Sunday, December 24, 2006

Christmas Eve with Ups & Downs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"Because you are our light," she said.

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

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

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

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

I lit my candle.

Saturday, December 23, 2006

Emily's Turn

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

Friday, December 22, 2006

And Finally, a CT Scan

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

Thursday, December 21, 2006

More X-Rays

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

Wednesday, December 20, 2006

What Is This Lump About?

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

Tuesday, December 19, 2006

Negotiating with the PT

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

Monday, December 18, 2006

Doctor Visit

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

Sunday, December 17, 2006

Discharge from the Hospital

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

Saturday, December 16, 2006


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.