"Sudden Caregiver," by Mary Lewis

Sudden Caregiver

Role Reversal 2014

Transition is the hardest part of labor, when the neck of the uterus dilates to its largest extent and the baby’s head enters it. Contractions stronger than anything you’d ever do on a bench press last more than a minute, and keep on coming. But it is the shortest part of labor, and ends when the baby leaves the womb behind forever.

Life transitions follow a similar pattern. There are rapid changes with little time to adapt to them, and then some other new reality takes hold. We clench our fists to hold on to what was, before our fingers learn to open up.

I look across the breakfast table at Mom's bruise blue face that makes her look like a raccoon. A bump on her head looks like a half buried blue golf ball. She is so shocking to look at, I don’t most of the time.

She fell out of a flimsy outdoor chair in the garage while waiting for a taxi to take her to a doctor's appointment the day after Christmas. The driver found her on the concrete floor with a growing lump on her head, and took her straight to the ER. Nothing but an enormous hematoma, no brain injury. She then went on to the scheduled appointment for her cellulitis, and a little wax cleaning of her ears on the side. From home she called me in Minneapolis where we were spending Christmas with my son and his family, and sounded shaky. Maxxx and I cancelled the last two days of our trip and made it home through slippery snow in four hours.

Later I found out this was the second trip to the ER in two days. She'd called the day before, on Christmas day at four AM, worried about her cellulitis, and the ambulance came. While Santa was out there making his last rounds the ER examined her, found nothing wrong and sent her home in two hours, by ambulance again. She'd had no idea what time it was.

Leaving the farm 1994

I knew Mom was going to need live-in care, and that my life was about to be struck like a stage set at the end of a run, its pieces trashed or stored for use in some new construction. It was like that when I left the farm, the day after Easter, 1994, in the first car I ever bought on my own, a used Toyota wagon. Brandon, a new driver at 16, and 13-year-old Perry followed me in the farm’s GMC pickup, ancient even when Phil and I bought it when we started the farm, pre-kids. I don’t even remember what I had that was large enough to merit it. Everything in the little log house we built in the woods, including the boys, needed to stay there.

We drove to a small rented house in Canton, the closest town, which was right on the school bus line so they could visit easily. Only it didn’t turn out that way. Without me the farm needed them even more than before, so they rarely stopped by. I kept the promise to myself not to make them feel obliged to spend time with me, and I’m glad I did, but had I known the bus would pass by day after day, I never would have left in the first place.

It was a mutual leaving between Phil and me, and as they say, amicable; it’s just that I was the one who needed to relocate. Woody agriculture, a term he coined to mean perennial crop production that focused on growing staples from plants that are well adapted to an area, was his baby, though I’d thrown back and heart into it too. Hazel and chestnut culture for the Midwest started on this farm.

As transitions go, it was a multiple threat. A separation from my husband, from my kids, from my occupation, from the woods and the fields, from the house made of logs we had hauled by rope and pulley from the ravine below.

Return to Decorah

When we returned to Decorah after our Christmas trip, Maxxx and I found Mom sitting on the sofa, holding a warming ice pack to her head. Maxxx gave me a hug and said he’d do anything he could but I told him the best thing now was to let me help her on my own. Despite Mom’s disapproval of him, for no reason except that he is not a doctor, and he wears a skirt now and then, he has always been gracious towards her. Everyone else loves him though, and if I go to a party alone, people look over my shoulder for him. It is one of the jokes between us. A cartoonist who occasionally does standup, he's also a life-long-learner in subjects as diverse as chemistry, anthropology, and philosophy. He is one of the most original thinkers I know.

After Maxxx left I gave Mom a new ice pack and settled her on her side on the couch. I shoved a heavy stuffed chair next to it, to keep her from falling out. Then I made a meal of mixed veggies, baked potato, and fish. She ate well and seemed relieved I was there.

It was stunning how much she couldn’t do at that time. She needed help to stand up, to go to the bathroom, to get into bed. She could feed herself but couldn’t take anything out of the fridge. I was on a trigger pull for any chance that she might fall. Would she try to get up without my help? Every moment, even the ones between the dishwashing, the laundry, the nuking of oatmeal, was claimed. My old life was squeezed into a little place and every routine was different. It was like caring for a baby, except with an old person it is the beginning of a long slide down. An invitation to look at death.

After a few days I understand the burnout that 24/7 caretakers suffer. I get panicky when I can get through a whole day, and realize none of it was my own life. It can’t go on like this or there will be nothing left of me.

Telling the Boys

It was like that when I left the farm too, because then I also lived day by day, with no clear idea of what life would be like in a week or a month. Another odd similarity is that my senses took in everything, like a deer that needs to be ready with nose and ears, but isn't sure what's out there. Instead of the sound of a peewee at dawn and the rustle of my boys turning in their beds, semis roared along the highway. Instead of the darkness of the forest, a streetlamp burned all night outside my window. With Mom I was super aware from another room of the sounds she made, and bounded up whenever she needed to move from place to place, ready with water, food, a bowl to vomit in.

The day we told the boys that we would separate was a warm day in early March, the high spring sun making rivulets of water through the softening snow in the valley below the house. A Saturday, to give them time before returning to school on Monday.

We told them we needed to talk, and all came to the table where we sat in our regular chairs, which over the last few weeks I had made solid by re-gluing their shaky joints. I didn’t want to leave them about to collapse. How could we possibly say what had to be said? Weak with tension, I told them this was serious. No one moved. Then I said that I think they knew that Daddy and I were not getting along well, and there had been a lot of tension. Brandon nodded, Perry sat still. Maybe they knew what was coming. Though we had tried to keep the evidence of conflict between us from the kids, it was hard to do in a small house without walls.

I said I would move out, to a place nearby, so we could still see each other often. I broke down pretty early, hugged both at once, told them I loved them so much. Perry cried quietly without sobs, Brandon was serious but no tears. When Phil asked how Brandon felt, he said it felt weird, but he was not much bothered by bombshells. Phil said that’s because he’d already had one in his life, diabetes. Yes, said Brandon, and he found out he could live through it and it wasn’t so bad. We asked Perry if he wanted to say anything. He said, not much, we said fine, talk anytime you want.

Sudden Caregivers

I’ve encountered a new term, informal caregivers. A wife who cares for her husband with Alzheimer’s, a son who helps a mother with a broken leg, or a daughter who moves in with her elderly mother. They often feel overwhelmed, unable to control their time, disconnected from their old lives. One article used the term “sudden.” Now I had an identity, I was a sudden informal caregiver. After only two weeks of doing this, I understood the quotes from others.

“We lost our personal life… most of it depends on my mother’s schedule.”

“I used to be free. Now, I’m not. It’s the exact opposite.”

“If I’m at the supermarket and meet someone I know, I like to chat for a while. Not anymore. Now, I’m always in a hurry not to take too long…”

A Hike in the Melting Snow

The day we told the boys we were separating, I went out with them for a walk while Phil called a few relatives. We threw snowballs, sloshed through the stream, watched foam grow where the water sluiced past logs, found the dark line on the white snow banks that marked the highest water level from yesterday. A thin film of ice that formed at high water, now suspended inches above the receding stream, was the site of melting experiments. Perry made a hole through it just by the heat of his finger, and then formed a P around it with little bits of snow. The sign of Perry. Brandon said you can keep on top of the crusty snow if you step perpendicularly to the ground, so the force is also directly down, and showed us.

Perry straddled a log and inched his way forward on his bottom to cross the stream, feet grazing the foamy water. Then he stood on the opposite side and threw soft snowballs at Brandon, now on the log himself. That’s unwise, Brandon said, but by the time Brandon got across, Perry was half way up the ravine.

Brandon didn’t feel like running up it, because he was low on sugar. He and I sat on a downed elm while he had a juice. I pointed out the place of the first campfires Phil and I made while we lived in a tent, and the place way up on the north side of the valley where we harvested aspen logs for the house.

We followed icicle-smashing Perry up a muddy side ravine, and Brandon said Perry’s middle initial should be E for entropy. The whole world breathed change. The height of the sun, snow to slush to water to ice, back to water, all in motion. We might never hike the swollen stream again together. How would they stand it? How could I?

Back at the house Perry climbed the ladder to the loft and looked through the railing down at me, wagging his head from side to side. He said I should have a place where I could have a cat. I said I didn’t know where I’d go or what I’d do. He said, well, you’ve always said you liked adventure, Mom. He said he was glad that we weren’t like Jason’s parents, where they had to sell the farm to give his mother what she wanted. We both climbed up to Perry’s bunk, the highest perch in the house, and Perry sneaked his hand under the sunflower seeds on the bird feeder tray, just outside the window. Perry Entropy could be still for half an hour to wait for the touch of bird feet walking over his outstretched hand.

Later Brandon brought out the Monopoly board. He bought the blue properties, but also Mediterranean, and we insulted the deep valley beds at his hotel there. Perry got all the railroads. I was almost gone, but gradually came back when I used any scrap of cash to by houses on my yellow properties, and finished second behind the immensely gratified, paper money rich Perry.

We rarely kicked back like this on a Saturday since the farm had so many needs. I kept watching everything as though from ten feet above our heads, taking note, remembering, storing it all up, trying not to break down.

How Lucky I Am

People tell me how lucky I am. I’ve always found that amusing, because every time it is said in terms of some lesser disaster. One is lucky if he gets a broken leg in an accident instead of getting killed. I would say real luck would be not having the accident at all. Yes, I can appreciate that Mom lives in the same town as I do, because, by the way, of my insistence years ago that she move to my town after Dad died. That she is mobile, that she didn’t break a hip, that she still has her mind. She is remarkable, and people say so all the time, to live on her own at 97. Still, when they find their lives totally in the service of another person, I can’t wait to tell them how lucky they are.

I thought Mom would stay weak and need to be constantly looked after. So it was a surprise when she began to recover. Though there were still nights of nausea and vomiting, and a minor fall, her shocking frailty was receding. When I put a railing on her bed, she no longer had to sleep on the sofa. With the help of a walker she was soon able to stand up from sitting, without my help, and the horrible bruise faded a little more each day. I helped her with a regimen of exercises in her chair, the first time in her life she’d done anything like it. She learned how to move around the house with no help from me, and even resumed washing the dishes and making her morning oatmeal. One night she didn’t have to get up at all to go to the bathroom.

I learned to do my yoga interspersed with her needs. A handstand before she woke up, backbends while she did her arm exercises, a headstand after her breakfast. Maxxx took me out for a date, though we only went a couple of blocks to the Subway and left early to avoid the heaviest of the swirling snow.

When the occupational therapist has her do a lacing test with a shoelace and a piece of leather with holes in it, she can do a running stitch, but fails the whip stitch. Maybe, I think, because any seamstress makes the needle enter from below and the therapist insisted it be done from above. Her failure means she can't live by herself, says the OT. Mom deals with her confusion with humor, but we don't tell her what it means. I’m not sure myself.

Canton, two months after leaving the farm

Dawn comes early now, its harbinger the moan of downshifting 18-wheelers as they make passing acquiescence to the presence of our little burg in the 40 mph zone, Canton, Minnesota. I stumble into the living room to breathe life into my used 21 inch TV. After five minutes of hissing it settles down to “Homestretch”, my morning exercise ritual. Amy gives my outer thighs a workout, but is careful to have me work on my inner thighs as well. She is very big on keeping opposing muscle groups in balance.

On the farm, morning was the time to stoke the cook stove fire before the kids stirred in their upstairs loft, and judge the opening day by the look and smell of the misty woods on a brief walk to the outhouse. Now as light strengthens, the form of the semi parked in front of my house reveals itself. “Ertl Metal Toys” it proclaims in yellow letters against distinguished black. It makes me think of The Little Engine that Could, filled with toys for the boys and girls on the other side of the mountain. The driver eats breakfast at the cafe next door every Tuesday after “Homestretch” and before the school bus goes by. That is the closest I get to Brandon and Perry on most days.

It’s June and the boys will be cleaning up after breakfast, Phil never did dishes. Will they grub out grape vines from the chestnut plantation, or sort through flats of hazel seedlings in the greenhouse for the strongest ones to plant? Does Phil wake when Brandon has a reaction at night and needs sugar? Do they miss me?

Doing it All

My brother Scott urges me to look into baby monitors and cordless phones, and sister Jean asks if I’ve tested the alerting device around Mom’s neck recently. Can I hear it in any part of the house if she needs help? Why didn’t it go off when she fell? I need to get my computer ready to receive video calls so Mom can see her great grandchild. I should have a list of people to call who can fill in when I go out. The tray for the walker fits poorly and throws it off balance if there is anything on it heavier than a cotton ball. We need a little table by the fridge where Mom can put items before taking them to the counter. We should replace the towel rack in the bathroom with a real handhold, because she hangs onto it for balance. How can I make sure she will be safe at all times?

I get irritated. Today I spent an hour on her alerting service trying to make the extension monitor work so that she can hear the person on the other end. Caller from the service, very blurry: Are you all right Ruth? Mom says nothing. Answer him I say. Mom: I can’t understand what he’s saying. Me: Then say so. Mom: I can’t understand. Me to the caller: Did you hear that? Caller: She is very faint. Me to Mom: Talk as loud as you can. Mom: What? Caller: Ruth are you alright? Do you need help? Mom: Yes, I’m on the floor and can’t get up. Me to both: No, Mom you’re not in trouble now. Caller: Is she OK? Me: Yes, but she can’t hear you. Caller: How’s this, at a high volume but in a bigger blur. Mom: What did he say? Me to Mom: Just say something.

When mid-afternoon comes and I still haven’t gotten one bit of my own work done, an undercurrent of panic rises to the surface. How will I manage when the second semester starts at Luther in a few weeks? How will I keep up with my work on my master’s degree? I use every little corner of time I have, reading and writing ahead, knowing how little time there will be for all of this in a few weeks.

Canton, five months after leaving the farm

I’ve lived in my funny little rental in Canton now for five months. Four weeks ago my main occupation was to look for a job and now I have three. I bought a piano and continue giving lessons, I prepare and teach labs for the biology department at Luther College, and I cashier at the food coop in Decorah. I was protean in my encounters with employers, becoming a preschool parent educator for one, why not? I’d raised kids. A fundraiser for another, after all I’d written grants for the farm. There was a forestry job. Well I lived on a tree farm didn’t I? The dance teacher in Harmony just retired, so I could start teaching dance again with ready-made students.

For many days in the summer I still went back to the farm to work, to shear Christmas trees for harvest in December. With blades like long bread knives I slashed them into the cone shape that everyone wants. Phil wasn’t going to do anything with them, and I wanted the income, but ended up giving it all back to him and the boys after I managed the cut-your-own weekends in December. I’d see the kids in between their chores.

When I look back at that time it amazes me, the way it did my friends at the time, that I would keep going back to the farm. But I’m not the same person I was then. For some reason I wanted to tear the bandage off slowly.

A little while later when I got a job at a community college in Calmar, Iowa, I moved to Decorah, and it turned out I saw the boys nearly as often as when I lived in Canton. Decorah had long been our market town, and they liked visiting me and doing big city things like going to a movie, a burger joint, the library.

For one crazy semester I taught chemistry and biology at the community college, kept on with piano, and did my lab job at Luther. The Luther job won out and turned into an instructorship. I was so busy I didn’t have time to think about how I missed the boys or the farm, nor did I have time to make new friendships. On the other hand I enjoyed running water, the convenience of having stores close at hand, and the roller rink with its shiny blue floor and room to work up speed.

In the middle of my metamorphosis, my feelers were out all the time, waiting for the next change, but it took years to realize I’d actually made it through to some new adult form. I was no morpho butterfly, more like an industrious ground beetle who knew its job. At least I wasn’t some mayfly that soars for a day, leaves its genes for the next generation, and falls in piles of millions of others that swirl in windrows along a darkening street.

Settling down

My brother Scott tells me about kaizen, the Japanese word for improvement, which came to mean in the philosophy of W. Edwards Deming, the idea of continuous, often gradual improvement, applied with great success to Japanese manufacturing in the post World War II era. Things are improving every day, just as they did when I left the farm. I can see that each of us landed in a better place than where we started. Me in a life where I could really make my own decisions, something I didn’t even know I was missing at the time. The boys able to continue with farm and school, and eventually follow their own trajectories. Just now I can’t see where the pieces will land, and try to feel OK with the vertigo of not knowing. At times when the future is unclear, I’ve told people that something will happen. There’s a kind of comfort in that, as though we need to be reminded that with or without our effort, events will continue to roll out. Then we can look back on them and there they sit, like sedimentary rock laid down in the Cambrian, all settled in place.