Poison Pimples

"I have these bumps on my chin," Mom says as we drive to her psychiatrist appointment at 1 pm.
"Bumps on your chin?" I ask, feeling her chin. "I don't feel any bumps.
"Yes, they have poison in them," she says. "They're on my cheek too."
"The only bumps on your cheek are your cheek bones," I answer, feeling her cheek.
She's always rubbing her chin because the stubble of hair there irritates her. We just shaved it a couple of days ago, so I'm thinking this started with the scratchy hairs there.
"Yes, I think Emily gave me these bumps on my chin," she continues.
"We're going to the doctor, so you can tell him about them," I conclude.
"What are we going to do with the Russian baby?" she asks next.
"What Russian baby?" I ask.
"Roz came home with a Russian baby," she says.
"No, she didn't," I correct her. "Roz got a little dog, not a baby."
Roz does have young cousins in New York who were adopted four years ago from Russia. I wonder if this fact migrated from some storage place in Mom's brain and attached itself to the recent dog information.
After we enter Dr. Chen's office, Mom starts to tell him about her bumps, but now they are pimples and they are on her hands.
He gently examines her hands and says, "You don't need to worry about them. I don't think they will bother you tomorrow."
He doesn't say, "There are no bumps here!"
"They're on my legs too," Mom asserts, but again he reassures her.
"Your fingers are purple on this hand," he says, but I tell him we've already discussed that circulation problem with her geriatrician.
"There was a patient across the street from my mother who died of these bumps," Mom continues. "Her name was Cinderella... Paradise."
"What a lovely name," he ventures.
"Yes. You probably think I'm crazy," she says.
"How are things at Ocean View Assisted Living?" he asks.
"Very aggravating," she answers. "Everybody is teasing me because the door to my room wouldn't open."
I don't explain to him that when she wheels away from the table half-way through a meal and arrives back at her room, she finds the door locked because the staff does not want her to enter and try to get out of the wheelchair into her recliner or onto the toilet.
Somehow she next mentions her husband, Kermit, who died in 1993.
"He went to the Colorado School of Mines," she says. I don't say, "No, that was your brother Reynold."
"--and he got a bunch of gold and silver slates and carried them home--" I don't say, "No, that was your grandfather who was accused of highgrading."
"--to his parents, Mr. and Mrs. A.R. Gustafson. They died. They fell from that silver and gold, carrying it upstairs from that place--"
"Oh, they did," Dr. Chen murmurs.
"They thought he was down at the chocolate shop, and I thought, 'Oh, that's sweet.'"
"Yes, that's sweet," he repeats, smiling.
"And I went down there. He had these bumps and I thought I was going to die from these bumps," she continued.
I wondered how long this tale by free association could last, but then she did a quick self-assessment.
"You must think that sounds pretty silly," she said. "You must wonder how a well-bred woman could have a dream like that, but I did. Of course, they were--"
"Do you have a list of her meds?" he asked me.
"No, they haven't changed since you saw her a month ago," I reply.
"How is she doing?" he asks.
"She hasn't been violent with the staff in the last month," I begin. "At least no one has reported to me any scratching or hitting. But when I come in the late afternoon, she is often very upset and crying about something that is a complete hallucination, something from the past that isn't even anything that happened to her. Like one day she was crying, 'My mother lost her baby... Byron and Serena had to walk to get the doctor.' But this happened to her grandmother, and the child Serena who went to get help is her mother. She thinks these things happened to her, but it was before she was born, in 1899 or something. I just try to take her out to do something, distract her, and she forgets about it."
"You're right to redirect her with real activity in the present," he says. "I don't think it's a good idea to try to medicate her for this. Let's just keep her Seroquel at 25 mg once a day. And maybe this time you can come back in three months."
"Oh, good!" I say. These visits are so pointless--I'm delighted to come less often.
"But these pimples," Mom says, trying to regain the spotlight. "You think there's no reason to have them under a microscope and be seen...?
"No, I don't think so," he answers. "I don't see them."
"You don't see 'em? Well, they're there!" she retorts emphatically. "Why do they come? After a night alone, there they are again."
"Well, it's possible," he ventures. "But you don't need to worry about them."
"Positive? They're not positive? Okay, I won't worry.... I was a Navy nurse in World War II," she counters.
"Yes?" he answers.
"I worked very hard to get everybody in the catalog of US News & World Report. And they had these pimples."
"Oh, I see, " he says as I thank him and push her in her wheelchair out of the office.
We go to the lobby to get ice cream, as usual, for a treat. She has a Nestle's Crunch bar and I have an ice cream sandwich.
On the way home, she is reflective: "I guess I don't need to worry so much about these pimples because everybody dies of something."

Running Errands

I left the house to do errands and took the new little rescue chihuahua with me. My oldest daughter, Roz, found it online and will take it back to New York City with her when she next comes home.

In its pink and white wool sweater and yellow harness, it was a big hit at Mom's residence.

As we sailed out of Ocean View Assisted Living to continue our errands, the dog sat alertly on Mom's knees like a carved ornament at the prow of a ship.

I'd just intended to do local errands, but I'd gotten a call from the church that a member soon to have open heart surgery needed O- blood. Although I'd been rejected as a donor on Sunday because my hemoglobin was a bit too low, I decided to try again.

So we went to UCLA, parked at Whole Foods, left the dog in the car, wheeled a block to the clinic, waited.

In the car and while waiting I supplied Mom with cashews, grapes, sticks of gum. Food is one of her greatest pleasures at this point in her life.

However, my count was only 12.4 (12.5 was the cutoff), so the effort was in vain. With a brisk wind blowing, we went back to the car.

"It's so cold," Mom complained.

"You're okay," I told her, adjusting the blanket on her lap.

I was thinking, "It's this or sitting in your chair all afternoon. Cold or not, this excursion is probably more stimulating for you."

Once in the car, I put the dog in her lap for the drive back to her residence.

Queen of Hooks

I arrive at 9:15 am to take Mom to church--our weekly outing, the only place she goes every week besides my house.
But first I had read my Al-Anon day-by-day books for my daily guidance, along with five psalms and a chapter of the Bible.
Melody Beattie's advice for Jan. 26, in The Language of Letting Go, is as follows (in part):

We can learn not to get hooked into unhealthy, self-defeating behaviors in relationships--behaviors such as caretaking, controlling, discounting ourselves, and believing lies.
We can learn to watch for and identify hooks, and choose not to allow ourselves to be hooked.
Often people do things consciously or without thinking that pull us into a series of our self-defeating behaviors we call codependency....
Someone may stand before us and hint or sigh about a problem, knowing or hoping that hint or sigh will hook us into taking care of him or her. That is manipulation.
What are the words, the signs, the looks, the hints, the cues that hook us into a predictable and often self-defeating behavior?
What makes you feel sympathy? Guilt? Responsible for another?
Our strong point is that we care so much. Our weak point is that we often underestimate the people with whom we are dealing. They know what they're doing....
Today I will be aware of the hooks that snag me into the caretaking acts that leave me feeling victimized....

As a result of this reading, I set out hoping to notice any hooks that Mom set out for me and to avoid being hooked.

When I arrive, Elisa, Mom's morning caregiver five days per week, reports that although she got Mom up and dressed in time, the kitchen had not served her breakfast promptly; she had eaten only oatmeal and fruit, without the scrambled eggs and sausage she usually has as well. I speak to the lead caregiver and to Ilona in the kitchen about that, reminding them that Mom has fallen from 118 to 102 lbs. in the past year and that her best meal of the day is breakfast. She often refuses to eat lunch or dinner but always enjoys a full breakfast.

Then I scoot Mom off in the wheelchair, past the medicine giver on the second floor, who protests that we shouldn't leave without her meds. Ilse had arrived on time, 8:30 am, instead of early, and as a result had not yet gotten to Mom and her meds. Usually I stop (if caught) and wait while we go through the med rituals: a squirt of something in each nostril, drops in the eyes, and 5-6 pills taken slowly, reluctantly, with juice or applesauce. But this time I say, "No, we will be late for church if we stop."

It's sunny as we drive to church, and I hand Mom her sunglasses, but she's putting them on upside down; I manage to steer them correctly onto her nose while driving.

"Look at that cute cloud!" she comments. And sure enough, the Los Angeles sky holds dramatic puffs of cumulus for a change.

There's still a handicapped parking spot near the church, so we save time there and sail into our customary spot on the aisle in the left rear of the congregation. Other than some humming and whispering at inappropriate times, things go well.

Her favorite times are when she drops her envelope in the offering plate and when we recite the Lord's Prayer. For some reason she always recites one line wrong:
"Forgive us our debts, as we forgive those who debt against us"--and being out of sync with the congregation on that throws her off for a few lines, until she catches up with "the kingdom, and the power, and the glory forever, Amen." (A few years ago when I took her to the Episcopal Church, they always said, "Forgive us our sins, as we forgive those who sin against us" and I think she's trying to follow this pattern with debts.)

After church, we head for the handicapped restroom as usual, and after placing her on the toilet, I don't hear any liquid trickling, so I replace the Depend and start to pull it up quickly. There's a smell but I ignore it, hoping for the best.

Suddenly, however, I notice a fat length of BM on the toilet seat. Whoa! I check things out, clean up more just emerging, decide not to throw out the newly soiled new Depend, wish I had brought plastic gloves and wipes, hope there's not any on her skirt or my clothing.

Then we head to the church hall with a blood donation station set up, where I am scheduled to give blood this morning. First I give Mom tea with milk and sugar, as well as cookies, while I fill out the form. But they reject me: the iron level in my blood is only 12.2, instead of 12.5 or better, so I can't give blood today.

We leave church, but by now the cute cloud has multiplied and it's raining heavily. We get soaked while getting her into the car. She has been talking all morning about going to my house, but I realize that project is going to be difficult in this rain. Better cancel it, just do errands and take her back to her residence.

"Mom, this isn't a good day for you to go to my house," I begin. "We would get all wet again getting out of the car and going up the ramp to the front door."

"I don't care! I just want to go to your house," she argues. "It's been such a long time since I was at your house." Hook #1

"Mom, you were there Friday. Two days ago. Remember? You met Roz's new chihuahua."

"Yes, I remember, but I don't go there very often," she maintains. "And I just want to see Reynold."

"Reynold is not at my house," I say carefully. I do not say, "He died four years ago."

"Oh, he isn't? Oh."

"If you want to get soaked in this rain, we can try to get out of the car and go up into my house," I concede. "But it would not be a good idea."

"Sunny California!" she says.

"We have to have rain some time," I counter.

After a few moments, she says, "Okay, I guess I should go back to my place." And she begins singing, "California, here I come! Right back where I started from."

I sing along with her until she, suddenly perceptive, she accuses me, "You sound like you're happy that you don't have to take me to your house!" Hook #2

It's true. I had told myself that it rains so rarely in California that I should take advantage of this unusual reason not to have to load her in and out of the car, supply her with various snacks and foods for a hour.

But I do not succumb to her effort to hook me into sympathy, guilt, and the usual Sunday trip to my house.

"Would you like some French fries?" I ask. "Let's go to McDonald's, and we won't even have to get out of the car and get wet."

"Okay," she says. "But I have to go to your house to get the news. John always has the news." Hook #3

"We can stop and buy you a newspaper," I answer. "And we will do a couple of other errands too. I need to buy some dog food."

At Centinela Pet Feed, I tell her, "Here's your milk shake. I'll just be a minute to buy the dog food."

"Get me some celery!" she demands.

"There's no celery here," I answer. "This is just a pet store, not a grocery store."

"If you won't get me celery, then I'll eat dog food!" she whimpers. Hook #4 --poor me.

"You don't have to eat dog food," I answer. "You have French fries, a cheeseburger, a milkshake, and a doughnut."

The rain is letting up by the time we drive back to her residence, and I hope she doesn't notice. I'm really counting on saving an hour by taking her back now, at 12:30, instead of 1:30 or 2 pm.

Inside, it takes a while to clean her up in the bathroom, but at least I have plastic gloves and wipes. I set her up in her recliner with her milkshake and doughnut on her tray in front of her, but she says she's too tired, not interesting in eating any more. I start a DVD that happens to be in her television, about the birth of Jesus. Oh well.

I open her newspaper, throw away the ads, elevate her feet, read her a post-Christmas letter from her best friend, Janelle Krueger, formerly dean of nursing at the University of Arizona in Tucson. Well, it's a typed Christmas letter from Janelle's daughter Bunky, with a note in Bunky's hand, and a signature from Janelle as well as Bunky and her husband. Such is communication at age 89 if one has dementia.

There are a few more hooks as she attempts to delay me and keep me with her longer, but at 1:30 pm I finally escape out the locked door into the elevator lobby.

A caregiver, Stan, sees me leaving and says, "You look tired."

"I just did four hours with her," I say. "That's not much, compared to your hours, but it's enough to wipe me out. And I didn't have any gloves or wipes when she had a BM in the church bathroom."

Stan is instantly sympathetic and solicitous: "You should have them with you."

I stop to use the second floor bathroom, as I often do when leaving. My need to close a door and be alone and quiet for a few moments is overwhelming.

Bougainvillea

Some words Mom just can't find. She will use any word handy when she means her watch or her purse.

But at church today, when I parked her in front of the flowers while I went to sign a list to donate blood next week, she said, "Oh, bougainvilleas!"

She learned this word last May, on Mothers Day, when Bill was visiting and we picked a couple branches of this flower for her at a church in Malibu.

For some reason, she still remembers it today.

The Last Day of Christmas

It's January 6--Epiphany--and our Christmas tree is still up. I bring Mom to our house after church to enjoy the tree one last day.

"Tomorrow we're going to take it down and clean up this room," I say.

"No, don't take it down," she begs.

When I take her back to Ocean View Assisted Living, she notices that the pretty lights and decorations in the third-floor elevator lobby are gone.

"The Christmas lights are gone!" she says with disappointment. "They threw them away."

"No, they just packed them away in boxes until next year," I explain.

"Do you think I'll be around to see it then?" she asks.

I pause: this is a serious question.

"Well, we don't know, do we? But I think so--you're not sick. You don't have any illness like cancer or anything."

The conversation moves on.

Note on Jan. 27: She occasionally comments, weeks later when we enter that elevator lobby, "Oh, the lights are gone!"