Christmas Photos

For Christmas Mom had a mini-vacation from Ocean View Assisted Living, spending two days and one night at our house. She enjoyed the Christmas tree, presents, food, and excitement of three granddaughters coming and going.
On Christmas Eve she wanted to open one present, the biggest and most intriguing one.
It turned out to be a portrait of her, drawn by an artist in the Philippines from a photo and beautifully framed, a gift from the caregiving agency.
However, the black and white drawing featured wrinkles and was not flattering.
"This is terrible!" Mom exclaimed. "I don't want it."
Fortunately, she slept well that night, so I got enough sleep too (on a mattress in the same room with her, lest she try to get out of bed in the night).
The next day turned out better, especially with the fun of Christmas dinner.

A Christmas Story

I made the mistake of giving Mom the Madame Alexander Doll catalogue and asking her which doll she would like for Christmas. Most dolls cost $60-$70, so I thought it would be a reasonable gift she would enjoy.
What she wanted, however, was the nativity set of Mary and Joseph with Jesus in the manger, sheep, a cow, and the surrounding stable--$300, not counting the angel doll she wanted to go with the others.
I spent a couple weeks trying to talk her into other dolls, but finally on the day after Thanksgiving I decided to order the nativity set.
"We're sold out on that, ma'am," said the salesperson when I finally courageously called in my order.
But then I felt terrible for postponing the order for so long.
What to do?
I ended up taking Beth and Laurie from her Little Women collection of Madame Alexander dolls and fashioning costumes to make them look like Mary and Joseph, and dressing a tiny baby doll as Jesus. I borrowed the stable roof from a wooden nativity set and found some sheep.
She loved her nativity set. It occupied the table in her room at Ocean View Assisted Living for the whole month of December.

To Demit or Not To Demit

Dear Harriet,

I believe you are membership chair for Chapter DV of P.E.O. in Boulder, Colorado. If not, please pass on this note.

My mother, Evelyn, has attended two meetings of a local P.E.O. chapter here in Santa Monica--Chapter R. She wants to join their group and attend regularly, but she does not want to demit from the Boulder chapter. She says her mother never demitted from the Telluride chapter when she moved to the Chapter House in Colorado Springs.

I told her she has to demit from DV in order to join Chapter R in California.

However, she believes (unrealistically) that she might someday return to live in Boulder.

Could you suggest a way for her to affiliate with Chapter R without losing touch with Chapter DV?

Perhaps she should be demitted without being told she has formally demitted. I'll leave it up to you.

The P.E.O. sisters here in Santa Monica are very kind. We met them through the Presbyterian church.

Sincerely,

Anne Eggebroten

Sick and Tired

All the experts advise caregivers: "Take care of yourself. Don't overdo it. Meet your own needs."
I do that by keeping my mother in an assisted living residence and by hiring a personal assistant for her six days a week, 22 hours a day. On Sunday I care for my mother, and on other days I try to visit her from 4 to 6 pm.
But this week I came down with a virus, about the same time as I finally located a flu shot for myself.
By Sunday morning, I was dragging. Instead of being at Ocean View by 9 am, I was still home eating breakfast, deciding to take Mom to the 11 am church service instead of the 9:30 service.
The phone rang loud and demanding in the quiet house, where John was still sleeping.
"Anne! Where are you? You're not here yet."
I reassured her and promised to be right over, reminding her that I have a cold.
But I felt angry. I know it's foolish to get upset with the behavior of someone who has dementia, but her phone call had pushed some old buttons from twenty or thirty years ago: the time I went on a hike and returned to the trail head to find her sitting in a car, furious, waiting for me. The time Emily drove across the country and did not call daily, only to have Mom report her to the highway patrol as a missing person.
When I got to Ocean View, everything was fine. Mom used a walker to walk from the dining area to her room. Then we went to a supermarket to buy a cake for the church luncheon and arrived at the 11 am service in time for the first Christmas carol.
We attended the TOPS luncheon (Terrific Older Presbyterian Something--Singles? Seniors?), where the entertainment was 45 minutes of Christmas songs.
Luckily Mom declined a bathroom visits, so we were on time to our next event, "Fa La La L.A.," a performance in Los Feliz of the West Coast Singers, the third oldest gay/lesbian mixed voice choir in the nation. All handicapped parking was taken by the time we arrived, but another spot miraculously appeared and I was able to get Mom into her wheelchair, through the will-call line, down the elevator, and into the wheelchair access area of the theatre by 3 pm.
Mom was stunned to be sitting under the noses of a choir of 60 as they sang their opening carol down close to the audience.
We got through the first half just fine, enjoying the rock 'n roll spoofs "Proud Mary Had a Baby" and "Giving Birth Is Hard to Do."
Mom was did well during the intermission and second half, until the closing number when the choir sang and signed "Silent Night," with some in the audience singing along.
On the last verse, however, they signed without singing as a cultural experience.
One voice in the theatre continued to sing until I clamped my hand over her mouth. I didn't try to explain this one to her.
Afterward I managed to get to the crowded bathroom, which was almost wheelchair inaccessible, without Mom knowing and demanding a visit. Her Depends would have to do their job.
I returned and mumbled something about having talked to a friend.
"Oh, you were talking to Grace Eggebroten?" she asked. Grace was her sister-in-law, who died earlier this year at age 96.
I didn't try to correct her. By this time it was 5:30 pm and my only goal was to get her back to Ocean View by 6 pm.
We would have made it, but I stopped at Sav-On to buy Depends and a few other things. I also called John and offered to buy something to make dinner, but he suggested going to Coco's. I accepted with relief.
At 6:15 pm as I loaded her out of the car into her wheelchair, hung the various plastic bags of Depends and Kleenex boxes from the wheelchair handles, and proceeded to the elevator of the parking garage, I was beat.
After the second elevator, we got to the third floor, where her evening caregiver was waiting.
"I looked for her lower plate but couldn't find it," Racquel explained.
"Thank you," I said. "I just don't know where it could be."
"It's a secret," commented Mom.
Racquel and I both did a double take.
"What do you mean?" I asked.
"I put it in the bathroom, in that little bag where you keep things," Mom answered.
I fell for this one and searched the various drawers and cupboards and bags of her bathroom before realizing she must have made this idea up on the spot.
Meanwhile, I realized I had left the foot supports of her walker in the car. Jona would need them to take her to physical therapy tomorrow at 9 am.
I walked back down the halls and took the two elevators back to the parking garage.
By the time I finally drove home, I was a wreck; my cold had become a sinus infection.
Nevertheless, I was careful to be cheerful to John when I walked in the door. He resents all the time I put into my mother, and if I return obviously tired and irritable, it makes things worse.
I sneezed a few times, however, and John quickly decided that I would not be good dinner company.
I ate a bowl of soup and went to bed, finally taking care of myself.
My brother Bill called an hour later and said he had talked to Mom.
"She sounded great, fairly coherent, better than six months ago. Had a lot to talk about. Said she was walking."
I tried to explain to him that when she gets out and about, taking part in things, her mind stays sharper, she's happier, and she's healthier.
I came across a quote to that effect tonight in a book I'm reading, What God Has Joined Together? A Christian Case for Gay Marriage. It came out this summer, written by my friend Letha Dawson Scanzoni and her friend David Myers.
"... social support--feeling liked, affirmed, and encouraged by intimate friends and family--predicts a lessened risk of ill health and premature death" (p. 19). If this is true for people of all ages, it must be true for older people with dementia.
I know exactly why Mom is doing so well. She has a personal caregiver to talk to around the clock, and she has a fair amount of contact with her family.
But I also know it's taking a toll on me.

The Whole 39 Yards

When Mom was first evaluated by Suzanne, the physical therapist, on Nov. 23, her diagnosis was "gait instability." With great effort Suzanne had pulled the safety belt to hoist Mom to her feet. At the parallel bars, Mom took baby steps.
Michael, the PTA, saw her on Wednesday, Nov. 30. By the following Monday, he commented, "She's doing a lot better today."
Jona reported this to me--I don't go to the PT sessions if I can help it.
By Thursday, Dec. 8, when Suzanne saw her for the third time, she was impressed.
"You're doing much better than a few weeks ago," she said. "You're doing most of the work, Evelyn."
She meant: "I don't have to pull you up out of the wheelchair."
Mom stood up, took a couple of steps, and sat down, five times in a row. Then she walked twenty feet using the walker while Suzanne held the safety belt. Then she stood up another five times.
No need to work at the parallel bars--Mom was beyond that.

[Footnote: Mom was talking a blue streak while doing all this.
First "Anne lost my lower plate."
Then "I left it under my pillow for the tooth fairy."
Then "Connie is so mean to me! She said I was going to go to hell if I didn't mind her. I asked for orange juice but she said, 'Shut up! I put you to bed and you're going to stay there. I'm not going to give you a damn thing.' I started crying, and she said, 'Shut up!'"]

On Friday Mom didn't go to physical therapy because of the P.E.O. meeting, and I didn't take time to help her walk at all that day. (I had a cold and was barely able to take her out for three hours to P.E.O.)
When I came to see her Saturday afternoon at 4 pm, she was sleepy, talking to me with closed eyes. I figured she would probably not be alert enough to walk, but we tried a test run from her chair to the bathroom.
She did fine, so I put her wheelchair around the corner and halfway down the hall, hoping to get her to walk further than she had ever walked since June 1.
She did great again and in fact walked past the wheelchair and into the dining room--maybe about 100 feet. I'll have to measure it.
I sang "Walking in a Winter Wonderland," again and again, to distract her from how difficult it was. She kind of sang along with me.
After dinner, I thought "Why not?" and pulled her up to stand at her walker.
She walked all the way back to her room and collapsed into her pink recliner.
I was singing all the way--"Winter Wonderland," "Frosty the Snowman."
The hall sure looked long as we left the living room and inched toward the laundry room.
"There must have been some magic in that old top hat we found...."
Either magic or a miracle.
She hasn't walked that far since arriving at Ocean View, October 1, 2004.

Reward! $200

Calling all unemployed, homeless, or other persons interested in earning a few bucks before Christmas!

You are invited to search Room 369 of Ocean View Assisted Living, Santa Irena, California, for a missing set of false teeth. This partial lower plate includes two molar teeth on each side of a pink plastic plate with a gold bracket on each side for securing it against the front ten teeth, which remain in the owner's mouth.

This lower plate has been missing since about 8:30 am, Thursday. Having ransacked the room, the family is becoming desperate to locate the teeth and avoid trips to the dentist to replace the plate.

Anyone with information or ideas is asked to call 1-800-MY-TEETH.

Note: Racquel, the weekend night caregiver, reports that Evelyn routinely takes her lower plate out at night and puts it under a pillow. Therefore, Racquel does not let her sleep with her false teeth in. The family will adopt this policy if and when the lower plate is located.

If you are not available to join in the search, your prayers would be much appreciated!

Carrying on with Courage

"Old age--it ain't for sissies!" quipped Mae West many years ago.
When I showed up with Mom at 519 Ninth Street for the P.E.O. meeting today, I was expecting a nice social club for old ladies, not a demonstration of courage against all odds.
I parked and pushed Mom's wheel chair up the driveway, then turned her around and entered the front door backwards, hoisting the chair up a four-inch step to a porch area, then up another small step into the house, then up six inches more into the dining room near a lovely table spread with Christmas goodies.
In the living room was a big tree beautifully decorated for the holidays, but I didn't meet Eileen, whose home it was, until later. She was resting in another room, then talking with a few of us. She had either a cold or some other ailment--perhaps just tired from the effort of decorating her house for the P.E.O. party. On a side table was a photo of her husband, recently deceased.
I placed Mom near Darlene, the only other person in a wheelchair. Darlene chatted cheerfully as she and Mom enjoyed refreshments and compared notes on the events that had cost them their mobility. For Darlene (about Mom's age) it was a broken thigh bone that had taken a long time to heal.
Dorothy, meanwhile, answered questions about how her husband was doing.
"He gets up for breakfast and for dinner, but otherwise he's in bed all day long," she said. "We can watch tv in the evenings, but if he sees a fire on the television, he gets anxious. He thinks we are in danger. I have to explain to him that we're okay."
"Oh, a touch of Alzheimer's," commented Darlene.
I now understood Dorothy's generosity toward Mom in inviting her to the meeting; she deals with dementia on a daily basis.
When it was time to move to another room for the entertainment and business meeting, Darlene carefully stood up and stepped down the six-inch step; then we moved her wheelchair down the step. Mom had to be bumped down the step in her wheelchair.
After the meeting, as people were talking and starting to leave, we heard a loud thunk that shook the floor a little.
Darlene had been negotiating the threshold and the edge of the front porch, but she had fallen. She now lay on her back on the porch, 180 pounds and immobile.
Everyone rushed to her aid.
"They'll take care of her," Mom said. "P.E.O.s take care of each other."
Darlene seemed to be okay, just shaken. After a few moments' rest, we lifted her up into her wheelchair with the help of a young man in the house.
Someone went to get ice for the back of her head, where there was a two-inch straight cut, vertical, bleeding a fair amount.
"You'll have to have stitches," I commented.
Then Mom went down the same steps, backwards in her wheelchair, ignominious but safe.
As we drove home, I reflected on my new respect for the P.E.O.s. They are battling death, dementia, and disability with great courage.
In their seventies and eighties, they gather as they have for forty or fifty years, affirming their sisterhood against all odds--not sissies but sisters.

The Case(s) of the Missing Teeth

Case 1

What: Mom's lower partial plate--two molar teeth each on the left and right on a pink plate with a gold bracket to attach them to her central teeth (still rooted in her jaw).

When discovered missing: Tuesday night, 7:30 pm, by Connie, the night caregiver

Mom's reaction: Laughter as we search. "This is so ridiculous! No, I don't know where they are." But isn't all the excitement fun!

Anne's reaction: $$$ How could they vanish during the three hours I took her out? Did she take them out and leave them on the plate at the buffet reception at UCLA? I wasn't watching her closely--I was talking with other people. What if we can't find them? How much will it cost to replace them? Can I face another encounter with the dentist after the embarrassing visit last week?

When found: Wednesday morning, 8 am, by Jona, the day caregiver, while emptying the small waste basket by Mom's recliner. They were on the floor between the waste basket and the chair.

Case 2

What: same item

When discovered missing: Thursday morning, 7:30 am, by Jona.

Mom's reaction: More excitement! "I don't where they are. I put them under my pillow for the tooth fairy."

Anne's reaction: "At least you have not left the room. They have to be here somewhere. Why did you take them out? If we can't find them, you will be back on a pureed diet, like Sue. You will be eating pureed food for the rest of your life."

Mom's secondary reaction: Dismay. Then "You probably put them somewhere."

Jona's reaction: Comforting Mom.

When found: ???

Old Moon in the New Moon's Arms

Tonight at 5 pm as I drove to visit Mom, I saw the new crescent moon in the sunset sky near Venus--a lovely sight, similar to a few days ago at 5 am when I saw the crescent waning moon halfway between Jupiter and Spica.
I found Mom in the dining room shortly after 5 pm and saw that she was feeling sorry for herself because I had come so late--not at 2 pm or 4 pm.
As the dinner hour dragged on, I commented to Bob, sitting next to Mom, "There's such a pretty sky tonight. We should go out on the patio and see the crescent moon, just a skinny slice, next to Venus." He enjoys going out on the patio sometimes, but I knew Mom never wanted to go out there.
"It's too cold out there," Mom commented, rejecting the idea as if I had proposed it to her.
She ate her soup, mixed fruit, and cottage cheese but refused the cheese blintz. When I tried to get her to eat it, she emphatically refused.
Pushing her wheelchair back to her room, I was careless and bumped the back of an armchair, smacking her arm against the chair.
She screeched in pain, and an Ocean View caregiver came running.
"Oh, I'm sorry, Mom" I began apologizing. "I wasn't looking where I was going."
Back in the room, Racquel, her private caregiver arrived, and I insisted that Mom do her daily exercise of walking fifteen feet to the bathroom and back.
She did fine with it but complained noisily as we pulled her up to walking position again after a rest: "In my own house, I get tortured."
I realized that her emotional energy had dropped because of the bumped arm, added to the fact that 8 am is a better time to do this daily walk. (Evening is more convenient for me.)
Within minutes Mom was at meltdown, the way my teenagers get when they are too tired.
"I don't want a shower--I already had one," she claimed, whimpering. But Racquel and I insisted that she had to have a shower and started undressing her.
"In my own house--I get tortured again," she said, now crying.
"It's just a shower--the warm water will feel good," I urged, but her desolation touched me.
"I just want to go to your house," she said.
"You're coming to my house tomorrow," I countered. "We'll have raisin toast. Tomorrow is Sunday, and we're going to church."
She continued crying. I told her goodnight and left her in the shower chair being soaped by her caregiver.
Driving out of the parking garage, I felt so guilty.
There she is, alone with caregivers for 23 hours, and the one hour I am there, I bump her arm, make her try to walk at the end of the day, and overrule her wish to skip the evening shower. Then I leave her with a caregiver.
Venus caught my eye, and I wondered if the moon had set beneath the ocean yet. I drove to the palisades above the beach and parked.
The crescent moon, now a brilliant orange, was still visible in the dark sky just above the black ocean. I watched it sink slowly into the ocean, its orange tip dipping into the black, then shrinking to a comet pointed into the ocean, then vanishing.
"The old moon in the new moon's arms," they call this sight.
My old mother in my arms, both of us sinking into the darkness.

"You're Ugly"

When I take my mother anywhere, I know a few embarrassing events will happen.
Today it was my sister's turn. Emily took Mom to the physical therapist, where she is learning how to walk again after time in the hospital and convalescence.
Mom was precariously balanced at her walker, holding onto the side grips in a crouched over position, looking at the ground.
"Stand up straight, Evelyn," said Michael, the therapist, facing her. "Nose over toes."
"I know, I'm trying," she answered.
"Look at me," he said, still trying to get her to turn her head up.
"Why should I?" she shot back. "You're ugly."
He laughed and continued patiently working with Mom.
Emily laughed--one more dementia moment, an instance when Mom said or did something she never would have done a few years ago.
Yesterday I took Mom to the dentist for her regular tooth cleaning.
She and I usually sing a chorus of "We're off to see the wizard, the wonderful wizard of Oz" as we set out on these little adventures. I'm thinking, "Anything could happen. Who knows what it will be today?"
We arrived and managed to get her transferred from the wheelchair to the dentist's chair.
"Has anything changed in her health status since her last visit?" the dental technician asked.
I started reciting the changes in the last three months: "She has a pacemaker now. She started Coumadin in September because they found a pulmonary embolism."
"Oh!" The technician seemed amazed at these events. "We'll have to call to find out whether we can clean her teeth. Do you have the phone number of the doctor who put in the pacemaker? "
"But she only has six teeth," I said. "Why would it matter?"
"When I clean her teeth, her gums will bleed not only into her mouth but internally, and it could cause a small blood clot that could cause problems."
"Okay, I see," I said, and for the next twenty minutes I located phone numbers for her surgeon, the pacemaker clinic, and her internist while the technician tried to reach any one of them. Finally a partner of her internist gave the green light for the tooth cleaning.
I retreated to the lobby for a few moments of peace and quiet while the cleaning went on, but then I felt guilty and went back to monitor the situation.
Mom was doing fine and the cleaning was almost over.
Then Mom announced, "I'm peeing in my pants."
"That's okay," I said. "You're wearing Depends. We can change them later."
I didn't say, "Please don't announce these events to the dental hygienist! She doesn't need to know."
Another moment like this occurred two days earlier when we went to the Pacemaker Clinic for a check-up.
The doctor made the mistake of asking her, "How are you doing?"
Wrong. With a dementia patient, you don't want to offer that broad an opening. You want to say, "I'm here to check on your pacemaker. How is your heart doing? Do you have enough energy?"
Mom saw his question as an opportunity to complain about the problem on her mind that day:
"I'm okay, but I don't like to be spread-eagled at night when they clean me--"
She had been telling me about this problem on the drive from her residence to the clinic. I cut her off: "Mom, he's here to check on your pacemaker. He can't do anything about your care at night."
I don't know what I can do about the changing of her Depends at night by the caregivers. Apparently it feels to her like a rape, having her perineum and vulva wiped at night when her Depends are changed.
(The caregiver writes each event down in her night log, noting "Perennial care." I read the log and think, "Yes, perineal and perennial.")
All in all, there's plenty of room for embarrassment. We just need to be prepared for it and take it in stride. But somehow each time there's that moment of surprise and wanting to vanish.