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.