Monday, April 30, 2007

My Room! My Room!

After dealing with movers and SNF administrators, I drove Mom back to Ocean View and unceremoniously dumped her in the dining room with a bag of French fries and a strawberry milkshake.
I told the movers where to place furniture, signed a lot of papers, and paid them.
Then I realized I was late to a 2 pm doctor's appointment for myself. It was Christina, a caregiver on the pm shift, who pushed her in her wheelchair back to her room about 3 pm.
Her furniture had just arrived and was in place, but the walls and tabletops were bare.
Nevertheless, as Mom rounded the corner and saw her tree (a fake ficus), her door, and her room with its furniture, Christina reported that she began crying out, "My room! My room! My room!"
No doubt she was a bit confused and amazed.
She'd been sleeping in her recliner at the other place two hours earlier.
Now she was back at her long-term residence, and there was her recliner, her bed, her bureau, desk, doll cabinet and television.
It was a miracle.

Sunday, April 29, 2007

Look Ma: No Teeth

I slept peacefully after deciding to move Mom out of skilled nursing.
Getting up at 7:15 after only three hours of sleep, I was looking forward to a second great day of the LA Times/UCLA Bookfair.
It took determination to steer the car toward UCLA and take a full day for myself, not going to check on Mom first.
Her circumstances were so miserable at Country Villa Mar Vista that for six days morning, evening, in fact all day long, I had been agonizing over how she was doing, what to do, whether to drive over there.
Today was different, knowing that tomorrow I will move her. I had a great day listening to authors such as Walter Mosely and Jane Smiley.
Mom’s day, however, was not as good.
Arriving at Country Villa at 5:40 pm, I found her eating dinner at a table with Henry, a kind elderly Asian man; Phyllis Berg, a beautiful blue-eyed, clear-minded public health nurse from Minnesota, 81 yrs. old and on a pureed diet; and Nicole, a sharp-tongued, sharp-witted aging little person.
“Hi, Mom, how are you?” I began but realized immediately that her false teeth weren’t in. “Where are your teeth?”
She mumbled an answer as I searched her lap and her crumpled napkin. Yesterday I had watched her take her upper plate out at lunch and wrap it in a napkin, so I was worried that she might have lost them.
Then I walked back to her room to see whether the teeth had been left in the soaking cup since last night.
Sure enough, there they were, sitting in the cup of pale blue Efferdent water, underneath the large sign in purple marker pen posted by a nurse: “Put teeth in resident’s mouth before meals.”
Breakfast, lunch, dinner without her upper plate or lower partial plate, just the eight front teeth still rooted in her lower jaw.
A message from God: you made the right decision in taking her out of here. Thank you.
And a convenient way to explain to Country Villa why I am moving Mom out just a week after moving her in.
I took the charge nurse into her bathroom and showed him the teeth in the cup.
“I’m going to move my mother back to her assisted living residence,” I told him, taking the teeth out to return to the dining room.
I put the teeth into Mom’s mouth, despite her objections, and soon a tiny African woman named Tutu came trembling up to me to apologize. Mom was one of the 12-13 residents she was in charge of for the 3-11 pm shift.
“It’s not your fault,” I said. “You have too many residents to take care of, and of course the CNA taking her to breakfast and lunch should have put her teeth in. Yes, there was a sign on the bathroom mirror, but I don’t blame you.”
“I usually work the night shift,” she explained.
“Oh, and she is a new resident. You aren’t familiar with her care.”
I took Mom back to her room, toileted her, put her nightgown on, and left her in her chair to watch a DVD of The Sound of Music on her laptop computer. Never mind that I had put the same one on the night before.
I went home to have a peaceful dinner with John and his friend Ed Miller, visiting from McLean, Virginia.
In the morning, somehow, I would find a way to move Mom and all her furniture and belongings back to Sunrise.

She Needs Her White Geranium

Resolved to move Mom back to Ocean View Assisted Living, I went to the bookfair without visiting Mom first. I didn't worry about her. She could last one more day.
I remembered how at Ocean View she depended on a few key markers that told her she was okay and in a safe, pleasant place. These included the (fake) ficus tree by her door and the (fake) white geranium plant sitting in a pot at the turn of the hallway between her room and the dining room.
"There's my white geranium," she would say with satisfaction almost every time she passed the plant, either with her walker or in a wheelchair.
At first I thought I would just bring a new white geranium to County Villa Mar Vista.
But now I realize there are larger problems here than just one missing plant.
I will move her back to her white geranium.

Hell is a Nursing Home

My 88-year-old mother has been in skilled nursing for a week as of tomorrow afternoon.

I've gotten over my "Bite the bullet" "It's not so bad" thinking.

I'm now seriously considering moving Mom back to Ocean View Assisted Living tomorrow.

This has been one hell of a week, second only to Dec. 31 - Jan 6, the week I learned that one of my daughters has a cocaine addiction.

I thought I would have an easier time with her in a SNF--not so. Much more time-consuming.

She's pretty lost. Her spirit is broken now. She's not fighting with anyone there.

Yesterday she said to me, "This is a pretty good place you picked out." She seemed resigned, trying to please me and accept her reality.

But today she said, "I don't like it here." Each time I arrive she grasps my hands, desperately trying to connect and find reassurance.

At her assisted living, she would often be angry when I arrived, sometimes wanting to hold onto me, but she wasn't listless like she is now. I'm observing something like "failure to thrive."

Food and other residents are not the problem.

Being warehoused is the problem. She's a piece of meat being moved around. They don't talk to her personally, don't interact the way the staff at Sunrise did. There are 59 residents and a lot of staff on various shifts. She's lost.

Of course, she's getting PT, OT, ST, and her doctor visited her in her room. Nurses are in a station right next to her room. They're happy to monitor her UTI status, anticoagulation status, lungs, etc.

I don't have evidence yet of Elisa's charges, but Mom's drop in status to just another item on a workload is evident, especially during her shower, which left her in tears on Thursday night.

I wish I hadn't moved her furniture last Tuesday. At that point I was very committed to making this move work.

But now I think I'm going to pay $500 plus tip again to move all her furniture back to Sunrise.

Her words, "Don't sell my room!" still echo in my mind.

The "woman without a country" will get a home again.

Note to self: Try to figure out how to change the tag line on the blog to read "my 88-year-old mother." I started this blog two years ago.

Saturday, April 28, 2007

Day Six in Skilled Nursing

I woke resolved to do two things:
1) Make this move to skilled nursing work out.
2) Take care of myself. Not go crazy worrying about Mom.

To take care of myself, I planned to spend all day today and tomorrow at the LA Times/UCLA Bookfair, listening to various authors and panelists speak about their books.

To make things work out, I drove to Country Villa to check on Mom before going to the book fair. (This meant missing a couple hours of speakers.)

"Hi, Mom, how are you?" I always begin.
"I don't like it here," Mom said.
Oh dear.
"You don't like it here?" I asked. "You liked Sunrise better?"
"Yes," she said. She seemed listless, not opening her eyes, perhaps preferring not to see her surroundings.

Okay, so much for my plan of carrying on and trying to make this skilled nursing thing work out.

Friday, April 27, 2007

Smelling the Lilacs

Today I'm in despair.
After hearing from Elisa what a terrible place this nursing home is, compared to others, I don't know what to do. I just finished having all Mom's furniture moved here and getting her settled here.
Should I hang the photos on the walls?
I woke early, anxious about having Mom in Country Villa.
Take care of yourself, Al-Anon says. So I went to an Al-Anon meeting at 7:35 am and then went for a jog on the beach.
I thoroughly enjoyed running on the sand in the fresh air, seeing the waves and mountains in the distance, but it was a warm morning. I took off my nylon jacket and tied it around my waist.
A few minutes later, perhaps while I was reaching to touch an anemone on the rocks of the breakwater, my cell phone fell out of the pocket of the jacket.
I noticed it as missing ten minutes later and retraced my steps, looking for it.
At first there was no trace of it, but on a second tracing of my route, it appeared gleaming on the sand, washed up by a wave.
I opened it up and dried to let it dry in the air, but the poor thing had died.
That meant a trip to the Cingular store before going to see Mom.
The clerk was very kind and soon had me on the phone to the insurance company to have it replaced.
"I apologize for your loss, ma'am," the insurance representative said.
Wow! He was apologizing to me! I liked it, even if he was reading from a script.
I left the store grateful that in 3-4 business days, a replacement would appear in the mail (not new but used/repaired).
I decided to stop at a 7/11 store to buy flowers for Mom.
And suddenly there they were: bunches of sweet-smelling lavender lilacs for sale, just like those on the big bush in my grandmother's home in Telluride when I was a child.
I knew Mom would love them, and so did I, even though the bunch cost $16.
Maybe everything would be all right, now that we had lilacs.
~ ~ ~
When I took the lilacs to Mom, she commented, "This is a pretty good place you picked out for me."
"Oh, you like it?" I asked, hopefully.
"Yeah, it's okay," she said. She sounded resigned.
I could tell she was thinking, If Anne picked out this place, it must be the best she could do.
I had never actually told her, "We are moving you to a new residence, skilled nursing." I had just hoped that having her same furniture, bedside lights, and other things would convince her that she was safe and in more or less the same place.
I was counting on Emily's insight, "The recliner is her home." I was hoping Mom wouldn't perceive much of a change in her environment.
But Emily had visited yesterday and had explained the move to her, so she now understood that we had made a choice and that she had been moved.
All I could do was go on with the rest of my day and hope for the best.
Maybe it would work out. Emily was a physical therapist before becoming a pastor, and she had approved Country Villa during her visit to Mom. It seemed to be about the best we could do.

Thursday, April 26, 2007

Institutional Care

When I reached my brother Bill, a doctor at Ft. Lewis south of Seattle, he happened to be in Alaska, sent by the Army to give someone up there a vacation.
He told me he had spent several days doing colonoscopies in a fishing village on the Bering Strait. He was surprised at the amount of colon cancer he had seen in people just in their forties.
I poured out my stories about Mom to him.
"It's instutional care," he said. "Next--next--next. Assembly line."
He volunteered to take over care of Mom by hiring caregivers in his home near Tacoma--if his wife agrees to the plan. And after his last child leaves for college this coming September.
We'll see.

Psych Cases at Country Villa

Nursing homes are not the peaceful, quiet places you might think they are, at least this one isn't.
There are psychiatric patients here, some geriatric, some not so geriatric.
"They have crazy man here," says Elisa. "From the hospital. They use restraint. At night, things happen. Only 4 CNAs, 1 LVN."
Another staff member confirmed that some patients come directly from UCLA Neuropsychiatric Hospital.
I don't mean to imply that Mom is not a psychiatric case; Emily and I have rescued her from being sent to a geriatric psych ward two or three times.
But she's so much older and quieter than some of the men here.
One man looks about my age and is in a wheelchair, perhaps with cerebral palsy or something. He pounds on tables and yells a lot. His elderly mother visits him in the room across the hall from Mom.
Another man, not so old and African-American, stumbles about in a big PVC cage.
"He pushed his dinner tray off," reported Nicole, a resident who is an aging small person. "I told them he was about to do it, but they ignored me. It was terrible. He has punched the CNAs."
At first I figured Mom might take an interest in all this excitement, but now I'm thinking the noise level is so high that if she ever cried for help, she'd never be heard, even though her room is right next to the nurses' station.
And I'm wondering if it is safe.

Stage 1 Bedsore

After visiting the other nursing home with Elisa and visiting Country Villa (as she said hi to all her friends still working there), I decided to check Mom's behind just in case she might be developing a bedsore.

Sure enough, when I stood her up at the bar by the toilet, I saw a large red area maybe six inches in diameter, circling the lowest point of her spine. At the center of it, there was an even redder area, almost raw.

I went to report to the nurse in charge, and suddenly realized that Dr. Katherine Ward was sitting there at the nurses station.

"Oh hi, Dr. Ward. Good to see you. I just wanted to report to someone that my mother has a stage one bedsore." I said.

"I'm sorry to hear that," she said, motioning to a nurse to go check on this problem.

Poor Mom had to stand up again, and the diagnosis was confirmed.

"It's not Country Villa's fault," I reassured them. "She got it in the hospital because I told them not to turn her at night, because she was frightened of the two men who came to turn her every two hours. She has fears of rape when strange men come to her bed at night. But I should have had her turned anyway."

"I'll write it in her chart and make sure it gets treatment," Dr. Ward said.

I was pleased with the fast action. After putting A & D zinc oxide cream on it, I set Mom back into her recliner.

Soon Dr. Ward came in and did a physical exam on Mom--vitals, listening to her lungs, etc.

Seeing a doctor so easily is definitely a plus--but now I was more worried than ever about Elisa's prediction of poor perineal care.

I asked Binda when Mom would be getting a shower, and she agreed to do one right away.

She wheeled in a white cart that seemed to be made of PVC, undressed Mom, set her on the cart, and draped a sheet over her.

Mom was very sleepy but soon she was wheeled off.

When she returned ten minutes later, she was awake and angry.

"Did you have a nice shower?" I asked her.

"NO! Not the way they do 'em" she retorted.

"Oh dear," I moaned, thinking I should have watched the shower.

Then Binda dried Mom and asked me to put on the perineal cream while she held Mom up.

I did it but first realized that the area wasn't even dry... it all seemed so hopeless, this violent shower followed by inadequate drying and then slapping on the cream.

I fled at 7:30 pm, heading to an Al-Anon meeting. But before going in I called Emily and Bill to report to them.

I felt desperate, despairing.

What to do next?

Smoke Gets In Your Eyes

After talking with Elisa, I emptied the remaining drawers at Ocean View Assisted Living to take to Country Villa.
I continued to explain to everyone who asked, "Evelyn will not be returning. I moved her to skilled nursing. Her needs are for nursing, not for pretty surroundings and good food, which you all provide so beautifully here."
I was okay until Rene, the Filipino caregiver for the old Scotsman John, began to play "Smoke Gets in Your Eyes" on the piano in the living room area.
I burst into tears.
Then I lectured myself: "She needs the nursing care. You can't possibly be sentimental about not returning to this place. Since when did this floor for Alzheimer's and other dementias look so good?"

Inside Information

I went to Ocean View Assisted Living about noon to pick up a few last things.

I encountered Elisa Torres, the am caregiver who dressed my mother five days a week there, put on her make-up and jewelry.

"Hi, Elisa," I began. "I'm glad I found you. I wanted to tell you that I moved my mother to a nursing home."

"Oh, yes, Miss Anne," she said. "But they tell me Country Villa?"

"Yes, Country Villa Mar Vista," I said.

"Oh no! Is not good place," she explained urgently. "I work there five years! They no change the diapers at night, no. I see bedsores this big, red." She held up her hands making a circle with a six-inch diameter.

"Oh dear," I moaned. "You mean the caregivers have too many patients to care for?"

"Yes, oh yes. The CNA, she has ten people, twenty at night."

"But they told me their ratios were 1/7 in the daytime, 1/5 in evening shift, 1/4 at night."

"They told you, yes, but they lie!" she laughed. "Another place, I show you, is good place, they take good care of your mother. I show you today, I go with you. What time you can go?"

"Anytime--but you worked from 6 am today, you get off at 2 pm. You can't go look at another place today."

"Yes, I go with you. I visit Evelyn and show you this other place."

"Okay, if you don't mind. How about 4 o'clock? I'd like to see a place that you say gives good care."

I set my mind to face this inside information, but it was devastating news. Just two days ago I had moved all Mom's furniture--and now I was going to second-guess that decision?

After Elisa left, I cried.

Wednesday, April 25, 2007

Nice People Trying Hard

After being awake past 2 am worrying about the problems in skilled nursing, I woke at 7 am, worried some more, and updated a schedule of care for Mom that I had written two years ago. It details her care needs throughout the day: how to dress her, when to put her in her recliner to rest, how to manage her false teeth, when she likes to go to bed, etc.
I made four copies and took them with me to my 10 am intake meeting with Linda Wesley, the director of social services; Ginny, the resident council coordinator, and Rosa Avila, the activities director.
Before the meeting, I went to check on Mom and found her sitting in the dining room eating breakfast without her teeth in her mouth.
I took the teeth to the dining room, discreetly put them in, and went to the nurses station to report the problem to Linda in a less-than-friendly voice.
Then we went to the intake meeting, where I apologized to Linda for my angry tone a few minutes earlier. Linda is a really kind person, small and slender with blue eyes and blonde kinky hair (a bit of African-American blood). What a hard job she has!
The meeting was lively and friendly.
It was performance art: I explained what Lewy Body Dementia is, discussed the sleepy day Mom had on Tuesday, outlined her care needs using the schedule I passed out.
I explained that her bathroom is not currently wheelchair accessible; it has no bar in an accessible place near the toilet for her to grab while someone removes her pants and nylons.
I described the horrible toileting scene I had witnessed the night before.
I set a boundary: because of my concerns about toileting and personal care such as teeth, I will research other care facilities such as Berkeley East and if necessary move her when the Medicare benefit ends after twenty days.
Rosa described her plans for Cinco de Mayo (to be held on May 19): a mariachi band in the patio area with a fiesta. It sounded great.
In addition to the presence of a doctor from Mom's geriatric practice, this place offers beauty: a lovely large shaded patio area adjoining the dining rooms and flowers, landscaping all around. All the residents are in ground-level rooms (safe exit in case of a fire or earthquake).
The meeting ended amicably, and I left feeling optimistic.
Within a half hour Francisco the handyman had removed the short bar in the corner behind the toilet and replaced it with a nice long bar that Mom could hold onto before and after being placed on the toilet. He also removed the huge industrial chrome toilet paper dispenser in order to have space for the bar (but didn't put in a normal toilet paper holder).
"That was so fast! Thank you," I told both him and Linda, who had ordered it.
I took Mom to the dining room for lunch and then pushed her around the block in the bright sunshine. The flowers in all the yards were beautiful. We picked a few marguerites and two white roses (abundant enough that it seemed okay).
I left at 4 pm, did a few errands, and returned at 6:15 to brush her teeth, toilet her, and change her to her nightgown.
After that I put chicken in the oven for John and me and rushed late to my 7:30 Al-Anon meeting, where I reported that I had moved my mother into skilled nursing.
I was feeling optimistic: this nursing home thing would work out if I watched the staff like a hawk.
Another Al-Anon member commiserated with me afterward about how hard it was to put his mother in skilled nursing for the last two months of her life.
I knew I had broken the Al-Anon rule, "Take care of yourself." I had not taken time to eat a proper breakfast, lunch, or dinner--just drinking milk and orange juice in the car while eating matzohs and oranges.
But the day ended with hope that everything would work out at Country Villa Mar Vista.


Country Villa is a challenging place for Mom.
After living on a floor dedicated to elderly dementia patients, she is now among a variety of people: elderly who have health problems but no loss of memory, younger persons who are disabled, psychiatric patients from age 50 to 90, and others with Alzheimer's or another form of dementia.
Is this mainstreaming good for her, as it is usually good for children with special needs?
Will it stimulate her mentally and challenge her to think and communicate better than on a memory-care floor?
Or is it too challenging for her?
And what about the many people here who are in full control of their mental abilities and have to put up with Mom at their table at meals? Is that fair to them?
My favorite person here is Phyllis Berg, a former public health nurse in her early eighties. She's blonde, blue-eyed, and graciously, originally from north of Minneapolis. She never married, has no children but has a nephew in the area.
She's here only because she has medical needs, such as pureed food, perhaps sometimes an IV.
Phyllis has been very kind and solicitous toward Mom.
"Why are you here?" I asked her, wondering why she couldn't be in an assisted living residence somewhere.
"For convenience," she said, not explaining further.
Perhaps she can't afford to pay for assisted living; this place is free to those with Medicaid and no financial resources.
I didn't ask her how she copes with sitting at meals with mindless people and lunatics.

Applying Al-Anon

Though I had been awake since 5:30 am, I lay awake after 1 am trying to figure out what to do.
Having just been to an Al-Anon meeting, I asked myself, "What would Al-Anon say to do?" and made a list.
1) Take care of yourself. (Well, I blew that one. Not able to relax and go to sleep.)
2) Turn the situation over to God. (Exactly how do I do this? Mom is not a teenager on drugs who has to learn to make her own decisions. I am responsible to make decisions about her care, with input from my siblings.)
3) Set a boundary. (Okay, I will tell Country Villa that I will move her to some other location, maybe Berkeley East, if these problems can't be solved.)
4) Let go. (Let her suffer and accept the reality of living in a nursing home? Don't try to take away her pain or solve her problem? Wrong! Forget that. But what if I cannot make her happy? Should I take her into my home? Should I hire private caregivers for her in skilled nursing?)
5) Feel your feelings. Sit with the pain. (This one I can do. It is so painful for me when she pours a cup of water on the table because it is not juice. When she is in pain and threatens her caregiver. When she reaches toward the medicine giver's face threateningly.)
At 2:10 am the half moon shines in my bedroom window, not far from Jupiter. If I just focus on the moon, the stars, and the rolling hills along the San Andreas Fault, I'll be fine.
Eventually Mom will die. Then I will be free of this worry for ten or twenty years until my own decline toward death.
With any luck, those will be happy and productive years.

Tuesday, April 24, 2007

A Huge Blunder?

Last night I wrote in my journal, "So she's now in Country Villa. Not that bad."

This morning I woke at 5:30 am, worrying about Mom. At 6:30 am I wrote in my journal:

What the hell have I done?
Skilled nursing?
How to shield her from this reality?
What will happen when she realizes her loss?
When they wheel her into the hall to sit in a row of living corpses to pass her time?
When she sits in the crowded dining room and looks around?

By midnight I was writing,

Horror. I have made a huge blunder, I think.

Earlier in the day I thought I had done well, accomplished something.
After visiting Mom briefly at Country Villa, I met the movers at 9 am at Ocean View Assisted Living.
By noon they were moving her furniture and boxes of belongings into her room at Country Villa. Fortunately, she was not present to see this; she was in the dining room.
The movers took her old bed and a bedside table to my house.
During the afternoon I set up Mom's room, put her clothes in the wardrobe, located her toothbrush, etc.
She was having a Lewy Body sleepy day and hadn't eaten any breakfast or lunch. At 3 pm I got her to eat a cookie and some milk and juice.
At 5 pm I was able to wake her up a bit. I took her to dinner, and she was ravenous.
The food didn't arrive until 5:20, so I gave her a can of V-8, then a cup of greenish horrible looking fake-lemonade. She drank it immediately and was reaching for the other cup, so I pushed it to her.
She took a drink from it but quickly spat it out.
"This is water!" she said. "I don't want water."
She poured it on the table. The attendant cleaned it up.
When her tray came, she ate well but at one point knocked over her cup of orange juice, which the attendant and I cleaned up.
I noticed that there was no one in the dining room to cut up the meat or to provide prompting like "Drink your juice." The attendant was only serving trays and picking them up, not interacting with the residents.
After dinner the toileting and care given by Mom's CNA, Christina Vasquez, was a disaster.
I explained Mom's care to Christina--remove false teeth, put them in cup with Efferdent, floss, brush--but Christina did not interject reassuring comments like, "Oh, I see. That's good."
Finally I asked, "When do you plan to brush her teeth? Now or at 9 pm when she goes to bed?"
Christina had a blank look on her face.
"Quando lavar los dientes?" I asked next in broken Spanish, and Christina answered immediately.
It's a big problem if Christina and I can't communicate, and even greater if Christina and Mom can't interact well.
Instead of toileting Mom myself, I decided to watch Christina do it. A kind supervisor, Linda, had assured me that the CNAs could do this, even in such a small space as this bathroom.
But Christina is a large person. She could hardly squeeze into the room around the wheelchair, which was between the sink and the wall, directly facing the toilet.
Once in, she had difficulty maneuvering Mom onto the toilet and standing her up again to put the disposable pants on.
One problem was that the bathroom did not have a bar located where Mom could hold onto it while her pants were being pulled off or pulled back on again. There was a short bar but it was behind the toilet to the right, where no one in a wheelchair could reach it.
Mom was expected to grab onto the edge of the sink and counter, about 8 inches wide, too big for her small, weak hands.
Another problem was that the SNF didn't have Depends, as I had been assured. What they had was refastenable "Attends," a loose padded rectangle with two tabs of tiny plastic tape on each side. After fastening the weak tabs earlier in the day, I noticed that one side popped open while I was fastening the other.
Note: Depends are fitted with elastic around the waist and legs; the tabs are Velcro and hold well.
As a result of all these factors, the toileting was difficult to watch. Mom had to stand there grabbing the sink for two minutes, and her feet got tangled and bent as she was placed back in her wheelchair.
She screeched in pain and then reached up to pull Christina's curly head of hair in retaliation, but Christina pulled back in time to avoid a yank.
In Mom's former residence, two people were often assigned to toilet Mom, but in this tiny bathroom two people wouldn't fit around the wheelchair.
Next we put Mom's nightgown on and took her to her recliner.
At one point I accidentally stepped on her foot, and she yelled, "Dumbbell!"
The medicine nurse came in to give Mom her evening pills, but Mom was upset and refused to open her mouth.
He and I cajoled her, trying to get her to take the spoon with applesauce and meds in it.
She took one spoonful and spat it out because the bitter medications had been crushed and mixed into the applesauce.
Then quickly she reached her bony fingers toward his face in a threatening menace.
Her eyes were rolling wildly as she clamped her mouth shut, refused more contaminated applesauce, and tried to defend herself against what she viewed as the second attack in a few minutes.
It's hard for me to see Mom in pain and combative, twice in one night.
At 8 pm I went late to an Al-Anon Parents meeting, sat there, and cried. Afterward I came home and reflected: This skilled nursing facility was supposed to be easier for me, not harder. The care was supposed to be better.

Farewell, Ocean View

I went to Ocean View Assisted Living at 9 am to pack up Mom's belongings and furniture and meet the movers who had agreed to deliver them all to Country Villa Mar Vista.
While directing the movers, I had to explain to each of some twenty Ocean View staff members that Evelyn would not be returning.
"She needs nursing care now," I explained. "She can get IVs there, blood tests, x-rays, catheterizations. It won't be as nice as Ocean View--the beautiful surroundings, the good food, the nice people. But she'll get the care she needs."
Everyone was polite but sad to see her go.
"We'll miss her," they said and meant it.
"If you change your mind, the room is still yours for thirty days," said Donna, the director.
I didn't know that at least one person predicted, "She'll be back in less than a month. You'll see."

Monday, April 23, 2007

Hello, Country Villa

A kind woman named Elena introduced herself as Mom's CNA for the evening shift.
As she was putting Mom's nightgown over her shoulders, we talked.
"You're beautiful," Mom said to her. "You have beautiful eyes."
I was happy that Mom seemed to be bonding with her caregiver.
I trusted that everything was going to work out.

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.

Friday, April 20, 2007

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.

Thursday, April 19, 2007

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!

Wednesday, April 18, 2007

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.