Mom speaks a unique language now. Sometimes I can translate.
At ten o’clock last night, I asked if she wanted to get ready for bed. This nightly routine requires her to stand up from her easy chair, use her walker to navigate her way to the bathroom, put on a nightgown, brush her teeth and wash her face, and walk to her bed. With company to make sure she doesn’t wobble and fall.
She didn’t move a muscle, so I asked again if she was ready for bed. Finally she said, “I feel so…moveless.”
She used the right verb to describe the action pending: move. She wanted to modify it to the negative, so picked one of many possibilities, the suffix “-less.”
Lacking the energy to move. Too tired to do anything. Unable to imagine herself doing anything but sitting in her chair. I feel that way sometimes, too. Some days the world has more gravity than usual.
As her vocabulary slowly erodes, she stays amazingly inventive in getting her meaning across. “I’m going to have a talk with my mind,” she told me the other day, as though her confusion could be cleared up by determination or willpower. When I gave her a compliment on some small success, she laughed and said, “I don’t know what I’m doing, but I’ll keep doing it.”
The relationship among things in her world seems to have gone missing. “It’s nice to meet you,” she’ll say to a visitor, someone she sees in church every week. I continue to suggest the all-purpose greeting with a smile, “How nice to see you.” A person doesn’t have to tell the whole truth and nothing but the truth all the time. But Mom’s world doesn’t include the concept of deception.
She likes to get tucked into bed. The other night she said, “I love having you for my mother.”
“I’m your daughter,” I said, wanting to be pleasantly accurate. “You’re the mom.”
A puzzled look crossed her face, quickly gone. The proper words to describe our relationship aren’t particularly relevant anymore. I’m gratified she feels safe and loved in my care. That’s the point.
We manage to communicate. One morning when I was cleaning the refrigerator, she supervised from her favorite seat by the sunny kitchen window. “Don’t forget to put the thing in the dealy-o,” she advised.
I knew what she meant, so I did it.
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 an oncoming train, the one that’s non-negotiable.
I’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. The calmness I’ve gotten from taking care of her is changing to fear.
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 her mother for, 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. I hope I never told her that, or if I did, I hope she didn’t hear me.
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. “Hospice helps people who need more care near the end of their lives,” I remind her. I’m her lifeline, and Hospice will be mine.
I’m inching my way toward acceptance. I think she is too, in quiet moments. The coping skills I’ve learned in the years of caring for her are the same ones I’ll count on to help me navigate the train wreck. Then navigate my life without her.
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.
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. I listen from another room to her breathing over the baby monitor, reminding 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?”
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.