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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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