Never Leave Your Mother Unattended

"I want some candy," my mother says in her wheelchair, looking at the dish of wrapped hard candies at her eye level on the desk in the elegant lobby of her residence.
"But you just had breakfast," I argue.
"I want a candy!" she insists.
"Oh, all right," I concede, slipping a couple of the wrapped sugarless lozenges into my pocket. "But not until we're in the car."
It's 8:50 am and I'm signing her out as we leave for church. Usually we go to the 9:30 service, but for two Sundays in a row I need to attend a membership class from 9 am to noon. Last week Mom got bored and restless in the class, so I wheeled her into the 11 am service and left her there for half an hour under the supervision of an usher. I'm planning to do that again this week.
As we reach San Vicente Boulevard, I realize the street is closed for a 10-K run to benefit some charity. After making the detours, we park a block away and arrive just after 9 am.
It's a circus of a Sunday at this large Presbyterian church. In addition to the 10-K runners jogging past in front, there are signs on the patio directing members to a flu clinic, an assembly line to make Thanksgiving baskets for the poor, and a sign-up table for the third-world gift fair coming soon. It's also stewardship Sunday.
Steering past tables filled with canned goods and boxes of stuffing mix, we enter the room for the new members class. Mom holds out pretty well but at 10:30 demands her second trip to the bathroom.
After completing that mission, I decide to wheel her into church. Mom always enjoys listening to the music and putting her envelope in the offering plate.
"Please keep an eye on her and let me know if she needs me," I say to one of the ushers. "I'll be in the classroom off the patio."
"No problem," says the usher.
I return at noon, greeting my friend Dorothy Beals, an usher.
"She slept most of the time," Dorothy tells me.
I slip into the pew next to Mom. When the service ends, I walk up to the front and drop my stewardship pledge into the basket there. I notice two crystal bowls filled with water and some pretty aquarium stones in the bottom.
Why those bowls are there? I wonder. A baptism maybe?
Mom and I wheel out of the church, greeting the pastor and starting to head for the car.
"Well, did you enjoy the service?" I ask.
"Yes, but this candy in my mouth won't melt," she answers, slithering something around with her tongue.
At first I barely hear her, my thoughts elsewhere. But suddenly it hits me: Candy? What candy? Was one of those candies in her purse? Or maybe a button?
"Mom, what's in your mouth? Here, spit it out," I demand, putting out my hand.
Out pops a small flat glass stone, the kind used to hold flowers in a vase or to decorate an aquarium. It sparkles and has a pale blue wave of color locked inside.
"Mom! Where did you get this?" I shriek.
"That kid gave it to me," she answers.
Half-laughing, I push her back into church to tell Dorothy.
"Yes, everybody walked to the front with their stewardship pledges," she confirms. "They each took a stone as a token of their promise. One usher went to her for her pledge."
And handed her this glass stone, I realize. She must have thought it was a mint.
"Thank goodness she didn't choke on it," we conclude.
What a close call. It must have been in her mouth for twenty minutes. She could have tried to swallow it or chew it up.
Worst case scenario: a dramatic asphyxiation in the middle of the service, at the site of the subsequent funeral.
Note to self: Never leave your mother unattended.

Dementia and Dumping

Not everyone with dementia has the privilege of living in a care facility or in the home of a family member.

In today's Los Angeles Times, the lead story is "L.A. Files Patient 'Dumping' Charges," about a lawsuit against Kaiser Permanente for dumping a 63-year-old woman with dementia onto Skid Row last March.

http://www.latimes.com/news/local/la-me-dumping16nov16,0,3911487.story?coll=la-home-headlines

Carol Reyes, a homeless woman, arrived by ambulance at a Kaiser hospital in Bellflower with facial wounds on March 17, 2006. Three days later she was driven 16 miles away to downtown LA, where she had never been before, and was left on a sidewalk wearing only a gown and socks.

After she wandered for a few minutes on the street, workers of the Union Rescue Mission took her in. A few days later she was sent to another hospital and diagnosed with pneumonia, anemia, and dementia.

I can't imagine what an already confused person would think of being left on a strange and dangerous street like that. My mother has such nightmares without even being exposed to real dangers.

California closed most of its mental hospitals some years ago, believing the care to be inadequate in many of them. But we have not made other provisions for our mentally ill population. Many older, confused people live in parks and wander the streets until they arrive at an emergency room or at the doorstep of a private charity like the Rescue Mission.

What should a concerned citizen do? Donate to charity? Call for a national health care plan? Please post your ideas.

An LBD Diagnosis at Age 55

One reader shared the following comment on this blog (on the Halloween entry):

"I too, am a full time care giver for a Lewy Bodies sufferer. I have been looking for others who are dealing with this miserable disease. My life partner of 25 years, aged 55, was diagnosed with early onset in February. I think we have been dealing with the disease for about 4 years and didn't know what it was. I would welcome sharing with others episodes of the "adventure" we are on."

My heart goes out to this caregiver. What a difficult journey. To all of us merely caring for a parent, let's hold in our prayers those who are faced with this diagnosis in a partner and at an earlier stage of life.

I invite this caregiver to share any episodes, ups and downs, as comments on this entry. If you decide to start your own blog, I will certainly put a link to it here.

Others are invited to share comments as well.

Remix on Birth, Abortion

In years past my mother taught maternity nursing and took part in the arrival of many babies. As a public health nurse entering the homes of desperate mothers who had become pregnant though they could not feed another child, she was pro-choice in the 1950s, '60s, and '70s.
After retirement at age 60 in 1976, however, she moved back to Boulder, Colorado, where her church, First Presbyterian, had moved several steps to the right.
The church was showing graphic anti-abortion films that featured discarded embryos among other things. Mom went through a 10-15 year period of being prolife as a result of this input, but after I published a pro-choice book on abortion, she rethought the issue and decided she favored keeping abortion legal.
Anyway, in her illness with Lewy Body Dementia now, many scenes from her past experiences cycle through her mind. One story that I hear every day goes as follows:
"Anne, you know that girl that I saved? She's going to medical school now!" she begins.
"Oh, good," I say.
"Yes, and to think that she grew up out of just that little bit of flesh. They had thrown it out, but I went through what they threw out and looked and saw that there was a baby girl."
"Oh really?" I say.
"Yes, I saved her!" she continues with delight. "I gave her to my brother, and he and his wife raised her. And now she's so smart that she's even going to med school."
"Yes," I say. "Jennifer is hoping to go to med school."
In earlier versions of the story the saved flesh had no further history, other than being raised by Mom's brother or son, but now two of my brother Bill's daughters are taking premed courses, and Mom has them mixed into this story about the bit of flesh.
In the last couple of days, however, Mom has decided that one of her caregivers, Meselech, is that saved girl.
"Hi, Evelyn," says Meselech with mischievous delight when Mom and I arrive in the Reminiscence Neighborhood pushing Mom in her wheelchair. "I'm your daughter, aren't I!"
"Yes," Mom says. "Anne, this is my step-daughter. I rescued her when she was just a little piece of tissue about to be thrown out. I gave her to my brother to raise, and I adopted her so she's my step-daughter."
"So we're sisters, right?" says Meselech, laughing. "Mother, are you going to introduce me to my sister?" Meselech is from Addis Ababa, Ethiopia, and thinks the whole thing is quite funny.
"Yes," says Mom, laughing at the general merriment. "And she's going to go to medical school at the University of Colorado."
"Oh, I see," I say.
This whole thing is not funny to me--I am so tired of hearing about the saved bit of flesh and what became of her. But it provides Meselech with some amusement; she spends eight hours a day, five days a week in the Rem Neighborhood, and I don't begrudge her any humor she can find to pass the time.
"And to think I saved her!" says Mom.
"Yes, Mother," says Meselech.
The odd thing about all Mom's delusions is that she remembers them in great detail from day to day, and they collect more history like a snowball rolling downhill.
Usually I just nod and listen, but today she began with insisting that we leave immediately to go to Macy's to buy nylons for someone--I'm not sure whether it was for this rescued-tissue girl or one of her caregivers.
"Anne, that girl whose husband died, I promised her that I would buy her some nylons, so we have to go to Macy's right now!" Mom said when I walked in this afternoon.
I couldn't just nod and say yes to this one. Nobody's husband died except in Mom's delusions.
"No, Mom, we are not going to Macy's. We are not buying nylons for anyone."
"But I promised her!"
"I don't care what you promised her," I retorted angrily. "We are not going shopping today. We can go to the dry cleaners and maybe the post office if you want, but that's all."
"Oh dear, I promised her," Mom whimpered as I pushed her wheelchair out the door of her room and into the general sitting area of her floor.
There we ran into Meselech, who said, "Hello, Mother! I'm your daughter, aren't I!"
And Mom cheerfully moved into her story about the little girl whom she saved. She forgot about the nylons.

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.

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.

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.

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.

Sabotage

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.

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.

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.

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.

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.

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.

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.

Back to School

My mother's mind can't hold onto the fact that I'm traveling.
An hour or two after I talked with her, she called my home and left a message:
"Anne, where are you? I'm all ready, waiting for you to pick me up and go to the University of Colorado."
My husband reported this to me later in the evening.
"Oh, that's because I was talking with her and her mind was on full speed ahead. She was talking about going back to live at the P.E.O. chapter house in Colorado Springs."
Then I remembered that she had also said she was going back to the University of Colorado to earn a Ph.D.
I didn't even try to explain it to John.
I realized I shouldn't have called her in the evening, when she should have been quieting down for bedtime. My call had further added to the stimulation in her mind, and her caregiver probably had had trouble putting her to bed.
Actually, she can't dial any phone number, so she must have talked her caregiver into calling my home.
What a scene: her sitting up, expecting me to arrive any moment to take her to Colorado, insisting on calling my home, and the caregiver trying to calm her down...
I won't call again in the evening...
Perhaps I should have argued with her on the phone: "No, you can't go back and earn a Ph.D. People who are 87 years old don't do that!"
Perhaps I shouldn't call at all when I am traveling.

Mother vs. Daughter

Even when I'm 3,000 miles away from my mother, helping my daughters move into their college dorms, there are moments when both are demanding my attention.
After driving one daughter and her stored belongings from her grandmother's home on Long Island to her dorm in Hartford, Connecticut, I decided to call my mother.
Ellen was shopping for odds and ends in Target with two friends, so I thought it would be a good time to call. I stood outside the store and dialed her on my cell phone, feeling guilty for not having spoken with her for the past three days. Today, the fourth day of my absence, I called her.
She happened to be on full speed ahead mode today, talking about everything under the sun and not making much sense.
"Yes, I've decided to buy Uncle Byron's house. We can fix it up and have a fox farm there again. People always need jobs, so we can hire some men to run it," she began.
"Oh, wow, that's an interesting idea," I said. "You mean the house at Summit Lake?" This is near Mancos, Colorado, where she lived a year at age 13. I've never seen the house, sold fifty years ago.
"Yes, I'm working on my diary too. I don't know why we didn't send it off yet."
"Send it off to whom? You mean to a publisher?"
"Yes, I finished typing it a few years ago," she continued. "I don't know why I didn't send it off yet."
"You didn't finish it," I said. "There's still more of the diary to type." Typing her diary from 1936 to 1941 is an endless project that she enjoys "working" on, though she now can't find the right keys on her laptop and it ends up unreadable.
"And another thing. I've decided to go back to school and earn a Ph.D."
"Oh--really?"
"Yes, there's all that history, Telluride and all. I'm going to write it up for my dissertation."
"That's an exciting idea. You are really full of energy today!" I stalled.
Should I tell her that people who are 87 years old and have LBD do not earn Ph.D.s? It's September, and she has that feeling that she should be starting back to school.
This conversation showed no signs of ending, so I decided to walk into Target and catch up with Ellen. When I found her, she wanted to consult with me on buying sheets and a decorative pillow for her dorm room.
"Get off the phone," she demanded. "I need to talk with you."
"Okay, Mom, I've got to go. I'm at Target shopping with Ellen for things for her dorm room."
"Oh, I thought you were right here."
"No, I'm in Connecticut, remember, taking Ellen back to college."
"Well, I'm going back to college too. I think I'll live at the Chapter House--"
"Mom, I can't talk any longer. I have to go." She kept right on talking, unwilling to let me go. After five more minutes, I finally said, "I'll call you again later. Goodbye"--while she was still talking.
I turned to Ellen and found that she had put regular-sized twin sheets into the shopping cart.
"But Ellen, your bed is extra long. Those sheets won't fit. We'll have to go to Bed, Bath & Beyond to get extra long."
We finished shopping, and I called my mother again later in the evening. She was still on full speed ahead, talking about going to the University of Colorado, going to live at the Chapter House in Colorado Springs...
I mostly just said "Uh-huh, yes... ummm" instead of arguing with her. I don't try to bring her to reality when I'm speaking over the phone from a long distance.

A Poet Reflects on Losing Things

A poem by Elizabeth Bishop,
sent to me by a friend
after my mother shared her anxiety about losing things...

The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn't hard to master.

Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother's watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn't hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn't a disaster.

--Even losing you (the joking voice, a gesture
I love) I shan't have lied. It's evident
the art of losing's not too hard to master
though it may look like (Write it!) like disaster.

~ ~ ~ ~ ~ ~ ~ ~ ~

Hints for Coping with LBD

An email arrived with this message:
"I was diagnosed a couple years ago with probable LBD. Any hints for me or my caregiver?
--Chip"

So here are the main things I would advise:

*Remember it is only a tentative diagnosis... some people told they have LBD turn out to have vascular problems (small blood clots that affect the brain) or other forms of dementia rather than LBD.

*Look at the accomplished people who have had LBD (such as Robert McAfee Brown and the publisher of the LA Times) and don't let your self-esteem fall (because you can't remember names or make other mistakes).

*For both you and your caregiver, it's important to accept the illness... to flow with the daily changes and learn about this stage of life, rather than feel resentful about the losses you are experiencing.

*Take precautions to avoid falling. Balance problems are common in LBD. Having dementia is one thing, but breaking a hip and possibly being in a wheelchair is a real inconvenience and has an effect on your overall health.
If I had it to do over, I would have arranged for my mother to have a companion 24/7 or supervision in a group setting sooner. That would have prevented the fall she had in August, 2004. With LBD you get to where you can't remember to use a walker--she left it at the door of her bathroom and fell in the bathroom. Also in the night she will attempt to get out of bed and walk, not remembering that she needs a walker and someone to be at hand.

*Make sure you are taking Exelon and Namenda or some such medicines--they really do halt the decline, as far as my mother and I can tell. And don't be reluctant to take an antidepressant such as Celexa or Remeron. You will need it--my mother struggles with depression.

*Avoid drugs like Restoril, Ativan, Respirdol and Haldol-- all antipsychotics and neuroleptics. These really put my mother into a stupor and can cause irreversible brain damage. They can also cause an anti-neuroleptic reaction (a serious allergic reaction) in LBD patients.
Providing a companion as many hours as possible per day and providing one outing or interesting activity per day are better ways of avoiding the problems for which these drugs are prescribed.

*Be aware of the two biggest signs of LBD:
1) daily fluctuations in your alertness, and
2)hallucinations.
My mother has had LBD for 5-6 years, and at this point she can have one very good, alert, active day--but the next day she will be almost impossible to rouse. She will be dressed and taken to meals but will almost sleep through them. The next day she may be alert again or may have another sleepy day. Sometimes she will have a good morning and be unrousable in the afternoon.

Then there's the occasional agitated day when a dream the night before seems very real and she is reacting to it most of the day, either with anger or fear or grief. I've learned not to report deaths in the family and not to give her bedtime anxiety with statements like "Tomorrow is Easter! I'll be here early to take you to church."

With hallucinations, your caregiver needs to remember just to listen to your reports, commenting with interest, and to avoid contradicting you except when necessary. My mother often reports having seen a child or animal or person that actually was not present, but I don't try to argue her into accepting my version of reality. When she sees people on the street or in a restaurant, she usually recognizes them as family members or friends; I either comment, "Oh, that's interesting" or remind her that her son is in Colorado and we are in California.

As Mae West (I think) said, "Old age--it ain't for sissies!"

Thanks for writing, Chip. Hang in there.

A Crazy Idea

My brother Bill called to talk about maintenance issues at the Trout Lake cabin, and I moved the conversation to the topic of Mom's care and her desire to get to Colorado.
"She may have dementia, but one thing she always talks about is wanting to get back to Colorado. I can't get any caregiver to go with me, and I can't do it alone, but if you could get a week off in September or some time, maybe we could both take her."
"Hmmm... dying woman's last wish," he responded. "Yeah, maybe I could get some time off. I'll look into it."
"I've thought about driving her, but it would mean sitting for so long in the car and many bathroom stops. I could get her on a plane, but I don't see how to do the change of planes in Phoenix onto one of those small planes that you have to walk up the stairway to get into. That's the only kind that flies into Durango. I could fly her to Denver and get her off the plane there; then we could drive to both Boulder and then down to Telluride..."
"Or fly her to Grand Junction. They have bigger planes in Grand Junction," Bill said. "It would only be a three-hour drive from Grand Junction."
"Oh yeah. That might work," I remembered.
We'll see if anything comes of this, but Bill and I might try to take her to Colorado for one last time.

At the Lone Tree Cemetery

Under cloudy skies the five children and numerous grandchildren, great-grandchildren, and a few others gathered at Lone Tree Cemetery east of Telluride to bury the ashes of Walter Pera, my mother's cousin. They grew up together in Telluride.
One of Walter's daughters read a beautiful account of his life and personality, and then others spoke of their memories.
Davine Pera read letters received from those who hadn't been able to come, like my uncle Herschel Gustafson and my mother.
I added a few words about how Walter had been her favorite cousin, always generous with his time, teaching her to play tennis, and how much she would have liked to be here today.
Then the whole group went to the Swede-Finn Hall for a luncheon reception, after which some returned to the cemetery for the actual interment of the ashes.
By that time it was raining, so the crowd stood under umbrellas. Each of the children put something in the metal box (made by Walter) that held the urn. To take with him in the afterlife, they put in a screwdriver (something he hated to be without), a coffee-boiling can he had made from an old Hills Bros. coffee can and used on elk hunting trips, a silver dollar, a bullet, a root beer barrell (candy), a few letters, and a Finn flag. His parents were Finnish immigrants, and he always maintained an allegiance to Finland, visiting their village in 1985.
The memorials were very moving under the somber sky with the steep slopes of the U-shaped valley disappearing into the low clouds. Walter lived and worked in these mountains, living up at the Tomboy Mine for one year.
He lived his 92 years courageously and finally was buried next to his older brother, August, who was born in 1907 and died in 1943. August's twin died before his second birthday, and a sister born when he was two years old only lived a day. Finally in 1911 a sister was born who lived to age 89, and then in 1914 Walter was born.
What a hard life their mother, Mary Gustafson Pera, had. Her husband died in 1924 of rheumatoid arthritis after being an invalid for several years. Mary took in laundry and ran the town sauna for a living. Walter took picked up dirty laundry on his sled and returned them when cleaned and ironed.
When the mines closed in Telluride during the Depression, the family moved to Durango. Walter returned to Telluride and by 1943 my grandfather, August Gustafson, hired him at the Western Colorado Power Company. I heard some stories of my grandfather's kindness to Walter and his family.
In April there was a fire in Walter's garage in Durango, where he and his wife Allene were living. They had to move to an apartment, and this upset Walter greatly. He no longer had his shop area to tinker in. He had increasing dementia, possibly LBD, but refused to go into any assisted living. He and Allene often ate doughnuts and lemon meringue pie instead of healthy meals.
During a trip to Oregon to visit his daughter there, he contracted pneumonia and was dying. He knew it and wanted to end his suffering.
"Isn't there something you can give me so I can die?" he asked his daughter, two days before his death.
"No, papa," she said.
"I can't die, dammit!" he cursed.
He also asked for a gun, in true pioneer style, but wasn't given one.
Now he rests in peace, surrounded by his beloved mountains.
I walked around and looked at the other family gravesites, thinking about his long and courageous life, wishing my mother could have been here for the family gathering and shared memories.
Within a few years she too will be resting in peace in Colorado, her ashes buried not in this cemetery but at Trout Lake.

Driving to Colorado

Today I leave to drive to Colorado for Walter Pera's memorial service.
He died in Oregon, visiting his daughter, and his ashes were taken back to Telluride, where they will be placed in Lone Tree Cemetery with a graveside gathering of family sharing memories
about him.
The big question is whether to take Mom. She would love to go to Telluride and to be present for this event, but I don't have anyone to accompany me and I don't see how I could do it alone.
Actually, it is not a question. There's no way it could be done.
Flying, it would be hard to take her wheelchair, commode, walker and to get her on and off the small planes (there's a stairway passengers have to walk down to get off the planes--she could be strapped into a chair and carried down, but that's not easy, and to get to Durango requires a change of planes in Phoenix).
In a car, she'd be sitting in the heat (with AC) as we drove across the desert. We'd have to get her in and out of restrooms, at least one motel... And in Cortez, we'd have to pick up an oxygen tank.
I think through these things and decide, no, there's no way. Then a few hours later I am thinking through whether it would be possible, how it would be done.
The other problem is that I can't tell her I am going.
She would say, "Take me!" And she would be sad that I can't take her. And it would reawaken her sadness over someone dying--Reynold? Walter?
The result would be leaving her upset, possibly agitated and harder to care for by the staff of her residence. So I can't tell her, but I stop to say goodby to her before leaving.
"Mom, I'm leaving for a few days."
"Where are you going?"
"Uh... San Diego."
"Oh, take me with you."
"I can't. Just John and I are going. But I'll be back in a few days."
"When?"
"Wednesday."
"That long?" She is sharp enough to know that's a week.
"Yes, but Connie will be here and Racquel. You'll be fine."
"I just hope I don't have to think any more about Elbert and all the people who have died. That always makes me unhappy."
"Yes, it does, doesn't it. But don't think about that. Connie will take you today to get a manicure and pedicure. And I'll be back soon."
I left to drive across the desert alone, to represent her and our branch of the family at her cousin's memorial service.

Little Women

I took Mom to see a musical version of Little Women today at the Pantages Theater in Hollywood.
It was a big outing, and she enjoyed it. It was a gamble to get tickets because we never know when she will have a sleepy day and be unrousable for most of the day.
Thank goodness, she had a normal day today and was wide awake and attentive during most of the three-hour performance.
There was a kind of box-like platform near the 30th row of seats, on the side, where the usher rolled her in her wheelchair and brought a chair for me.
"Box seats!" I told her.
She wanted popcorn, but they only sold candy.
Now and then I updated her on the facts of the plot, whispering.
She usually whispered back something like, "He's going to rape her!"
"No," I answered. "That's not in this story."
At the end she commented something about "the story of the Marlboro man, who sits next to me in the dining room."
"Yes," I answered. "Ralph sits next to you. He was the first Marlboro man. He's such a gentleman, always polite."
"He never smoked," she says.
"Right... that's why he lived so long." (The second Marlboro man died long ago of lung cancer.)
I think she knows she is in Hollywood and has seen a fancy show with actors, so she's connecting it to her friend in the Reminiscence Neighborhood, the actor who did the Marlboro commercials in the 1950s.
But now she is off and running with another memory: "He called for me to come because he would die in 45 minutes. I came, and he died in my arms."
"That's Elbert," I say. "You went to see Elbert." I don't correct her details: he didn't die in your arms, and the time frame wasn't exactly 45 minutes.
Was it worth it to take her to this show?
I don't know... she enjoyed it, but her mind went to some unusual places with it.

Staph Infection?

I took Mom to the dermatologist for a check up on a small red area below her right breast, where she had a skin cancer removed about four years ago.
It was a routine appointment, and area of the old surgery was fine.
The doctor was worried, however, about the blisters on her neck and chest area, as well as. on her thigh near her crotch.
"How long has she had them?" she asked.
"About a month or more," I said.
"Then it's either a yeast infection or MRSA, methacillin-resistant staphlococcus aureas. I suspect the MRSA because she lives in a residence and these kinds of things get passed around easily from one person to another in those situations. They're very resistant to the usual antibiotics but respond well to Doxycycline."
"Okay, fine," I said, sorry that I hadn't taken much notice of these sores, except urging the caregivers to put Neosporin on them. Actually, they had gotten worse while I was gone.
"The only problem is that Doxycycline, in addition to stomach upset, doesn't work well with Coumadin," she continued. "But if you check her prothrombin time in one week, it should be okay."
"You mean Doxycycline makes her blood tend to clot more or to get thinner?" I asked.
"It makes it thinner, but don't worry about it. We'll just give her two weeks worth of it, and we will monitor her PT times."
Another hazard to watch out for--MRSA. More trips to get her PT times.
There's always a new angle to her care.

The Missing Hair-Do

Mom appears to be none the worse for the wear during my almost three-week absence, but I found out that she has not had her hair washed or set since July 12, when she had a perm.
"Don't get your hair done Monday," I said when I left. "You have to skip a week because of your fresh perm."
Mom remembered this and refused to go down to the hair stylist in the building on Monday for her usual appointment.
But the hair stylist interpreted her refusal as an indication that she didn't plan to get her weekly hairdo's any longer. She removed her name from the appointment list, and for the next two Mondays, Mom still did not get a shampoo and set.
When I found out, I spoke with Elisa, the stylist.
"She said no more," Elisa said, righteously.
"But she's on the third floor!" I said. "People on the third floor have dementia. You can't take their word for it and remove them from your list. Don't change anything without talking with me."
"I called your home, but you didn't answer," she said.
Funny that there was no message on my machine... but I again told her, "No changes unless you first speak with me."
Then Elisa said she could not give Mom a shampoo and set today. Since she only comes two days per week, that meant we had to go elsewhere to get it done.
I took Mom out in her wheelchair and we walked until we found a shop that would take walk-in business.
My 9 am visit ended up taking until 5 pm... I also had to get her a manicure because her nails were rough, and she was scratching herself on her chest. Then we had to buy Depends, etc.

The Real Thief

I arrived back in the Los Angeles area at 7 pm and went directly to see Mom instead of going home first.
She was glad to see me, but the big topic of conversation among the caregivers was how she had accused everyone of stealing her clothes.
Mom herself did not bring this subject up, so I didn't either in her presence.
As it happened I was wearing a long full skirt from India, comfortable for driving in the car for ten hours, and this skirt was originally Mom's. Six months ago I had removed it from her closet because it is too long and dangerous for her to walk in.
"Actually, I'm the thief," I told Bethlhem and the others. "This skirt I'm wearing is hers!"
We laughed about the whole episode of the stealing of the clothes.

Giving Up

Despite my resolution not to call, I find myself calling Mom to tell her that I'm almost back to California and will see her soon.
"Hi, Mom. I'm in Flagstaff."
"I wanted to be there. I wanted to meet you in Colorado."
Oh dear. I didn't want to get into a conversation like this.
"But I have to drive across the desert, Mom," I argue. "It's really hot."
"Oh, it is? Well, I'll give it up another year. Every year I give it up." She sounds tired, resigned.
"Oh well, maybe another year," I concede. "I'll see you soon, after dinner. I should be there by 7 pm."
"Good! I want to see you."
"But I won't be there until after dinner," I warn, hoping she won't become agitated waiting for me.
It's so hard to feel her longing to be in Colorado again and know that it will probably never happen.

Mancos Memories

I have attended Mancos Days, a parade and celebration of pioneer days in Mancos, Colorado, where my grandmother grew up and my mother spent many summers of her life, as well as one year during the Depression when there was no work in Telluride.
I call Mom, as I have done every two days or so on this vacation. The phone call may be the only event in her day besides going to meals and having a bath.
"Hi Mom, I went to the parade in Mancos today, for Mancos Days. I saw Racene and Martha and Gene and their families. Now I'm at Summit Lake, where Uncle Byron's fox farm used to be."
I want to share with her the happy memories of the past in Mancos, but unfortunately my words trigger a memory that she often recites, a set piece from the past at the fox farm.
"That's where Byron watched us girls one time when we were swimming in the lake. He came and watched, and we told Grandma Brown, but she just said, 'That's Byron. He just does that.'"
I've heard this story so many times.
But this time she adds a few new lines, probably just now invented: "Grandma Brown didn't care. She said, 'He just wants to play with you girls and show you what sex is so you'll be ready to be married.'"
I don't know how to respond to this. Argue, "No, Grandma Brown wouldn't say anything like that" ? Or ignore it? I don't think these are uncovered memories of childhood sexual abuse, but who knows? At any rate, it was a big experience for her as a child, and she feels that her grandmother did not respond appropriately.
The conversation ends, and I put my cell phone down and stare at the lake surrounded by pines with Mesa Verde in the distance behind it.
A beautiful place, but I feel like crying.
I don't know what core experience is at the root of what she has just told me, but I know that I can't call her and have a meaningful conversation about seeing the family at Mancos Days.
She's not there as a person to talk with, especially in phone calls. I resolve not to call again.

"Hopefully I'll Die"

I call my mother to check in with her again.
"Hi, Connie. How's it going?"
"Fine, Anne. Everything's fine. I gave her her bath and now we're watching Lifetime."
"Oh, good," I say, but I'm thinking, No--that channel is off limits now. It has too much sex, and everything that happens, she thinks it happened to her. Rape, murder...
"Could you let me talk to my mother?"
"Hi, Mom, how are you?"
"I'm fine. I'm watching a show on dying. It's about Elbert."
"Oh. Did Ellen come to visit you? I think she did."
"Yes, Ellen came. Or Marie. One of your two girls."
"Good! I'm glad she came. One of my three girls."
"I'm not going to take any more medicine. That's why Elbert died."
"No, Elbert had lymphoma. He didn't get sick from taking medicine."
"Elbert got lymphoma out of this. I'm not going to take it."
"You can take it, Mom. It's just your evening meds. I'll talk to Connie about it."
"Hopefully, I'll die before morning."
"What? You're not going to die before morning!" She sounds so cheerful, matter of fact. Maybe she means the person on the show will die before morning. Or maybe she and that person are one at this point. Oh well.
"I'll be back soon. Take care, Mom. Nice to know that Ellen visited. Can I talk with Connie now?"
"Hi, Connie," I begin.
"I changed the channel," she reports, reading my mind. "It's not on Lifetime now. And I'm about to give her the meds."
"Good! She gets mixed up when she sees things on that channel. I told her to take them... I hope she will."
"No problem, Anne. She'll take them."
"Thanks so much, Connie. Thank you so much for taking care of her while I am gone. I know it's not easy."
Another day of dementia care for Connie.
For me, another day of checking in long distance and not being able to help at all. But at least I've been able to get away.
"It's okay, Anne."

"Stealing My Clothes"

My cell phone rings, and it's Mom. Someone must have helped her to call me.
She is all excited.
"Everyone here is wearing my clothes. They're helping themselves. I counted everything. They took all my clothes, ten outfits, and won't give them back. So I'm calling you. I told them you would make them give the clothes back."
"Oh dear," I answer, trying to figure out how to respond. "They're stealing your clothes?"
"Yes, Connie is and so are the others."
"I don't think Connie would steal your clothes... she must have an outfit that looks like one of yours."
"No, it's mine. She's wearing it. We went to count the outfits in my closet, and they said there were forty, but I said I'm not going one bit further than thirty."
"Let me talk to Connie.... Hi Connie, so my mother is agitated."
"Yes, she thinks we are wearing her clothes. In the dining room, she points at Bethlhem and says, 'She's wearing my outfit!' I took her to her closet and we counted her clothes to see they are all there, but she doesn't believe me."
"Thank you, Connie. That was a good thing to do. I don't know what to say...maybe you can take her out for an ice cream cone."
"Hi, Mom. Well, I'll take care of it when I get back. If anyone has stolen any of your clothes, we'll solve it."
"I told them that Anne will make them give them back."
"Okay. Maybe you'd like to go out with Connie and get an ice cream cone or buy something at the drug store."
"I don't want to but I will if I have to."
Note: Lewy Body Dementia patients have hallucinations, seeing people or things that are not there, or misinterpreting what they see. This is an instance of hallucination--difficult for Mom and for those around her.

Scheming To Get To Colorado

I called Mom from Flagstaff tonight to stay in touch with her and give her the vicarious pleasure of the drive to Colorado.
"Hi, Mom. I'm in Flagstaff," I announced.
"Oh, good. I'm coming too. That woman is going to take me, the one with the little dog."
"Oh... you mean Louisa?"
"Yes, she's going to pick me up and drive me."
"Oh, I see."
I don't say, "But she lives in Boulder. It's not convenient for her to pick you up in California and then drive to Telluride."
Louisa did drive Mom to Trout Lake one summer a few years ago, from Boulder, so Mom has a few facts right.
I change the subject, and we talk a bit more.
Then I hang up, wondering if maybe I could take her to Colorado later in the summer.

Not Going to Colorado

Mom's entire goal in life is to get back to Colorado.
Every few days she has another plan on how to do it.
One day she says she will move back to the P.E.O. Chapter House in Colorado Springs, where her mother lived the last four years of her life. When I point out that it would be far away from me, she plans for me to move into the room next to her and live there. I stop arguing against the plans and just murmur assentively.
Another day she is going to go back to Boulder, buy back her house, and live there again.
Other days she is focused on moving back to Trout Lake, near Telluride, and living in her cabin there.
Today I had to tell her that John and I are driving to Colorado for a week. She wants to go with us, but I tell her this is just a trip for John and me. I don't tell her we are going to the annual meeting of the cabin owners at Trout Lake--she would want to attend it.
I've made arrangements for her private caregivers and for my daughters to visit her because I will actually be gone almost three weeks. John will return in a week, but I will attend a conference in North Carolina, then be back in Boulder and Denver visiting family, then briefly back at Trout Lake. I can't tell her that I will be in Boulder.
I don't know if she will be able to last so long without my daily visits, without getting out for church or doctor visits.
She will be on her floor in her residence except for a few trips out in the wheelchair to the local drugstore.
She wants to go but accepts my leaving.
Will she have a medical emergency or an emotional crisis?
We'll see.

Aftermath of Bad News

When I went to get Mom to take her to church, the staff of Ocean View Assisted Living reported that she had been agitated in the night.
I went to the log and read the following entry:
Evelyn alarm came off @ 2 am. I went to her room to discovered that she was at the edge of her bed. She claimed franicly that her brother just died in a fire. She had a night terror and tought it was real. She didn't want to go back to bed until she had her bra and stockings on. Stanley redirected her autention. Offer her something to drink. She refused. --Sarneva
"I'm sorry, this was all my fault," I told the staff. "I told her yesterday that her cousin had died, and she remembered that her brother died two years ago. Now she's all mixed up."
"Mom, did you have a bad dream last night?" I asked her.
"I was just getting my underclothes on," she answered serenely.
We went to church, and I brought her back to her residence by 2 pm.
I went home, but at 2:30 I got a call from her private caregiver, Racquel, who had arrived for her 2 pm to 10 pm shift.
"She's agitated. Okay, Anne, you will come."
"Wait a minute. What is she doing? I was just with her and she was fine. We went to church."
"She's crying... she says her brother died."
"Let me talk with her. Mom, how are you?"
"I'm just so sad because Reynold died."
"Yes, Reynold died two years ago. You miss him, don't you?"
"Yes, he was a good big brother."
"Racquel would like to take you out to the drug store. Could you go out with her and maybe get an ice cream?"
"I don't want any ice cream, but I can go out if you want me to."
"That would be good... you need to get out in the sunshine and not worry about Reynold. He's fine now."
"All right, I'll go out."
I talked with Racquel and explained that I had just been with Mom for five hours. I was not going to come back to deal with this problem, but I wanted her to take Mom out in the wheelchair for fresh air.
Crisis averted again--but from now on I will not tell Mom when anyone dies. It is too hard for her, too confusing.

Bad News and Dementia

Is there any way to tell a person with dementia that someone has died?
I got a phone call last night that Mom's favorite cousin, Walter Pera, had died on July 4 at the age of 92.
Today I went to visit Mom and tried to gently give her this news. She responded well and appropriately: "Oh, I'm so sorry to hear that. I loved Walter. He used to ask me to dance at school dances when I had no partner. He taught me to play tennis. He and Reynold caught a red fox and tied it to the clothesline. It ran up and down."
"Yes, Walter was wonderful. He was 92 years old. Reynold only made it to 87," I commented.
"What? Reynold died? You didn't tell me that Reynold died," she cried.
"Yes, he died two years ago. I told you but you don't remember because we didn't go to a memorial service. He didn't want one," I said.
But the damage was done. She was grieving all over again, deeply, for her brother. The news of Walter's death was not difficult for her, but re-entering her grief over her brother caused her to become agitated.
I shouldn't have told her about Walter.
Memo: Don't share news of deaths again. It is confusing for her and painful.

"Take Me to Your House"

It's so hard to make choices that are both good for Mom and good for me.
Yesterday I planned to bring her to my house for three or four hours for July 4th, but after one hour she was demanding to be taken back to her assisted living residence. I concluded that she needs more peace and quiet, fewer big outings.
Today I'm not going to visit her until 3:30 pm, partly because I'm busy with other errands and partly because I think she might be having a sleepy day after being out four hours yesterday. By "sleepy" I mean impossible to rouse when I hold her hands and talk loudly into her face, barely waking for meals. The Lewy Body literature calls the daily changes in alertness "fluctuating cognition."
When I get to her room, however, she is wide awake and angry that I had not come sooner. As a matter of fact, she's also angry at the two caregivers, Marnie Reid and Bethlehem Solomon , who are helping her out of her wheelchair onto the toilet.
"These people don't come when I call them," she says angrily. "I yell and yell and they never come to help."
"But they're helping you now," I note.
"They don't care. 'Why should we bother to help her? Just let her yell' they say."
"We didn't hear you," Marnie says. "Your room is so far from where we are, and we were working with Howard."
"That's what they always say. I'm going to move out of here."
"Mom, they have other people to deal with; Marnie and Bethlehem are the nicest ones here."
"Are you going to fire us again?" Marnie teases.
"They should make sure the pull cord is in your hand, so you can call them that way."
"I told them I was signed up for the show--you always sign me up--but they wouldn't take me."
"You mean the 3 pm music on Wednesdays? I should have gotten here earlier to take you to it."
"Yes, you should have gotten here earlier. You never come when you say you will."
"A group went out to see a movie today," Bethlehem tells me out of Mom's hearing.
"I'm ready to go. I want to go to your house," Mom announces.
"You were there yesterday but you didn't want to stay long. You wanted to come back here."
"I want to go to your house today."
"You can come on Sunday. We'll go to church on Sunday and then to my house, but today is Wednesday. We aren't doing that today. We need to go to Rite-Aid and buy a birthday card for your brother, Herschel."
"Okay. But can't I go to your house?"
"Not really, we can't go every day."
Soon I am pushing her wheelchair to the elevator and outside onto the sidewalk. She is satisfied to be going somewhere, anywhere.
When we reach the greeting card section of the store, she thinks we are looking for a card for my brother Jim, her son.
"No, it's for Herschel, your brother Herschel," I say.
We get a card and then go the to grocery store to buy little cans of V-8 in eight-can packages. She seems to be pretty happy as we wheel back to her residence.
She signs the July birthday cards--one to Herschel and one to her daughter Emily. She enjoys putting the birthday money in Emily's envelope.
I tell her I'm planning to mail her brother a snow globe of Telluride, like the one I gave her.
"That's hard to mail," she comments, and I assure her that I can pack it well. Good to know she can get that far in her thinking.
Connie, her evening caregiver, arrives and I leave, revising my mental notes on her care.
She needs daily excursions of no more than an hour--except on sleepy days.
Without somewhere to go, she gets bored.
With too many hours out, she gets tired and irritable.
Today she was unusually irritable, almost agitated.

Fourth of July

Two years ago Mom and I spent the Fourth of July in Telluride, as usual. We sat in chairs on Main Street to watch the parade, went to the town barbecue afterward, drove back to Trout Lake, and returned in the evening for the fireworks. We carried an oxygen tank everywhere with us, because her own breathing was not sufficient at 8,750 feet. She was 85 years old.
~~~
The year before that she rode in a car in the parade, waving to the crowd as a veteran. Another year earlier, in 2002, she drove herself from Boulder to Telluride, and at the end of the summer she got lost driving herself back to Boulder.
~~~
Last year she wanted to be in Telluride but had just recovered from a week in the hospital after an allergic reaction caused her throat to swell and stopped her breathing. (Sensitivity to drugs is often associated with Lewy Body Disease.) Instead of Telluride, I took her to Denny's, then to my house and in the evening to Marina del Rey for the big fireworks display. She liked it.
Looking back, I realize her thinking was pretty good last Fourth of July. She had lost some memory during her anoxic moments, so she was asking questions like "How's Mother? I haven't visited her lately. And how's Kermit?"
"He died ten years ago," I would tell her. "He died in your arms, remember?"
Each time she was quick to say, "Oh yes, he went to heaven. That's right."
But when I reminded her that her mother had died twenty years ago, she answered, "Why didn't you tell me?"
"You're the one who told me," I would begin, reciting some details of her mother's death and funeral, to her astonishment.
~~~
This year she's not thinking about her mother or her husband. When I arrived in her room at 2:30 pm, she was waiting anxiously for me and proud to be dressed in red, white and blue with new heart-shaped stars-and-stripes earrings. Because she was wearing navy blue pants, she began singing a song from her Navy days that has been running through her mind lately:
"Bell-bottomed trousers, coat of Navy blue--
She loved a sailor, and he loved her too."
She's been adding some off-color verses, which I and the caregivers ignore. I think she makes them up, but she's pretty good at rhyming--maybe this song had that potential sixty years ago as well. (Another aspect of Lewy Body is the loss of inhibitions, complex planning, and other frontal temporal lobe functions. )
Today she starts telling me, "Oh, we had fun last night. My friends and I had fun. And in the morning there were babies everywhere."
The caregiver and I ignore this and compliment her on the patriotic colors of her striped shirt with a red overblouse and dark pants.
"She needs a new pair of pants," Meselech tells me. Her Depends have somehow not been in the right position, so urine has soaked through. I find a pair of black slacks and tell her they are Navy blue. She insists on wearing red shoes.
Soon I am wheeling her to the elevator and to the parking garage. I give her an American flag to hold, along with her black beaded purse with a red-hat bead design and with a red, white and blue bandana we will use as a napkin and bib. I'm wearing a white shirt that says "Fourth of July 2004, Telluride" and navy jogging pants. We are a parade and catch the attention of everyone we pass.
~~~
At home John helps me get her out of the car and into the house. She is happy to arrive, and I show her that I'm baking cinnamon rolls. She notices some cookies, so I set her up at the kitchen table and give her one with milk; then I give her watermelon, then orange Jello with mandarin oranges.
She wants to go to the bathroom, but I tell her she has to wait until an hour passes since her last trip to the toilet. (After my hysterectomy, I can't easily get her out of the wheelchair, onto the port-a-potty, and back to the wheelchair.)
Meanwhile Ellen and Marie and a cousin have come in and out of the kitchen, and Roz arrives.
"Here's Roz. Roz, say hi to Grandma," I say brightly.
"Mom, cut the show-and-tell voice!" Roz says sharply. "You don't have to yell."
I apologize.
The cinnamon rolls are done, and I give Grandma one, but they did not rise well and aren't very sweet. (Because a doctor just found that Marie has sensitivities to sugar cane and wheat gluten, I tried making these rolls with Splenda and with gluten-free flour. Splenda says "measures cup for cup like sugar, great for cooking and baking," but apparently the yeast weren't impressed. The flour was from potatoes, sorghum, tapioca, garbanza, and fava beans; if I hadn't added a little wheat flour, it wouldn't have risen at all.)
At 4:15 Mom suddenly wraps her remaining half cinnamon roll in her napkin and says it is time to go back. She has been here only one hour.
I had been planning to let her stay for three or four hours and eat a dinner of barbecued chicken with us, because it's the Fourth and I've given her private caregiver the night off. I'm not taking her to see any fireworks--it's too many hours out for her and too hard for me.
Surprised that she wants to go back so soon, I coax her to stay longer and realize she'll never make it to 6 or 7 pm when we will eat. I decide to give her a light dinner now.
"Wouldn't you like a hot dog, Mom? I was going to make you a hot dog."
It's her favorite food these days, so she quickly agrees to stay but then demands the hot dog a minute later and keeps demanding it. I show her the pan where I am frying two hot dogs, but she doesn't understand why I don't give her the hot dog right now.
Meanwhile, she starts singing her song, but I interrupt her and change the subject to prevent any off-color verses.
"I better not sing anything bad
Or my mother will get mad," she sings to song's tune.
"My daughter will get mad," she corrects herself, still singing and looking at me.
"Yes, I will," I warn her.
Ellen, 21 years old, is sitting at the kitchen table too. "Oh, don't worry, Grandma. You can't sing anything that I won't like."
She doesn't know the kinds of things Grandma might sing.
~~~
We call my brother Jim, who is in Telluride and reports that the town barbecue was drenched by a thunderstorm. Mom's not interested in Telluride. She tells Jim she's at my house and recites what she's eating.
"These grapes have seeds in them," she tells him, eating another black cherry. "Nuts in them." I'm amazed when she correctly reports the orange Jello with mandarin oranges.
~~~
Finally Marie has gone to work, being hostess at a restaurant; Ellen has left to go to a barbecue with a few friends; Roz has driven the cousin back to Malibu. Mom is impatient to return to her assisted living residence.
"Take me back! I don't want to eat any more," she insists. "I just want to go back."
I don't get it. I'm still focused on my plan of giving her some kind of a nice day. I push her wheelchair around the block, but she's irritable and full of complaints when we hit any small bump. She just wants to be back in her quiet, controlled environment.
Then John and I load her back into the front seat of the van, and I drive her back.
I recall how different she is now from a year ago, and I wonder where she will be in her downhill slide next year. Or will she make it to another Fourth of July?
~~~
Note to myself: Look at local options for nursing homes. She won't need an elegant assisted living residence much longer. Just peace and quiet.