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


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.

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:,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.,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.