"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."
Tuesday, January 29, 2008
Monday, January 28, 2008
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.
Sunday, January 27, 2008
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.
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.
Sunday, January 20, 2008
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.
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.
Sunday, January 06, 2008
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!"
Monday, December 31, 2007
New Year's Eve
It's New Year's Eve, so at 2 pm I drive to Mom's residence and bring her to my house to enjoy the sunny and warm California afternoon.
Roz is sitting in the back yard talking on her cell phone, so I wheel Mom into the patio area by the flowers and put the chihuahua Irie into her lap... then I give Mom a plate of fruit to eat.
Bill brought some holly from his yard in Steilacoom, Washington, when he was here, so I show her the holly and put a branch of it in her hands.
"We used to call it kinnikinick. We'd go to the south hillside to get it," she says.
"This is holly," I say.
"Do you think it's the same thing as kinnikinick?" she asks. I don't know the answer to that one.
Then I wheel her inside the house and give her some chocolate cake to eat.
"Here's your Christmas apron," I say. "Do you remember when we sewed this? It was about ten years ago."
"Yes," she says, looking at the newspaper. I put Irie on her lap for a photo in front of the Christmas wreath she gave us twenty years ago. It has a custom-designed scene in the center with a miniature tree, fireplace, rocking chair, and toys. Over the fireplace is a painting of Pike's Peak, and nearby stands a miniature newspaper titled Los Angeles Times.
After the cake and photos, Roz comes in to talk.
"Tell her your dream," I prompt Grandma, but she is reluctant to do that.
When I had first arrived at her residence, she had told me that in the night Roz and her friends had been noisily swimming in the pool there (what pool?) and she had had to report them. At that point I didn't try to argue with her that it had just been a dream, but now I hope to clarify it.
Instead, Grandma is confused and embarrassed. Not much gets clarified.
"We need to go out now and buy a few things at the store," I say. "And then we'll go back." I break this news gently. I don't say, "Back to Ocean View Assisted Living."
I'm pretty sure she doesn't want to return, but I need to cook dinner and be available for my kids. I can't make pizza dough, fix quacamole, make a spinach salad, bake the pizza and then bake brownies while also toileting Grandma and supplying her with things to eat and do--but I feel bad for her spending New Year's Eve alone at her residence, dozing in her recliner.
On December 31 of 2005 and 2006 I kept her with us for part of the evening, or I slept at her house to give the private caregiver the night off. In 2003 and 2004 I let her sleep at our house on New Year's Eve and Christmas Eve, and I slept on the floor in the same room to jump up if she tried to get out of bed or called for help in the night. But now I am trying to limit the hours I put into her care.
Mom cooperates with leaving my house at 4:30 pm, and we drive to a market to get a cake, a platter of cookies, and a platter of hors d'oeuvres for the staff at Ocean View. I feel so grateful to them for working on New Year's Eve, a gratitude mixed with guilt that they are caring for Mom on this evening instead of me.
The lines in the grocery store are long, however, and Mom has to wait in the car for twenty minutes or more.
We park and I load her lap with the trays of goodies.
"This is for the people who work for you," I say.
"Oh good," she answers. "I like to be generous." We take the two elevators to her floor; then we do our bathroom routine and I wheel her into the dining area.
"But I don't want to go to dinner," she argues. "I'm not hungry."
Though she has snacked for two hours, I don't want to leave her isolated in her room. I need her to be in the dining area for an hour at 5 pm before she returns to her room and sits in her recliner until bedtime.
"You need your protein," I tell her. "There's some healthy food here, even though you had cake at my house."
A caregiver puts a delicious-looking bowl of soup in front of her: pieces of potato and broccoli in a thick cream. She stabs it viciously with her spoon.
"It's the same soup every day!" she says angrily. "The same soup every day!"
She does have soup every evening, different kinds that probably all blend into one in her mind.
Her anger, however, is at having to be back at Ocean View, in this dining room, instead of at my house with her family.
"Goodbye, I'll see you tomorrow," I say, slipping off as quietly as possible.
Saturday, October 20, 2007
Pity Party
The hardest thing about visiting my mother every day is responding to her self-pity.
The wheel chair, the lack of memory, the incontinence I can deal with, cheerfully.
Today I brought her to my house; we ate pumpkin pie and played with the dog.
As I started to put the dishes away and prepared to take her back to the car, this was her comment:
"At least you came to see me. Maybe you'll come again some day."
"I come every day, Mom!" I said. "You don't believe that, do you?"
"I guess you do," she answered. "But it seems like such a long time before you come."
It's never enough.
Most days when I leave her, whether it has been an hour visit or a six-hour outing, she says, "You'll come back tonight and put me to bed, won't you?"
"No, I can't come back," I say. "I need to cook dinner for John." Or "I need to grade papers for my class."
"Oh, of course, you need to take care of John," she says, reluctantly recognizing that I have a few people in my life besides her.
I leave feeling miserable, unable to shake the feeling that no matter how much I do, it is not enough. She is voracious.
The wheel chair, the lack of memory, the incontinence I can deal with, cheerfully.
Today I brought her to my house; we ate pumpkin pie and played with the dog.
As I started to put the dishes away and prepared to take her back to the car, this was her comment:
"At least you came to see me. Maybe you'll come again some day."
"I come every day, Mom!" I said. "You don't believe that, do you?"
"I guess you do," she answered. "But it seems like such a long time before you come."
It's never enough.
Most days when I leave her, whether it has been an hour visit or a six-hour outing, she says, "You'll come back tonight and put me to bed, won't you?"
"No, I can't come back," I say. "I need to cook dinner for John." Or "I need to grade papers for my class."
"Oh, of course, you need to take care of John," she says, reluctantly recognizing that I have a few people in my life besides her.
I leave feeling miserable, unable to shake the feeling that no matter how much I do, it is not enough. She is voracious.
Saturday, September 15, 2007
My Most Embarrassing Day
Of course it happened at a P.E.O. meeting in a lovely lady's home.
Mom had been on stool softeners for several weeks, and I thought the problem of her constipation had been solved. Keeping the right balance of Sorbitol, prune juice, and various foods in her diet was tricky, though--too much vs. too little of one thing or another.
It might have worked out if she hadn't been given Colase.
There we were at the P.E.O. special event for B.I.L.s ("Boy I Love," my grandmother once explained to me, but in 2007 it is known as "Brothers in Love," partly because so few spouses are still alive). We had two B.I.L.s at this dinner.
We had just started to eat the catered Italian cuisine when Mom said, "We have to go now. I feel sick. I don't want to stay."
Fool that I am, I insisted on staying another 45 minutes until we had been there about an hour.
But I began noticing a bad odor. She needs to go to the bathroom, I realized. She may even have had a BM in her Depend.
Taking her to the bathroom in this home was not an option--it was too small to get the wheelchair inside, and there was no bar for her to hold onto while I removed her nylons and Depends.
The odor got worse. I got worried. Mom insisted on leaving.
The ladies were very polite.
Finally we made our excuses and left, wheeling to where I had parked the car.
As I helped her into the car, I realized the BM was outside the Depend--all over her skirt, the wheelchair, the seat of my car.
I drove back to Ocean View Assisted Living as fast as I could.
In the parking lot, I put a blanket in the wheelchair before moving her into it.
Up in her room, I peeled down the Depend and found a mess--all over her nylons, shoes, skirt, the floor. On my clothes too.
Marnie, a kind caregiver, had figured out that something was afoot as I wheeled Mom back to her room and insisted on helping me. She was a lifesaver.
Together we cleaned up Mom and the bathroom. Then I gave Mom a shower, put her in her nightgown, and left her in Marnie's care.
Hindsight: had I known the extent of her problem, I would have left the party immediately when she first asked to leave. Instead we stayed as the odor got worse and worse...
My brother Bill listened to this story and said, "Colase--I use it to have a colonoscopy. It cleans you out fast."
"I didn't know," I moaned.
From now on: no more Colase.
Mom had been on stool softeners for several weeks, and I thought the problem of her constipation had been solved. Keeping the right balance of Sorbitol, prune juice, and various foods in her diet was tricky, though--too much vs. too little of one thing or another.
It might have worked out if she hadn't been given Colase.
There we were at the P.E.O. special event for B.I.L.s ("Boy I Love," my grandmother once explained to me, but in 2007 it is known as "Brothers in Love," partly because so few spouses are still alive). We had two B.I.L.s at this dinner.
We had just started to eat the catered Italian cuisine when Mom said, "We have to go now. I feel sick. I don't want to stay."
Fool that I am, I insisted on staying another 45 minutes until we had been there about an hour.
But I began noticing a bad odor. She needs to go to the bathroom, I realized. She may even have had a BM in her Depend.
Taking her to the bathroom in this home was not an option--it was too small to get the wheelchair inside, and there was no bar for her to hold onto while I removed her nylons and Depends.
The odor got worse. I got worried. Mom insisted on leaving.
The ladies were very polite.
Finally we made our excuses and left, wheeling to where I had parked the car.
As I helped her into the car, I realized the BM was outside the Depend--all over her skirt, the wheelchair, the seat of my car.
I drove back to Ocean View Assisted Living as fast as I could.
In the parking lot, I put a blanket in the wheelchair before moving her into it.
Up in her room, I peeled down the Depend and found a mess--all over her nylons, shoes, skirt, the floor. On my clothes too.
Marnie, a kind caregiver, had figured out that something was afoot as I wheeled Mom back to her room and insisted on helping me. She was a lifesaver.
Together we cleaned up Mom and the bathroom. Then I gave Mom a shower, put her in her nightgown, and left her in Marnie's care.
Hindsight: had I known the extent of her problem, I would have left the party immediately when she first asked to leave. Instead we stayed as the odor got worse and worse...
My brother Bill listened to this story and said, "Colase--I use it to have a colonoscopy. It cleans you out fast."
"I didn't know," I moaned.
From now on: no more Colase.
Tuesday, September 11, 2007
Calcium--The Culprit
After weeks of trying to balance Mom's diet and relieve her constipation, we now have the solution: Just reduce her calcium pills to one a day.
In July her calcium was changed to three times per day, and soon afterward, her constipation began.
Today after reviewing all Mom's recent medical history, Dr. Rosen suddenly realized that the calcium increase was probably the cause of her constipation.
I take 2000 mg. of calcium per day with no ill effects, so it never occurred to me that calcium was the problem. But Dr. Rosen said sometimes it can cause this problem.
So we have changed the calcium back to 500 mg. per day, and added Sorbitol and Colase temporarily until her stools become normal again.
In July her calcium was changed to three times per day, and soon afterward, her constipation began.
Today after reviewing all Mom's recent medical history, Dr. Rosen suddenly realized that the calcium increase was probably the cause of her constipation.
I take 2000 mg. of calcium per day with no ill effects, so it never occurred to me that calcium was the problem. But Dr. Rosen said sometimes it can cause this problem.
So we have changed the calcium back to 500 mg. per day, and added Sorbitol and Colase temporarily until her stools become normal again.
Tuesday, August 21, 2007
And the Answer Is...
Constipation.
It turned out that "My bottom hurts" meant that she urgently needed to move her bowels, but was restricting because the movement would be painful.
When I first discovered the problem, I had to wear gloves and apply pressure around the opening of the rectum to force out the dry hard marbles... she screamed but it was necessary.
Thus began a week or two of medications to soften her stools... until diarrhea occurred.
It turned out that "My bottom hurts" meant that she urgently needed to move her bowels, but was restricting because the movement would be painful.
When I first discovered the problem, I had to wear gloves and apply pressure around the opening of the rectum to force out the dry hard marbles... she screamed but it was necessary.
Thus began a week or two of medications to soften her stools... until diarrhea occurred.
Monday, August 20, 2007
Puzzling Over Her Symptoms
I returned from being gone for almost two weeks to find my mother with a new set of symptoms but otherwise okay, just a little weaker and more confused.
She knew that Marie had visited her, but she confused her with Emily, my sister.
"How are you feeling?" I asked.
"My bottom hurts. I have a bladder infection," she answered.
I had made 6-8 phone calls earlier in the day to set up an appointment with a nurse for a catheterization, just on Marie's report of two days earlier, so I could answer Mom with, "Would you like to go to the doctor to check on it?"
"No," was her answer, but we went anyway. We have a regularly scheduled appointment with the doctor for next week, so whether positive or negative, this urine culture will provide information.
We accomplished it, with much pain and stress for Mom. I had taken her to the toilet just before the catheterization, but she hadn't urinated, as usual. Furthermore, her Depend was completely dry. The procedure, however, released 600 cc's of urine, so her bladder was full.
The puzzle is: why can't she urinate easily?
Her caregivers at Sunrise reported that she may be constipated.
Or is the problem an obstruction in the ureter?
I don't know... I will ask her caregivers to chart all bowel movements and major soaking of her Depend. Perhaps with a week of careful observation we can figure it out at the coming visit to the doctor.
She knew that Marie had visited her, but she confused her with Emily, my sister.
"How are you feeling?" I asked.
"My bottom hurts. I have a bladder infection," she answered.
I had made 6-8 phone calls earlier in the day to set up an appointment with a nurse for a catheterization, just on Marie's report of two days earlier, so I could answer Mom with, "Would you like to go to the doctor to check on it?"
"No," was her answer, but we went anyway. We have a regularly scheduled appointment with the doctor for next week, so whether positive or negative, this urine culture will provide information.
We accomplished it, with much pain and stress for Mom. I had taken her to the toilet just before the catheterization, but she hadn't urinated, as usual. Furthermore, her Depend was completely dry. The procedure, however, released 600 cc's of urine, so her bladder was full.
The puzzle is: why can't she urinate easily?
Her caregivers at Sunrise reported that she may be constipated.
Or is the problem an obstruction in the ureter?
I don't know... I will ask her caregivers to chart all bowel movements and major soaking of her Depend. Perhaps with a week of careful observation we can figure it out at the coming visit to the doctor.
Saturday, August 18, 2007
Another UTI?
My daughter Marie visited Grandma today and reported that she may have a bladder infection. She's saying, "My bottom hurts."
I can't do anything because I'm out of town.
I can't do anything because I'm out of town.
Thursday, August 16, 2007
"Loved Ones in Limbo" WSJ
"Waiting for the End: When Loved Ones Are Lost in Limbo" by Jeff Zaslow appears in today's Wall Street Journal, August 16, 2007, section D, page 1.
"Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states," Zaslow explains. "For their loved one, 'coping with the ambiguity creates a unique type of stress,''" according to a researcher. (See full article below.)
This exactly captures the situation I find myself in with my mother.
Wall Street Journal, Aug. 16, p. D1
MOVING ON By JEFF ZASLOW
Waiting for the End:When Loved OnesAre Lost in LimboAugust 16, 2007; Page D1
In the days after the Aug. 1 Minneapolis bridge collapse, families of the missing stood by the Mississippi River, waiting for word. Some 1,300 miles away, in Virginia Beach, Va., a widower named Matt Buckley found himself empathizing with their sadness and sense of uncertainty.
"I know that feeling of limbo," he says. "I can picture myself staring into that murky water, wondering and hoping. That's how I felt when I'd sit with my wife, wondering what was in her head: Are you there? Are you with us?"
Don Erickson, trapped in a Utah mine, in a photo held by his wife.
In 2004, Mr. Buckley's 44-year-old wife, Mary, had routine foot surgery and, because of an anesthesia mishap, suffered massive brain damage. She spent 30 months in a coma before dying last year.
The loved ones of those still missing in the Mississippi -- and in last week's Utah coal-mine collapse -- know they will likely have to deal with death. But first, like Mr. Buckley, they must deal with limbo, an increasingly common way station in the grief process today. It's a stage of mourning that researchers say deserves more attention.
"We're prolonging life, but we're also prolonging dying," says Mercedes Bern-Klug, an end-of-life researcher at the University of Iowa, who studies what she terms "ambiguous dying syndrome." Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states. For their loved ones, "coping with the ambiguity creates a unique type of stress," says Dr. Bern-Klug. "It's a form of angst we don't even have a name for in our culture."
Like families, corporations and nations are often unprepared for the repercussions of limbo. When ABC News anchor Bob Woodruff suffered a near-fatal head wound in Iraq, ABC had no firm contingency plan. Israel's former prime minister Ariel Sharon has been in a coma since January 2006, and Israel's government has moved on fitfully.
On the home front, the emotional toll of limbo can be excruciating. After Mary Buckley was left in a vegetative state with her eyes open, Mr. Buckley and his four sons endured false hopes offered by doctors, and their own feelings of helplessness and guilt. "I visited almost every day, but it was more out of a sense of duty than love," says Mr. Buckley. "The woman I married was gone."
During his wife's second year in a coma, Mr. Buckley developed romantic feelings for a widow who worked at a disability group. They proceeded slowly. She told him: "I feel like your mistress. You're still married." He replied: "I am and I'm not." By the time his wife died last October, Mr. Buckley had worked through his grief. "What I felt then was relief."
FORUM
Join Jeff Zaslow and other readers in a discussion on limbo and grief.
At the bridge in Minneapolis, there was also relief last week when the bodies of Sadiya Sahal and her young daughter were finally found. Ms. Sahal came from Somalia, where in Muslim culture it is crucial for someone to be considered either alive or dead. Not having their bodies was "mental torment" for Ms. Sahal's loved ones, and they were grateful to have closure, says Omar Jamal, a family friend and spokesman.
In Saugus, Calif., John Colvin will be in limbo indefinitely. His wife remains severely cognitively impaired nine years after suffering a ruptured aneurysm in her brain. Now 61 years old and otherwise healthy, she may live for decades. Mr. Colvin, a religious man, vows not to seek sexual intimacy elsewhere. "I could have become a hard-core alcoholic," he says, but instead he found solace in a caregivers' support group.
The group's members remind each other not to be martyrs and to care for themselves first. They also give each other permission to joke about their ordeal, and to fantasize about an end to it. One of their mottos: "You can think terrible thoughts as long as you don't say them."
As medical advances continue to "deform the dying process," Dr. Bern-Klug predicts, families will have to deal with variations of limbo that are now unimaginable. It's territory that must be charted carefully, she says, as more of us share that experience of standing on a riverbank, waiting.
. Email: Jeffrey.Zaslow@wsj.com.
"Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states," Zaslow explains. "For their loved one, 'coping with the ambiguity creates a unique type of stress,''" according to a researcher. (See full article below.)
This exactly captures the situation I find myself in with my mother.
Wall Street Journal, Aug. 16, p. D1
MOVING ON By JEFF ZASLOW
Waiting for the End:When Loved OnesAre Lost in LimboAugust 16, 2007; Page D1
In the days after the Aug. 1 Minneapolis bridge collapse, families of the missing stood by the Mississippi River, waiting for word. Some 1,300 miles away, in Virginia Beach, Va., a widower named Matt Buckley found himself empathizing with their sadness and sense of uncertainty.
"I know that feeling of limbo," he says. "I can picture myself staring into that murky water, wondering and hoping. That's how I felt when I'd sit with my wife, wondering what was in her head: Are you there? Are you with us?"
Don Erickson, trapped in a Utah mine, in a photo held by his wife.
In 2004, Mr. Buckley's 44-year-old wife, Mary, had routine foot surgery and, because of an anesthesia mishap, suffered massive brain damage. She spent 30 months in a coma before dying last year.
The loved ones of those still missing in the Mississippi -- and in last week's Utah coal-mine collapse -- know they will likely have to deal with death. But first, like Mr. Buckley, they must deal with limbo, an increasingly common way station in the grief process today. It's a stage of mourning that researchers say deserves more attention.
"We're prolonging life, but we're also prolonging dying," says Mercedes Bern-Klug, an end-of-life researcher at the University of Iowa, who studies what she terms "ambiguous dying syndrome." Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states. For their loved ones, "coping with the ambiguity creates a unique type of stress," says Dr. Bern-Klug. "It's a form of angst we don't even have a name for in our culture."
Like families, corporations and nations are often unprepared for the repercussions of limbo. When ABC News anchor Bob Woodruff suffered a near-fatal head wound in Iraq, ABC had no firm contingency plan. Israel's former prime minister Ariel Sharon has been in a coma since January 2006, and Israel's government has moved on fitfully.
On the home front, the emotional toll of limbo can be excruciating. After Mary Buckley was left in a vegetative state with her eyes open, Mr. Buckley and his four sons endured false hopes offered by doctors, and their own feelings of helplessness and guilt. "I visited almost every day, but it was more out of a sense of duty than love," says Mr. Buckley. "The woman I married was gone."
During his wife's second year in a coma, Mr. Buckley developed romantic feelings for a widow who worked at a disability group. They proceeded slowly. She told him: "I feel like your mistress. You're still married." He replied: "I am and I'm not." By the time his wife died last October, Mr. Buckley had worked through his grief. "What I felt then was relief."
FORUM
Join Jeff Zaslow and other readers in a discussion on limbo and grief.
At the bridge in Minneapolis, there was also relief last week when the bodies of Sadiya Sahal and her young daughter were finally found. Ms. Sahal came from Somalia, where in Muslim culture it is crucial for someone to be considered either alive or dead. Not having their bodies was "mental torment" for Ms. Sahal's loved ones, and they were grateful to have closure, says Omar Jamal, a family friend and spokesman.
In Saugus, Calif., John Colvin will be in limbo indefinitely. His wife remains severely cognitively impaired nine years after suffering a ruptured aneurysm in her brain. Now 61 years old and otherwise healthy, she may live for decades. Mr. Colvin, a religious man, vows not to seek sexual intimacy elsewhere. "I could have become a hard-core alcoholic," he says, but instead he found solace in a caregivers' support group.
The group's members remind each other not to be martyrs and to care for themselves first. They also give each other permission to joke about their ordeal, and to fantasize about an end to it. One of their mottos: "You can think terrible thoughts as long as you don't say them."
As medical advances continue to "deform the dying process," Dr. Bern-Klug predicts, families will have to deal with variations of limbo that are now unimaginable. It's territory that must be charted carefully, she says, as more of us share that experience of standing on a riverbank, waiting.
. Email: Jeffrey.Zaslow@wsj.com.
Saturday, June 16, 2007
No, I Did Not Marry
One of the ironies of Mom's life is that every six months she has to sign a statement that she has not remarried. If we do not get these pieces of paper sent in, her US military annuitant paychecks stop coming.
Never mind that she is 88 years old, incontinent, afflicted with dementia, and in a wheelchair.
The US military thinks she might remarry. She became a widow in 1993, and it's now 2007, but they're convinced she might still scare up a suitor or two.
Here's the letter they send:
Certificate of Eligibility
We have not received the Certificate of Eligibility (COE) we previously sent you.
We have suspended your annuity until we receive a completed COE.
Please complete, sign, and return this COE to Defense Finance & Accounting Services, US Military Annuitant Pay, PO Box 7131, London, KY 40742-7131.
If you have any questions, call toll free 1-800-321-1080.
Your marital status is required to update your account, please attach a copy of your marriage certificate.
___ I did not marry in the past year.
___ I married in the past year (please attach a copy of your marriage certificate).
Nothing I write to them on these forms can convince them that she is in imminent danger of remarrying and thus becoming disqualified for this pension.
Maybe we should fly to Kentucky and present the evidence.
I don't explain the form to Mom any more, joking that they wonder if she remarried.
It just starts her thinking and talking about the delicious possibility of remarrying.
Never mind that she is 88 years old, incontinent, afflicted with dementia, and in a wheelchair.
The US military thinks she might remarry. She became a widow in 1993, and it's now 2007, but they're convinced she might still scare up a suitor or two.
Here's the letter they send:
Certificate of Eligibility
We have not received the Certificate of Eligibility (COE) we previously sent you.
We have suspended your annuity until we receive a completed COE.
Please complete, sign, and return this COE to Defense Finance & Accounting Services, US Military Annuitant Pay, PO Box 7131, London, KY 40742-7131.
If you have any questions, call toll free 1-800-321-1080.
Your marital status is required to update your account, please attach a copy of your marriage certificate.
___ I did not marry in the past year.
___ I married in the past year (please attach a copy of your marriage certificate).
Nothing I write to them on these forms can convince them that she is in imminent danger of remarrying and thus becoming disqualified for this pension.
Maybe we should fly to Kentucky and present the evidence.
I don't explain the form to Mom any more, joking that they wonder if she remarried.
It just starts her thinking and talking about the delicious possibility of remarrying.
An Animated Day
When I arrived at Mom's room at 3:45 pm, I found her telling stories with delight and great animation to two caregivers, Susan and Christina.
She sat in her wheelchair talking and laughing, her pink face full of life and joy.
They stood there watching her and laughing at her tales about her husband.
"So you enjoyed your husband. He was a good man. Here's Anne," they said finally after I watched for a few moments.
"Yes, and she's the product!" Mom exclaimed.
They laughed.
She wanted to go out and get French fries, to do something.
I'd been planning to take her to my house, in case my kids might be around for her to enjoy, but then I decided just to wheel her to the local deli to get French fries, as well as pick up that tube of Calmoseptine I'd reserved at the medical products store.
But as we were going out the door, my daughter Roz called on my cell phone. I wanted to talk to her, so I kept talking while pushing the wheelchair to Wilshire. Whenever I paused and just stood at an intersection talking, Mom demanded to know where we were going and why, so I pushed her to Von's, bought some kitchen waste bin liners, walked to the health store which had closed a half hour earlier, and went to the deli.
I tried to put the cell phone to her ear for her to listen and talk to Roz, but it didn't work. She doesn't hear phones or cell phones well any more.
Finally I ended the conversation, got the fries, and wheeled her back to her residence.
There she was happy to go to dinner and wanted to share her French fries with everyone.
I was able to leave without great angst on her part or mine.
A good day, but when I got home and found that two of my daughters were home, I wished I had brought her here to enjoy talking with them.
She sat in her wheelchair talking and laughing, her pink face full of life and joy.
They stood there watching her and laughing at her tales about her husband.
"So you enjoyed your husband. He was a good man. Here's Anne," they said finally after I watched for a few moments.
"Yes, and she's the product!" Mom exclaimed.
They laughed.
She wanted to go out and get French fries, to do something.
I'd been planning to take her to my house, in case my kids might be around for her to enjoy, but then I decided just to wheel her to the local deli to get French fries, as well as pick up that tube of Calmoseptine I'd reserved at the medical products store.
But as we were going out the door, my daughter Roz called on my cell phone. I wanted to talk to her, so I kept talking while pushing the wheelchair to Wilshire. Whenever I paused and just stood at an intersection talking, Mom demanded to know where we were going and why, so I pushed her to Von's, bought some kitchen waste bin liners, walked to the health store which had closed a half hour earlier, and went to the deli.
I tried to put the cell phone to her ear for her to listen and talk to Roz, but it didn't work. She doesn't hear phones or cell phones well any more.
Finally I ended the conversation, got the fries, and wheeled her back to her residence.
There she was happy to go to dinner and wanted to share her French fries with everyone.
I was able to leave without great angst on her part or mine.
A good day, but when I got home and found that two of my daughters were home, I wished I had brought her here to enjoy talking with them.
Friday, June 15, 2007
A Sleepy Day
Good news: the bacteria causing the UTI is Enterococcus, which is susceptible to Levoquin, but even more to Amoxycillin. So Dr. Rosen will switch her to Amoxycillin and "run the susceptibilities" on the culture just to make sure.
Anyway, she won't have to have an IV, which would necessitate her leaving Sunrise for a week again. That means I can leave for a week, as planned, without having her in the hospital.
With that issue out of the way, I meant to visit Mom at 2 pm and leave for Pasadena at 3:30 pm, to avoid traffic for a dinner date with John and two friends.
But I had other work to do, including writing about Calmoseptine on this blog, so I didn't arrive until 3:45 at her residence.
What if she's talkative, wants to come to my house? I worried.
"She's having a sleepy day," reported Marnie, the head caregiver.
Indeed she was sound asleep in her recliner, unrousable. What a relief that she wasn't going to be demanding and slow me down.
I bustled around setting up a new laundry hamper I'd bought, putting away Depends and Calmoseptine.
Then I tried again to rouse her, and she responded a little. I took her to the bathroom and then asked, "Would you like to go to dinner or go back to your big chair?"
"I want to go to my chair," she answered and I got her all set up therewith pillows, music on the CD player, etc.
"Okay, I'll leave you now," I said, "Unless you want to go to dinner now."
"Oh, I guess I could go to dinner," she said.
So I put her shoes back on, got her in the wheel chair, turned off the music and took her early to dinner.
By then it was 4:40. I ran to the elevator to begin my commute to downtown LA to pick up John and then drive to Pasadena against the traffic for the Dodgers game.
But at least she was happy and had been toileted and had had more stimulation than if I'd left her sitting in the chair.
At least she wasn't sad and whimpering like yesterday. Maybe the antibiotic was working to end the bladder infection.
Anyway, she won't have to have an IV, which would necessitate her leaving Sunrise for a week again. That means I can leave for a week, as planned, without having her in the hospital.
With that issue out of the way, I meant to visit Mom at 2 pm and leave for Pasadena at 3:30 pm, to avoid traffic for a dinner date with John and two friends.
But I had other work to do, including writing about Calmoseptine on this blog, so I didn't arrive until 3:45 at her residence.
What if she's talkative, wants to come to my house? I worried.
"She's having a sleepy day," reported Marnie, the head caregiver.
Indeed she was sound asleep in her recliner, unrousable. What a relief that she wasn't going to be demanding and slow me down.
I bustled around setting up a new laundry hamper I'd bought, putting away Depends and Calmoseptine.
Then I tried again to rouse her, and she responded a little. I took her to the bathroom and then asked, "Would you like to go to dinner or go back to your big chair?"
"I want to go to my chair," she answered and I got her all set up therewith pillows, music on the CD player, etc.
"Okay, I'll leave you now," I said, "Unless you want to go to dinner now."
"Oh, I guess I could go to dinner," she said.
So I put her shoes back on, got her in the wheel chair, turned off the music and took her early to dinner.
By then it was 4:40. I ran to the elevator to begin my commute to downtown LA to pick up John and then drive to Pasadena against the traffic for the Dodgers game.
But at least she was happy and had been toileted and had had more stimulation than if I'd left her sitting in the chair.
At least she wasn't sad and whimpering like yesterday. Maybe the antibiotic was working to end the bladder infection.
Calmoseptine
I feel like I'm about to make a heist as I pull up in front of Long's Drugstore to try to get Calmoseptine.
Will it work? Will I walk out the door with two tubes of the stuff, gloating in victory?
Or will I fail?
These days Calmoseptine is practically a controlled substance. It's not out on the shelf of Rite-Aid or CVS. Why, I don't know. It's not like you could manufacture speed out of it.
I walk in optimistically and find the baby products aisle. Desitin, A & D cream with zinc oxide but no Calmoseptine.
I used to buy the A & D, but when Mom was diagnosed with a stage one bedsore, I learned that Calmoseptine is the best treatment (along with a gel mattress and gel seat for her wheelchair).
So I approach the pharmacists, safely behind their counter.
"Can I help you?" one of them asks.
I contemplate my answer, tempted to reply "That's an interesting question. I hope you can, but I've encountered brick walls at so many other drug stores that I doubt it."
Instead I smile sweetly and say, "Yes, ma'am. Do you have any Calmoseptine?"
"Yes, we do--no, actually we may be out," she answers, checking a shelf behind the counter. "Would you like to order it? We can have it by Monday."
Three days from now I will be in Santa Fe for a conference, so I won't be able to pick it up for ten days. Nevertheless, a tube on order is worth two in some warehouse somewhere.
"Yes," I answer wearily. I've placed orders before at the Rite-Aid I visit on a daily basis. How am I going to remember to pick this up at Long's, where I don't usually shop?
So much for the idea of just walking in and out with Calmoseptine.
"Why isn't the Calmoseptine out on the shelf with the Desitin and other products like that?" I then ask.
"Because there's a cost to us of keeping it out on the shelf," she answers.
I don't know whether she means people will shoplift the stuff or whether it just occupies valuable shelf space where more profitable products could be displayed. I don't ask.
It takes another five minutes to place the order. Then I walk over to the Depends, which I need to buy before my trip, hoping to walk out the door with something anyway and avoid another trip to a drugstore this afternoon when I visit Mom.
The price is $15.49 for a package of 18 refastenables, higher than I've ever seen before. "No!" I say to myself and turn to walk out of the store empty-handed.
But then I'm tempted by the thought of not having to enter another big store today, just visiting Mom and not having to take her shopping.
"My time is worth a couple extra dollars," I decide and take two packages to the check-out counter.
"How are you today? Did you find everything you need?" the checker inquires politely.
"No, actually I didn't," I reply. "You don't have Calmoseptine."
She cheerfully expresses her regret, and I walk out the door with my two $15.49 packages of Depends.
Defeated. Getting into my car to drive off, I realize that I'm upset, close to tears.
Is that crazy or what? Crying because I can't get Calmoseptine?
This morning I'd been reading Psalm 73, which says, "Whom have I in heaven but you? And having you, I desire nothing upon earth."
Except Calmoseptine.
I remember that the Rite-Aid pharmacist said they can't even order Calmoseptine any more; she suggested going to a medical products store.
While driving I call 411 and get the phone number of the store, which is within walking distance of Mom's residence. Maybe I can wheel her there for an outing this afternoon if they have Calmoseptine.
"Yes, we have it," says the clerk after checking the shelf. "Shall I hold it for you?"
"Yes--can I get two tubes?" I ask.
"No, we only have one," she says. "It's $11.95."
"Fine," I answer, my irritation level rising again. This stuff is gold.
I drive on to do other errands: the bank, the dry cleaners, and the small drugstore where I fill my own prescriptions. Why can't these stores keep ten tubes on hand?
Waiting for my prescription of Actonel, I inquire in a low-key way about Calmoseptine. No use getting my hopes up.
"Yes, it's right here," answers the clerk, going to get it off a nearby shelf where the tubes sit with every other skin product, completely accessible to customers.
I'm dumbfounded.
"There are just two tubes," she says. "We need to reorder. It's $7.50."
"Wonderful!" I say, resisting the impulse to hug her and the pharmacist.
Note to myself: buy Calmoseptine here.
And no need to read the front-page story on Newsweek this week, all about the stress of caregiving.
I think I could write it.
Will it work? Will I walk out the door with two tubes of the stuff, gloating in victory?
Or will I fail?
These days Calmoseptine is practically a controlled substance. It's not out on the shelf of Rite-Aid or CVS. Why, I don't know. It's not like you could manufacture speed out of it.
I walk in optimistically and find the baby products aisle. Desitin, A & D cream with zinc oxide but no Calmoseptine.
I used to buy the A & D, but when Mom was diagnosed with a stage one bedsore, I learned that Calmoseptine is the best treatment (along with a gel mattress and gel seat for her wheelchair).
So I approach the pharmacists, safely behind their counter.
"Can I help you?" one of them asks.
I contemplate my answer, tempted to reply "That's an interesting question. I hope you can, but I've encountered brick walls at so many other drug stores that I doubt it."
Instead I smile sweetly and say, "Yes, ma'am. Do you have any Calmoseptine?"
"Yes, we do--no, actually we may be out," she answers, checking a shelf behind the counter. "Would you like to order it? We can have it by Monday."
Three days from now I will be in Santa Fe for a conference, so I won't be able to pick it up for ten days. Nevertheless, a tube on order is worth two in some warehouse somewhere.
"Yes," I answer wearily. I've placed orders before at the Rite-Aid I visit on a daily basis. How am I going to remember to pick this up at Long's, where I don't usually shop?
So much for the idea of just walking in and out with Calmoseptine.
"Why isn't the Calmoseptine out on the shelf with the Desitin and other products like that?" I then ask.
"Because there's a cost to us of keeping it out on the shelf," she answers.
I don't know whether she means people will shoplift the stuff or whether it just occupies valuable shelf space where more profitable products could be displayed. I don't ask.
It takes another five minutes to place the order. Then I walk over to the Depends, which I need to buy before my trip, hoping to walk out the door with something anyway and avoid another trip to a drugstore this afternoon when I visit Mom.
The price is $15.49 for a package of 18 refastenables, higher than I've ever seen before. "No!" I say to myself and turn to walk out of the store empty-handed.
But then I'm tempted by the thought of not having to enter another big store today, just visiting Mom and not having to take her shopping.
"My time is worth a couple extra dollars," I decide and take two packages to the check-out counter.
"How are you today? Did you find everything you need?" the checker inquires politely.
"No, actually I didn't," I reply. "You don't have Calmoseptine."
She cheerfully expresses her regret, and I walk out the door with my two $15.49 packages of Depends.
Defeated. Getting into my car to drive off, I realize that I'm upset, close to tears.
Is that crazy or what? Crying because I can't get Calmoseptine?
This morning I'd been reading Psalm 73, which says, "Whom have I in heaven but you? And having you, I desire nothing upon earth."
Except Calmoseptine.
I remember that the Rite-Aid pharmacist said they can't even order Calmoseptine any more; she suggested going to a medical products store.
While driving I call 411 and get the phone number of the store, which is within walking distance of Mom's residence. Maybe I can wheel her there for an outing this afternoon if they have Calmoseptine.
"Yes, we have it," says the clerk after checking the shelf. "Shall I hold it for you?"
"Yes--can I get two tubes?" I ask.
"No, we only have one," she says. "It's $11.95."
"Fine," I answer, my irritation level rising again. This stuff is gold.
I drive on to do other errands: the bank, the dry cleaners, and the small drugstore where I fill my own prescriptions. Why can't these stores keep ten tubes on hand?
Waiting for my prescription of Actonel, I inquire in a low-key way about Calmoseptine. No use getting my hopes up.
"Yes, it's right here," answers the clerk, going to get it off a nearby shelf where the tubes sit with every other skin product, completely accessible to customers.
I'm dumbfounded.
"There are just two tubes," she says. "We need to reorder. It's $7.50."
"Wonderful!" I say, resisting the impulse to hug her and the pharmacist.
Note to myself: buy Calmoseptine here.
And no need to read the front-page story on Newsweek this week, all about the stress of caregiving.
I think I could write it.
Thursday, June 14, 2007
A Light Day
I only saw Mom briefly today from 12:30 to 1:15 pm.
I knew her private caregiver would come at 2 pm, so I took the day off. I took the Depends and other things I had bought, toileted her, talked to her briefly, and left her in her recliner with '40s music on.
What a relief that two days a week I still pay a caregiver to be with her for eight hours.
I left a note about her bladder infection and rushed off to my own 2 pm therapy appointment.
I knew her private caregiver would come at 2 pm, so I took the day off. I took the Depends and other things I had bought, toileted her, talked to her briefly, and left her in her recliner with '40s music on.
What a relief that two days a week I still pay a caregiver to be with her for eight hours.
I left a note about her bladder infection and rushed off to my own 2 pm therapy appointment.
Wednesday, June 13, 2007
The Missing Rings
It's a great day: no doctor appointments or PT for Mom, just PT for me at 3 pm. But I have the news that she has a serious urinary tract infection.
I arrive at 2:30 pm to take her down for the music program, every Wednesday at 3 pm. Usually they don't take her to that--after all, they have 28 people they could bring to the first floor for it, and she likes to sleep in her recliner in the afternoon.
When I find her and bring her down for it, I immediately notice that her opal ring, usually on the ring finger of her right hand, is missing. In its place are the silver diamond ring and wedding band from her left hand. Her three-pearl ring is on the wrong hand too.
"Where are your rings?" I ask her.
"Take my rings off," she says with agitation. "They're going to steal them. I want to give them to my granddaughters."
I'm confused: did she removed the rings, or did some member of the staff steal them?
I leave a note in the Reminiscence Neighborhood office asking about this, and very quickly Elisa comes to talk to me: "She was agitated today. She take her rings off. I look in her bed, find this one. I can't find the other one."
"Oh, thanks for telling me," I say. "I'll take her bed apart and look for the opal ring."
There it was, on the floor between the bed and the wall. I put it on my hand to take home.
I also took the three-pearl ring, her original engagement ring, worn all her life. No use letting that get lost. Now her only rings are her wedding band with diamond and the other gold band that went with the pearl ring.
After leaving her at the music, I went to PT.
Then I came back at 4:15 pm to check on her. She was exhausted from sitting downstairs for the music since 2:30 pm. Actually, she was too sleeply for dinner.
"I don't want any dinner," she said. "I want to sit in my chair."
I felt that she had to go to dinner, so after toileting I took her into the dining room, even though she was saying, "No, no. I don't want to go to dinner. I want to go to your house."
"Not today," I said, but I was feeling guilty. I really hadn't spent any time with her, and she has a serious bladder infection.
She continued to whimper and to say, "Don't leave me here! I want to go with you. I don't want to eat dinner."
Marnie, the head caregiver, came up to her and said, "I have soup. You like your soup, Evelyn."
"Yes," she agreed.
"I'll give you some soup," she said.
"Okay," Mom said.
"Enjoy your dinner," I said. "I'll see you tomorrow."
"Can't you stay with me?" she asked.
"No, I have to cook dinner," I said. "Marie's waiting for me."
I slipped out of the dining room and off to the elevator to punch in the code that enables my escape from her demands, from the Reminiscence Neighborhood.
But my heart sank with sympathy for her demands as I walked off: she is sick with an infection, confused, just wants to be with me or at my house.
Spending time there caring for her or taking her to appointments is difficult, but leaving is difficult too.
Always I have the feeling that I have not done enough, that she would like me to stay longer.
She's miserable, and I leave feeling miserable about abandoning her.
There's no respite from that sadness. There's only the conviction that I need to take care of myself and accomplish some of my own goals in any given day.
But it's so hard.
I arrive at 2:30 pm to take her down for the music program, every Wednesday at 3 pm. Usually they don't take her to that--after all, they have 28 people they could bring to the first floor for it, and she likes to sleep in her recliner in the afternoon.
When I find her and bring her down for it, I immediately notice that her opal ring, usually on the ring finger of her right hand, is missing. In its place are the silver diamond ring and wedding band from her left hand. Her three-pearl ring is on the wrong hand too.
"Where are your rings?" I ask her.
"Take my rings off," she says with agitation. "They're going to steal them. I want to give them to my granddaughters."
I'm confused: did she removed the rings, or did some member of the staff steal them?
I leave a note in the Reminiscence Neighborhood office asking about this, and very quickly Elisa comes to talk to me: "She was agitated today. She take her rings off. I look in her bed, find this one. I can't find the other one."
"Oh, thanks for telling me," I say. "I'll take her bed apart and look for the opal ring."
There it was, on the floor between the bed and the wall. I put it on my hand to take home.
I also took the three-pearl ring, her original engagement ring, worn all her life. No use letting that get lost. Now her only rings are her wedding band with diamond and the other gold band that went with the pearl ring.
After leaving her at the music, I went to PT.
Then I came back at 4:15 pm to check on her. She was exhausted from sitting downstairs for the music since 2:30 pm. Actually, she was too sleeply for dinner.
"I don't want any dinner," she said. "I want to sit in my chair."
I felt that she had to go to dinner, so after toileting I took her into the dining room, even though she was saying, "No, no. I don't want to go to dinner. I want to go to your house."
"Not today," I said, but I was feeling guilty. I really hadn't spent any time with her, and she has a serious bladder infection.
She continued to whimper and to say, "Don't leave me here! I want to go with you. I don't want to eat dinner."
Marnie, the head caregiver, came up to her and said, "I have soup. You like your soup, Evelyn."
"Yes," she agreed.
"I'll give you some soup," she said.
"Okay," Mom said.
"Enjoy your dinner," I said. "I'll see you tomorrow."
"Can't you stay with me?" she asked.
"No, I have to cook dinner," I said. "Marie's waiting for me."
I slipped out of the dining room and off to the elevator to punch in the code that enables my escape from her demands, from the Reminiscence Neighborhood.
But my heart sank with sympathy for her demands as I walked off: she is sick with an infection, confused, just wants to be with me or at my house.
Spending time there caring for her or taking her to appointments is difficult, but leaving is difficult too.
Always I have the feeling that I have not done enough, that she would like me to stay longer.
She's miserable, and I leave feeling miserable about abandoning her.
There's no respite from that sadness. There's only the conviction that I need to take care of myself and accomplish some of my own goals in any given day.
But it's so hard.
Really Bad UTI
"You were right," said Dr. Rosen when I answered my cell phone. "She has a really bad UTI."
"It was just a wild guess, really," I said. "Because when we were at physical therapy Monday she said 'My bottom hurts.' She'd said that the Thursday before too, when the PT asked her if the range-of-movement exercises were hurting her. We didn't know if it was arthritis in her hips or pelvis from previous fractures or if it was a bladder infection."
"Well, you know your mother," Dr. Rosen insisted. "You know how to interpret what she says. I'm going to start her on Levoquin and when I get the results of the culture we can see where to go from there."
I put down the cell phone and reflected: all that effort yesterday to get the urine sample, and it turns out to have been very important.
She could have had it for weeks without anyone knowing or treating it. Perhaps she did have it for weeks. There's no way to know until she makes some kind of vague statement or becomes really angry and combative.
It's a complete guessing game, and it's up to me. If I am not alert enough to the cues, she will continue to have an infection.
Will this UTI be treatable by antibiotics taken by mouth? Or will she be ordered onto medication by IV again? In that case, she will have to go to skilled nursing or the hospital in order to have the IV.
She has been on Macrodantin (nitrofurantoin), 50 mg at bedtime, for a month in order to prevent bladder infections, but I guess it doesn't combat whatever bacteria she got this time.
If she has a BM in her Depend and sits in it for a while, perhaps there's no antibiotic that can prevent an infection. This occurred on Monday and Tuesday of this week. On Monday when I toileted her after physical therapy, I found a bowel movement in her Depend, and yesterday when she insisted on using the bathroom just before her catheterization, there was a smaller one.
Usually she demands to use the toilet for a BM, but if I don't take the time to invite her to the toilet after lunch, I guess it just happens.
I don't know what to do about this constant threat of bladder infections.
Perhaps in a nursing home they could do catheterizations more often, discovering and treating them sooner. But our try at a nursing home in March was a disaster.
Next week I plan to be out of town, so I'm just grateful we got started on treating this before I fly to Santa Fe.
"It was just a wild guess, really," I said. "Because when we were at physical therapy Monday she said 'My bottom hurts.' She'd said that the Thursday before too, when the PT asked her if the range-of-movement exercises were hurting her. We didn't know if it was arthritis in her hips or pelvis from previous fractures or if it was a bladder infection."
"Well, you know your mother," Dr. Rosen insisted. "You know how to interpret what she says. I'm going to start her on Levoquin and when I get the results of the culture we can see where to go from there."
I put down the cell phone and reflected: all that effort yesterday to get the urine sample, and it turns out to have been very important.
She could have had it for weeks without anyone knowing or treating it. Perhaps she did have it for weeks. There's no way to know until she makes some kind of vague statement or becomes really angry and combative.
It's a complete guessing game, and it's up to me. If I am not alert enough to the cues, she will continue to have an infection.
Will this UTI be treatable by antibiotics taken by mouth? Or will she be ordered onto medication by IV again? In that case, she will have to go to skilled nursing or the hospital in order to have the IV.
She has been on Macrodantin (nitrofurantoin), 50 mg at bedtime, for a month in order to prevent bladder infections, but I guess it doesn't combat whatever bacteria she got this time.
If she has a BM in her Depend and sits in it for a while, perhaps there's no antibiotic that can prevent an infection. This occurred on Monday and Tuesday of this week. On Monday when I toileted her after physical therapy, I found a bowel movement in her Depend, and yesterday when she insisted on using the bathroom just before her catheterization, there was a smaller one.
Usually she demands to use the toilet for a BM, but if I don't take the time to invite her to the toilet after lunch, I guess it just happens.
I don't know what to do about this constant threat of bladder infections.
Perhaps in a nursing home they could do catheterizations more often, discovering and treating them sooner. But our try at a nursing home in March was a disaster.
Next week I plan to be out of town, so I'm just grateful we got started on treating this before I fly to Santa Fe.
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