The End of the World

"Going to a nursing home is not the end of the world, "I kept saying to myself.
"It's okay to move Mom to a skilled nursing facility. She needs more care than she can get in assisted living. The time has come."
But actually, for most people, a SNF is the end of the world.
It's the place where they leave this world and pass to another.
I went to visit Mom in the hospital at 3 pm today and found a nurse at Mom's bedside telling her, "You're being discharged today. We've ordered an ambulance to take you."
"Shhhh!" I warned the nurse. "Don't let her hear this."
I tried to calm Mom down, but she was extremely agitated, her wide-open eyes rolling from left to right, up and down in terror.
"There's been a murder!" she said, looking around the room expecting to see the perpetrator. "They murdered someone!"
I realized her roommate had her television on to news of the Virginia Tech shootings a week earlier.
"It's not here," I tried to explain. "It's far far away."
"Yes, it's here. They tried to murder her," Mom continued frantically.
Meanwhile 5-6 doctors were on the other side of the curtain, trying to explain to Mom's roommate (who had been waiting for surgery 4-5 days) why she hadn't been taken in today to remove the cancer in her colon.
"Your heart rate and blood pressure aren't good today," they were saying. "We can't send you to surgery."
In the noise and confusion it was impossible to calm Mom down.
I wished someone would hand out some Xanax tablets for one and all
Instead I took the nurse out and asked her, "Are you really discharging my mother today? When were you going to tell me? My cell phone has been with me and turned on, but no one notified me."
"I thought someone had called you," she said. "We called Country Villa Mar Vista, and they said it was fine to send her over. You can talk to the discharge planner about it."
"Okay, that's fine," I said. "That's good if you discharge her, but she's not going in an ambulance. That would only upset her further. I will drive her to Country Villa."
Next: packing up all her stuff, dressing her, getting her and stuff in the car, driving to the SNF.
Along the way we stopped at Carl's Jr. and I bought her French fries, a hamburger, and a strawberry milkshake.
She calmed down, but I felt like Arnold Benedict.
If Mom had more savvy, she would know that a sumptuous fast-food meal was a way of buying her off, preparing her for bad news.
Country Villa Mar Vista.
We arrived. I wheeled her in, carried her stuff in.
Within a couple hours she was in her nightgown in the new bed, new room, new residence.
Very confused.
I drove home feeling the worst was over.
I had done the right thing.

Woman Without a Country

"I'm a woman without a country," Mom said last night at 10:30 pm. She had been in the ER from noon to 5 pm, then arrived in a hospital room, but she wasn't sure where she was.
Someplace unfamiliar. Almost a different country.
"They've closed up my room and locked it," she continued. "They can't sell my room! Don't let them sell my room!"
Her eyes searched her surroundings, full of fear, not seeing anything familiar.
Her assessment was uncanny in its accuracy. In fact, I had given notice in her current residence that she would be leaving after her hospitalization, moving to a skilled nursing facility. I had sold her room.
But we could cancel our plans to move her. We could keep her in assisted living, memory care.
The debate continues, the lists of pros and cons.
Today Emily commented, "The chair is really her home."
Mom lives in her big recliner with the push button that electrically sits her up or reclines her. We can take the recliner, television, desk, and other furniture and framed pictures to her next room.
I visited Country Villa again to gather information that will help in the decision. See pros and cons below.
One issue is whether to continue to subject her to continuous medical procedures. She endured two catheterizations yesterday, 6-7 hours apart, as well as an ultrasound of her kidneys, a blood draw, and the setting up of an IV. There's a lot to be said for just returning her to assisted living and putting her on hospice--no further medical interventions except meds.
The decision is ours, not Mom's. She's can't think clearly enough to really decide though she makes it clear that she wants "her room." We could either leave her in her current residence or recreate her room at Country Villa (a process we have done several times before over the last six years).
Central issue: Do we place her among others at her level, or keep her in a higher end place where she is closer to the bottom of the group?

Here's my list of the pros and cons.

Factors favoring Country Villa

Room 16 is great--roomy and pink decorated, nice window looking out on grass, flowers.
Would hold all her current furniture.

Room is right next to the nurses' station--attention.

Hustle and bustle of the place may interest Mom--59 residents (max = 68).

Nice neighborhood around the place to push her in wheelchair.

All residents on ground floor, access to patio and grass, flowers, sky. Safe in case of fire or earthquake.

Small round dining tables, eating in groups of four with consistent group.

IVs allowed. All catheters, blood draws, chest x-rays on site. One full-time PT on site.

May not need private caregivers after moving to SNF. (But we may cancel them even if she stays in her current residence, to conserve her dwindling financial resources.)


Factors against Country Villa

Her bathroom is too small.

No convenient bar for her to hold onto while her Depends are being removed.
(The bar that is there is going to be hard for her to reach.)

All 60 residents share two shower rooms. Most get 2 showers per week, bed sponge baths on other days. (Flexibility of up to 4 or so showers per week if needed.)

Many residents are in wheelchairs, out-of-it looking. Sitting in the crowded room full of wheelchairs would be depressing for Mom.

More people, density than at Sunrise (28 people on 3rd floor Sunrise in comparable amount of space to main floor of Country Villa).

Dining area not as nice... but looks out on patio and grass.

Much smaller closet--a portable wardrobe, not walk-in.

Food probably not as good.

What would you do? Eventually we will all be making decisions like these, either for others or for ourselves.

Day of Decisions

Mom has already figured out what's up.

She's saying, "My room is all closed up and locked. Don't let them sell it. I just want to get back to my room."

So I don't know if I can stick to my resolve, agreed upon with Emily and Jim this morning, to move her from Ocean View Assisted Living to a skilled nursing facility (SNF) after the hospitalization that began today.

But anyway, here's a summary of the day.

Dr. Sonja Rosen's news this morning:
1) Mom's kidneys are back in the normal range. 1.3 (not 1.5 as they were Monday)
2) But "she has a really big bladder infection."
Bacteria = Providentia Stuartii
3) Her options
a. Intramuscular shots, one per day, 7 days (painful)
b. IV with antibiotic specific to this bacteria 20 min. per day, 7 days
(no medication by mouth is available for this bacteria)
Note: Her assisted living is not licensed for IVs, will not allow them. So IV has to be done in hospital.
Emily spent the day taking her to ER to get her admitted to hospital. Mom got to her room about 5 pm.

On Monday we discussed another option at this point: hospice.
She's tired, "has humored us" as Emily puts it by putting up with the "Reminiscence Neighborhood" and with meds/blood draws/catheters/x-rays.
But she often says, "I want to die, to go to heaven," and lately has more often been refusing meals and meds.
Her refusal could be just her serious bladder infection which has been continuing at least since April 5, perhaps longer.
Or it could be that she is really ready to leave.

Dr. Rosen says she has enough criteria to qualify for hospice.
1) Weight loss (she was 106 with heavy shoes on Monday).
2) Behavioral changes (or is this just the bladder infection?)
3) Progression of her disease, Lewy Body Dementia.
She says you place a patient on hospice to focus on comfort, not cure, and that you generally expect death within six months. But if she lives longer, you can extend it.

Dr. Rosen is available for a family phone consultation if we want to schedule one.

At any rate, a private room is available at Country Villa, a skilled nursing facility (SNF) Emily and I have visited. It's $233 per day including medical services. (Her current residence is $207 per day but fewer medical services.) A shared room (2 beds) in the SNF is $192 per day.

In addition to her current $207 per day, we are paying $112 per day for a private caregiver for 8 hrs. I would discontinue this at Country Villa after maybe a month or two of transition time. Even if she stayed in her current residence, we probably would give up private caregivers within 6 mo. or so to conserve her funds. She has about $100,000 at this point, enough to last one year at her current level of care/expense.

I think the reality is that she is declining and needing more nursing care than her current residence can provide (catheters, blood draws, chest x-rays, physical therapy, etc.). It does a great job of providing comfortable, cheery surroundings; good food; kind people.

But she is getting less interested in the food, confuses the people, seems unaware of the surroundings (until they are withdrawn--now she just wants her room back).

Her assisted living residence would like to keep her while she is in hospice if/when we would choose hospice. Four other people on her floor are on hospice, have been for several months.

Today after consulting with Emily and Jim, I told Country Villa that we definitely want that single room, and I gave Ocean View Assisted Living the required 30-days notice that she is leaving. They said, "You can change your mind during that 30 days." We could change our mind if we decide that her staying in her familiar surroundings is the highest priority. I reached Bill tonight by phone and he understood the reasons we are inclined to choose Country Villa (but also values her comfort level where she is).

Mom was given an ultrasound of the kidneys at 10:30 pm tonight and then at 11 pm was given another catheterization so that a more detailed urinalysis could be done. I hope she didn't get a catheterization this afternoon in the ER. She had one on Wednesday, 4/18, (yesterday) and on April 5.

The route of hospital/SNF means bothering her a lot for medical tests and treatment.
The route of assisted-living/hospice is less invasive, more comfort-oriented.
Hospice could also be done at the SNF if medical intervention becomes more trouble to her than it's worth.
The SNF should be less work for me after she gets settled... doctor will visit her there, tests will be done there.
But moving is a bit of work, and if she's not happy there, she could become more time-consuming there.

She is very dependent on having a person with her, especially a familiar face. She's very fearful, filled with hallucinations and delusions when alone. Tonight I cancelled having her turned over by two men every 1 1/2 hours because her fear factor of two men in the middle of the night is so high. She was telling me about the "two bad men" when I arrived at 9:30 pm.

Sorry for the plain, confused style of this blog entry--it's copied from an email without any effort to make it interesting or readable. Too tired for that today!

Izzy's Deli

Emerging from the dentist's office at 3 pm after three hours of medical ordeals, Mom needed both food and rest.
Any sane person would have taken her back to her residence or put her in the car and headed to some sort of fast food, but I turned her wheelchair into the crisp wind and pushed her one block to Izzy's Deli.
"It's too cold! You're trying to kill me!" she cried.
"Well, do you want French fries or not?" I asked impatiently.
"I want them," she answered.
"Okay then," I said, gritting my teeth.
"It's a green light," she said as we waited for traffic at Wilshire Blvd.
True, the direction she was turned had a green light, but the direction we needed to go was red.
At an intersection it's impossible to face a wheelchair in the direction you actually intend to walk because the downramps are placed at the point of the corner as if you were going to walk in an X pattern from one corner to the opposite corner.
The best you can do is:
1) Keep the wheelchair poised facing in a direction you don't actually intend to go.
2) Then swoop down the ramp when the light changes.
3) Once at pavement level quickly turn the chair into the actual crosswalk you intend to use.
This can be a little confusing for a dementia patient, especially one who likes to be in control and tell you where and when to push the chair.
Once we crossed the four-lane street, the front doors of Izzy's Deli shone like a stream of light breaking through an overcast sky.
"Come all ye who labor and are heavy laden," the plush booths and graciously welcoming tables seemed to be saying.
After pushing Mom up to one table, I sank into a soft vinyl bench.
Soon we each had a mug of hot tea diluted with six or so packets of non-dairy creamer.
We ordered and soon a turkey sandwich appeared for her along with a Reuben sandwich for me, each accompanied by a mountain of French fries and a bowl of coleslaw.
Mom did not fall asleep. She stirred her tea with her spoon, repeatedly lifted the heavy black mug with the words Izzy's ~ Deli to the Stars, and somehow got it back on the table, never spilling it. Several times she squeezed the chunk of lemon with determination, curdling the cream in her tea.
She attacked the sandwich with her fingers, putting slices of turkey in her mouth, then bread, then lettuce and more turkey. She managed to get most of the coleslaw onto her fork and into her mouth. She relished the dill pickle and the fries.
We ate in relieved silence, surrounded by the friendly noise of other conversations and the clink of things in the kitchen.
Soothing music played: "Dream a little dream of me..." and "Just call me angel of the morning, baby...."
Angel of the afternoon was the kind Latino waiter.
Above the tables were two enormous candelabra, each with twenty candle-like bulbs.
It was altogether heavenly, the best $30 I ever spent.
At 4:15 I was waiting for her to be finished, but she was using her spoon to lift a four-inch pickle, dripping with the coleslaw sauce, to her mouth. Then she drank some more tea.
"A good lunch, wasn't it!" I commented.
"Yeah, it was real good," she answered.
At about 4:30 we tipped $6 and wheeled back to her residence in the cold wind.
Not a bad ending for a day that could have ended with hospitalization.

Torture Again

I woke with the doctor's words yesterday echoing in my mind: mild kidney failure.
I had promised to take Mom in this morning for a catheterization and more blood tests, and she also had an appointment for dental cleaning at 2 pm.
Not a fun day. I procrastinated as long as possible, leaving the house about 11:15 am. From the car I called to ask if I needed an appointment for the catheterization.
"Your appointment was for 11 am," the receptionist reported.
Whoops. Dr. Rosen must have made that appointment. She had also said. "If her creatinin level is still elevated, we may have to hospitalize her."
If that happened, I would need the POA papers and maybe the detailed answer to the question, "Is she DNR?"
A month ago when my brother was in town, he and I had revised an earlier statement, and I had still not typed up the results.
I turned the car around, went back to the house, and typed up the specific instructions:
Yes to chemical measures and IV.
No to cardioversion and intubation.
No to chest compressions and feeding by tube.
Yes to converting Atrial Fibrillation to Normal Sinus Rhythm (NSR) for two weeks if needed.
Then I set out again, humming my usual tune for a day of medical adventures with Mom:
We're off to see the wizard, the wonderful wizard of Oz.
Because, because, because, because, because
Because of the wonderful things he does!
La la la la, la la!
When I arrived at 11:45 am, Mom was in her wheelchair in the dining room about to have lunch. As I snatched her away, a caregiver reported, "She went on the scenic drive this morning! We just got back."
"Oh, good," I smiled.
So all my procrastination had not mattered: I could not have taken her to the doctor at 11 am anyway because she had been packed off on a tour around town before 10 am. I should have called at 8 am and warned them not to take her anywhere because I needed to take her in for tests.
"How are you today, Mom?" I asked her automatically. I ask this question each time I arrive.
"I'm sick!" she answered.
An unusual answer, I thought to myself. If she recognizes that she doesn't feel well, perhaps this day will end with a hospitalization.
After a non-productive trip to the toilet, I wheeled her out wondering if she would ever be back--because my plan after her next hospitalization is to move her to a skilled nursing facility.
"We're not going to Japan," she announced as we drove to the UCLA Medical Center.
"Okay," I said. "It's probably not a good idea if you feel sick."
"We'll stay in Colorado. That's what we'll do," she said.
I avoided answering that one.
We arrived at the medical center at 12:30 pm, during the nurses' lunch hour, and had to wait until 1 pm to have the catheterization done and the blood samples taken to check her creatinin levels.
When the time came, I hoisted her onto the examining table and peeled off her slacks, nylons, and Depend. She voficerously protested each movement and screamed when the catheter was put in and taken out. For her, in her dementia, a catheterization is a rape. No amount of explaining makes it okay.
Her abdomen seemed too large while she was lying down. I wondered if, as Dr. Rosen suspected, she might have crystals blocking her kidneys from emptying.
Finally it was over and her Depend, nylongs, slacks, and shoes were replaced.
"You took off my black shoes!" she vented. "Why did you take off my shoes?"
"To take off your nylons," I replied, hopelessly drawn into explanation that wasn't going to help.
Then we went to the lab for her blood to be drawn.
"When we're done, we'll go get some French fries," I promised her.
She unleashed vitriol on the phlebotomist but finally that too was done.
Finally it was 2 pm and we were wheeling toward the elevators in the parking garage, but I had to call the dentist and report that we would be late for her tooth cleaning.
Any sane person would have cancelled the tooth cleaning, given her agitation and exhaustion. She can only put up with so much in any one day, but I pressed on, hoping to get it all done and not to have to interrupt my work another day for a trip to the dentist.
"You're a traitor, you are," she hissed at me as we drove down Wilshire Avenue.
I hadn't even told her we still had a dentist appointment to go to.
We arrived about 2:23 pm and the kind dental assistant got to work as soon as I got her moved from her wheelchair to the dental chair.
(I never said "And now, Mom, we will go to the dentist." It was easier to just bring her in without ever making the visit a topic of argument.)
"I'm sorry I didn't have time to brush her teeth before coming," I admitted. "And I guess they didn't brush her teeth after breakfast."
"You need to keep after them about that," she advised.
Her first step was to suction bits of food out of Mom's mouth, from breakfast I guess. Also there was food in her gums and between her teeth.
Meanwhile, Mom was coughing deeply and filling her mouth with clear phlegm, which the hygienist suctioned out.
If an audio recording had been made of the 15 minutes she spent in the chair, anyone listening to it would be convinced that the Geneva Conventions against torture had been violated.
When her cries formed words, they were something like "Stop! Get out! Leave me alone."
"I'm sorry it's hurting you," the hygienist answered.
"Baloney, you don't give a damn," Mom managed to say through the implements in her mouth.
"We want you to have nice clean teeth so you can SMILE!" said the hygienist.
I reflected that Mom is on the brink of either moving to skilled nursing or being put on hospice; she doesn't have a lot to smile about and knows it. But of course, dentists want people to smile.
"What's the use of trying?" Mom said as the appointment ended. "She won't ever do a thing I say. She's a mess, a baby. 'Pee and pee and pee again,' she says. Get me out of here."
"Oh, my mother is speaking about her caregiver," I explained. "We've been trying to get a urine sample for a couple of days, and she is tired of trying. Mom, we have to wait for the dentist to take a look at you."
"Damn fools! They don't know anything anyway," she said. "Nurses know a lot more than they do."
She was talking about doctors, of course. I know because I've been hearing this point since I was ten years old.
Somehow the dentist managed to put his hands in and out of her mouth without being bitten or scratched. I held her hands just in case for the few minutes he needed.
He commented about the Telluride license plate I keep on the back of her wheelchair, and Mom yelled, "To-hell-U-ride! That's what we called it."
Usually it's a humorous comment, but this time it came out like a curse.
"No services wanted, just remember!" she repeated loudly as we left the dental office.
Yeah, I got the message: no catheterizations, no blood draws, no tooth cleaning.
She's sick and tired of all this medical care, and so am I.

Depending on Depends

It's almost a full-time job, buying Depends.
First I tried Walgreen's because I had coupon for $1.50 off each package of 18 refastenable disposable pants, but they had no small/medium size (only large/extra large).
Walgreen's is often out of this size, but the weekly shipment comes in on Tuesday, so I gave it a try. After speaking with three clerks and standing around, I learned that the boxes had not yet been unloaded.
On to Long's Drugs, where I purchased two packages of Depends Refastenable small/medium--all they had left. But the price was $15.49 for each package. With tax, the total was $33.54 for 36 disposable adult incontinence underwear.
That's a cost of about $1 per pee.
Next I drove to Von's to use another coupon and buy two more packages (she uses three packages per week). At Von's they were on sale for $11.99 per package, and with another $1.50 off, the cost was a mere $10.49 per package (with tax $25.54 for two).
The cost: a mere 71 cents per pee.
I'm avoiding CVS, which just took over my Depend-able Sav-On store. I have a $5 off coupon for use there, but in the takeover CVS discontinued products Mom and her caregivers need, like latex gloves in medium-size. They just have "one size fits all," but the caregivers have small hands. They also changed the checkout stands so all items have to be handed back and forth across the counter before and after bagging, instead of placed on a counter, bagged and easily moved from there into my cart.
Last week I went to CVS just to use a $5 coupon, but when I got to the checkout stand, I was told that I should have used some new coupon printout machine as I entered the store. No discount without using the machine.
So now in addition to plastic discount cards and paper coupons for each store, I'm supposed to interact with a machine upon walking in if I want to actually get a discount.
At each store they offer their own brand of refastenable adult incontinence wear, several dollars cheaper than Depends. I've bought each one, only to find that they are not as thick and absorbent, not very fitted--more like a pad folded over than like underpants.
Sometimes when I visit Mom in the late afternoon, I find her Depends soaked and heavy (with maybe five pounds of urine) because she has not been changed since 10 am. That's why she needs the most fitted and absorbent disposable underwear possible.
The easiest option for me would be to stop buying Depends all together and just let her wear the non-refastenable disposable wear provided by her residence. I don't do that because she wears support panty hose for circulation in her vericose veins; without refastenables, her pantyhose, shoes, and long pants would have to be changed each time her underwear is changed.
Also the disposables provided by the residence are loose, barely fitted--again, like a large rectangular pad folded in half.
Note: the caregivers call them diapers. I avoid this word in order not to hurt Mom's feelings. She hates wearing them, hates being treated like a baby, especially hates having them changed at night while she's lying in bed. She'd prefer to get up and be taken in her wheelchair to the restroom two or three times per night, but that's too much work.
Take the quiz:
What's your solution to this care issue for your elderly relative?
What's your view of my time-consuming shopping habit?
A. It's another sign of your codependent behavior. Stop buying Depends and let the residence supply the underwear.
B. Keep buying Depends but stop feeling that you need to shop for bargains, use coupons, etc. Just go to one store where they keep the right size in stock.
C. Accept what you cannot change.
D. Oh, you are such a good daughter. Sigh.

The ER Again

It was inevitable.
When I found Mom on the floor on Monday, and she complained, "My bottom hurts," I decided not to take her to the ER for an x-ray.
Not again. Not this time. Even though she had not reported any pain like that in the last year or two.
On Tuesday when she was still saying, "My bottom hurts," I continued to ignore it.
But today it got to me. She was still reporting "My bottom hurts" and whimpering with pain when I transferred her from her chair to the wheelchair or the wheelchair to the toilet.
I had arrived at 3:30 pm planning to take her on an outing to the mall, but I decided to take her to the ER instead.
After x-rays, I'd know if her reported pain was serious--something broken in her fall--or just a sign of her general aches and pains and self-pity.
We arrived at the ER at 5 pm.
We left at 9:30 pm after x-rays and a CT scan. The verdict: nothing new was broken. Just the old cracks in her pelvis, crushed L-2 vertebra, and plates with pins in each hip.
As we were leaving, it occurred to me that maybe "My bottom hurts" means a urinary tract infection. I'll try to have that checked out tomorrow.
I wheeled her back to her residence, fed some of the salmon dinner the staff had saved for her, and put her to bed, going home at 10:30 pm.
"You better come when I call you," she kept saying to me as I settled her into bed and prepared to leave.
"No, I won't come," I repeated to her. "Someone here will come, but it won't be me. I'm going home and going to bed too."
"You better come when I call you," she said again.
~~~
Other samples of our conversation during the four and a half hours we spent in the ER:

Anne: Are you okay?
Mom: Just sleepy.
Anne: It's hard to wait so long for the doctor, isn't it?
Mom: They think they're so smart. They don't know as much as nurses.
~
Anne: So you talked to Bill a couple nights ago? What did he say?
Mom: He told me I was in heaven already.
~
Anne: Now we're going to get a CT scan.
Mom: They're just trying to make money off of me.
~
Anne: (waking her) Okay, Mom, now we're going to get dressed and go home.
Mom: I'm done now. It was a baby boy.
~
Anne: Let's get this shirt on.
Mom: Everybody knows I'm not a bear.

Next time somebody remind me not to take her to the ER just because she fell down.

Easy To Go Wrong

It's so easy for Mom to slide from a state of well-being to a few rungs below and then begin a steep downhill slide.
Today both of Mom's hands were shaking as she sat with them in her lap, probably the result of her fall yesterday.
She was also complaining "My bottom hurts," as she said yesterday. I should probably take her to the ER for an x-ray in case she broke a bone in her fall, but I just don't want to lose six hours doing that, only to hear she is fine.
In addition, three new problems developed:
1) I noticed she has two big blood-filled bruises on her wrists, one on each hand, one on the inside of the wrist, the other on top. I guess it is from last Wednesday when I allowed the staff to take her for her blood test. They took her to a lab I don't use, and whoever took her blood sample must have been unable to find a vein.
Probably I should return to taking her myself for her blood tests and going to the lab that does it right.
I took her to show the bruises to two staff members, telling them that I will take over her blood tests again if this continues.
2) The new hairdo she got yesterday was gone. Instead her hair was flattened on top, hard with matted mousse, and frizzy around the neckline like a perm that had not been put on rollers. $20 yesterday for the shampoo and set--but today it looks as if she hadn't had her hair done for ten days.
I took her to the beauty shop and complained. They wanted to spiff it up on the spot, but I said "Just do a better job next time."
Her caregiver Connie says she used a shower cap last night on the hairdo, didn't get it wet. So maybe the caregiver who dressed her this morning combed it with a wet comb and ruined it?
3) Her favorite sweater, the one with the faux fur collar, has to be taken to the dry cleaners again, though it was just cleaned a week ago. It has black smears on the arms and side from rubbing against the wheelchair wheels. I drove it to the dry cleaners.
~~~
I was going to try to get her walking a little ways every day to regain mobility, but with this fall she can't do that yet.
~~~
I left after two hours, feeling glum about her shaking hands, her bruises, her flattened sticky hair, and her favorite sweater going back to the dry cleaners.
If I don't provide continual attention, things fall apart.

The Unexpected

Be prepared for the unexpected.
That's the advice I would give to anyone caring for someone with Lewy Body Dementia, but it's by definition impossible.
Today I postponed going to see my mother until 3:30 pm because I am trying to cut back on my hours spent with her. My husband and kids think I spend too much time with her, and a particularly unkind therapist for one of my kids even accused me of spending time with my mother to escape other problems.
Yeah, it's so fun to visit the Reminiscence Neighborhood.
Anyway, today I entered Mom's room about 3:35 pm to find her lying on the floor underneath her wheelchair with her legs sticking out from one end of the wheelchair and her head and arms at the other end.
Her head was resting on a blue foam rectangular pad that was supposed to be a footrest.
The wheelchair was next to the recliner where she had been sitting upright at 3:20 pm when a caregiver checked on her.
But she had decided to get out of the recliner into the wheelchair and had fallen or slid underneath the wheelchair.
"Oh Anne, thank goodness you came!" she said to me when I entered.
She appeared to be okay though shaking and agitated.
"What are you doing, Mom? Why did you get out of your chair?" I began asking.
"I'm going to dinner," she said.
"No, you are not supposed to go anywhere without help," I argued.
"But I graduated," she said. "It's okay now."
"No, it's not," I continued though I know it's pointless to lecture her.
"I graduated," she repeated. "I'm ready to roam."
~~~
What Mom meant was that her physical therapy had ended. The therapist had moved her along as far as she could and had trained me and her caregivers to do certain exercises with her.
Actually, it was the physical therapist who had ordered that she sit upright in her recliner, with the blue foam box under her feet, rather than stretched out in a reclining position, because this would be better for her feet. They would sit upright and not get turned in.
Susan, a caregiver, and I had argued with Nora, saying that that position wasn't safe; she could too easily propel herself forward to get out of the chair. but in the end I agreed to give it a try. I allowed her to be left with the recliner in an upright position and the box under her feet.
~~~
When I saw Mom on the floor, my first reaction was to move the wheelchair off of her, put a pillow under her head, and try to lift her into the wheelchair, but then I remembered to go get the lead care manager on duty and let her see what had happened.
Esther was horrified when she saw the scene.
"From now on she cannot be left in her room alone in her recliner," I ordered. "She will have to sit out in the common area, whether she wants to or not."
We lifted Mom into her wheelchair and took her vital signs. Blood pressure only 109/69 and pulse 66. Pretty darn good.
We took her to the toilet, where she appeared to be able to be transferred without unusual pain.
What I did not want was six hours in the ER followed by 24 hours in the hospital for observation and two weeks of x-rays, CT scans, and blood tests, as happened after her fall on Dec. 16.
In that case we finally figured out that the pain she was reporting was caused by a broken bone in her clavicle area at the left base of her neck, but I really don't have the stamina to go through that series of doctor/lab visits every two months.
I took her into the dining room and chatted with her for a while, then left about 4:45 pm.
Note to myself: get going on finding a good skilled nursing facility. Mom needs more supervision, maybe restraints, which are not allowed in an assisted living residence.
Somehow I need to find the time to research her next living situation, the fifth since we moved her out of her home in November 2001.

Aftermath

For Mom to be awake and alert and stimulated by an exciting P.E.O. meeting is good, but as we drove home I realized the excitement had spun her into a kind of hypomania expressed mainly in wild hallucinations.
"I want those earrings," she kept saying as we drove to her residence.
"What earrings?" I asked.
"Those right there," she answered, looking and reaching to a place near her on the dashboard of the car.
"Where?" I asked.
Finally rather than argue with her that nothing was there, I took her hand to touch the spot and said, "Then get them."
Her fingers scrambled at the smooth surface, but she continued to see them. "I can't get them, " she said.
I tried to distract her to another subject.
As we got out of the car, I was helping her to get into her wheelchair.
"No! There's a pin there," she said.
"Oh? Okay, here, I took it away," I answered.
That seemed to work.
But when we were back in her room and I had positioned her in her recliner for a little nap, she was still seeing things.
"There's a cat in my clothes closet," she said.
"Oh, really?" I answered. "I'll chase it out. Scat! Get out of there, you cat." I dramatically chased it out and tried to leave.
"There's still a cat in there!" she cried suddenly.
"Oh dear!" I sighed. "I'll chase it out."
But I also took her out of the recliner and put her back into her wheelchair.
"Let's go see if there's a snack we can find in the kitchen," I suggested.
There was no way she could take a nap. Her mind was racing, so I took her into the kitchen and gave her some grapes to munch on while sitting at a dining table.
"I have to bring her in here," I explained to the caregivers. "She having hallucinations, and I can't leave her alone in her room."
"Oh yes, they do that a lot," Susan said. "Verma always thinks there's someone in her room. She's afraid to go in there."
I made a quick exit, exhausted by the unending stream of caregiving tasks.
I do think she enjoyed being part of a P.E.O. meeting, a relic of her normal life after retirement from teaching nursing.
Going to church, attending these P.E.O. meetings, and being a part of holiday family gatherings in my home are the only vestiges she has of her earlier life. They make it possible for her to endure the long, boring hours spent with strangers and caregivers in her assisted living residence on the memory care floor (locked so the residents can't leave).
But these pleasant gatherings for her come at a high cost for me.

The Kindness of P.E.O. Sisters

Today was another exciting P.E.O. meeting, the second I have hosted in my home.
I hadn't scrubbed my kitchen floor since the last such occasion, before Halloween, but I did it from about 1 to 3 am last night.
Not a good time to scrub floors--in my sleepiness I dumped the bucket of dirty water down the toilet with the square scrub pad in the water, but somehow it didn't clog my plumbing.
By 10 am the meeting was getting underway.
The chaplain read a nice devotion on love from Corinthians, and the president complimented her on doing such a good job.
"It's not easy," Louise said. "When I was chaplain sometimes I'd find myself going from one end of the Bible to the other trying to find something positive."
Yeah, finding something bland and palatable in the Bible can be a tough job.
We repeated the Lord's prayer, and Mom used her own version of the various options when it comes to debts and trespasses: "Forgive us our debts as we forgive those who debt against us."
During the business meeting, Mom kept whispering to me about her husband crossing the red line and about some dream she had: "I had to take everything off until I was naked. The president told me to do that." (I hope it was a dream)
When there was a motion and a vote, Louise asked, "All in favor?"
"Amen," said Mom.
After lovely refreshments, we played some challenging games of Bingo--trying to make a window frame and then the letter H, not your usual fare.
I was holding my card up for Mom to see, to involve her in the game.
At one point, when N42 was called, she yelled out, "I have it!" Which was true.
"You do? Then you get a prize," Louise graciously answered.
She brought Mom a wrapped present, which turned out to be a box of Kleenex.
Mom enjoyed getting it and unwrapping it. Then she proceeded to pull out several tissues.
"We just need one," I corrected her.
"This is for if I decide to wipe my nose, and this is for if you do," she answered. It's true that I do a lot of wiping of her nose, which seems to drip often.
By the end of the meeting she had pulled all the tissues out of the box and they lay in a pile beside her wheelchair.
I cleaned up and prepared to take her back to Ocean View Assisted Living.
"Did you enjoy the P.E.O. meeting?" I asked her.
"Oh, yes!" she answered.
And I believe she did.
At least she was awake and alert and involved the whole time, not falling asleep.

The Red Line

Mom talks a lot about the red line now.
"My husband crossed the red line," she says.
"He just put on his white dress and waved his hand and said 'Bye, honey' after he crossed the red line."
It's not a metaphor for her.
It's her understanding of death.

Slowly Dying

It's a small thing: tonight Mom can't remember that she is supposed to take her false teeth out at night.
"It's the first time," says her weekend caregiver, Raquel.
We both know that for over a year now, Mom has been asked to take them out and has complied. For forty years she kept them in all night, just removing them for a half hour per day to soak in Efferdent.
But then one night a year and a half ago she took her partial plate out during the night, put it "under her pillow," and it was never seen again. After much searching, we replaced it and instituted the no-teeth-at-night rule.
"Why don't you just take them out?" I ask Raquel.
"She might bite me," admits Raquel with embarrassment.
"Oh, yes, of course. She probably would bite you," I remember.
In the last few years biting has become one of Mom's avenues of last recourse in defending herself and keeping caregivers at bay.
So I get the Efferdent cup and begin negotiations with Mom to remove the teeth.
"No! I will need them in the morning," Mom argues, but eventually she complies.
Then I floss her remaining eight teeth at the front of her lower jaw and brush them.
When I give her sips of water and ask her to rinse out her teeth, she just swallows the water. She has forgotten how to swish out her mouth and spit after her teeth are brushed.
~ ~ ~
She is having a sleepy day, but she did open her eyes and speak with me immediately when I arrived at 7 pm.
I didn't take her to church today because I was one of two leaders at the Women-Church liturgy in the morning, and I had to visit my daughter in rehab in the afternoon. It would have been hard to do these things while attending Mom in her wheelchair.
~ ~ ~
In the last week or two, the list of things Mom can't remember how to do has been growing.
She doesn't remember:
1) how to participate in her tooth care at night,
2) how to tear off individual sheets of toilet paper and stack them while sitting on the toilet,
3) how to ask for a tissue to blow her nose,
4) how to replace her foot on the foot support of her wheelchair if it falls off,
5) how to listen to the television and make sense of it.

For about two years she has not known how to dial a phone number.
She can't do two things at the same time--like eat and watch I Love Lucy, which used to be her delight.
She no longer asks for water to be run at the sink while she is on the toilet.
She no longer insists on two napkins at meals, one at her neck and one in her lap.
She doesn't interact with most of her possessions: the dolls in her glass cabinet, the jewelry on her bureau, the photos on her walls. I don't think she sees these things any more.
She hasn't talked about going to Colorado for six months or more.

When I bring her to my house, she asks to leave in about ten minutes. I put the wheelchair at her end of the kitchen table, make cinnamon raisin bread toast, serve it to her with milk, and as soon as she finishes it, she says, "I'd better go back now."

If I take her to Denny's and we order a meal, she immediately asks where her food is.
"It's not ready yet," I argue, but she feels it should arrive while the waiter is walking toward the kitchen.
~ ~ ~
Lately she has had more sleepy days, two or occasionally three per week. On really bad days, she is too sleepy to eat. She just sits at the table slumped forward.
Tonight she was sleepy and didn't eat much, reports Racquel, who managed to get her to eat a little bit.
Last week she didn't eat all day on Saturday, though I spent 45 minutes trying to get her to sip Ensure and to eat some pasta with seafood.
~ ~ ~
Tonight it all adds up: she is dying. Not dramatically, as with a stroke or pneumonia, but inch by inch, with excruciating slowness.
Item by item, she is losing her ability to do things and remember things.
"Time for a nursing home," I realize suddenly. "What she needs increasingly is just nursing care."
Yet she is still in the fancy assisted-living residence I chose to keep her happy and enhance her self-esteem. For a while it made sense for her to be in a beautifully decorated place with an elegant dining room and all of her own furniture in her private room.
But now she sees less and less of her surroundings. She has tunnel vision that extends to only a few feet around her.
It's time to give up the elegant residence and the eight-hours-per-day of private caregivers.
She is close to her 88th birthday, and I expect she will not live to see her 89th.
The caregivers and executive director of her residence want me to keep her there until she dies, paying for private caregivers around the clock when that level of care becomes needed again.
Two factors dictate a no to this plan:
1) the $7,000 per month needed to keep her there, and
2) the lack of a workable plan for evacuation of the residents on her floor in the case of a fire or earthquake. Just last month she was injured by falling when there was a small fire on the first floor.
~ ~ ~
I leave the building in tears tonight as I reflect on the shortness of her remaining days. I've been in denial, I think.
She is withdrawing from the world, but I'm still treating her like the person she was two years ago, who enjoyed her surroundings, was proud of being an author, and demanded to go Colorado in the summer.
She is methodically dying, but I am struggling to keep her eating and involved in activities.
I wonder how I will find the time to select a skilled nursing facility and move her there.
I also realize with relief that my complex life of caring for her while interacting with three daughters ages 19 to 24 will not last forever.
Perhaps when 2007 ends my middle daughter will be in recovery from cocaine addiction and my mother will have moved on to her final rest.

Note on April 7, 2017:  My mother died on April 9, 2008, at age 89.  My daughter has almost ten years of being clean and sober and is now a therapist helping others to recover from addiction.

Full Speed Ahead

Mom's brain was working at top speed today, skittering off in many directions.
I brought her to my house at about 1 pm to eat a snack and talk with my youngest daughter while the dog ran around them.
Here are some samples of the conversation.

"It must be kind of crowded in heaven," Mom says.
"No, I think there's a lot of space there," says Marie. "Unlimited access, like the internet."
"Interesting idea, Marie," I interject.
""I think it's very true," she continues. "Heaven is like the internet. If I make a website and my computer crashes, the website still exists."
"I don't think I can send you letters when I go there," Mom comments.
"Well, I guess not," says Marie kindly. "I think you can talk to us, though, whenever you want to. We'll just hear you in our minds, like the way animals and humans understand each other."
"Do you know Page 141? I make everyone memorize it," Mom continues.
"No, what is it?" Marie asks.
"Page 141: The Lord is my shepherd. I shall not want. He leadeth me beside the still waters. He telleth me where to go and what to do and what to do about it...."
"Oh!" Marie and I chorus.
~ ~ ~
"I need a Kleenex," says Mom, fishing in her purse as she sits at the table.
For some reason I am not listening to her; I don't jump up to set a box of tissues in front of her.
Suddenly she says, "There! I wiped my nose on the P.E.O. Sisterhood."
"No, you didn't!" I cry in horror, turning to her.
Indeed she is holding her small lavender P.E.O. booklet of names, addresses, and upcoming events. There is a dark brown smudge on the cover.
"Why did you do that?" I ask.
"Why? It needed to be done," she comments blankly. "Sacrilege, huh?"
~ ~ ~
As I drive her back to her residence, Mom is talking about my brother Jim's wedding again. She was talking about it yesterday. Perhaps her caregiver put the videotape of the wedding into her television.
"Jim cried as he slit the penis/vaginal opening," she says.
"What--why?!" I comment numbly, wondering what on earth brought this up.
"Because he didn't want to hurt her," Mom says. "I don't know why that was part of the wedding. I didn't think that was appropriate at all."
~ ~ ~
Now she is worried about some problem she will find in her room when we get back there.
"I'll have to get down on my hands and knees to crawl to the box," she says.
"What box?" I ask.
"That big case of diapers," she says.
"There's no case of diapers in your sitting room," I say firmly. The rest of today's conversation may have been insane, but here I am on solid ground. "It would not be a good idea for you to get on your knees and crawl to anything. Your Depends are in your bathroom, two packs of them, each pack in a plastic wrapper."
"No, they're in my room in a box," she says. "You'll see when we get there."
I give up.
Conversation is just not possible.

Dementia and _______?

Let's face it, most of us are not doing just dementia.
We are doing dementia and a full-time job, or dementia and the rearing of teenagers, or dementia and two or three volunteer services in the community, or dementia and all of the above.
Very few of us have the luxury of doing just the care and management of a person with dementia.
Since December 20, when one of my daughters went into rehab, I have been doing Lewy Body Dementia and bulimia and cocaine addiction.
First of all, there's just doing the learning and research on these particular illnesses.
Then there are the issues of where to get the best care: finding doctors, therapists, residential living centers--and getting my mother and daughter to these places and appointments.
Then the's the job of figuring out how to pay for it all.
And of course there's the need to visit my mother and my daughter, give them support and encouragement.
Finally, there's the need to care for myself--to find support and encouragement for me.
Oh, and also there are the daily ups and downs of these illnesses--every decision made yesterday will be changed today if my mother falls and breaks a bone or my daughter relapses.
And one more caveat: caretaking can itself be addictive, according to Al-Anon and other sources.
In other words, my mother and my daughter are my cocaine. It's only too easy for me to get all wound up in care of them and forget to meet my own needs.
Today's reading from The Language of Letting Go by Melody Beattie ends with this resolution:
Today, I will pay attention to what I want and need. I will not discount myself.
That's great--but I got three phone calls from my mother's caregivers today, and one from her physical therapist, all expressing concerns about her and demanding my immediate attention.
She didn't eat any of her meals today, and she spit out her medications.
Meanwhile, I have a three-hour meeting for my work, a luncheon date with my youngest daughter, a long phone call from my daughter in rehab, and a dinner date with my husband.
Somebody tell me how in the midst of these conflicting demands I am going to "pay attention to what I want and need."

"Life Is No Abyss"

It's Saturday night, and that means Lawrence Welk.
Tonight the rerun played happened to be from the 1950s, in black & white, when Lawrence was fairly young.
One of the featured soloists sang an old favorite:
Remember this--life is no abyss.
Somewhere there's a bluebird of happiness.
Somewhere, but not in the Reminiscence Neighborhood.
Rose fell and injured herself, Dorothy is bellowing wordlessly, and Sue is telling her to shut up.
Meanwhile, my mother, Evelyn, did not eat any of her meals today and refused her medications. Basically, she had a sleepy day, which is common with Lewy Body, especially after a previous day with lots of stimulation.
Mom always enjoys breakfast, her favorite meal of the day: oatmeal with brown sugar, scrambled eggs, bacon, and orange juice.
But today she sat slumped forward in her wheelchair, eyes closed, too deeply asleep to eat.
When the staff urged her to eat, she yelled, "Leave me alone!" She refused to take her medications.
She was returned to her room, and when they placed her on the toilet, she yelled "Get the hell out of here." They transferred her to her recliner, where she again yelled at the caregivers to go away and leave her alone.
At lunch time, she was wheeled in to the dining room but still refused to eat and sat with her eyes closed in deep sleep.
I arrived and tried to talk to her. She did not open her eyes and responded only in slurred words. I managed to get her to the toilet, where it was clear her Depend had not been changed for 3-4 hours.
As we passed her black desk with the candy jar on it, she said, "I want a mint!"
I unwrapped one and gave it to her, but it lay in her curled hand. She couldn't even put it in her mouth.
I took her to the dining room and got her to drink a V-8, then started her on her lunch of pasta with shrimp.
I called the medications nurse with the news that she was now awake enough to take her meds.
"Her private caregiver will be here at 2 pm," I said, leaving at 1:50 pm and feeling good that she was eating a bit and about to take her medications.
But I got two more phone calls that afternoon: she had not eaten any more after I left, and when Bethlhem urged her to take her meds, she spit them back at her.
So I showed up again, shortly after 6 pm, and found her again in a very deep sleep.
I also found that her 2 - 10 pm private caregiver had neither arrived nor left me any message that she would not be able to work today. I called her and found her home with a stomach flu.
I decided that first of all Mom had to take her meds, so I found the nurse, got the meds, and made her swallow them all in applesauce. This took quite a while since she would only open her mouth a small crack.
Realizing that she was too sleepy to eat a warmed-up meal, I took Ensure out of the refrigerator.
I poured some in a cup and tried to get her to drink it. Holding the cup to her lips, I could hardly get her to take some sips and then swallow.
I switched to a straw and held the cup in her lap; for thirty minutes she took tiny sips. The cup of strawberry Ensure was about half empty.
Finally I decided to call it a day; I changed Mom into her nightgown, removed her false teeth, and brushed her eight remaining lower teeth.
I took her into the family area to watch Lawrence Welk.
On the way out of the Reminiscence Neighborhood, in the activity room, I noticed a white board with the following messages:
H-a-p-p-i-n-e-s-s
V-i-c-t-o-r-y
Word for today:
CHEERFUL

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.

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.

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.

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.

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."

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.

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.

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.

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.

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.

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.

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?

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.

Never Leave Your Mother Unattended

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

Dementia and Dumping

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

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

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

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

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

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

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

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

An LBD Diagnosis at Age 55

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

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

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

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

Others are invited to share comments as well.

Remix on Birth, Abortion

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