part 3

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gold tried in the fire : part 1 / stepping into the furnace

bethany

This is my story of the last year, told in six parts. Paragraphs in italics are my dreams, and the dated snippets come directly from my daily journal. I trust my family to forgive me for all that I've shared, because I can't tell this story without including the heart parts … but some of them are raw and hard to swallow.

Part 1 / Part 2 / Part 3 / Part 4 / Part 5 / Part 6


I'm sitting in my little bedroom in the camper, on my scratchy but oh so delightfully yellow bedspread, with Sparrow grooming herself behind me. The AC is blasting, the Kentucky campground air outside is swampy and barely breathable, and I'm somewhat nervously munching apple slices and CheezIts that I've confiscated from Fynn's bed. Where do I start?

Dad had a heart incident on August 3rd of 2018 and ended up in the hospital for 18 days, getting a quadruple bypass and a new valve. Mom was already deep into her Alzheimers, and lost a lot of ground without her anchor. We arrived to help out on August 10th. After caring for Mom for almost five months in their home, she went to the hospital on January 5th of this year with a bad infection, and then hospice for a bit, before she and Dad moved into my brother Stephen's home with the home hospice program. Mom passed away on April 25th, at home surrounded by family. We stayed around to fix up their old house for a few months, and just left Chicago on Monday, July 8th.

I've spent several of the days since then re-reading my journals that cover the nearly 11 months we spent parked in my parents' driveway. We were there long enough that all Google streetview maps currently include our truck and camper, and Mom's wheelchair ramp up to the front door. I'm not sure how soon those images will be updated, but likely not before the house is sold, and I like to imagine it occupied by another family looking to raise their kids on a dead-end street chock full of other children and friendly neighbors. Walking out that door for the last time on Monday left me choked up, full up, and so stuffed with feelings that I had real trouble getting out the last word, as I turned around and whispered into the still air before I pulled the door shut … “Thanks!”


stepping into the furnace

The alarm rings in the camper at 6:30. I don't dare hit snooze. I ask God to help me get out of bed. I'm not sure I can, without help. I'm scraping bottom, and I've just woken up. I feel overwhelmed before I start the day. Blinders on, tunnel vision is the only way through. A laser focus on what is in front of me, and nothing else. Mom and Dad are in front of me, my boys are in the wings and I can see them with my peripheral vision. My husband is keeping me tethered to some kind of sanity, and God is keeping me alive. This is a completely emptied-of-myself kind of dependence that I've never experienced before.

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As I mentioned in my last post (last October) there was an overwhelming feeling at the start that this was mine to do, and that God was pulling me through. While there were a few blips in the following months that made me sometimes question if I was doing more than I could or should, there was no shaking of the certainty that God had my back, and that His hand was in every single detail. It was up to me to get out of my own way and simply do the good that I could see in front of me … stomping on any tendrils of worry that tried to grab me, and addressing the roots of any fears that surfaced. Most of the extreme emotions were cut off at the knees by that last tactic, and any that weren't either erupted as frustration or anger, or were “stuffed back in” to be addressed later. There didn't seem to be any time for meltdowns, walks, headbanging, or writing. Many days, there wasn't even any time or energy to talk to Michael at the end of it.

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Aug 11 / I have to keep things glued

Aug 13 / World shrinking to a pinprick of focus

Aug 21 / Dad's home!

Aug 25 / Felt frazzled, and like I was skidding down a hill, and getting more compressed as I slid.

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Sept 25 / I dream I'm in NYC on the sidewalk, and my big black motorcycle is nearby. I wake up and it's covered with white fluff, out of which pop two sheep's heads, and a cat, who had all been nesting in the fluff. The cat hissed at the sheep, and they jumped down and ran off. I was upset with the cat, I'd wanted to pet the sheep!

Learning to let go was a continual battle. Over and over telling myself to let go of expectations, the freedom to choose, mobility, that bit of time to do anything more than what was directly in front of my nose. Any hopes or dreams or plans, or things I thought I deserved that I clung to … they inevitably made me restless, frustrated, and wishing to get back into a state of peaceful acceptance. I chased my own peace away.

Mom had every single one of those things taken away from her, slowly, relentlessly, and thoroughly. She never complained. She accepted the changes, without any visible protest. If Dad said she couldn't anymore, she didn't. Ok, there was one exception I saw a couple years back … the removal of a bag of candy bars, and her retrieval of them, putting them back by her chair with a mischievous and slightly defiant smile. But there was no fighting against the indignities, the changes, the losses, the turmoil, the steady and thorough destruction of any semblance of choice in her life. The removal of keys and shopping and what to wear and who to talk to and where to go, how long to stay up and what to read …every single thing that she ever had any control over. Gone. Her mind, continually playing tricks on her, stealing the connections that let her say what she wanted, express her feelings, put a name to a face, tell someone she loved them. It all slipped away.

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Nov 4 / At the edge of sanity.

Nov 11 / Mom tried to say something as we were coming out of the bedroom. It came out garbled. She clearly knew it, and was horrified. Heartbreaking.

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Once Dad got home from the hospital on August 21st, the weeks that followed were strange and beautiful and hard for everyone. He felt his limitations physically, but not as much as he was told he might. He chafed a bit under the restrictions. “Don't cross your legs, don't use your arms to push yourself up, do your lung exercises, take your daily walks.” His desires outstripped his energy at first, and I watched him wrestle a bit with what he could accomplish in a day. He spent many hours going through files and papers and bits of stashed-away-life that were being pulled from cabinets and drawers and boxes in the basement. I tried not to give him too many piles at once, but there were always more waiting in the wings.

After he went back to work full time, the sorting was relegated to after dinner, and we had our routine down by then. I spent the evenings on the couch across the living room from his chair, Mom parked in between us in her wheelchair. He'd share things that he uncovered, show pictures, and tell stories. Then fall silent as he got lost in something. Mom would be looking at cards or magazines, turning her head at every conversation (and clearly following all of it), and smiling often.

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One Sunday afternoon a locked metal box surfaced that made him get a bit excited. He started scavenging around the house for the key, but came up empty. He was pretty sure it contained some correspondence he had deemed worth saving, most notably ALL the letters that Mom had written to him during their 16 months of long distance courtship and engagement. I remembered a desk tray with some small keys in it, came back with a pair, and sure enough they included the one he needed.

What followed was torturous and beautiful and incredibly painful. He pulled a letter out and started to read. Then another. And another. His face started to change. He got a bit choked up, and said “They are a bit like maraschino cherries, you can only eat a few at a time.” He then spent his afternoon “nap” reading too many, and getting up to take a sudden and epic walk in order to process things. To top it all off, a day or two later I remembered a box in the basement that I'd labeled “Dad's letters to Mom” when I came across it a few years before. I brought that up, and he began weaving together the story of those months of hope, love, and planning. They wrote each other almost daily.

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Over the next week, he would pull out a letter or two every evening (and sometimes a few in the middle of the night when he couldn't sleep), look to see what he'd written to her that inspired her responses, stare at Mom for awhile, read a sentence or two out loud, and then get lost again in the memories. He was hearing her voice, the one that she no longer had. Seeing her as she was then, in her own words, and falling in love with her all over again, exactly as she was now. She felt it. The way he looked at her, spoke to her, loved on her. It tore him up, and gave him intense joy at the same time.

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The slides and movies were uncovered a bit later, including the working-and-even-has-a-spare-drive-belt 1940's cast iron 8mm projector that had been his dad's, which was necessary to play those movies. The few that Dad really wanted to share were the ones he'd taken of us kids learning to crawl and walk.

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He got the projector set up one night, and called us all to the living room to bear witness to me learning to get up and go, with my siblings behind me cheering me on, and even demonstrating what I was supposed to do. It was bizarre to watch, and left me feeling a bit strange. Seeing myself at an age that I have no memories of. Mom, young, holding me. That bit really threw me for a loop. I was sitting on the floor next to her chair, and when the lights came up, it appeared that it got to her too. She had tears in her eyes, and seemed sad for the rest of the evening. How could she not be, assuming she recognized herself, young and happy and holding her child? Any moment like that, where it appeared that the veil was lifted and she knew her current state … those were the worst. So incredibly painful to see her knowledge, however brief, that something was desperately wrong. The relief (but torture too) when she'd return to happy but unaware.

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Nov 28 / I dreamed I was on a river boat and got separated from my family. The river ran into a building and petered out. I asked the clerk where I was … “Yesterday” was the answer. I go out into the courtyard to wait for my family to catch up, and while I'm there Maurice and Helen (friends from church) walk out, but they're both about 9 or 10 feet tall. Maurice is dead. I held their hands. I saw the boys arriving.

Trying to continue my roles as wife and mother, while being a daughter and caretaker, was never easy. The boys were told before we even arrived in Chicago that my focus would be on my parents, but the ramifications of that, coupled with an even more intense focus than I'd anticipated, made a huge shift in our family dynamics. It very quickly felt like I was on a track, moving at a fixed speed, while the Michael and the boys were drifting along somewhere just out of sight. During the first seven weeks, when he was working in Boston, it was even harder on the kids. They were fed at regular intervals (more regular than we've ever been, to be honest) but other than that, they (and my sister Martha's son Alex, who was there most of the time) were almost completely left to their own devices. They were shushed often, and frequently banished outside during Mom's nap. School work was done solo, they read books and plugged into media and fought with foam swords, made forts with Alex, played board games with Paul (my brother Stephen's son), and jumped to it whenever I hollered for help. Our family bedtime story, a staple since Douglas was a baby, didn't happen much at first, but was resumed once Michael came back.

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Martha had moved in for most of the first 4 months, and she was a delight to have and a rock of sanity. She was able to take the boys all out once in awhile, which was a great break for them, and spent the rest of her time helping with Mom, doing laundry and breakfasts and errands and groceries, and filling in all the things I wasn't doing to keep the household running. My sister-in-law Rene often pitched in with bringing meals, having the boys over, cleaning, and sitting with Mom when she saw I desperately needed a break. She and Stephen and Paul had moved in and cared for Mom for the first couple of weeks Dad was in the hospital, and then for at least another month Stephen came every morning and evening to help get her in and out of bed.

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Douglas really started stepping up his game as a helper too, making meals occasionally, and helping me with every transition and lift with Mom while Martha was gone for a week. He figured out the Hoyer lift once it arrived, and became an expert at operating it. The boys and I sometimes fit in grocery shopping together, late night WalMart trips, and a Starbucks treat every few weeks. I found enough oomph to just barely keep the household functioning, and it was an intense growing experience in my reliance on God, time management, and patience.

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I wasn't good at asking for help though. I never have been, and this situation was playing on my guilt strings more than some. As Mom slid deeper into Alzheimers over the years, and was needing more care, the question of which of her kids were going to do what was bandied about. Weren't daughters supposed to be the ones taking care of their Mother? Weren't we living a free life, and able to move in and take care of things? I felt it keenly, but at the time didn't see how I could move to Chicago and become her caretaker without bringing my family life grinding to a halt, and we didn't see how that could be a good thing. However, I felt badly that to date I'd done so little towards supporting Mom and Dad. This was my chance to do as much as I possibly could, and I was assuming that it wasn't a 'permanent' job, but pitching in while the needs were great. God had brought us here for this, and Michael and I were clear that it was for as long as we were needed. Stephen and Rene would be taking over when things stabilized, bearing the brunt of the care.

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The more time I spent with Mom, focusing on how to make her comfortable, happy, and occupied … the more the guilt strings faded. I wouldn't label it fun, but there was a deep and satisfying joy that flowed into the cracks. The pleasure of getting Mom to laugh, to smile, to connect, to light up. Holding her hands, lotioning her feet, washing her hair, bathing her body, singing her songs. Tempting her with food, reading her snippets of cards and stories, taking her on walks once the ramp was built, parking her on the back deck in the sun. Watching her light up when friends came to visit, sharing inside jokes that still tickled her funny bone, keeping her company in comfortable silence. Those things fed me, fed her, and brought my relationship with her to a point that I'd given up on reaching decades ago. I'd never tried hard enough, and maybe she wasn't ready either. Being reduced to having zero input in her own life though, she had to remain open to anyone and anything that came her way. God parked me in her driveway, even tossed me into bed with her the first few weeks, and then put me in the position of being, for awhile at least, completely responsible for her care. A total role reversal from that 8mm movie we'd watched together.

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But the love? It grew. It filled the cracks, the little holes left by things I wished I'd told her, moments we'd never had, depths we'd never plumbed. Ways we'd never connected, or even tried to. Once the words weren't an option anymore, at least for her, I found myself looking for every other signal I could find as to what she was thinking or feeling. It worked better than words … made me dig even deeper to see her spirit, catch that twinkle, or see the stubborn silence when she was talked down to. I learned to see her. That gift alone was more than enough to make me almost horrified at what I would have missed out on, had God not given her Alzheimers, and me this job. Pure gold. Refined in a fire that left me raw, emptied, and shaken.

(And why were Maurice and Helen in that dream, in Yesterday? Maurice died of cancer many years ago, and I remember to this day, with regret, that the last time I saw him, walking slowly and clearly debilitated from his disease, I didn't run up to him and give him a hug, and try to See him. I missed my chance.)

On to Part 2

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