Sunday, December 24, 2006

Christmas Eve with Ups & Downs















The challenge this Christmas was how to give Mom a happy experience even though on December 25 we did not see a way to include her.
My solution was to take her to church and to our home for eight hours on Dec. 24 and then again for six hours on Dec. 26--and to hope that she would not realize she was being left out of everything on Dec. 25.

However, we didn't make it to church in time for the 10 am service, and we had no back up service at 11 am because it was Christmas Eve. We had to wait until the 5 pm service or not attend church.

Instead of going to church, I reluctantly drove to a CVS store. I had planned everything so I would not have to shop on Dec. 24, but my hair dryer had stopped working the night before, borrowed by visiting daughters, and we couldn't get through Christmas without one.

In the parking lot before I had gotten out of the car, a solicitor stuck her face in my car window and asked me to buy a bumper sticker in red, white & blue--a flag-style peace sign.

I angrily refused and decided that I had to close the car windows all the way to the top before doing my quick errand. I usually leave Mom in the car for an errand like this, with the windows open 3-4 inches, because getting her into the wheelchair and pushing her around the store slows me down.

But with this woman working the parking lot, Mom wasn't safe with the windows open. She might be accosted by the lady and be confused, perhaps give her the rings off her fingers.

When I came back in 7 minutes, Mom said, "This car is so stuffy!" She had been confined in the hot sun with no air--all because of this panhandler. I went back to complain to the store manager and also yelled at the woman herself: "I can't leave my car windows open for my mother because you are bothering people in this parking lot!"

That encounter soured the day--so much for Christmas spirit.

Finally Mom and I arrived at home, and I served her and me a nice (leftover) dinner of turkey, stuffing, mashed potatoes, green beans, and fruit salad, hoping she wouldn't notice that only she and I were eating it. John was at church; Roz and Marie appeared in pajamas as we ate.

Then I gave Mom all her presents and started helping her to open them, hoping she wouldn't notice that she was the only one opening them.

She opened a faut fur vest and a hat from me, and I handed her a soft present from Emily for her to try to open while I searched the pile of presents under the tree for any others with her name.

As I looked, I didn't realize that she had succeeded in opening the gift from Emily until she said, "I guess these are gloves."

I turned my attention to her and realized that she had received a long soft hand-knit scarf from Emily and had wound it around her hands until it did look like gloves.

Around one wrist she had doubled a green beaded necklace from Emily, so it looked like a bracelet, all the while sucking on a candy cane.

Then I took a few more photos of Mom with Roz and Marie and with her Christmas gifts.


Now it was almost time for the 5 pm Christmas Eve service, but she was tired. Normally at this time of day she would be ready for a bath and a long nap in her recliner until bedtime, but I wanted to take her to church so she would have the full Christmas experience.


As we drove to church, she said, "I don't want to go. I think God will forgive me for not going."

"Let's just go for a little while," I said. God might forgive her, but her daughter wouldn't change plans.

Getting out of the car and into the wheelchair, she complained of pain somewhere in her neck or shoulder. Once in the service, she put her hand over her eyes in a gesture of refusal.

A kind man sitting next to her was bored by the children's Christmas pageant and took great interest in Mom and me. After about ten minutes, he commented, "I think she's crying."

I was irritated by having to reassure him as well as cajole Mom into appreciating the music and pageantry. It took a half hour before I admitted to myself that bringing her to this service had been a big mistake. It was a noisy, humorous pageant without much music. After all, the 5 pm service was for children, the 7 pm for youth, and the 9 pm and 11 pm for others. There was no service for elderly with dementia.

Finally we left just before the service ended, but the fringe of her colorful shawl got caught in the wheels of her wheelchair as we exited. The kind man enjoyed trying to help us get the shawl extricated, but I finally gave it a yank, losing some of the fringe. Again, I was irritated and far from the Christmas spirit.

Next we drove to a grocery store to buy a cake and a plate of shrimp for the assisted living staff that had to work Christmas Eve; then we returned to her residence.
I had given her weekend private caregiver the night off and planned to do her bedtime routine this night (also on Dec. 25 and 26 to give the weekday private two days off).

I changed Mom into her nightgown, skipping the shower, but she complained of pain in her neck area. I noticed that the large bump at the base of her sternum, near the left clavicle, had appeared again. Why was it there? Had all the transferring in and out of the car and wheelchair reinjured her? Or did she have a hairline fracture that the x-rays hadn't revealed?

Then I tried to escape, but she employed every delaying tactic she could think of. "You aren't going to go and leave me all alone, are you? Will you stay with me?"

"No, I have to go home," I said, but she seemed to know by instinct that she was being abandoned. The previous year I had slept in her room on Christmas Eve, and the year before that she had slept in my home.

"Will you put me to bed before you go?"

"It's only 8:30," I said. "I'll leave you in your chair, and after you have your 9 pm medications, they will put you to bed."

But she insisted on going to bed immediately, so I got the meds, gave them, and put her in bed, carefully arranging all the covers and pillows, turning on the Posey Alarm, and discovering that the mechanism to elevate the head of the bed wouldn't work. By that time it was 9 pm.

As I left, the lead caregiver, Marnie, gave me a Christmas gift, which I opened. It was a green candle.

"Because you are our light," she said.

"Oh, thank you," I answered. "What a beautiful gift!" I was feeling tearful because someone appreciated me but also feeling unworthy. After all, Marnie is the patient one, putting in 50-hr weeks to care for all these elderly people with dementia, whereas I had yelled at the solicitor in the parking lot and resented the good Samaritan at the Christmas Eve service.

Furthermore, I should be the one giving gifts to the staff, not receiving them. (The residence, however, has a rule against giving gifts and tips to the caregivers.)

At 9:20 pm I finally arrived back home, where I found John and kids sitting around the living room near the Christmas tree, a bit resentful that I had been away since 4:30 pm.

"Why don't you come in the house and talk with us?" John asked.

I lit my candle.






Saturday, December 23, 2006

Emily's Turn

Amazing--I didn't visit Mom today.
My sister Emily drove up from Mission Viejo, bringing Christmas presents.
She said Mom was having a sleepy day today--they couldn't even rouse her to eat lunch or take her lunchtime medications. Must have been that wild wheelchair ride and the CT scan.
The physical therapist was there, so Emily and she had a consultation. Emily is very particular about Mom's PT because she has a Master's degree in physical therapy.
The good news is that she approves of this PT and her work.

Friday, December 22, 2006

And Finally, a CT Scan

Today I took Mom for the CT scan of her shoulder. She's complaining less of pain, so probably she's okay and therapy on the shoulder can begin soon. (Dr. Rosen didn't want it to become "frozen.")
This was the fourth day this week that I arrived late at Mom's residence to take her to an appointment.
Each time I bundle her up, put her feet on the leg rests of her wheelchair, and jog the block and a half between her building and the medical building, bumping over the cracks in the sidewalk and ups & downs of the curbs, crossing 15th Street, running along Arizona St., then crossing both Arizona and 16th Street, dodging cars that are supposed to honor stop signs.
On Monday she screamed all the way in a high pitched voice--"Eeeeeee--I'm going to fall--the cars are going to hit us" but today she only screamed a little.
Today there was a strong cold wind blowing from the east, a Santa Ana, but I had Mom's face completely covered by a red knit cap and a colorful scarf knitted for her by a friend of Marie's in Argentina. Over her lap and legs I had folded two small blankets.
Some people get exercise running with their infant in a jogging-type stroller.
I jog with my mother in a wheelchair.

Thursday, December 21, 2006

More X-Rays

Dr. Mariano, a colleague of Dr. Rosen who takes her patients if they have to be seen on Thursday, felt that Mom could have a hairline clavicular fracture, so off we went for another x-ray, this time not of her shoulder but of her neck.
He also ordered ice three times per day on her sore area.
By this time we are great friends with the entire staff of the lab where x-rays, CT scans, blood draws, and other such tests take place.
The x-ray technician said he didn't see a break, and sure enough, we got a phone call from the doctor later confirming the good news.
Or was it bad news? I had spent several hours checking out this lump that turned out to be nothing.
I drove some items to the rehab place for my daughter Ellen and then drove to the airport to pick up my mother-in-law. Not looking good for getting any of my own Christmas cards in the mail.

Wednesday, December 20, 2006

What Is This Lump About?

I stopped by to visit Mom only briefly in the morning because I had to do two hours of Christmas shopping with my daughters, who had just returned from college, before driving one of them to a rehab center and checking her in to be treated for an eating disorder.
But Mom's caregivers were very concerned about her when I arrived. They pointed out a new oddity: a rectangular lump on her left clavicle, about 2 inches long, 3 inches wide, and 1 inch raised. It was extremely tender to the touch.
Had it been there since Saturday but not been noticed? Or had it just appeared?
I was tempted to ignore it--maybe it would be gone tomorrow.
On the other hand, there it was, and Mom screamed when anyone touched it. Was her collar bone broken?
I left Mom to her caregivers but called the office of Mom's doctor to leave a message and ask whether I should bring her in again, even though she had just been seen Monday.
Meanwhile, I dropped my daughters off at the mall and parked the car.
"We'll be in Hard Tail," they told me, but I couldn't find this store.
I called Marie to ask where the store was, but she didn't answer. Seconds later my cell phone rang, however, so I flipped it open and said, without checking to see whom the call was from, "Just tell me where Hard Tail is."
"Hello, this is Dr. Rosen," the doctor said. "Yes, I think you need to bring Evelyn in. Please make an appointment for tomorrow."

Tuesday, December 19, 2006

Negotiating with the PT

On Tuesday I happened to encounter Mom's physical therapist and mentioned that she would be getting therapy for her shoulder with the UCLA Home Health program.
But the PT was alarmed--if Home Health visited Mom, her own right to make visits would be cancelled.
After another flurry of phone calls to Home Health and the doctor, I decided to cancel Home Health and stick with this PT for both walking and for the shoulder.
Meanwhile, the PT had had Mom walking with her walker, despite the shoulder pain.
The good news today was that I mailed 80 Christmas cards from Mom to her family, friends, and former colleagues--so now I am hoping to start my own Christmas cards.

Monday, December 18, 2006

Doctor Visit

Mom happened to have an appointment with her doctor, scheduled a month earlier, so I took her in at 1:30 pm and explained what had happened over the weekend.
Dr. Rosen ordered an MRI of the shoulder (to rule out a rotator cuff tear) and a blood test of her Prothrombin time. She also ordered Tylenol every 6 hours for shoulder pain.
But when I tried to schedule the MRI, the staff asked if she had a Pacemaker, and I answered yes.
The result was a flurry of phone calls to the doctor and back to me, resulting in an order for a CT scan instead. The soonest we could get was Friday, so Mom's physical therapy for the shoulder had to be delayed.

Sunday, December 17, 2006

Discharge from the Hospital

Knowing Mom was in good hands, I didn't go to the hospital until noon, when a doctor called to report on her condition. She had decided to discharge her back to her residence, so by 3:30 pm I was pushing her wheelchair back to Ocean View with Mom's private caregiver for the 2-10 p shift, Racquel. By 6 pm I was back home, but I'd lost two days of Christmas preparation time.

Saturday, December 16, 2006

Fire!

At 1 am, a caregiver on the night shift went to the break room to fix her lunch. She put her food in the microwave, quickly entered 2.0 minutes, and left the room for a few minutes.
Accidentally, however, she had entered 20 minutes.
Soon her food was on fire and smoke filled the room.
Suddenly the fire alarm system was triggered, and a loudspeaker was heard in every bedroom on all floors: "Emergency--proceed to the nearest stairwell and exit the building."
This is a fine message for residents in assisted living who are fully sensible and mobile. They can proceed to the nearest stairwell, and those who need wheelchairs can be assisted by caregivers on the night staff if all goes well.
But what about the 28 residents on the dementia floor (a.k.a "the Reminiscence Neighborhood" or "the Memory Care floor"), and those among them who use wheelchairs?
There are only two caregivers on the 10 pm to 6 am shift, and there's no way they can run around and take care of all 28 agitated people.
But they tried. They were gathering those who could walk into one room, determining if this alarm was a real fire requiring evacuation, and checking on those who could not walk.
Almost immediately they came upon Ralph, a tall handsome gentleman with vascular dementia who had been the first Marlboro man, riding on a white horse in front of dramatic Arizona mesas in television ads during the 1950s.
Ralph had leapt out of bed and tried to "proceed to the nearest exit" but instead had fallen and hit his head against the sharp corner of some furniture, causing a severe gash.
Paramedics, already in the lobby of the building because of the fire, ran up and cared for Ralph; after arriving in the ER, he was hospitalized.
The staff didn't reach my mother until 1:15 am, but she was fine, lying awake in her bed still listening to the command to go to the nearest stairwell. (The loudspeaker continued to bellow this message for twenty minutes, even though the staff had figured out fairly quickly that this fire had been easily contained and did not require evacuation.)
Tracy Stone reassured Mom and continued on to check on other residents. Then she and her coworker began the job of putting the gathered residents back to bed, but first she decided to make a second round of checking on all those without mobility, still in their beds.
At 1:30 am she entered Mom's room and found her fallen on the floor, crying for help. Apparently Mom had decided to obey the loudspeaker and try to get to the nearest stairwell.
She had scooted to the edge of her bed, pulled herself to a sitting position using the bar along the top half of the bed, and then slid to the floor, sitting with her back against the foot of the bed.
Apparently, though, she had held onto that bar while sliding to the floor and pulled her shoulder muscles and ligaments.
Tracy checked Mom's vitals, determined that she was okay and not seriously injured, and then called her co-worker for assistance in putting Mom back to bed.
When things quieted down, she filed a report on the incident in the log book:
"At 2 am resident was found on the floor. She said she was trying to get out of bed and fell. She said she is ok but feel a bit cold. We put her back to bed & covered her. Temp 97, BP 88/66, Pulse 103."
At 11 am the lead caregiver on the 6 am to 2 pm shift called me on my cellphone, but I didn't answer because I was in a meeting. At 1:30 pm when the meeting had been over for an hour, I remembered to check my messages and learned that Mom had fallen. I called the residence and heard the story, but being reassured that Mom was fine, did not go check on her until 3:30 pm.
As soon as I entered the room, I could see all was not well. Mom was shaking uncontrollably, especially her right hand, and she was agitated.
With difficulty I got her into the wheelchair and onto the toilet, where she usually tears 12-24 neat squares of toilet paper while hoping her bowels will move or her urine will flow.
But today she could not tear properly. Her hands were shaking so much that the toilet paper turned into a jagged mess. A caregiver came to help me and provided more details of the previous night.
When we tried to transfer her to her wheelchair, she screamed with pain.
I wondered if she had broken a bone in her fall and realized that a trip to the Emergency Room was in order. She needed at least an x-ray, possibly other care.
At 4:15 pm we were out the door, wheeling to the hospital and ER one block away.
Six hours later, after an exam and an x-ray and a CT scan of her brain, she was admitted to the hospital for observation, getting a medication for pain by IV.
Later I heard that the director of Ocean View Assisted Living had removed the microwave oven from the break room and had informed staff that they will no longer have access to a microwave.

Friday, November 24, 2006

Dead or Alive?

I entered my mother's room at about 4 pm for my daily visit.
Instead of sitting in her recliner as usual, she was lying on her side in her bed, under a blanket.
Odd, I thought. I've never found her before in her bed in the daytime.
"Mom, hi, I came to see you," I said, but she didn't respond.
That kind of nonresponse happens about once a week, when she is really out of it. Usually she opens her eyes when I arrive or at least says something without opening her eyes.
But this time she was absolutely silent and immobile.
I touched her cheek, and her face was cool. I started to panic.
Is she dead or alive? I couldn't see any movement of her chest with breathing.
I reached for her hand and took her pulse: thank goodness, there was a staccato bit of pulse, though not regular.
I thought about calling 911 but decided to ask one of the staff members to take her vitals first.
I rushed to find someone.
"Could you just take her vitals? She's nonresponsive, and I don't know if she's okay."
They did so, and everything was fine. Her pulse was 60 beats per minute; her blood pressure 145 over 84. Her temperature was 98.8.
But she was still immobile, lying in the bed in a fetal position, completely unresponsive.
"She must be completely exhausted from being out for six hours for Thanksgiving," I said. "Did she sit up for breakfast or lunch?"
They didn't know how she had been in the morning; she had sat at lunch but eaten very little. She hadn't had her 4 pm meds because the medication nurse hadn't been able to wake her enough to swallow the pills with applesauce.
"We thought we would just let her rest and not take her to dinner," they said.
"No, she has to get up," I said.
I pushed and pulled her up, into her wheelchair, and she mumbled a few protests. Good! At least she was communicating.
I got her to the toilet and wheeled her into the dining room, to her place at the table. We managed to get her to swallow two of her pills, but decided not to do the calcium or the evening Tylenols.
She wouldn't eat anything, but finally I got some French fries out of her refrigerator, left over from two days ago, and microwaved them. She ate ten or twelve of them, mechanically, with her eyes closed. She ate one bite of pumpkin pie.
I'd been planning to give her a shower, but there was no way. I just changed her to her nightgown and put her into her chair, asking the staff to put her to bed in an hour or so.
She was pretty much a vegetable.
This is how Lewy Body patients vary from day to day.
One day she can be alert and talkative, the next frightening close to no brain function at all.
It was a sleepy day like none I have ever seen before. Apparently her brain was exhausted, needing deep rest to recharge itself.

Thursday, November 23, 2006

Thanksgiving

A big outing: I picked Mom up at about noon and drove her to my house, where John took over driving. Marie and I sat in the middle seats of the van, holding pies in our laps, and Mom's wheelchair was in the back.
Over the highway and past the surf to my sister-in-law's house we went, in Malibu.
Mom enjoyed sitting in the front seat and talking to John. She launched into some of her favorite stories, about how her huband is in prison--heaven--and left her here. About how she rescued a bit of pulp and it grew up into that little girl, who is now in college to be doctor, at the University of Colorado.
Upon arriving, we wheeled Mom in, and she enjoyed seeing Lee and Leo's four-year-old twins dance around. They are small and wiry, climbing on the top of the tv cabinet, on top of side tables in the living room, none of which had anything sitting on top. The house is completely childproofed.
At one point one of the twins was even standing in a window sill with her back toward the outside. I didn't worry much about it--it was not my house, not my kids.
Mom didn't talk much--I think the kaleidoscope of movement and faces was too much for her.
When it came time for dinner, we fixed her a plate full of turkey, stuffing, mashed potatoes, vegetables, and she methodically ate all of it. She ate some pumpkin pie too.
The hardest part was getting Mom in and out of the bathroom once--a small room, no bar for her to hold onto while I removed her nylons and Depends. I turned her and told her to hang onto her wheelchair arms while I did that. It worked, barely.
After more conversation and a lovely sunset on the Pacific, with a crescent moon, we drove back. In the front seat again, she chatted excitedly with John as we drove along.
After dropping off my family at home, I took her back to her residence.
Because I had given her private caregiver, Connie Reysag, two days off, I had to spend an hour or so toileting her, brushing her teeth, putting on her nightgown, and putting her in her recliner to rest until bedtime.
She was tired, but she had had a wonderful Thanksgiving.

Wednesday, November 22, 2006

License To Shoot

Sometimes it doesn't pay to be sane.

An Associate Press report this morning:

Woman, 92, Slain in Shootout With Police
The niece of a 92-year-old woman shot to death by police said her aunt likely had reason to shoot three narcotics investigators as they stormed her house. http://www.msnbc.msn.com/id/15844162/from/ET/

The police "knocked and announced" and forced open the door at 7 pm.
Kathryn Johnston, living alone in her home at age 92, grabbed her gun.
Apparently she was a pretty good shot, hitting each of the three invading officers.
They executed her in self-defense.
All three officers survived.
"My aunt was in good health. I'm sure she panicked when they kicked that door down," said Sarah Dozier, her niece. "There was no reason they had to go in there and shoot her down like a dog."
They had a warrant to look for drugs.
No one else was living in the home. There were no drugs, Sarah reports.
The victim was an African-American living in Atlanta.
Her fear of police and desire to defend herself was actually pretty sane.
All she lacked was impulse control and an ability to assess the situation and determine that self-defense was not in her best interest.
It's the frontal temporal lobe that does impulse control and that kind of reflection.
Many of us don't have strong impulse control and critical thinking at ages 20, 40, or 60--at least not enough to handle a stressful crisis like this one. A 92-year-old brain would be a little weaker in these departments, even if far from a diagnosis of dementia.
How sad that this elderly woman with the ability to live alone and think pretty clearly should lose her life because of the mistaken and panicky actions of police officers.
Kathryn Johnston would have been better off with dementia, living on the secure floor of a home for the elderly.
And by the way, does your older parent still have a gun in his/her home?
At what age should we take away the license to shoot?

Tuesday, November 21, 2006

Duh... It's Dementia

Today's Los Angeles Times reports on the sentencing in the 2003 Farmers Market tragedy:

http://www.latimes.com/news/la-me-weller21nov21,1,2993846.story

No prison for Weller, no closure for others

By John Spano and Martha Groves, Times Staff Writers
November 21, 2006

For 25 minutes Monday, a judge attacked George Russell Weller's "enormous indifference" and "unbelievable callousness" in running down and killing 10 pedestrians in a Santa Monica open-air market. The 89-year-old deserved prison for his crime, the judge said.
But in the end, Los Angeles County Superior Court Judge Michael Johnson placed Weller on probation, finding that his age and poor health undercut any value to imprisonment.
"Mr. Weller deserves to go to prison, but because of and only because of his rapidly declining health, I will place him on probation," Johnson said in a withering critique of Weller's behavior during and after the 2003 crash....
Johnson said Weller "has never once expressed in court any remorse for his actions. I will never understand his stubborn and bullheaded refusal to accept responsibility to put this matter to rest for everyone, including himself."...

The defense did not try to argue senility or other mental deterioration as a factor. In his remarks, Johnson said older drivers had the same responsibility to control their vehicles as other motorists....

The judge apparently thinks older drivers also have the same responsibility to show up in court and apologize for their actions. You and I would do that.
But "stubborn and bullheaded refusal to accept responsibility" is just about a text-book definition of dementia. Whatever happens is someone else's fault, as I discussed in an earlier blog entry comparing my mother's words to Weller's after the accident.
Why did the defense refuse to acknowledge that senile dementia played a role in Weller's behavior before, during, and after the accident?
Were they trying to protect their client? The "sane but accidental" defense failed.
Perhaps the defense just feared raising the hackles of the AARP and the growing elderly population.
I've had friends in their seventies tell me, "I oppose mandatory behind-the-wheel tests at age 75."
Yes, it's inconvenient. Some of us may fail and then find it difficult to get out and buy our groceries. But I'm willing to give up convenience to save lives.
Others say there are plenty of dangerous drivers under 75. Okay, let's all take driving tests every year. That would really clean up the highways.
The LA Times article notes the judge's recognition of Weller's current medical condition, a doctor's statement that "he cannot walk, has lost feeling in his hands and feet and lacks the ability to fully understand."
If today Weller cannot think clearly enough to listen to his verdict or sentencing, it's not hard to trace the dots back to 2003.
He had some form of senile dementia at the time of the accident. His reasoning was impaired, and he also had poor impulse control. After crunching the car in front of him while steering out of his parking place at the post office, he was upset. He floored it, and twenty seconds later ten people were dead or dying. He stumbled out of his car and blamed them for being in his way.
We need to stop trying to pretend we don't understand.
Let's use the d-word: dementia.
It's hard for seniors and their families to recognize and accept signs of dementia in its early stages, but it's critical to learn and act on this subject.

Sunday, November 19, 2006

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.

Thursday, November 16, 2006

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.

Tuesday, November 14, 2006

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.

Monday, November 13, 2006

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.

Tuesday, October 31, 2006

Halloween Witches

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

Sunday, October 29, 2006

The Bad Man's Gone

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

Friday, October 20, 2006

Weller's Guilty--and So Are We

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

Above and Beyond for P.E.O.

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

Thursday, October 19, 2006

Under Cover of Darkness

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

Dancing Again

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

Wednesday, October 18, 2006

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.

Tuesday, October 17, 2006

The Buck Stops Here

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

Monday, October 16, 2006

From Heaven to Hell

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

Goodbye to Rosemond

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

My Last Day

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

Saturday, October 14, 2006

Never Long Enough

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

Friday, October 13, 2006

Don't Call Them Diapers

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

Thursday, October 12, 2006

Let's Use the D Word: Dementia

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

Monday, October 02, 2006

Ice Cream Cone

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

Wednesday, September 06, 2006

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.

Tuesday, September 05, 2006

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.

Wednesday, August 30, 2006

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.

~ ~ ~ ~ ~ ~ ~ ~ ~

Monday, August 28, 2006

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.

Sunday, August 13, 2006

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.

Saturday, August 12, 2006

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.