Those 2 unavoidable things

A month ago, Mom is doing great and going for walks in the sun. I’m juggling things pretty well: her stuff, caregivers, condo, writing, friends. We watch Dancing with the Stars on Monday nights and Doc Martin on Fridays. All is well.

Then it isn’t. A bad cough. No appetite. No strength. Doctors agree she has fluid around one lung. One treatment works for a while. Tests don’t reveal the cause. Everything else looks normal. The doctors don’t agree on what treatment next.

It’s a Saturday, offices & labs closed. Mom’s cough sounds worse, like she’s underwater and trying to surface, fighting for breath. The cough medicine makes her sick. I get her to the ER for relief. After more tests, they send us home. There’s nothing exactly to treat.

On Sunday, she sleeps, when she isn’t coughing. I sit and stare. At her, at a picture on the wall that’s crooked, the spots I meant to get off the rug, the gray sky outside. I’d move if I could. Everything feels very far away.

I finally blink. Being 93 is the terminal condition. There’s no permanent cure to find. That’s what the doctors mean, in all the different ways they say it. The indefinite future when she would pass away has become, almost overnight, the foreseeable future. The light at the end of the tunnel isn’t Mom’s ability to be right as rain again. The light is the end approaching. The headlight of the onrushing train.

oxygen in use2I’m frozen, realizing its full force will hit me, not her. She’ll be home free. I’ll be the one left with the abyss of loss. I’ll be the one gasping for breath. I can’t concentrate on anything else for days. It’s the opposite of adrenaline. I’m afraid to accept what I can’t change. I must find a way. The truth?

Our talks take on a scorching intimacy that nearly breaks my heart.

“I never in a million years thought I’d get this old,” Mom says.

“It’s remarkable,” I say.

“I’ve lived long enough,” she says. “I might as well conk out.”

“I don’t think it works that way,” I say. “You can’t just decide to go and then go.”

“I’m not any help to anyone.”

“You are,” I say. “You employ four people now, who all think you’re delightful.”

“They do?” She smiles a little. She knows it’s true, but it isn’t ladylike to boast. “I’m looking forward to Heaven. I want to tell Mother I forgive her.”

After years of trying to find out what she has to forgive, the explanation that makes most sense to me is that she didn’t have the mother she wanted. Her mother didn’t love her enough. I guess she didn’t know I thought that too, once upon a time.

Now we talk quietly every morning when she wakes up, and every night before she goes to sleep. The real world is less distracting then, our world the one that matters. In every conversation, she asserts that she wants to stay home with me, not go to a hospital or nursing home. She isn’t ever alone here.

“What’s making you cough might not have a cure,” I say, inching toward truths. I use the word “Hospice” often, which doesn’t seem to bother her. “They help people who need more care near the end of their lives,” I explain. I’m her lifeline, and Hospice is mine.

Staring at death, I blinked and froze. I’m bracing for the worst and inching my way toward acceptance. For everyone who’s been waiting on me to do other things, please forgive me. Finally, despite death’s specter, I’m determined to stay mindful of this hour with her, this joke, this meal. The coping skills I’ve learned while caring for her are the same ones I’ll count on to help me navigate all that comes after the train wreck. The rest of my life.

Staring at death, Mom didn’t like what she saw and chose defiance. She seems better, courtesy of Hospice oxygen and the rallying visits of friends. She’s still having too much fun to conk out.

It’s been a challenging foray into dying. The next fun thing I get to do in April is file our taxes.

 

 

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No. Yes.

My friend Julie Guy is brilliant.

“You will ask organizations for things and they’ll say no,” Julie said on March 23 in accepting her nomination to the YWCA’s NW Women’s Hall of Fame 2013 for her community building and activism. “But no is just the beginning of yes,” she promised.

I said no on Monday. The topic was life and death.

The doctor’s office called to ask for Mom to get a CT scan to try and figure out the cause of her recent lung problems. She’d been in the ER twice this month for this problem, and no one had mentioned the use of this scan as useful in figuring out the cause.

Mom’s decline in the past week is startling. She’s confused, detached, sleeping. She’s losing strength in her limbs. Her hands sometimes tremble. Listening from another room to her breathing over the baby monitor reminds me of a benevolent Darth Vader. All she seems able to eat is ice cream or applesauce.

No, I said, to the request for the scan. She’s now too weak to get from home to anyplace with a laboratory and scanner on the premises. Here’s why no was hard: the results of the CT scan are needed by the doctors before determining any further or more appropriate treatment. We have Tylenol. A prescription cough medicine that makes her throw up. An inhaler. Every 6 hours.

No one can say if her condition is terminal. Every doctor has a way of saying, with varying degrees of frankness or kindness, that the life expectancy of a 93-year-old woman is probably not that much longer. Is aggressive intervention appropriate, or even desirable?

Without help in sight, I’m on the high drive, staring down into a shallow, empty pool. No way back, no safe way onward.
My mission is not getting her more impossible tests or aggressive intervention. My mission is to find more comfort and, hopefully, a bit of grace to her final days. Doesn’t everybody want that, doctors and nurses too? My mission is to spare her the ugly, racking, endless cough and hard-fought breath. Where can I find help for that?

A magnificent RN becomes my lifeline. She calls back and listens when I need to talk through the options. I don’t want to hang up until I see the first step of this new, shortening path.

“What do we need in order to qualify for Hospice care?” I ask. I assume it takes an MD, and/or the results of the CT scan, and/or a terminal diagnosis of exact dimensions.

“I can refer you,” the magnificent RN enlightens me. “Do you want me to call them right now?”

Yes!

That was yesterday. Today Mom is in Hospice care. Oxygen arrives and is helping her breathe. There is a sparkle in her eye again when a dear friend visits, and the pastor. She eats another ice cream cone, licking the chocolate off her fingers.
Thank you, Julie. Thank you, PeaceHealth people and Hospice people. And Jean and Pastor John. And Roberta, Nancy, Hope, and Migden.

I bring Mom daffodils still in bud. She smiles as they blossom.

Daffodils blooming

 

 

Trips

When I wake up this morning and go check on Mom, her bedroom light is on. After using the commode, she’s gotten back into bed to think about things.

“What’s up?” I ask. We’re all vigilant about her breathing these days to be sure she’s not getting fluid around her lung again.

“I was going to go to…” She starts out strong, but the destination disappears before she gets there. “Sit down.” She moves her legs under the bright flowered bedspread.

I accept her invitation and sit on the edge of her bed. She wants to talk about this. “Where were you going?”

“I was going with some people, I don’t know who, and we were going to, um, I’m not sure….”

“Um-hmm.” If I don’t interrupt, sometimes she finishes more of her story and I have a better chance of figuring out what she’s talking about.

“I’d been there once before,” she tells me, “so we were going there again.”

“Where is this?” I ask again.

“I don’t know.”

She’s trying to give an accurate report of what a memory feels like, or the look of a dream. Slippery things.

“Who was going with you?” Maybe she remembers faces, or voices.

“I’m not sure.”

“Maybe you’re mixing a dream and a memory and something from TV,” I suggest.

“No, we were going somewhere….” But the destination still eludes her.

She used to be on the go all the time. “Do you miss traveling?” I ask.

“Not at all,” she says immediately. Now she likes being warm and comfortable at home in familiar surroundings.

“So, let me get this straight,” I say. “You’re thinking about going on a trip to someplace you can’t remember with people you don’t know.”

Everything becomes clear. She beams. “That’s why I’m not going!” she declares. `

Photograph of Jennifer & Peg at the start of the Chilkoot Trail in Alaska in 1975. The 3-day hike was Peg’s idea. It was rainy & muddy & gorgeous.

Home

Caregiving, like writing, requires constant leaps of faith.

Can I leave Mom alone all weekend and enjoy a writing retreat with real people in a wonderful, wooded place? My preparation takes weeks. I must be forgetting something. I’m busy until the hour I need to leave.  With Mom in good hands that aren’t mine, I load the car and drive away.

The air is cool and fresh. The sun shines. I am delighted to be out in the real world. I turn off my cell phone. I want to breathe this air.

I feel uneasy, though, to be free of obligations. The first day, it’s a tightrope that makes me dizzy. My dear fellow writers are accepting and solicitous. I sleep 10 hours and regain my balance. I write. The fire crackles. Heavenly. If only home were like this.

Daffodil1It’s slippery getting home again in the snow, but I walk in smiling. I bring Mom an armful of daffodils that haven’t bloomed. She likes to watch them blossom. She did fine while I was gone. I’m not sure she remembers I was gone.

These familiar walls have a few rougher edges, though. I hear the clocks ticking. I want to be still and breathe. And write. But it’s time to cook supper. Make sure she takes her pills. Clean the kitchen.

I turn on swing music. Ella Fitzgerald sings “Meloncholy Baby.” Mom’s lips move and I lean closer to hear her sing-along. She remembers all the words.

Every cloud must have a silver lining.

Wait until the sun shines through.

Smile, my honey dear, while I kiss away each tear

Or else I will be melancholy too.

When it’s bedtime, Mom says, “Well, I guess it’s time for me to go home.”

I used to ask, “Where is home? What home are you thinking of?” but she has no answer. When I ask if she means heaven, she only laughs.

“This is your home,” I say. “You live here with me. You have your own room here and all your clothes.”

“I do? Oh, that’s good.” She’ll forget the worry until it returns tomorrow, or in a few minutes.

“Look.” I point to the vase on the table. “The daffodils are starting to bloom.”

Daffodils2She beams. “They just felt like it.”

I feel a rush of gratitude for this home I’ve made for us together, for the ease I can bring to Mom’s final years. I’m grateful for the challenges and the drama, the sweet times and the sad. I’m grateful for the encouragement I’ve had to write about them.

That’s when I’m home – when I’m writing.