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.
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.
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.
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.
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!)
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.
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.
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.
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.
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.
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.
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.
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.
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.