Selected Passages from Can’t Stop Falling/a Caregiver’s Love Story
from The Preface
…..My last fear was that the work could get boring. Memoirs are supposed to be exciting and fast paced, yet caregivers’ lives move at a snail’s pace. In order to keep things going and help illuminate the book’s subtitle, I decided to marry a personal narrative of our lives to the original journalistic account. It starts at the time of our marriage in 1978 and moves close to 2013, the year disaster deepened. Thus at the beginning of the first ten chapters, running script narrates early events, followed by a conventional font presenting responses from my journal of 2005 and forward. The two time periods merge in the eleventh and twelfth chapters, and later ones open with meditative musing. This mixture of time periods happens to mimic my own confusion with time–things slowing down or speeding up.
For me the simple truth always speaks loudest. I didn’t want to tell anyone what to do or not do, only what worked and didn’t work for us. It’s just one caregiver’s attempt to survive the grief of watching his loved one suffer and decline….
from Chapter Two: Wall Street in the Rockies
A year after getting married we sold the Boulder house and moved into a wonderful apartment above the donut shop in Idaho Springs, where Joyce and Larry lived. Then I started lugging boards, windows, and flooring up the four-wheel road to Wall Street. Most of the materials were found items. Marilyn wanted to write a book called “In and Out the Dumpster,” because that was where I spent a lot of my time. This was necessary because we’d left our first marriages with next to nothing and were living hand-to-mouth, despite two salaries at SERI. We knew no bank would finance a house up in York Gulch, so put everything we had into building supplies and gas, and kept redrawing plans for the cabin and big house.
Renting a comfortable apartment above the Idaho Springs donut shop, we lived that winter smelling donuts, dancing at the Buffalo Bar every Saturday night with Joyce and Larry, and driving snowy roads down I-40 to SERI. The following spring we set up camp on the southerly point of Wall Street, facing Mt. Evans 20 sky miles away. We called Mt Evans “Lap of the Gods” because of its casque on top. Camp consisted of a small camper trailer roped to a pine tree in case northwest winds wanted to carry it away, plus a huge twenty by twenty tarp stretched out from the camper, under which we cooked and ate. Well, Marilyn cooked, using cast iron pots over the firepit, and I ate. And used my sharp draw knife to scrape bark off the sixty or so logs that might eventually become a house.
Meanwhile, Cuzi ruled the top of our mountain, although the mountain lion half way up Bald Mountain toward Central City disagreed. Our life was good, so good. We didn’t have electricity; never would get it, even after moving into the small cabin, because our area was too remote to have it brought in. But we did have water after hiring a water witch to locate a steady supply less than 200 feet down and installing a water tank in the new cabin. And eventually we had a propane Servel refrigerator, plus, wonder of wonders, a year later a phone. All the modern conveniences. Marilyn loved cooking over Emily, the blue old-fashioned wood cook stove we’d paid way too much for.
In winter Marilyn and I snuggled into our small but warm log cabin. Come summer, friends and family appeared—to help build or just visit. Our kids claimed to be mightily impressed, but later went on to live pretty conventional mainstream lives. We didn’t. Wilderness living changed us irrevocably. Henceforth we avoided city living, new cars, and brand names—buying most of our clothing at thrift stores from then until the time Marilyn needed no more clothes. We learned to live on next to nothing, making a $100 trip to the grocery store last a month. We came to value, not mind, solitude. And the biggest change came from listening to Silence.
from Chapter Fifteen: The Final Surrender
Friday, July 27, 2013
Our minister Bob has faithfully called twice a week, giving comfort. He’s the only one.
This morning, after a good night’s sleep for a change, things look better. We go to the local doctor, who tells us to take the new muscle relaxants three times at night, not during the day as the pill bottle says. Whenever I pump him for information or opinions, he defers to the neurologist, who won’t answer phone inquiries. Again, it looks like I’m in this mostly alone. But he does prescribe a different (and hopefully better) muscle relaxant–our fourth.
After the doctor’s visit we come back for coffee on the porch. A good start to the day. Oh no After fifteen minutes she’s agitated and mumbling. I ask: “Poop? Water? Cold? Hot?” And then: “Go inside? Stay out here?” We’re not getting anywhere. She’s moving her wheelchair toward the door. I ask again, guessing at the most likely: “Poop?” Even though she doesn’t really squeeze my hand, I move her to the toilet…and discover what It’s too late. It’s all over her, and now me. Mess, frustration, and repressed anger.
An hour later I realize that were I a caregiver worth my salt, I’d have anticipated her problem. I’m just too impatient and unobservant. After cleaning her, I prop her on the couch with bolsters and pillows to prevent a spill-out and take the dogs for a walk. I remember telling Alice the speech therapist to concentrate on just two things: “yes” or “no” and “pee” and “poop.” But yesterday Alice left early. I don’t think she’ll come back. She’d asked me if Marilyn really understood and I gave the same answer I’ve been giving for two years: Progressive Supranuclear Palsy makes it look like dementia when it isn’t. She probably understands most everything; just can’t reply.
Later in the afternoon, after nine holes of golf don’t go well; I’m still upset. Why such a heavy heart? Things will slowly improve, won’t they? Why can’t I be more patient?
Unbelievable: after a short drive around the lake and visit to the grocery, I feel restored and hope for the best. And yes, it’s the best There’s Marilyn smiling. We have a brief happy hour and I put her to bed at 7:00 and then walk up to my new neighbors, Mike and Susan, for a glass of wine. Knowing she’s asleep and relaxed, with pillows and bed fence to prevent her falling out. Here I am in a comfortable rental house in the middle of a high-end neighborhood, with very nice neighbors who’ve taken it upon themselves to find me and invite me up to their house—which, incidentally, has the best lake view imaginable. And Marilyn’s safe in bed This morning’s travails are but a dim memory.
Friday, November 1, 2013
These past two months have been so hard. Before, I could kid myself. As you, Marilyn the realist have always known, I’ve a long history of hiding my head in the sand. Now I’m slowly facing the fact that you will soon be gone.
I know you love me as desperately as I love you, but you can’t show it and that hurts both of us. You have to go, and I have to stay. Why, no one knows. No matter how hard I object or petition, nothing will change. You will go.
What’s so hard is seeing you helpless to protest. The day will come when you will start shutting down. No, it’s already come. The first sign I should have seen, when you stopped cooking. Cottie dated it exactly: she’d come to visit and was watching you stir the soup or stew with difficulty. The day after Cottie left you told me you couldn’t cook any more, offering no reasons or excuses. It flabbergasted me so much that I guess I didn’t stop to put two and two together.
When you got into the nursing home you refused to watch television in the activity room or even your own private room, with me lying right next to you, watching golf. You didn’t want to listen to music, and only obliged me when I insisted on wheeling you outside on a sunny day or taking you out for a chocolate sunday. Just obliged me.
Were you already aware of your gradual shut-down? Did you know what pleasure you still gave us all when you offered a fleeting smile?
So when will the big shut-down come? Already you don’t want visitors. Back at the nursing home David told me how hurt he’s been when you sometimes barely recognized him. But you do want me, I know that for sure. Inside you there’s room now for only two—or one, as we’ve always said we are. But will you push me away at night? Right now do you try to return my kisses and just can’t, or have you let go of trying to do that also?
You sleep more, just as the books say you will once the dying process becomes real. Words have already lost most of their significance. Well, all words save the silly love song I sing to you six or seven times every night: “You are my mouser, my wonderful mouser, I love you madly, I love you so. You love me too, I know you do. You are my mouser, my wonderful mouser, I love you so…..”
You eat less and less. At first it was whatever I cooked, as long as it was cut into small pieces, then softer stuff, then pureed stuff—which I knew you didn’t like. For some time both Mildred and I have known that you stuff food in the back of your mouth. When I’d brush your teeth at night all kinds of food would come out; sometimes it stayed in your mouth all night. I was mad at first. I didn’t know if it was because you didn’t want it, didn’t like it, or couldn’t eat it.
Whatever the case, I should have seen that you were choosing a new diet. I should have listened to Mildred telling me that whatever you wanted was ok, even if it was just cottage cheese, bits of peaches, yoghurt. I kept thinking you needed more to sustain yourself. Maybe you were already starting to sustain yourself on some kind of spiritual energy.
You sleep sometimes with your eyes open. Why? Do you have one foot in each world? Is it hard letting go of us, so you have to keep an eye out, or will they just not close properly? Do you want to leave me too?
Strangely, your blood pressure and pulse remain strong. This surprises the nurse and David, who’s starting to come around more often. Your facial color remains basically the same, although your face is a lot thinner. Your high cheekbones, that Indian heritage, are really high now. You’re as beautiful as ever.
I see that you need more covers these days. Do you remember back in the nursing home how you’d always throw off the blankets, and sometimes shirts or sweaters? How you were always too hot, even when I, lying right next to you in the narrow hospital bed, shivered?
Please, Mouser, help me survive this shut-down.
Wednesday, November 13, 2013
Now it’s 9:00 in the morning and Mildred and I are in the final watch. She’s in the chair next to the bed, I curled as close as I can get, my arm tight around her, holding her hand. She’s breathing regularly, but not as strong as usual. We’ve taken the cotton balls off her eyes and now they’re closed. Very peaceful. I whisper in her ear how much I love her, how everything’s going to be all right. She probably doesn’t hear me; I think she’s floating somewhere far away. Morphine does that. Time has utterly stopped.
Watching her lie there so peacefully, it suddenly comes over me that she’s forever stopped falling downward and has already begun her upward fall.
At 10:00 Jan, the hospice minister comes in, stands behind Mildred saying nothing. I’m not crying. No one says anything. Marilyn’s breath is faint. Two hours ago I stopped marking down the times we’d given morphine. In the far back of my mind I imagine hearing Jan saying, “Start preparing yourself for when she stops breathing.”
“No,” I mentally reply. “She’s not going to stop breathing. No matter that I kept telling her last night to let go, I’m going to will her not to. I’m going to will her to keep breathing for another ten years. Even if it means in this reduced state, my arms will stay wrapped around her.”
Then I start to tell Mildred that Marilyn’s mouth has closed, but Mildred reaches over to pat my hand. “She’s gone, Bill. It’s over now.”
As prepared as I’ve been all night—all week—I still can’t believe it. I lean over to see if I can feel her breathing on my cheek. I can’t. I think Jan might have said a prayer; don’t really know.
Time has totally stopped. Maybe all life.
From Chapter Sixteen: Life Goes On
Still, there’s no shutting the floodgates. Cottie says the more we love a person, the more we cry for our loss. So I’ll just have to accept two things, there’s no future and the past is gone. Well, for her there might be somewhere else, but not for me. I live only in the now, still crying.
The experts say we need to move through grief. Not moving just means delaying. So I let the tears flow. The sun shines, Rowdy sleeps, and I cry. And I try to remember the words she might have told me: when I go, I don’t want you to grieve forever. Grieve but let me go. I’m ok; you need to be too. Let go. The very words I kept telling her at the end.
* * *
It’s January and the bluebirds are back Promise of early spring? Maybe. Promise of continued life? Obviously. But also reminder of all of our bluebird watching. Back in Colorado, with Shirley and Marilyn sitting on our mountain cabin porch watching ma and pa bluebird bring their young ones to frolic in the dirt driveway. In Georgia, with Marilyn and Bill sitting in front of the Airstream up at the Rhododendron Garden Campground watching them swoop for bugs. In Hayesville with Marilyn helping me plan where to locate the two bluebird houses in our front yard. So today I will choose to call them what we used to, our special angels.
If birds can be special angels, I guess I can stop being angry at God. My friends here try to comfort me by saying she’s in a better place, but I want to say she’s always been in a better place. She learned that up on our Colorado mountain, even though we both did our best to forget it once we came back into the world. So now after a long, cold, lonely January week, it strikes me how we’ve always been taken care of. From dangerous times cutting and stacking and logs up on York Gulch or trying to live on $600 a month to smaller things like cars or places to live in suddenly appearing when we had no money. Not to mention our wonderful retirement home and some time, if not enough time, to enjoy it together. So why can’t I just accept the possibility that what happened could be ok? If Marilyn believed You are in charge, why can’t I?
* * * *
It might be fitting to end with a dream I had last night—a happy dream. Marilyn and I were walking the streets on a sunny day looking for something, and stopped in at a local eatery. We ordered a roast beef dinner to split, plus ice tea. Then the scene switched. The restaurant owner and I were driving the streets looking for a house. I told him this whole area was just too suburban: all cookie-cutter houses. But then we were back at the restaurant where Marilyn shouted over to me: “Cameron Street. Go to the end of Cameron; that’s where it is.”
We climbed back in his truck and took off, finding Cameron right away. Sure enough, at the very end was a small house with a for sale sign. It was too close to the highway out in front, but had three tall, pretty trees. Unfortunately the house looked very, very small: only 15 feet wide by 25 feet long. I peered in the front door anyway and suddenly the house opened another side, revealing a beautiful living room with a fine fireplace. Carpeted stairs led upstairs.
Immediately I knew it was ours; so cute, and no doubt the right price. I ran and grabbed the for sale sign before anyone else could get it, and drove back to the restaurant, eager to tell Marilyn I’d found the right place.
All my adult life I’ve been drawing house plans and having house dreams. All our married life we’ve driven around looking for houses to buy, even when we didn’t need them. And moving from house to house, sixteen in all. This time everything was perfect: Marilyn was back to her old self, pretty and happy as ever; speaking, laughing, and walking. The house was made for us, and life was whole again.
It’s a fond thought that this scene could be set somewhere in the future, not the past. The caregiver can now bring this story to its close.