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.

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.

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.

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.

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.

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.

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.

"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.

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.

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.

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.

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.

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.

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.

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.

Not a Fun Day

Background
In February and March Mom was refusing her meds and scratching her caregivers, so her doctor recommended seeing a geriatric psychiatrist.
I delayed in making this appointment but finally called and couldn't get an appointment with the UCLA-recommended person, Dr. Stephen Chen, until May1. He takes Medicare, so there's no cost.
We needed help sooner than that, so I called a private doctor, David Trader, and took her to see him on April 4. He spent an hour with Mom and charged $295, but it was worth it.
After reviewing her meds, he added Namenda to the list and also ordered that she get a urine test just in case her misbehavior was being caused by a urinary tract infection.
The test showed a very serious UTI with bacteria that required an IV to administer the antibiotic. Thus the hospital visit, attempt to move her to a SNF, decision to move her back to assisted living, etc. (See April entries of this blog.)
Anyway, when May 1 finally rolled around, I took Mom to UCLA Medical Center to see Dr. Chen, so that her subsequent psychiatric visits would be paid for by Medicare.
But on that day I arrived late to pick her up, she insisted on a bathroom trip first (10 min. minimum), traffic was heavy, parking and finding his office was slow, and we arrived at 2:15 for a 2 pm appointment.
"You'll have to reschedule," the receptionist said.
So two hours were wasted without even seeing the doctor.
The rescheduled appointment was for June 12.

Getting to the Shrink on Time
Today I was determined to get to Dr. Chen on time, having been trying to get to him since March. But I still begrudged the time I had to put into this project, and I left the computer later than I should have.
When I arrived Ocean View Assisted Living at 1:15 to pick Mom up, I found her in the beauty shop under a hair dryer with her head full of rollers. I touched her hair: wet.
"She only needs five more minutes," the hairdresser informed me.
I tried to keep my cool, going up to her room to get her purse, sunglasses, and foot supports for her wheelchair. Then I sat down outside the shop and filled out the medical and psychological history forms (three pages) that I'd procrastinated on doing. I noticed she was wearing red velour slacks and pink striped socks with red SAS laced shoes--strange outfit. No nylon panty hose. Some caregiver other than Elisa must have been working today.
By 1:30 pm she was done and I had her in the wheelchair, heading for the elevator and the car. By 1:40 I was speeding down Wilshire Boulevard, competing for every foot of advantage in heavy traffic. At 1:55 I drove into the underground parking garage, found a space, and loaded Mom into the wheelchair. It was a miracle! We had a chance of being only a few minutes late.
Soon I was pushing her at a jog through the crowded halls headed toward 200 Medical Plaza, Room 2200.
"I'm going to fall out!" Mom exclaimed fearfully.
"No, you're not. You're fine," I panted.
When we arrived at the receptionist's desk, the clock said 2:04 pm. My watch said 2:07, so I was glad hers was a little behind.
I wanted to shout "Hallelujah!" but I was still nervous that she might declare us too late and make us reschedule.
Instead she started giving us papers to sign.
"Can she sign them?" the receptionist asked.
I glared at her.
Mom sat there in her wheelchair with her eyes closed.
Are you crazy?! I wanted to ask. Can't you tell she's 88 and has dementia? It will take fifteen minutes of coaxing to get her to sign her name five times.
"Okay," I finally said sarcastically, turning to Mom. "Okay, she can sign them."
"Well, do you have power of attorney?" asked the receptionist. "Because if you have the papers on you, you can sign them."
NO! I brought the heavy file of her last nine months of medical history but not the POA papers. Dammit!
"Yes, I have POA, but no, I don't have the papers with me," I said, trying to keep an even tone.
But then it occurred to me that they might be in the file somewhere. I pulled it out of my bag, opened it, and started shuffling through all the papers.
Eureka!
"Yes, I do have the POA documents with me," I told her with relief.
She photocopied them while I signed all the forms.
By this time it was 2:09 pm. Is she going to announce that we've missed the appointment? My anxiety level was still sky high.
I pushed Mom into the waiting area and collapsed into a chair for 30 seconds before Dr. Chen came out to bring us into his office.
"Would you like a mint?" I asked Mom, opening a packaged Lifesaver for her.
I'm more agitated than she is, I thought, pushing her in and trying to smile politely. He's going to wonder who's the patient here, her or me.

Talking with the Geriatric Psychiatrist
"Hello, Mrs. Eggebroten. I'm Dr. Chen," he said, extending his hand to her.
"Hello," she said, opening her eyes.
"I'm a psychiatrist," he explained. "I talk to people who might be feeling anxious or fearful or depressed. Do have any of those feelings?"
"Put your feet flat," she told him. She tells me and anyone else not to sit slumped with their legs crossed.
"Why?" he asked.
"Because it's better that way," she said.
"So do you have any of those feelings?" he asked.
"I don't want to think about being dead," she answered.
"Well, no one wants to die," he said. "Do you think about that?"
"Yes, I already died. I talk to my mother all the time."
"You feel you are dead?"
"No, not now. I'm just getting ready to be. I've got lots of dolls, and I'm going to take them with me."
"So you have a doll collection. Besides dying, is there anything else that makes you feel anxious?"
"Yes, my father told me I wasn't going to be a virgin any more. He told me to go spread-eagled, and I thought he was going to give me a piece of candy or something, but he didn't. That's why I want your feet on the ground."
"Oh," he said, uncrossing his legs. "Is that why you feel like you're dead?"
"I feel like I'm dead already, but I know I'm not because I have these good mints," she said, sliding the remains of the Lifesaver around in her mouth.
"What do you enjoy doing?" he asked.
"Playing with all my dolls," she said. "But the bad man steals them."
"The bad man?"
"The bad man has a collection too. He goes in my old room and sits there and steals my candy and spends my money."
"Who steals your candy?"
"The bad man."
"Every day? Do you mean your father?"
"He had just finished taking a shower and got finished shaving."
"Is this bad man mistreating you?"
"No, I won't let him."
"So you've been feeling agitated lately?" Dr. Chen asked, reading the medical history I had given him and looking at me.
"Several times in the last week she's been agitated, trying to get out of her chair or out of bed in the night," I explained. "Yesterday she took her rings off and lost them in her bed."
"They said I was already dead," Mom explained. "So I thought I should get my rings off so they wouldn't saw them off. They ought to be free so they could go to my daughters-in-law. And then I saw them walking around with them."
"Can you raise your arms for me?" he asked. "You know Lewy Body is related to Parkinson's?"
At this point Dr. Chen stopped interviewing her and discussed her medications with me. During most of the conversation her eyes had been closed.
"Her white blood cell count is low," he noted, looking at her records on line. "For her depression I think we should increase her Remeron to 45 mg. We won't add Namenda just yet. We can keep it as an option for later. There's another one that not an antipsychotic, Depacote, that we could use later to reduce aggression. She's probably on Exelon, not Aricept, becauses Aricept can cause vivid dreams."
"I want to leave now," she interrupted.
"She thinks her dreams are real," I said to him. "We don't want her dreams to be any more vivid."
"I want to leave!"
"We'll leave in just a minute," I said.
"We could also consider Razadyne," he said. "That helps with Alzheimer's. She's also at risk for Alzheimer's in addition to the Lewy Body."
"I want to leave! I want to leave!"
"We'll also consider slowly decreasing the Exelon in case it's causing her vivid dreams. It has gastrointestinal side-effects."
"I want to leave right now!"
"Okay, Mom. We'll get a banana split or something in just a minute."
"My diagnosis is severe dementia with Parkinsonism," he concluded. "At least it's that, whether or not she has Lewy Body."
"Okay, we'll go now. Thanks a lot," I said, wheeling her out.

And Now, for a Treat...
We arrived in the lobby of the building near the gift shop, and I noticed the chest full of ice cream.
"Would you like a Nestle's Crunch?" I asked Mom.
"Yes," she said.
I put one in her hand, taking off the paper, and bought an ice cream sandwich for myself. We both deserved a treat.
But the ordeal wasn't over.
Yesterday Dr. Rosen had told us to go get a catheterization done because of her possible bladder infection. She had called UCLA to tell the nurse we would be coming sometime today.
First a visit to the psychiatrist, then a catheterization, I thought. What a day.
I pushed her to 300 Medical Plaza and we went to the fourth floor.
"Hi, we're here for a catheterization," I announced, handing the receptionist the orange sheet Dr. Rosen had given to me yesterday.
He looked puzzled and went to consult his supervisor.
We waited twenty minutes.
Then a nurse came out and said, "I don't know if they told you, but you need to make an appointment. You can't be seen without an appointment."
"Oh, okay, fine. We can make an appointment," I said. Actually that's a relief, I thought, if she can't have a catheterization done today. It just means that I lose tomorrow morning to another trip over here.
I opened my appointment book and waited to make an appointment, but then the nurse reappeared.
"You know what, we'll go ahead and do it today," she said. "But you need to make an appointment for next time."
"Oh thank you!" I said, trying to look grateful for the renewed prospect of a catheterization.
We sat down to wait again.
"I have to go to the bathroom," Mom demanded.
"No, let's just wait for the nurse," I said, fearful that a trip to the bathroom might empty her bladder, rendering the catheterization pointless. That happened last April.
"Take me to the bathroom," Mom insisted. "I have to go to the bathroom."
Then it hit me: what if she had a BM in her Depend? I didn't want the nurse to take us in for the gift of this procedure and then find a diaper full of mess.
We went to the bathroom, where indeed she had some BM in her Depend. I cleaned her up and put a new disposable on her, returning to the lobby.
Suddenly I realized that that orange form I had given them wasn't an order for a catheterization. It was just the check-out form that I should have given to Dr. Rosen's appointment clerk yesterday.
If I had waited to check out properly, they probably would have called to make the appointment for today and would have given me the right paperwork to have this catheterization done. Instead I had rushed out to get to my own physical therapy appointment.
Oh well. Soon we were called for the procedure.
In the examination room, I lifted her up onto the examining table and the nurses and I proceeded to peel off her slacks and Depend. They swiped her pelvic area with iodine, noting that a catheterization poorly done could introduce bacteria and cause a bladder infection. I didn't want to hear that.
Mom whimpered and yelped with pain but they managed to get the plastic tube in and obtain a bag full of urine.
"It looks cloudy," the nurse said. Sure enough, the urine was too dark a yellow/orange and also opaque. She probably had a UTI.
They completed their work, I dressed her and got her back in the wheelchair. Exhausted, I took her back to the car, buying a raspberry iced tea for each of us on the way.
She was late for dinner. Fortunately, Connie, her private caregiver, was there to take over. I'd forgotten that she comes on Tuesday and Thursday.
That meant I had to go to the bank and get cash to pay her for this week; that way I wouldn't have to do it on Thursday.
I trudged off to the bank and back to Ocean View, finally getting home at 6 pm.
It was a doozy of a day.

'Unseen, Unsung'

There's a feature in the LA Times today, June 11, about caregivers and the mental and physical effects of caregiving.

It mentions a useful organization, Caregiver Resource Centers. There are 11 of them in California, serving about 14,000 of the 3.2 million caregivers in the state. To contact one of these centers, go to http://www.californiacrc.org/californiacrc/jsp/home.jsp.

Nationwide, there are probably 46 million caregivers.

Getting help can cut the high level of depression among caregivers by 50%.

See "Unseen, unsung" by Melissa Healy at this web address:

http://www.latimes.com/features/health/la-he-caregivers11jun11,1,4022150.story

See also the cover story of Newsweek, June 18, 2007: "Caregiving & Alzheimer's: In a wrenching role reversal, adult children are struggling to help their ailing parents. The toll on families--and how to cope."

'My Bottom Hurts'

I try to work at the computer in the morning and do medical visits, mother care in the afternoon, but today Mom had a physical therapy appointment at 11 am.
Then at 2 pm she had a monthly check-up with her doctor, and I had a physical therapy appointment at 3 pm for a recent whiplash injury (rear-ended at a stoplight).
The scheduling was a bit tight, but there was nothing I could do about it.

PT appointment
Mom did her range-of-movement exercises with Cindy, the PT, her eyes closed all the while. I coached her to cooperate with the therapy, begging her to open her eyes now and then.
At the end, Cindy asked, "Okay, Evelyn, how do you feel? Do you hurt anywhere?"
"My bottom hurts," Mom answered.
What an odd statement: only her arms had been involved in the exercise, and she had given the same answer last Thursday at her first appointment for this round of physical therapy.
I got worried: those words were exactly what she'd said in April when she'd been diagnosed with a bladder infection. Since then she's been on an antibiotic daily to prevent UTIs, but who knows? She might have one again.
Mental note: report this to her doctor at our 2 pm appointment.

Doctor appointment
At 12:30 took Mom back for lunch and waited, then took her to the bathroom and made sure to arrive a little early for her doctor's appointment, so I'd have a better chance of getting to my 3 pm PT.
Once we were seen, I went down the list of topics to discuss with Dr. Rosen:
1) Conjunctivitis--seen by ophthalmologist and treated.
2) Spreading rash under both breasts--not responding to Neosporin. The doctor said it was a fungal infection and prescribed a cream.
3) Range of motion exercises being done per Dr. Motamedi. Thoracic support brace not yet bought.
4) TIAs? After one morning when she was very agitated and tried to get out of bed at 6:30 am, she reported that "The lights went out." That was similar to what she said in 1995 when some kind of event like a transient ischemic attack took place.
5) Possible UTI? Even though she's on Macrodantin?

Dr. Rosen said we should get a catheterization done, even though we'd agreed on our last visit not to do any more of those, instead to depend on the Macrodantin.
"It will have to be done by Home Health at her residence," I said. "I don't want to take her to the UCLA med center."
"Okay, I understand," said Dr. Rosen.
But then we debated whether reactivating the Home Health contract would mean that her outpatient physical therapy had to end.
"Oh, I guess I'll just take her to UCLA," I concluded.
"Okay, I'll call them and make sure they are expecting you tomorrow," she offered.

Then she told us her news: she's 4 1/2 months pregnant with her second child. She'll be off for three months Oct. 1 through Jan. 1. It was just a year ago that we started with Dr. Rosen after Dr. Charette had to take time off for her pregnancy with twins.

I hauled Mom up on the examination table so Dr. Rosen could check her perineum for bed sores, and yes, she still has a stage one bed sore on her backside.
Then I dressed her again and went to the checkout desk.

My PT appointment
Suddenly I realized that it was 1:40 pm and I still had to get Mom back to her residence before driving to my own physical therapy appointment at 2 pm.
But at the checkout desk another elderly patient was involved in some tedious discussion with the clerk, who was checking records on line.
I waited for two minutes, then just walked out the door, telling myself that all I needed was the next appointment in a month. I could call later for that.
I forgot that I needed the paperwork for the catheterization. I thought the orange piece of paper I was holding would suffice, but it was just a record of today's appointment and results to be given to the doctor's own clerk.
I jogged back to Ocean View, pushing Mom in her wheelchair at a breakneck speed.
I toileted her and got her situated in her recliner.
Then I negotiated the two elevators to the underground parking and drove to my own appointment. (There are two elevators and code pads to punch in so that no one on the memory care floor can escape.)
I was only five minutes late, and the therapist didn't seem to mind.

Singing "My Generation"

Hilarious video--seniors sing "Talkin' 'Bout My Generation."

The Zimmers Live on Graham Norton

via You Tube

Go to: > http://youtube.com/watch?v=zqfFrCUrEbY

Heaven and Hell

I arrive at Mom's residence to take her to an appointment with her orthopedist.
She's talking about bougainvillea again. I'm amazed at how this word sticks.
"That's my bougainvillea," We had it in Bakersfield," she says.
"Yes, we did," I say, saying to myself She remembers the oleander.
"Wasn't it nice to see Bill?" I ask, to remind her that he was here.
"It's time," she says.
"Time for what?" I ask.
"I think I should get the hell out of here and go to heaven," she answers. "It's more peaceful there."
"Yes, it is," I say weakly. I never know what she is going to say next.
As I wheel her to the orthopedist, she's still talking a blue streak.
"What does it mean when they say that your house is not an option? I thought it was all fixed up for me."
I remember that Bill and I were discussing in her presence where to place her when she can no longer stay in assisted living. The skilled nursing facility was a disaster, and I told him that I sometimes think of having her live at my house because it might be better and less expensive than a SNF, but that really it's not an option. John and my kids would not tolerate it, even if I could arrange for a caregiver to stay with her 24/7.
"Yes, the bathroom is all fixed up for you with bars and things, but I don't think you'd like to sleep at my house," I say, thinking frantically of how to answer this one. "Usually you want to go back to your place."
"But here the bad man comes in all night and hassles me," she says.
I know she means rape.
I don't know why this "bad man" thought keeps coming in her mind. Every time she sees a male, especially dark-skinned, it's the "bad man."
The conversation moves to management the bad men out there, and she forgets about wanting to know why she can't live with me. Whew.
The orthopedist orders physical therapy for her, range of movement exercises. He wants her to do outpatient but I tell him it has to be Home Health Services. I will not take her to PT 2-3 times per week, and Rehabnet didn't think she was worth their attention the last time I took her there. They saw no progress in four weeks and discharged her.
He's also concerned about her kyphosis (bent over back). He gives us a prescription for a back brace to hold her up straighter, but I don't know if I will fill it.
I just don't know if she can stand to have a back brace.

D/C Coumadin

Mom and I return to her regular doctor for her first check-up since my disastrous attempt to move her to skilled nursing.
I explain that it just didn't work out at Country Villa Mar Vista. The caregivers had too many patients and she even went through three meals without her false teeth.
Because it was a UTI that prompted the whole episode, I tell Dr. Rosen that my brother recommends just putting Mom on a prophylactic antibiotic to prevent bladder infections.
She's happy to order Macrodantin, 50 mg per day, which will kill most bacteria that cause chronic urinary tract infections.
"But the bacteria that caused this last infection was Klepsiel," she reminds me. "That one's not susceptible to Macrodantin."
"I understand," I say. "As long as it kills most of them."
"We're still not ready for hospice," I say. "But we do want to avoid medical procedures that cause her discomfort, like blood draws and catheterization. We want to take her off Coumadin so she doesn't have to have her blood drawn every week, sometimes twice a week. She refuses her meds sometimes, so that throws off the effort to stabilize her anticoagulation levels, and she doesn't eat meals on a sleepy day, so that throws it off too."
"No future straight caths," the doctor writes in her chart.
"We could reduce the Coumadin to a low dose, 1 mg, and stop checking her Pro-thrombin times, or we could d/c it altogether," Dr. Rosen offers.
"Let's stop it completely," I say. "My brother says she could have Plavix or aspirin instead."
"No, Plavix is for the heart," she says. "But I can order her 325 mg of Aspirin per day. The question is, do we treat a pulmonary embolism if it occurs? Because she had one in September, 2005, and it could happen again."
"Well, I guess not, if she's dying. But if she's just uncomfortable..."
"We have to ask, 'What are the goals of care? We want to keep her comfortable, but what are we willing to treat?' I think we treat a UTI, pneumonia, PE. But we don't want to treat, then withdraw treatment; treat, withdraw."
"No, that doesn't make sense," I agree.
Then I explain that Mom's thirty-year old bed with the lifting function for the head and feet was pronounced worn out by the repairman from Wishing Well, and that he said Medicare would pay for a new bed if the doctor ordered it.
She writes an order.
We also discuss bed sores, so she orders a gel mattress for the bed.
I wheel Mom out, grateful for having accomplished so much on this visit to the doctor.
~ ~ ~
I don't tell her that an hour earlier I got a call from my daughter's rehab place with the news that Ellen is missing. Apparently she was taken to a movie with several other patients, asked to go to the restroom, and escaped.
She has been AWOL, using cocaine and methamphetamine at a "tweaking pad" since last night. They didn't call us until this morning, just before I left for this doctor's appointment.
Ellen has called in and promised to return as soon as she can get her nerve up to do that--but meanwhile all I can do is worry.
I don't tell the doctor that really I don't care about my mother and her Coumadin, Macrodantin, etc. I just care about my daughter.

Bougainvillea

"Did you have a nice time yesterday?" I ask Mom. "Remember? Bill visited you for Mother's Day and we went to church and then to the beach."
"Yes," she says. "Bill was here."
"And I had that bougainvillea," she says, stunning me into silence.
~ ~ ~
How did she remember this word? There's so much she can't remember, especially short-term memory, and I've never mentioned this flower to her before. How did the word stick?
That afternoon I called Bill where he works at Ft. Lewis in Washington state.
"Bill, that flower they gave Mom at church yesterday, that bright pink flower--do you remember its name?"
"No," he said. "It was an interesting flower, but why?"
"First just think for a minute and tell me if you can remember the name."
"Okay--well, jacaranda?"
"No."
"I give up."
"Well, I was reminding Mom today what a nice day we had yesterday, with you visiting and all, and she said something about the flower, bougainvillea. I couldn't believe it."
He burst out laughing.
"So you better watch out--in this case, her memory was better than yours. Pretty scary."
"Yup, it is," he agreed.

Life in the Rem

Today, driving to visit Mom at 4:45 pm, I got a phone call with the news that my daughter in recovery from cocaine addiction had relapsed but is okay, safely back in rehab as an inpatient.
By the time I dealt with that, I didn't show up in the Reminiscence Neighborhood until 6 pm.
When I appeared, Mom was sitting in a crowd of residents "watching" The Sound of Music, angry that I had not come sooner.
[Note: a few watch, most sit there sleeping or staring blankly.]
She beckoned to me to lean down and whispered something about how terrible and mean the staff had been to her today.
I wheeled her back to her room to do a toilet stop before pushing her in her wheelchair out in the evening air, still warm after another hot day.
But the door was locked and her suite-mate was pounding on it from the inside and yelling.
Caregivers came running, and it turned out that Frances had fallen. She was lying on the carpet striking the door with her cane, furious that no one had responded sooner to her cries for help.
During the Holocaust, Frances spent 2-3 years in a concentration camp, so she has some issues when her legitimate needs are not met.
As Esther tended to Frances, I grabbed Mom's hat and sunglasses and left the scene. We wheeled to Rite-Aid, where I bought us each a one-scoop ice cream cone.
Take care of yourself, says Al-Anon.
Then we went to Von's where I bought cooked shrimp for dinner, in case John gets home hungry.
Back in the Rem, I changed Mom to her nightgown, removed and cleaned her teeth, and set her up in the recliner.
Just another day in the Reminiscence Neighborhood.

Double Duty

A week ago I was calling moving companies to move my mother's furniture back to her assisted living residence, and then actually accomplishing the move in one day.
I'm so grateful not to be doing that today!
So this afternoon I was hoping to spend an hour or two visiting her but no more.
As it turned out, I spent four hours on her.
First I went to Wishing Well Medical Products to buy a rolling table that adjusts up and down and can swing over a bed or chair. This replaces the end table by her chair.
While there, I asked for a repairman to make a house call and repair her electric bed. After being moved twice in one week, the bed lost a couple of pins, and the head would no longer raise up.
Then I delivered the table to Mom's room, where she was sleeping deeply in her chair.
I didn't try to wake her up--just spent an hour or so sorting and organizing the pile of things by her chair, setting up her Apple laptop on the new table, trying to restore her room to the order it had before the move.
At 3 pm I left--but soon I got a call from the repairman I had requested. He promised to show up at 5 pm, so I had to go back there and bring cash to pay him.
When he and I arrived, it turned out someone from Ocean View had already repaired the bed. The head moved up and down well, but a few days earlier it wasn't working.
Thus the repair call was in vain, though the guy installed one pin that had fallen out.
He pointed out that the mattress was shot and the frame itself was 20-30 years old, a bit of a hazard. It was bought for my father, sometime between 1978 and 1990.
By this time Mom had been wheeled in from the dining room, and she was angry that I hadn't visited her today.
"You didn't come to me today!"
"Mom, I was here for two hours but you were asleep," I pointed out.
She still felt neglected, so I took her out in the car to the Santa Irena pier.
It was a balmy evening after a scorching day. I wanted to push her in the chair around the pier, but she refused.
"I'm afraid," she said. "I might fall in."
Back at the room, I decided to give her a shower. She had refused a shower in the morning, and I think she had not had one since Thursday because I have cut back her private care to only two days.
Susan had told me they were short-staffed--someone hadn't come in--so I wanted to make this contribution.
It was, however, a disastrous shower. I hadn't done one for about six months, none in the bathroom of this two-room suite she has been living in since Dec. 1, 2006.
It was hard to transfer her to the bath chair, soap and rinse her, and get her back in the wheelchair.
"The water's too hot! You're too rough! That's enough now, I'm done," she protested as soon as I started.
Cleaning and then rinsing sufficiently under her pendant breasts and in her perianaeal area was difficult.
By the end she was in tears, just as she had been at Country Villa Mar Vista. I had new respect for the efforts of the caregivers there, whereas a week ago I took her tears after the shower as evidence that she had been showered roughly and impersonally.
Oh well.
I brushed her teeth, dried and powdered her, and left her sitting in her Lanz flannel nightgown in her extended recliner.
And I rushed off to an Al-Anon meeting to confess that I'm overly involved in her care, too quick to succumb to her demands.

Planning for Next Time

What a relief to have Mom back at Ocean View Assisted Living. She really likes it, and I have peace of mind when I am not with her.

I hope she can live peacefully there until the end, perhaps with hospice, but just in case I am researching alternatives:

1) my brother's home near Tacoma with round the clock attendants

2) various small home-style residences sprinkled throughout Santa Irena with with 5-10 patients each. These vary tremendously, some good and some not so good. I have visited some before and rejected them---not as elegant as Ocean View--but for her last month if she is in a coma and needs nursing care, IV, etc., one of these may be necessary.

3) two residences in the Sunrise chain that have a floor for skilled nursing and may have a good care ratio (1 caregiver having 5-6 residents), unlike most nursing homes (SNFs).

4) any other nursing homes that have a 1/5 care ratio

5) the PEO chapter house in Alhambra (east of LA), which has a skilled nursing wing I think.

So I'm researching these alternatives so that next time, when she gets to the point where she has medical needs that can't be met at Ocean View, I will make a better decision.

Classic Lewy Body Dementia

A highly animated or agitated day, followed by a deeply sleepy day--that's classic Lewy Body Dementia.
Mom has these about once a week now. A year or two ago they were less frequent.
The other five days of the week she is pretty normal: talkative, perhaps napping a couple of hours in the morning or afternoon (or both) but able to wake up and eat her meals, to calm down and go to sleep at night.
I feel like a researcher, observing her from day to day.
I just wish I were as detached as a scientist. Instead, I get upset by her refusal to take her meds or by her insistence that someone is a killer, that the Filipino caregiver for the Scotsman John across the hall is a "bad boy" who steals her money and comes into her room at night with evil intentions.
Occasionally I succumb to the temptation to argue with her. The only thing more crazy than arguing with someone who's drunk is arguing with a person who has dementia.
~~~
Last night I realized that her agitation was probably going to be followed by a sleepy day when it would be pointless to take her to church.
Nevertheless, I got up today and went to pick her up and take her to church anyway. When a people are in a coma-like state, you just don't know how much of their surroundings they are perceiving. A bit of movement and stimulation probably can't hurt.
Sure enough, she was sitting in her wheelchair with her head dropped to one side, barely responding to my greeting, not opening her eyes.
The staff reported that she had been too sleepy to eat breakfast, her favorite meal. At least she had drunk orange juice and V-8.
I went to get her purse and sunhat, then wheeled her off to the car. Usually she holds onto the car door frame and supports her weight a little as I put her into the car, but today I had to lift her, all 105 pounds.
I didn't try to make conversation in the car because she was so out of it, but I did turn on classical music.
"Would you like any Acapulco nuts?" I then tried asking her.
"Yes, I would" she mumbled, so I opened the can of Planter's cashews and put it in her lap. She ate them as we drove.
Pistachio nuts are what she really likes, but she can never remember their name and asks for Acapulco nuts. Cashews are easier to find and soft like pistachios, so sometimes she has to make do with them. I don't give her peanuts or almonds or anything hard to chew.
"We'll go to church and then go to the store to buy a few things and then go to my house," I said
"Got to buy toilet paper," she said.
Wow! I would have forgotten, but she remembered that her bathroom was low on toilet paper and that yesterday we had agreed to buy more today. She was reminding me. I was impressed with what her brain could do even in this sleepy state.
When I got Mom out of the car, I found partly chewed cashews in her lips and front teeth, falling out of her mouth. I wiped her mouth.
In church she sat motionless in her wheelchair, not talking.
When I tried to press the offering envelope into her hand, she couldn't hold onto it or drop it in the offering plate, usually a high point of the service for her.
Unfortunately, it was Communion Sunday. I wasn't going to take her up, but I had to move her wheelchair so others could return to their seats after Communion. When I moved her to clear the aisle, however, she kind of woke up, so I decided to take her anyway.
At the altar I took a bit of bread, dipped it in grape juice and offered it to her, but she clamped her mouth shut at the first taste of it. It dropped into her lap, and I picked it up with a tissue.
0 for 2.
After church I did errands to a bookstore, the bank and Walgreen's. She slept peacefully, slouched to one side in the front seat.
Thinking perhaps I should just take her back to her residence and let her sleep in her recliner, I asked her, "Would you like to go to my house?"
"Yes, I want to go to your house," she said without opening her eyes.
Once there, she continued to sleep in the front seat while I unloaded the car, set the wheelchair next to the front seat and open door, and went to talk to neighbors for15 minutes.
Finally I took her into my house and set a cup of orange juice and a plate of grapes in front of her. She ate them with closed eyes.
I made her cinnamon toast, and she ate it too with a small glass of milk.
"I want one of those pears!" she suddenly demanded.
"They're bananas," I said. "Would you like one?"
"Yes, half of one," she said.
I brought both canned pears and half a banana, but then a close friend called. I talked for forty minutes with her while Mom sat slumped at the table, occasionally demanding to go home. She ate the banana but none of the pears.
"So you want to go back to Sunrise?" I asked her when the conversation ended.
"Yes, take me back!" she insisted.
I drove her back, took her to the toilet, and set her up in her recliner with her feet raised. In her lap I put the church bulletin and the funny section from today's LA Times. She never opened her eyes or mouth during any of this.
Then while I was tidying the room before leaving, she mumbled something. (On a sleepy day she doesn't talk clearly.)
"What did you say?" I asked.
"I want to go to your house," she said without opening her eyes.
"You were just at my house for three hours!" I reminded her.
"I want to go again," she said.
"I have to leave now to go cook dinner for John," I lied. "See you tomorrow."
I fled to a 5 pm Al-Anon meeting before the argument got any worse, determined not to engage in debate with dementia.

Lewy Body Moment

I pull into the driveway
and park facing the sign that says
Warning: Bad Dog.
Usually it delights her.
"We're here at my house," I say
but she does not answer.

Her hand, resting with fingers in
the can of cashews,
does not stir.
She remains bent over to her left,
humming lightly,
her elbow on the arm rest,
her eyes closed behind sunglasses.

What an elegance she presents:
pleated white wool skirt,
yellow-checked blouse with appliques
(daffodils and butterflies)
open over a yellow turtleneck,
pearls, green earrings,
straw hat tied 'round her neck with a scarf.

She snores now and her hand stirs.
Dr. Lewy would understand:
it's a sleepy day.

Midnight Mania

Just got a call from Susan, a caregiver at Sunrise, at 9:40 pm still trying to get Mom to take her 9 pm meds, which include Coumadin.

She thought that I could get Mom to take them if I talked to her.

I told her that recently even I can't get her to take them--even in person.

After reassuring Susan that it's okay if she can't get Mom to take the meds, I talked to Mom. She was raving about a man across the hall killing people, along with other distractions from the subject of taking her meds.

"This woman's husband shot a guy," she said. "He's a dope and--"

"No, Susan's husband did not kill anyone," I argued, falling into the trap. "That's not your business. Your job is to take your medicines and get a good night's sleep so you can go to church tomorrow."

"You don't understand what's going on here!" she insisted.

"I won't take you to church tomorrow if you don't take your meds and get a good night's sleep! "

"But they are killing people!"

Soon I was yelling at her over the phone: "No one is killing anyone! If you don't take the meds, fine. You can stay home in bed and not go to church. That's your choice! I'm going to hang up now."

I guess the Time magazine that arrived today contained something about the murders at Virginia Tech. I need to make sure she doesn't get hold of anything like that.

When I visited her this afternoon at 3 pm, she was about as sharp-witted as she can be--but now that I think of it, she was on the high edge of sharp (a little manic).

I took her to the grocery store and to my home, where we waited in vain for one of my two daughters or my husband to appear. It turned out they had been at the house earlier but had all three left to get a hamburger.

After an hour of cinnamon raisin toast, grapes, strawberries, a banana,and waiting, I made a few phone calls, learned that they weren't going to be around, took Mom back to Ocean View, and spent an hour organizing her room and toileting her.

Now she is agitated, refusing meds, hard to manage.

Such a quandry, what to do about her. I should just let the staff deal with it until the director of her residence decides she's too much of a psych case and kicks her out.

~~~

After calming down from the phone call, I decided to go over to encourage the staff and to instruct them in how to deal with her. I did not let her know that I had come; I definitely don't want to reinforce bad behavior by rushing over to see her whenever she throws a fit.

This is a transition week when she no longer has the private caregivers she has had every night for 2 1/2 years. I am keeping Connie Tuesday and Thursday evening only--the other five nights the Ocean View staff has to learn to cope with her.

I went to support the Ocean View caregivers, to thank them for their patience in dealing with her, and to demonstrate that I can be there in five minutes if they have a real emergency.

I need to cut back on the private caregivers, since she has only $100,000 left, but she needs a person experienced in dealing with her. On her agitated days she is hard to manage; on her sleepy days she is hard to lift.

I told them:
--Respect her wish not to take her meds. Just give up on the meds. Often she will take them after the fun of fighting ends.

--She has hallucinations: she sees things.
"Oh yes, she says there's a man in the room and points 'Right there!'" Tracy, one of the night caregivers reported. She was interested to hear these behaviors identified as hallucinations.

--She also has delusions, often rooted in nightmares that are real events to her. The Virginia Tech murders are right here; the murderer is a man across the hall.

--She often has an extremely sleepy day after an agitated evening like this. Her computer just doesn't boot up.

--All these behaviors are her Lewy Body dementia, very different from Alzheimer's.

--I am five minutes away. You can call me at any time and I can be there in five minutes if there is a real emergency.

--Thank you for dealing with her.

What a handful she is. I expect that she will have a sleepy day tomorrow and not even realize she is being taken to church.

Scabies and Lost Teeth

Elisa continued to report the horrors of Country Villa when I saw her on Thursday, the first time since she had told me I had to move my mother back to Ocean View.
"They have scabies three times!" she told me. "Three times!"
"Rabies?" I puzzled.
"No, scabies. You know scabies? All the residents, their skin dry, itching. They wash the floors and walls with chemicals. I wear a gown, wash it. I don want to get it too, bring home to my daughter."
"And the false teeth! They pay $50,000 because they lose the teeth."
"What do you mean they lose the teeth?" I asked sharply.
"Somebody sue them--people's teeth, they fall on the floor, get stepped on, get lost, thrown out. They have to pay!"
"Lose the teeth? Oh dear!" I moaned.
I didn't need any more testimonials to convince me that Mom's exit from there had been urgent, a narrow escape.

Fine and Feisty

Mom's fine and feisty again, full of demands.
I arrived at 2 pm, took her out in the wheelchair to See's Candy and to a drug store to buy Calmoseptine for her stage one bedsore.
Then while she was at dinner I hung the large framed old family photos on her wall again and sorted the laundry baskets full of her toiletries, towels, clothes, etc.
After her dinner I continued working and chatting with her.
I explained to her caregiver, Jane from Nairobi, Kenya, that I had cut back on her private caregiver hours and that I hope the residence can provide all the care Mom needs. That means showers, mouth and denture care in the evening, evening meds (which she often resists), and putting her to bed.
After itemizing her care, I offered to do it tonight since I was already there.
At 6:30 pm I said to Mom, "Okay, let's go to the bathroom and put your nightgown on and take your teeth out. Then I'll let you watch tv or listen to music if you want to."
"That's big of you," Mom retorted sarcastically.
We both laughed at this state of affairs: me feeling generous about tossing Mom a few crumbs of her former life.
At 7:30 I said, "Okay, I'm going home now to eat dinner and go to bed."
"Come back tonight," Mom demanded.
"It is night!" I tried to explain. "I'm going home to bed."
"You come back!" she insisted. "If you don't, you'll be sorry."
"I'll see you tomorrow," I countered, finally leaving as she continued to use threats to try to make me return sooner.
~~~
A study of longevity and mental health released recently found that people 60 yrs. and younger live longer if they keep a positive outlook and are happy.
But for the elderly, those who complain and fight a lot live longer.
Last week at Country Villa, Mom had lost her ability to complain and demand her rights. She was listless. She never even asked for her wristwatch, which had been removed when she entered the hospital on April 19.
But back at Sunrise on April 30, she demanded, "Where's my watch? I need my watch!"
Within 24 hours she was back at her usual level of crotchetiness. After a day of looking for her watch, I ended up putting mine on her wrist just to quiet her.
She's doing fine!
~~~
Financial note:
Instead of having a private caregiver every day, 2-10 pm, I'm now having Connie Reysag come only two days a week, Tuesday and Thursday.
Racquel Estrada, who worked for Mom on weekends for 2 1/2 years, started two 12-hour shifts on Saturday and Sunday caring for someone else because I moved Mom to Country Villa and said I didn't need her.
These were cost cutting measures. I used to pay $14 per hour for 56 hours per week, $784, in addition to Mom's room at Ocean View Assisted Living, $150 per day, and her care $56 per day, about $7,000 per month.
I hope to give up private care altogether within a few months and just depend on Ocean View for all Mom's care.

Passive Smoke & Dementia

"Passive Smoke Boosts Dementia Risk" says an article on WebMD today. See below.

But my brother Bill, a doctor, says that the risk probably lies not just in the smoke per se but in the various risk factors that commonly occur along with smoking--unhealthy diet, lack of exercise, etc.

(WebMD) If your spouse still smokes, here's a new reason to urge him or her to quit.
A new study suggests that people who live with a smoker for more than 30 years are about 30 percent more likely to develop dementia than those who have never lived with a smoker.
The situation is even worse for people who are already at increased risk for dementia due to clogged arteries leading to the brain, says researcher Tad Haight, MA, senior statistician at the University of California at Berkeley.
For such people, living with a smoker for more than 30 years appears to raise dementia risk more than twofold compared with people who never lived with a smoker and don't have blocked brain arteries, he tells WebMD.
The study, presented at the American Academy of Neurology's annual meeting, included 985 people aged 65 and older who had never smoked. None had dementia or had suffered a heart attack or stroke or had blocked leg arteries at the start of the study.
Of the total, 495 lived with a smoker for an average of 28 years. Over the next seven years, 10 percent of the 985 people suffered a heart attack or stroke or developed blockages or clots in their leg arteries.
Fifteen percent were diagnosed with dementia.
No Extra Dementia Screening Warranted
Ronald C. Petersen, MD, director of the Alzheimer's Disease Center at the Mayo Clinic in Rochester, Minn., says that while the study showed a link between passive smoke and dementia, it doesn't prove that it actually caused the memory disorder.
Petersen tells WebMD that people who have lived with a smoker shouldn't rush to their doctor to get tested for dementia.
"From a practical point of view, the thing to do is remove yourself from the situation and follow a healthy lifestyle - things we recommend in any case," Petersen says.
But there's no reason, still, not to use it as ammunition to convince your spouse to kick the habit.

After the Storm

Like a wilted plant that springs back up when given water, Mom recovered all her spunk and personality within 24 hours after returning to Ocean View Assisted Living.
I'm the one who's still in shock, grieving over the whole experience.
What a mistake to put her into skilled nursing!
Why did I do it?
I look back to my list of pros and cons on April 20.
I read my reflections: The SNF should be less work for me after she gets settled... doctor will visit her there, tests will be done there. But moving is a bit of work, and if she's not happy there, she could become more time-consuming there.
More time-consuming--no kidding. It was a terrible ordeal. She was declining fast, and I could focus on nothing else except what to do about her.
I thought that I could recreate her room in the SNF by moving her doll chest, her recliner, her television and CD player, her bureau with its photos and jewelry, her black desk and chair, and her closet full of clothes.
I've done this so many times before:
~~in December 2001 when we moved her out of her own home to the Meridian, an independent/assisted living residence in her hometown, Boulder, Colorado;
--in December 2003 when we moved her to Sunrise Assisted Living in Mission Viejo, California, near my sister, Emily;
--in May 2004 when I moved her to the "Reminiscence Neighborhood" of that Sunrise residence;
--in October 2004 when I moved her to Ocean View Assisted Living in Santa Irena, near me;
--in December 2006 when I moved her to a smaller room in the same residence.
But it didn't work when I moved her to the skilled nursing facility.
The presence of LVNs around the clock, an RN in the daytime, a doctor who visited her in her room; a physical therapist, speech therapist, and occupational therapist was excellent. Lots of medical services and attention. Blood tests, x-rays, catheterizations, IVs could all be done right there.
Yulia, the careful speech therapist, wrote the following note and posted it on the wall above her recliner:
Swallow Precautions--Evelyn E.
1. Place partials in for meals.
2. Sit up at 90 degrees.
3. Stay up 30 min. after meal.
4. Mechanical soft diet with thin liquids.
5. Small bites alternate with small sips.
6. Remind to take small, single sips.
Thank you! ~~ Yulia, S.T.
A lovely note--but the certifed nurse assistants (CNAs) have too heavy a work load to read notes and follow up on these great instructions.
No one put her false teeth in for her meals on Sunday. The previous Wednesday I noticed at breakfast that she had no teeth in, but I accepted their assurances that it would not happen again. Notes were put up on her bathroom mirror.
All the notes might as well have been invisible.
The only factor that really mattered was the ratio of CNAs to patients.
That was my big mistake: sloppy research in finding out this ratio. I took the word of Mariel, someone at the nurses station on Friday, April 20. The numbers she gave me didn't seem right, but I didn't quiz her further and didn't go to the director for confirmation. I discussed it with my sister and thought the ratios were 1/7, morning shift; 1/5, afternoon/evening shift; 1/4 night shift.
The numbers were 7, 5, and 4 as reported, but it wasn't a ratio. It was just the number of CNAs at work on those three shifts caring for 59 residents on the day I toured, 63 a few days later (68 beds maximum).
The person I talked to hadn't understood my question or perhaps didn't know what a ratio was.
I didn't investigate further.
Instead, I moved all Mom's furniture.
Twice.
The real ratios on Sunday, when I asked again at the nurses station, were 1/9, 1/12 or 13, and 1/15 or 16 (for 63 residents).
Had I understood those ratios, I would not have moved Mom, despite all the wonderful medical attention offered.
She does need a fair amount of nursing care, not just assisted living, but care begins with teeth and toileting. If she's not going to get that, all the MDs, RNs, PTs, OTs, and STs in the world are not going to make a difference.
Even more than nursing care, she needs facial contact and verbal interaction with her caregivers. That's what keeps her alive.
That's not going to happen with CNAs who are underpaid, overloaded, and don't speak English.
So the whole week is now just Anne's Big Mistake. Mom is no worse for the wear, I think. As soon as I recover my sanity and equilibrium, it will become history.
May this story be a warning to others looking for care for elderly or disabled family members: above all, check the ratio of caregivers to residents. Other factors are unimportant compared to this.

My Room! My Room!

After dealing with movers and SNF administrators, I drove Mom back to Ocean View and unceremoniously dumped her in the dining room with a bag of French fries and a strawberry milkshake.
I told the movers where to place furniture, signed a lot of papers, and paid them.
Then I realized I was late to a 2 pm doctor's appointment for myself. It was Christina, a caregiver on the pm shift, who pushed her in her wheelchair back to her room about 3 pm.
Her furniture had just arrived and was in place, but the walls and tabletops were bare.
Nevertheless, as Mom rounded the corner and saw her tree (a fake ficus), her door, and her room with its furniture, Christina reported that she began crying out, "My room! My room! My room!"
No doubt she was a bit confused and amazed.
She'd been sleeping in her recliner at the other place two hours earlier.
Now she was back at her long-term residence, and there was her recliner, her bed, her bureau, desk, doll cabinet and television.
It was a miracle.

Look Ma: No Teeth

I slept peacefully after deciding to move Mom out of skilled nursing.
Getting up at 7:15 after only three hours of sleep, I was looking forward to a second great day of the LA Times/UCLA Bookfair.
It took determination to steer the car toward UCLA and take a full day for myself, not going to check on Mom first.
Her circumstances were so miserable at Country Villa Mar Vista that for six days morning, evening, in fact all day long, I had been agonizing over how she was doing, what to do, whether to drive over there.
Today was different, knowing that tomorrow I will move her. I had a great day listening to authors such as Walter Mosely and Jane Smiley.
Mom’s day, however, was not as good.
Arriving at Country Villa at 5:40 pm, I found her eating dinner at a table with Henry, a kind elderly Asian man; Phyllis Berg, a beautiful blue-eyed, clear-minded public health nurse from Minnesota, 81 yrs. old and on a pureed diet; and Nicole, a sharp-tongued, sharp-witted aging little person.
“Hi, Mom, how are you?” I began but realized immediately that her false teeth weren’t in. “Where are your teeth?”
She mumbled an answer as I searched her lap and her crumpled napkin. Yesterday I had watched her take her upper plate out at lunch and wrap it in a napkin, so I was worried that she might have lost them.
Then I walked back to her room to see whether the teeth had been left in the soaking cup since last night.
Sure enough, there they were, sitting in the cup of pale blue Efferdent water, underneath the large sign in purple marker pen posted by a nurse: “Put teeth in resident’s mouth before meals.”
Breakfast, lunch, dinner without her upper plate or lower partial plate, just the eight front teeth still rooted in her lower jaw.
A message from God: you made the right decision in taking her out of here. Thank you.
And a convenient way to explain to Country Villa why I am moving Mom out just a week after moving her in.
I took the charge nurse into her bathroom and showed him the teeth in the cup.
“I’m going to move my mother back to her assisted living residence,” I told him, taking the teeth out to return to the dining room.
I put the teeth into Mom’s mouth, despite her objections, and soon a tiny African woman named Tutu came trembling up to me to apologize. Mom was one of the 12-13 residents she was in charge of for the 3-11 pm shift.
“It’s not your fault,” I said. “You have too many residents to take care of, and of course the CNA taking her to breakfast and lunch should have put her teeth in. Yes, there was a sign on the bathroom mirror, but I don’t blame you.”
“I usually work the night shift,” she explained.
“Oh, and she is a new resident. You aren’t familiar with her care.”
I took Mom back to her room, toileted her, put her nightgown on, and left her in her chair to watch a DVD of The Sound of Music on her laptop computer. Never mind that I had put the same one on the night before.
I went home to have a peaceful dinner with John and his friend Ed Miller, visiting from McLean, Virginia.
In the morning, somehow, I would find a way to move Mom and all her furniture and belongings back to Sunrise.

She Needs Her White Geranium

Resolved to move Mom back to Ocean View Assisted Living, I went to the bookfair without visiting Mom first. I didn't worry about her. She could last one more day.
I remembered how at Ocean View she depended on a few key markers that told her she was okay and in a safe, pleasant place. These included the (fake) ficus tree by her door and the (fake) white geranium plant sitting in a pot at the turn of the hallway between her room and the dining room.
"There's my white geranium," she would say with satisfaction almost every time she passed the plant, either with her walker or in a wheelchair.
At first I thought I would just bring a new white geranium to County Villa Mar Vista.
But now I realize there are larger problems here than just one missing plant.
I will move her back to her white geranium.

Hell is a Nursing Home

My 88-year-old mother has been in skilled nursing for a week as of tomorrow afternoon.

I've gotten over my "Bite the bullet" "It's not so bad" thinking.

I'm now seriously considering moving Mom back to Ocean View Assisted Living tomorrow.

This has been one hell of a week, second only to Dec. 31 - Jan 6, the week I learned that one of my daughters has a cocaine addiction.

I thought I would have an easier time with her in a SNF--not so. Much more time-consuming.

She's pretty lost. Her spirit is broken now. She's not fighting with anyone there.

Yesterday she said to me, "This is a pretty good place you picked out." She seemed resigned, trying to please me and accept her reality.

But today she said, "I don't like it here." Each time I arrive she grasps my hands, desperately trying to connect and find reassurance.

At her assisted living, she would often be angry when I arrived, sometimes wanting to hold onto me, but she wasn't listless like she is now. I'm observing something like "failure to thrive."

Food and other residents are not the problem.

Being warehoused is the problem. She's a piece of meat being moved around. They don't talk to her personally, don't interact the way the staff at Sunrise did. There are 59 residents and a lot of staff on various shifts. She's lost.

Of course, she's getting PT, OT, ST, and her doctor visited her in her room. Nurses are in a station right next to her room. They're happy to monitor her UTI status, anticoagulation status, lungs, etc.

I don't have evidence yet of Elisa's charges, but Mom's drop in status to just another item on a workload is evident, especially during her shower, which left her in tears on Thursday night.

I wish I hadn't moved her furniture last Tuesday. At that point I was very committed to making this move work.

But now I think I'm going to pay $500 plus tip again to move all her furniture back to Sunrise.

Her words, "Don't sell my room!" still echo in my mind.

The "woman without a country" will get a home again.

Note to self: Try to figure out how to change the tag line on the blog to read "my 88-year-old mother." I started this blog two years ago.

Day Six in Skilled Nursing

I woke resolved to do two things:
1) Make this move to skilled nursing work out.
2) Take care of myself. Not go crazy worrying about Mom.

To take care of myself, I planned to spend all day today and tomorrow at the LA Times/UCLA Bookfair, listening to various authors and panelists speak about their books.

To make things work out, I drove to Country Villa to check on Mom before going to the book fair. (This meant missing a couple hours of speakers.)

"Hi, Mom, how are you?" I always begin.
"I don't like it here," Mom said.
Oh dear.
"You don't like it here?" I asked. "You liked Sunrise better?"
"Yes," she said. She seemed listless, not opening her eyes, perhaps preferring not to see her surroundings.

Okay, so much for my plan of carrying on and trying to make this skilled nursing thing work out.