Wednesday, February 07, 2007

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.

Tuesday, February 06, 2007

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.

Monday, February 05, 2007

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.

Friday, February 02, 2007


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.