Tuesday, October 31, 2006

Halloween Witches

I could only make a quick morning visit to Mom today because I had to drive to Claremont to pick up my daughter and take her to an orthopedist for the sprained ankle she got Saturday night after a Halloween Party.
When I arrived carrying clothes from the dry cleaner and bags of Depends and other supplies, I saw that Mom was being wheeled to the central room for a group activity. Orange and black balloons and other Halloween decorations filled the room, and one resident named Sue was wearing a large black witch's hat.
The good news: Mom wasn't complaining about having to go out there and socialize.
The bad news: she saw me and began asking me to take her places.
"Take me to Marie's doctor appointment... Take me with you," she began.
"No, I can't," I maintained. I took the stuff to her room and noticed the witch's hat there, which I had set on a teddy bear.
I took it off the bear and extended it to Mom.
"Would you like to wear a hat?" I asked.
She was delighted, reaching out and putting it on her head. In fact, the black hat with orange pumpkins looked good with the peach/orange knit suit she was wearing.
"Pull it down tight," she demanded, suddenly looking very festive.
"Oh look, Evelyn has a hat," a caregiver said. "It looks great!"
And indeed it did.
Last year I had avoided putting a witch's hat on her because I thought she might not want to be called an old witch.
Truth be told, everyone on the floor has the ugly, toothless, wrinkled look associated with witches. Adding the hat just completed the picture, no mask needed.
But neither Mom nor Sue was aware that she might look like a scary old hag.
Each had a hat and felt she looked great; that was all that mattered.

Sunday, October 29, 2006

The Bad Man's Gone

When I arrive at LAX after being away for a week, I call my mother at 9:15 pm to let her know I am back. And then I ask, "How are you doing? Is there any news at your place?"
"Yes," she says. "I finally got rid of that old man."
"Oh, good," I answer, noting that this figure in her hallucinations can morph from "the bad man" to "the old man."
"I sent him to Purgatory," she continues, "so he won't bother me any more."
"That's wonderful," I say, relieved that she may no longer be harrassed by this particular delusion.
"But I may give him that old piano so he'll have something to do," she adds. "That way he can be happy."
"Okay, fine," I answer. "That's a good idea."
The old family piano was shipped to my brother Bill's house two years ago, but apparently it still floats in her mind as a possession to be given away.
"I'll come see you tomorrow," I promise and then speak briefly with her weekend caregiver, Racquel, who had picked up the phone and given it to her.
"I tell her, 'There's no bad man, honey,'" she says, giggling. "I change her diaper and say, 'Don't worry, there's no bad man. Men are not allowed on this floor.'"
That's what we tell her when she has delusions of a rapist entering the secure floor and attacking the residents. Only the staff can be here; no other men can get in.
"Right... oh well, that's all we can do," I conclude. "Goodnight. See you next weekend."
It has been really irritating in the past two months, always having to hear about "the bad man" and what he has done lately. I hope he's gone for good.

Friday, October 20, 2006

Weller's Guilty--and So Are We

The Russell Weller verdict was announced today: guilty on all ten counts of vehicular manslaughter with gross negligence in the Santa Monica Farmers Market crash in July, 2003.
Good--he was certainly negligent.
(See my commentary on the case in the Santa Monica Daily Press, October 12, p. 5--online at www.smdp.com/article/articles/2816/1/Guest-Commentary-By-Anne-Eggebroten/Page1.html).
But we are negligent too--of letting elderly family members drive when they shouldn't, of not demanding mandatory testing of drivers 75 years and older, of not planning better physical protection for street fairs and markets.
This verdict sends a message: take away the keys before this happens to your parent, grandparent, aunt or uncle.
What it doesn't tell us is that the real culprit here was dementia, not just incompetence in an elderly driver.
Dementia has many forms, including Alzheimer's. But it's not just forgetfulness--it often includes irrational anger, lack of impulse control, and inability to plan a series of actions. This type of dementia must have been behind those ten deaths in Santa Monica, based on witnesses' testimony about Weller's comments after the event.
So how should a just society respond to manslaughter caused by dementia?
Do we lock up an 89-year-old man?
Probably the best verdict would have been "not guilty by reason of insanity," a plea that did not enter into this case.
Weller should be put into some kind of treatment facility where he will be cared for but can no longer harm anyone.
His situation is similar to that of Andrea Yates. Medication and strict supervision (including not being allowed to drive) could have prevented this accident.
It's a steep learning curve for him and for all of us, but we need to learn about dementia as we become a society with more elderly drivers.

Above and Beyond for P.E.O.

By 3 am the kitchen floor was scrubbed, the furniture rearranged, and the cupcakes were made for P.E.O.
All I had to do this morning was frost the cupcakes, get two pumpkin pies in the oven and go pick up my mother.
By 8:30 am the pies were baking and I was on my way to Ocean View Assisted Living.
When we drove back just after 9 am, barriers had appeared at the entrance to my block, but we talked our way onto the block.
"My mother's in a wheelchair, and I'm taking her to my house for a meeting," I told the hapless city worker. "I'll be back in a few minutes to move my car off the block, but you'd better not stop any of my guests from entering here."
"Ma'am, we're doing slurry today. No one can enter," he maintained.
For a moment I could see myself standing on the porch with a shotgun to defend my guests' right to access the street, but I knew there was no time to waste arguing.
I drove to my driveway, got Mom out and into the wheelchair, pushed her up the ramp and situated her in the circle of chairs in my living room.
After taking the pies out of the oven, I drove my car a block away to park it and rushed back to stand on 16th street and add P.E.O. signs to the yellow Caution tape strung there to guard parking spaces for the P.E.O. members.
One by one the ladies started arriving, each having parked a block or two away, not realizing the yellow tape and orange poles were guarding places intended for them. I pointed them toward the house and stayed out on 16th Street to meet the remaining P.E.O.s and direct them into the parking places I had reserved.
I was still out on the street at 10:15 am waiting for Alva Mae when I got a call on my cell telling me that she wasn't coming. As of the day before, she had looked forward to visiting my house, so I knew it was the street work that was keeping her away. She's one of the less steady-on-her-feet members.
I rushed back to my living room, greeted my guests, and tried to be a good hostess. Only five ladies had come besides my mother and me: Dorothy B., Dorothy S., Marie H., Eileen S., and Evelyn L., who reported that her son is running for City Council.
The pumpkin pies were still warm, and I started whipping some cream with the egg beater but in my haste splattered it all over the kitchen counter, including on Marie's purse. She was my cohostess, bring a plate of fruit.
Mom seemed to be enjoying the occasion, proud to have these ladies to our house. But she got involved in taking all the cards out of her wallet and stacking them on a table near her chair.
The ladies enjoyed slices of warm pumpkin pie with whipped cream, and Marie even called the next day to get the recipe. It was hardly a family secret--just the one on the can of Libby's pumpkin filling--but I was proud to be asked by a P.E.O. for this shortcut to good entertaining. It was a sign of achieving status in this group.
Just when I thought all was well, Dorothy said brightly, "For our program today, we'll watch a video. And since we aren't having a business meeting today, maybe we could tour your house!"
"Oh, okay," I said, thinking of all the stacks of papers and newspapers and boxes I had moved to the bedrooms so the three central rooms would look respectable.
The tour began. I bravely led the P.E.O.s through bedrooms stacked with boxes and newspapers, my messy office with desk and floor covered with To Do and To Be Filed piles of papers and unopened envelopes, the upstairs with John's equally messy office, the kids' rooms including Ellen's with my computer and more papers spread out on the bed.
I gave my standard excuse--that John works for the LA Times--and even admitted to writing about the Russell Weller case for the Santa Monica Daily Press. I showed a couple of the sisters my article, but since Russ lives down the block from Evelyn L. and has been a long-term member of Dorothy B.'s church, they weren't eager to read any comments unsympathetic to him.
"The verdict hasn't been announced yet," Dorothy commented. "I wonder why!"
"Yes, there must be someone who wants to convict him and others who feel he is not guilty," I reflected. We didn't know that at that moment the verdict of guilty was being announced.
I decided that my grandmother and mother had handed to these ladies the job of pressuring me to have a cleaner house. Grandma has been dead for twenty-four years, and Mom is no longer capable of critically assessing my housecleaning, but the supervision continues courtesy of P.E.O.
When it was time for the program portion of the meeting, Dorothy displayed a collection of educational and travel videos for us to choose from. We chose Hawaii, and soon we were all sitting around my television learning how the first people had found and settled Hawaii in the early centuries A.D., how their culture and religion had developed around the Goddess Pele, and how keep political events were associated with eruptions of the Maunalea volcano.
Meanwhile, big street sweepers roared up and down my street. The truck arrived spreading a layer of hot tar while on the television red hot lava was pouring out of the volcano. We looked from the volcano to the smelly street and shook our heads.
Mom fell asleep during most of the video, which was lucky for me; otherwise she might have demanded a trip to the bathroom right in the middle of everything.
By 12 noon the video ended and the ladies started leaving to walk back to their cars, staring at the freshly tarred street.
Mom and I said goodbye, and I drove her back to Ocean View Assisted Living.
"It is finished," I said.

Thursday, October 19, 2006

Under Cover of Darkness

"Anne, you'd better get those plastic poles out on the street," John said when I got home from putting my mother to bed.
"Oh, right," I said, though I was more worried about getting the kitchen floor scrubbed.
I still had a lot of cleaning up to do before the P.E.O. meeting at my home tomorrow, an event that had appeared on my horizon about a year earlier when I started taking Mom to bi-monthly gatherings of this group.
"I'll help you--those things are heavy," John said.
Soon we were several houses away at the end of our block, scouting for empty parking spots where we could position the ten orange-pole "delineators" to reserve places for the P.E.O.s to park in tomorrow.
They can't park on our street, right in front of our house, because the city has decided to put fresh asphalt on our block tomorrow.
John hauled the poles with their heavy black bases three at a time on a dolly turned into flat cart. I placed the poles and looped yellow Caution tape from pole to pole.
We hoped none of our neighbors would catch us out here doing this.
"You get yourself into the darnedest situations," he commented.
"Yeah," I murmured apologetically.
"What does P.E.O. stand for anyway?" he asked. "Peculiar Elderly...." He couldn't come up with a third word.
"You know I can't tell you," I said. "I'm sworn to secrecy."
We completed the job and returned to the house, where I started making cupcakes and moving furniture to make room for a circle of 10-12 chairs in the living room.

Dancing Again

Is there any point in taking someone in a wheelchair to a ball?
Yes, despite my doubts, Mom really enjoyed this evening. Her residence had scheduled its annual grand ball celebrating the third year since it opened.
"Evening dress" the invitation said, promising a live band.
I'd planned to have Mom's private caregiver take her to this event, while I cleaned house for the P.E.O. meeting at my house tomorrow, but Connie is still out sick.
I arrived at 6:45 pm to wheel Mom down to the main floor, having made sure she wore a gold, long-sleeved blouse and a fancy pink, green, and gold skirt with plenty of jewelry. (I wasn't dressed quite up to the level required but at least didn't have jeans on.)
Entering the decorated ball room with a buffet of shrimp and hors d-ouevres, a bar, and the band, we were immediately photographed.
Then after carefully choosing some items from the buffet for her, I placed her wheelchair right in front of the dance floor, where she could see the musicians in their sixties and the three or four brightly dressed couples dancing.
A year ago we had sat at a table in the corner with the other residents of her floor. That was a better place for eating and meeting the families of other residents, but Mom had been completely unaware of the dancing, so this time I wanted her to see it.
"You don't eat the tails, right?" she asked about the shrimp on her plate.
"No, just put them aside," I answered as she dribbled shrimp sauce down her gold blouse. I made sure that the shrimp tails vanished from her plate as soon as she laid one down.
She was done eating very soon and fixed her attention on the dancers.
Because most of the residents were too unstable to dance, many using either walkers or wheelchairs, two couples from a ballroom dancing club had been hired to display their skills and also invite those who could to dance.
One elegantly dressed resident had been out on the floor dancing with her daughter, probably 55 or so, when one of the gentleman dancers asked her to dance.
This slender, silver-haired lady's delight at chatting with the debonair, equally gray gentleman and being carefuly twirled around the floor was a joy to behold. Other ladies took their turn.
I noticed that one lady in a wheelchair near us had a cascade of freshly done silver curls like the blonde hairstyles seen at the Academy Awards ceremonies.
"Your hair looks so elegant," I said, bending over her. "Did you have your hair done today?"
She stared back at me blankly but attentively, not saying a word. I realized she must be a dementia patient, unable to speak, though she's not on my mother's floor in the residence.
"Are you enjoying the music?" I asked my mother as she sat there watching.
"Yes," she said, and I noticed that her feet in their heavy, ankle-high black shoes were moving and tapping on the floor as she sat in her wheelchair watching the dancers.
In the early '50s, she wore tiny slip-on high heels and danced with my father at the Officers' Club and at other cocktail parties in Tokyo during the Korean War.
She was back there, dancing again, tonight.
At previous evening parties put on by the residence, she has fallen asleep or bored quickly and demanded to return to her room. I waited in vain this time for her to ask to leave.
Finally, when the band took a break, I asked, "Well, Mom are you about ready to return to your room?"
"Well maybe, I guess so," she answered.
We made our exit, picking up a framed copy of the photo taken earlier, and went back to her floor, where I showered her and put her in her nightgown. I was hoping to leave then at 8:45 pm, but Charita came by dispensing medicines and asked if I was planning to give her the meds and put her to bed. I decided to finish up her evening routine, leaving her in bed with her clothes laid out for the P.E.O. meeting tomorrow.
"Okay, Mom, I'll come for you tomorrow morning for the P.E.O. meeting at our house," I said.
"But I thought this was the P.E.O. party," she said.
"No, this was just the Ocean View party," I said. "Tomorrow all the P.E.O.s come to our house."
I left, wishing these two events hadn't been back to back, realizing that she has more than enough stimulation in her life.
Why did I start taking her to P.E.O. meetings and then join myself and go to all the trouble to have a meeting at my house? It probably wasn't necessary.
But a year ago she had been asking to go to P.E.O., and I foolishly agreed to it.

Wednesday, October 18, 2006


This morning when I went outside to pick up the morning newspaper, I saw white notices posted on all the trees up and down our block:
Construction Notice: Street Improvement Project--SLURRY
No Parking 8 am to 5 pm - Friday, October 20
"You can't do this to me!" I cried. "Not on the day of the P.E.O. meeting!"
Last May I had agreed to host two of the bimonthly Friday meetings, one in October and one in March.
In September the city had posted notices for this work but had postponed doing it because .01 inch of rain was predicted for southern California that week.
Now, on two days' notice, they were again planning to do the work--on the day my mother and I were going to be welcoming these elderly friends of hers to our house for the first time.
I called the project manager at the city's Civil Engineering & Architecture Division.
"You can't do this," I begged. "I am having guests at my home Friday morning, and they are elderly. They can't find parking places on other blocks and then walk to my home. One of them is in a wheelchair, and some use a walker. They need to park right at my house. Maybe they can use the driveway and my neighbors' driveways if you plan to be working in the street."
"No, Ma'am, that won't be possible unless they don't mind tar on their tires," the man answered. "We will be laying asphalt on the street."
"Can't you do some other street on Friday?" I pleaded. "My guests really need easy access to my house."
"Actually we're doing 15 blocks in your neighborhood on Friday," he said. "I can read you the list of streets that will be affected, but I can't change the schedule. The only thing I could do is drop off some delineators at your house so you can reserve parking places for your guests on 16th Street as close as possible to your house. How many would you need?"
"About ten," I said. "Okay, thanks."
I hung up the phone and cried. I thought of Alva Mae and Dorothy and the other old ladies trying to find my house for the first time, encountering closed streets all around the neighborhood, being unable to find parking or unable to walk to my house after finding a spot.
So much for Mom and me trying to be good members of Chapter R and host a meeting at our house.
I had hoped that restoring P.E.O. to Mom's life last fall would not involve too much work, just two Friday mornings per month for nine months of the year. Now it looked as if this meeting was going to absorb my energy all week long: carpet cleaning, delineators, phone calls, baking...
Dementia must be contagious. I must have somehow contracted it.

Tuesday, October 17, 2006

The Buck Stops Here

Connie, Mom's weekday caregiver, called in sick today.
I was counting on her to show up at 2 pm and entertain Mom until 10 pm, taking her out in the wheelchair, to meals, showering her and putting her to bed.
My big goal for the day was to be in Pasadena by 5 pm to meet the current members of the Women's Concerns Committee at Fuller Theological Seminary and establish contact with them for an organization I belong to, the Evangelical & Ecumenical Women's Caucus, prior to a meeting we're having on Sunday.
Also I need to type up last month's minutes of the Community Violence Prevention Coalition prior to our meeting on Thursday, as well as clean house for the P.E.O. meeting on Friday.
But now I had to stop by and visit Mom for an hour before leaving for Pasadena. Just skipping a day of visiting her is not possible if her caregiver is not coming. She fusses and complains if I am late, and I depend on being able to hand her over to her caregiver.
The upshot was that I visited her, stayed longer than I intended, left for Pasadena at 4 pm, encountered so much traffic that I didn't even get on the freeway until 5 pm, and didn't get to the meeting until 5:45 pm, when it was mostly over.
I did meet the group, however, and I will visit them again another day when I can take more time to hear about their work and tell them about EEWC as a resource.
I regretted the way things turned out, but leaving Mom at her residence with no visit and no caregiver is not an option.
The buck stops here.

Monday, October 16, 2006

From Heaven to Hell

"Get the hell out of here," Mom yelled at Bethlhem, who had come into her room to help Meselech take her to the bathroom.
Bethlhem is the sweetest person in the world. She has a deep Christian faith and her fiance is a missionary with Global Team. I can tell these words hurt her feelings, even though she knows the residents on this floor are mentally less than competent.
Both she and Meselech are from Ethiopia, working as caregivers with elderly persons who have dementia. Their job is to give care and take abuse patiently, no matter what.
Everyone's nerves are on edge today because of the death of Rosemond early in the morning, but of course Mom and the other residents have not been told about this.
"You're late!" Mom complains angrily when I arrive at 3:45 pm to visit her. "You said you'd come at 2 pm, but you didn't come until 4."
"Sorry, Mom," I say. "I was here in the morning, so I didn't come as early this afternoon."
"Tell these people to get out of here," she fumes. "I don't want them. I just want you to take me to the bathroom."
"Get out of here!" I tell them jokingly, with a smile on my face.
That's when they tell me what she had said a few minutes earlier.
"Mom, why did you say that to Bethlhem? You like her," I cry.
All those earlier reflections about transcendence, Bach, and praising God are now replaced by the grim reality of Mom abusing her patient caregivers. My heart aches for Bethlhem being told to go to hell. I love her at least as much as I love my mother.
"Maybe she thought you were a man, Bethlhem," suggests Meselech. "She kicks and fights any man who comes in here."
"Look at me, Evelyn," says Bethlhem, bending down to Mom with a smile. "Do I look like a man?"
"No," says Mom. "I guess I shouldn't have said that, but Anne was late coming here."
"Emily too said a bad man came into her room last night," smiles Meselech, referring to another resident.
"Well--" I begin, thinking that there's always the possibility of a real predator.
"No," says Meselech, reading my mind and confirming that Emily is another one who has dreams and delusions.
My discomfort is extreme because the real problem is racism. Mom has a recurrent dream that a "bad man" or "black man" comes to her room and harms her.
As far as I can tell, it started when she had a male Filipino physical therapist a year ago who teased her and prodded her to stand and walk and progress in her physical strength. She began referring to him as "that bad man," and then any man she saw became that man, if he had dark hair and skin.
In the hospital last month, she fought off a male attendant (African-American) and the two men trying to give her a CT scan; she kicked, bit, and scratched them.
Now back at Ocean View Assisted Living, she continues to rail at any dark-skinned man who says hello to her; she says he stole money out of her purse. She has hit and kicked the male caregivers.
This morning when I took her down to have her hair done, she was upset about this man again.
"That bad man came into my room again last night," she began.
"Oh dear," I commented, wondering how to shut her up.
"He hit me and did all kinds of terrible things to me!" she continued dramatically. "I was so scared I didn't dare yell for help." She didn't quite use the word rape, but the implication was clear.
"Mom, you go ahead and yell," I said. "Of course you should yell if someone comes and hurts you. But I think really it was a dream."
"No, it was not a dream!" she said angrily. Part of Lewy Body Dementia is the inability to distinguish between things that happen in dreams and in real life. When she wakes up, she is sure that the events of her dream really happened.
In the morning I just handed her off to the hairdresser, dreams and all.
But now I am sure that seeing Bethlhem triggered this "bad man" delusion in Mom's mind.
What a bad sign of her decline that now seeing either a man or a woman with short hair and dark skin can cause Mom to shriek and strike out.
Ten years ago she would never have said anything impolite to a dark-skinned person, but then she rarely encountered anyone but Caucasians, living in her home in Boulder, Colorado.
Now she and the other white people in their 80s and 90s on her floor are cared for mostly by new immigrants from places like Ethiopia and the Philippines. These old folks lived most of their 90 or so years during times when extreme racism was widely accepted. Their personal histories have not prepared them to be accepting of people regardless of ethnic background.
Whatever acceptance they learned late in life has now been erased by Alzheimer's or Lewy Body Dementia or vascular dementia. The thin veneer of acceptance is peeling away and the deep racism remains.
There is only one African-American on the floor, Verma, whose genteel southern manners are offended by any profanity uttered by residents like my mother.
I am stumped by how to handle this situation.
"Mom, you can't yell at people like that. You can't say 'Get the hell out of here,'" I tell her, but I'm pretty sure she won't be able to remember this tomorrow.
Perhaps I should just drop the subject with her, apologize to Bethlhem, and remind her that Mom is non compos mentis--crazy.
Nevertheless, there are relationships here. The caregivers interact all day long with the residents, each with their own personalities, abilities, and disabilities. There's a lot of affection on both sides, so a breach of this sort does hurt.
It's hard even for me when Mom says something mean. I try to remember that her brain doesn't work well, but discounting her words is counterintuitive.
Oh well, just another day in the life of the Reminiscence Neighborhood--good training for the rest of life's interactions, where harsh words boomerang about and much forgiveness is needed.

Goodbye to Rosemond

I usually write every morning from 9 am to 1 pm, but today I had to make a deposit at the bank to cover checks I'd already written this weekend. On the way back from the bank, something pulled me to stop at Mom's residence.
Yesterday the morning caregiver, Elisa, had reported to me a few problems with getting the hairdresser to honor Mom's standing 10 am appointment. Often Mom sits there for an hour waiting for her turn, falling asleep and returning too tired to eat lunch. We don't like her to miss meals because she has been losing weight lately.
I didn't want to take time to stop and speak with the hairdresser but on an impulse decided to do it anyway.
As I entered the building, I ran into the daughter of another resident, Rosemond. She looked tired and was carrying two paper bags full of clothes and empty hangers.
"Hi, Debby--" I began, but then I knew.
She was not only tired but upset. "Oh, no!"
"Yes, last night," she said. "I was hoping to run into you or Deenie."
"I'm so sorry," I said, giving her a hug. "I saw her yesterday, sitting with the others in the circle, looking fine. Let me carry something."
"No, I'm just taking them to the car," she said, but I took one of the bags and walked with her to the elevator, the parking garage, and back to her mother's room on the same floor as my mother.
She cried a little and explained the details, some of which I knew: a fall, visits to the doctor but no x-ray, continued pain while walking, finally an x-ray that disclosed a broken hip, surgery, three weeks in a nursing home, a return to Ocean View, bleeding from a broken blood vessel near the other hip, and then the events of last night.
The nighttime caregivers check on residents every two hours, and at one of the checks, Rosemond was found out of her bed, collapsed in a kneeling position against the bed, lifeless. She had apparently gotten up in the early morning with some problem or discomfort.
The paramedics came, Debby came. The 6 am shift arrived. Rosemond was put back into bed to lie peacefully until the man arrived from the mortuary with the stretcher, but her face was greyish tan instead of pink and white.
I talked to the hairdresser and found Mom in her wheelchair, pushed by Elisa, on her way to the 10 am appointment.
"You're here, Anne!" Mom said. "Stay with me!"
"No, I'm just stopping by to make sure you get your hair appointment on time. I can't stay."
She tried to insist that I stay, but I pushed her into the beauty salon.
On the way out I met Beulah, pushing a food cart into the elevator.
"Oh Beulah," I said. "What a hard job you have! You care for these people and then have to go through this with them."
"Yes," she said, wiping her eyes. "It is hard. I took care of her every day. Yesterday in the evening Betty asked for popcorn, so I thought why not and went down to get her a bag of popcorn. But then I thought the others would want some, so I got three bags and brought them upstairs and put the popcorn in small cups so everyone could have some. I said, 'Now you are at the movies!' and they all sat there watching the film we had put on the television, eating popcorn. Rosemond too."
"I'm so sorry," I said, hugging Beulah. "Rosemond was one of the sweetest ones... not like Julie Simon," I laughed.
"Yes," Beulah said with a knowing look.
Even in dementia, each resident has his or her own personality, and Julie is the drama queen of the floor, often yelling, "Help! Somebody help me! Somebody, anybody! I could be dying, but nobody comes. I just want to die!"
Julie provides comic relief, but thin, fragile Rosemond with the blue eyes and gentle face could only be loved. She often had a lost look but smiled beautifully when greeted. Then as she searched for words to return the greeting, words that did not come, embarrassment and puzzlement would banish the smile.
Arriving to the Reminiscence Neighborhood in August, 2005, she like all new residents was confused about why she had to live here. I overheard her saying to Debbie one day, "But where is Jesus in this?"
The big question: why can't I just die when my life feels over? Or at least live in my own home, as usual, with family providing care? Why do I have to be in this strange place?
No wonder residents puzzle over this question--none of us who are younger can figure out how exactly to balance care of our parents with the demands of work and family while years pass in which our parents can no longer care for themselves.
I went back to Rosemond's room, passing Ilona, the Hungarian caregiver, who also looked careworn this morning. She could only nod and purse her lips, holding back words and tears.
The man from the mortuary arrived. Debby and I stood in another room while he moved the body onto the stretcher.
"She had a deep faith," Debby said. "She was raised in South Dakota with those values: work hard, go to church. Her mother died when she was four years old, so her five older sisters meant so much to her."
The executive director came to show the man with the stretcher to the unused elevator that goes straight to the parking garage without passing through the lobby.
I said goodbye to Debbie and returned to my car, punching the preset channel button on the radio away from news to KUSC.
A piano concerto by Bach was playing--the perfect requiem.
Then the announcer was saying, "Everything Bach wrote, he wrote to the glory of God. Whether it's just a piano concerto or 'Jesu, Joy of Man's Desiring,' you hear the transcendence."
Yes, that's it, I thought: to do all to the glory of God. It's in the Psalms, especially the last ten or so.
I will praise God as long as I live;
I will sing praises to my God all my life long.
However long that might be, however lost my mind may be, I added.
Let me be like Rosemond.
Let my smile, my lost look, or just the cells of my body pulse with praise.

My Last Day

I arrived at 9 am to take Mom out for a big day: first to church, then to the baptism of her former caregiver's baby at St. Basil's Church on Wilshire, and then to a celebratory luncheon at Q Q's Restaurant in Glendale.
I was relieved to find that she was dressed in the maroon and black knit suit I had laid out for the occasion and that she had finished her breakfast.
"You look great today," I said. "Your hair too, even though it's almost been a week. Tomorrow you get your hair done. It's your hair's last day."
"It's my last day too," she said.
This comment stopped me short. I wasn't sure how to reply, so I didn't.
"Okay, we have your purse, your envelope for the offering," I said, changing the subject. We're all ready to go."
We went. We saw. We did pretty well.
I brought her back at 3: 30 pm, and we passed through the large room full of residents sitting in a circle for a social time or story. I handed Mom off to Racquel again.
As it turned out, for one of the cheerful, white-haired residents sitting in the circle, it really was her last day.
The next day she was gone.

Saturday, October 14, 2006

Never Long Enough

No matter how long I stay, it is never long enough.
Today I had a meeting at church from 9 am to 1 pm, and I hoped to drive to the San Fernando Valley for another event starting at 3 pm.
That meant I had about 1:30 to 2:15 pm to visit my mother, but she had a private caregiver coming from 2 to 10 pm so I felt that she would be fine.
The caregiver, Raquel, comes every Saturday and Sunday. She talks with Mom, takes her for a walk to the drug store to buy an ice cream cone, takes her to dinner, gives her a shower, watches Lawrence Welk with her at 7 pm, and helps her into bed at 9 pm.
When I arrived at 1: 30, I intended just to talk with Mom in her room for a while and then leave. She was sleeping in her recliner as usual when I arrived, covered by her pink velour blanket with the tied-together fringe.
"Hi, Mom," I began, kneeling down by her chair. "I'm here."
"Oh, thank goodness you finally came," she said as usual, opening her eyes and struggling to wake up. "I'm all ready to go."
"Good," I said. "You look sleepy. You've been taking a nap?"
"No, I was just waiting for you. I'm so bored here. I'm ready to go out."
"Okay, but I wasn't really planning on going anywhere."
"Don't I have to get poked today?"
"No, we did your blood test on Wednesday. We don't have to go there again today."
"Well, I don't care where we go. I just have to get out of here."
"Okay," I said, figuring I could take her for a walk while waiting for Racquel.
We began with a trip to the bathroom, as usual, and then I got her purse, her footrest extensions for the wheelchair, and her straw hat with the white silk scarf that wraps around her neck to hold it on.
"You look like Katherine Hepburn," the receptionist always tells her when she's wearing this hat.
When we were just about ready to leave, Racquel arrived, much to my relief. That meant I could send them off together to get the ice cream cone after I got them started and went to the car to get money for the ice cream.
I escorted them to the front garden of Ocean View Assisted Living, where I left them while I went to my car.
Then I put the money in Mom's wallet and explained that I had to leave.
"To go take care of John," Mom said.
"Yes, to see what he's up to," I lied.
Just about the only reason she can see for parting with me is John or my kids. She admits that they need me, that she has to share me with them. But for any other event, she demands, "Take me with you."
I said my goodbyes and sent them off down the block. It was just 2:30 pm, so I still had a chance to get to North Hollywood in time for the Mass to be celebrated by newly ordained Roman Catholic women priests.

Friday, October 13, 2006

Don't Call Them Diapers

Humiliation is a daily fact of life when you live in a nursing home or even in an assisted living facility with a fair amount of assistance.
You get called "sweetie" all the time, even if you were a Ph.D. in your earlier life.
If you're in a wheelchair that you can't propel yourself, you may wait an hour or two to be taken where you want to go--to a meal or to the restroom.
If you can't remember where your room is or why you live there, you may have to ask these questions repeatedly.
But the worst humiliation of all comes with incontinence.
Mom has had a gradual slide into urinary incontinence over the last six years, as a result of bearing children four times.
At first she would put a sanitary napkin (the kind used for menstruation) into her underwear, but later the pad wasn't big enough and slipped around.
Finally she accepted wearing Depends, a brand of disposable underwear, instead of her own undies.
But her caregivers all refer to the disposable underwear as "your diaper."
"Let's change your diaper," they say to her instead of "Would you like to use the restroom?"
Of course, when she sits on the toilet, she is unlikely to urinate because she no longer has the ability to start or stop the flow. A trip to the toilet is mainly for the purpose of removing one Depend and putting on another.
Nevertheless, when I am with her, I ask if she wants to go to the bathroom. I don't say, "Okay, it's time to change your diaper."
I've used the brand name Depend to refer to the underwear over the past several years, but lately I noticed that she still calls them her "pads."
As a result, I now refer to them as pads. Any little fiction that helps to preserve her dignity is worth using.
For Mom the worst part of incontinence is having to have her disposable underwear changed at night, when she's in bed.
She'd prefer to get out of bed, use a walker or wheelchair to get to the bathroom, and sit on the toilet while her pad is changed, usually about twice per night. But that's too much work for a staff of two in charge of 28 people for the night.
Instead she has to lie in bed while her "diaper" is changed. The caregiver wipes her pubic area and applies A & D or zinc oxide cream before rolling her to each side to get a new disposable garment on.
"Roll over, sweetie, so I can change your diaper," the caregiver may say.
Mom hates this, but she cannot change it. If I ask one set of caregivers to use the word "pad," those on the day shift or the next night shift may not have heard the message. There's a high turnover in this kind of work and low pay--not much incentive to worry about the niceties of language.
The humiliation continues.

Thursday, October 12, 2006

Let's Use the D Word: Dementia

A jury in downtown Los Angeles is now deliberating on the case of Russell Weller, the 89-year-old man who drove through the Farmers' Market in Santa Monica on July 16, 2003, killing ten people and injuring dozens more.
Because the case is so similar to my experience with my mother, I wrote a commentary that appears today in the Santa Monica Daily Press, p. 5. The link to my reflections: www.smdp.com/article/articles/2816/1/Guest-Commentary-By-Anne-Eggebroten/Page1.html
For me, the case is very clear: Weller was negligent on that day, but his negligence began when he got behind a wheel and turned the keys in the ignition.
He should not have been driving. His comments after the accident show that he had some form of dementia. He or someone in his family should have figured that out before the tragedy occurred.
We too are guilty because we have not pushed for mandatory testing of drivers over 75, and we have not protected our street fairs and markets from these dangerous drivers.
I look at the Weller case and know that my mother could have killed someone when she was still driving in her late 70s and early 80s.
I knew she was dangerous and tried to get her off the road, but I didn't take her keys away. She stopped driving only when she totalled her car. Three years later my siblings and I learned her diagnosis of Lewy Body Dementia.
Why has the subject of dementia not been raised in this trial?
Instead the prosecuting attorney talks about whether Weller had control of his car, and the defense attorney talks about "pedal error."
Whether he had control or not, he certainly made some mistakes, and those mistakes almost certainly were caused by dementia.

Monday, October 02, 2006

Ice Cream Cone

Mom's pain threshold seems to be dropping. When I push her wheelchair on city streets, every small bump causes a sharp cry from her.
Today she had another dreaded blood test to check her coagulation level because she is on Coumadin.
She wanted to go for ice cream afterward, so off we went toward the Rite-Aid for a 99-cent cone.
Butter pecan is always her favorite. I pulled an 18"x 24" plastic bed pad out of the bag hanging on the back of her wheelchair to use as a bib and tucked it in around her neck.
Soon we were outside in front of the store eating our cones, mine a mint chocolate chip.
"Lick around the edge of the cone," I kept urging her, but she can no longer accomplish this feat.
She kept taking bites out of the top while the ice cream dripped onto the cone and her fingers.
A year ago she could do that if I reminded her, but now her tongue can't do the motion.
Her speech also is often incomprehensible because her mouth and tongue just don't work as efficiently to create the words. On bad days her mouth hangs open, her lips and tongue only moving slightly, while the sound comes out unbroken by letters like t, k, b, p.
From the intonation and vowels, I can usually tell what she is saying.
We stood in the sun happily, eating our cones at 5 pm, much to the interest of mothers and children entering the store.
But then, halfway through her cone, she said, "I don't want any more. You can throw it out."
This has never happened before. She always finishes an ice cream cone, sometimes even successfully tearing the paper off the bottom before popping it in her mouth.
There was still a good-sized mound of ice cream on top of the cone.
"Okay, fine," I said. "It's dinner time anyway. That way you'll have more room for meat and vegetables."
"I'm not going to dinner," she said.
"Yes, you really need to eat your meat and vegetables," I said.
She has been losing weight recently, eating only half of her meals and sometimes refusing to go to meals. Her weight is now 114 pounds, including her heavy black ankle-height shoes. About six months ago she was 133 pounds.
I removed the bib and put it in a trash can, along with the napkins we had used.
We went back to her residence, where I washed her hands and face and took her to dinner.
She started eating the chicken noodle soup, and I went home.
But I realized she had passed a new milestone in her physical decline.