Not a Fun Day
In February and March Mom was refusing her meds and scratching her caregivers, so her doctor recommended seeing a geriatric psychiatrist.
I delayed in making this appointment but finally called and couldn't get an appointment with the UCLA-recommended person, Dr. Stephen Chen, until May1. He takes Medicare, so there's no cost.
We needed help sooner than that, so I called a private doctor, David Trader, and took her to see him on April 4. He spent an hour with Mom and charged $295, but it was worth it.
After reviewing her meds, he added Namenda to the list and also ordered that she get a urine test just in case her misbehavior was being caused by a urinary tract infection.
The test showed a very serious UTI with bacteria that required an IV to administer the antibiotic. Thus the hospital visit, attempt to move her to a SNF, decision to move her back to assisted living, etc. (See April entries of this blog.)
Anyway, when May 1 finally rolled around, I took Mom to UCLA Medical Center to see Dr. Chen, so that her subsequent psychiatric visits would be paid for by Medicare.
But on that day I arrived late to pick her up, she insisted on a bathroom trip first (10 min. minimum), traffic was heavy, parking and finding his office was slow, and we arrived at 2:15 for a 2 pm appointment.
"You'll have to reschedule," the receptionist said.
So two hours were wasted without even seeing the doctor.
The rescheduled appointment was for June 12.
Getting to the Shrink on Time
Today I was determined to get to Dr. Chen on time, having been trying to get to him since March. But I still begrudged the time I had to put into this project, and I left the computer later than I should have.
When I arrived Ocean View Assisted Living at 1:15 to pick Mom up, I found her in the beauty shop under a hair dryer with her head full of rollers. I touched her hair: wet.
"She only needs five more minutes," the hairdresser informed me.
I tried to keep my cool, going up to her room to get her purse, sunglasses, and foot supports for her wheelchair. Then I sat down outside the shop and filled out the medical and psychological history forms (three pages) that I'd procrastinated on doing. I noticed she was wearing red velour slacks and pink striped socks with red SAS laced shoes--strange outfit. No nylon panty hose. Some caregiver other than Elisa must have been working today.
By 1:30 pm she was done and I had her in the wheelchair, heading for the elevator and the car. By 1:40 I was speeding down Wilshire Boulevard, competing for every foot of advantage in heavy traffic. At 1:55 I drove into the underground parking garage, found a space, and loaded Mom into the wheelchair. It was a miracle! We had a chance of being only a few minutes late.
Soon I was pushing her at a jog through the crowded halls headed toward 200 Medical Plaza, Room 2200.
"I'm going to fall out!" Mom exclaimed fearfully.
"No, you're not. You're fine," I panted.
When we arrived at the receptionist's desk, the clock said 2:04 pm. My watch said 2:07, so I was glad hers was a little behind.
I wanted to shout "Hallelujah!" but I was still nervous that she might declare us too late and make us reschedule.
Instead she started giving us papers to sign.
"Can she sign them?" the receptionist asked.
I glared at her.
Mom sat there in her wheelchair with her eyes closed.
Are you crazy?! I wanted to ask. Can't you tell she's 88 and has dementia? It will take fifteen minutes of coaxing to get her to sign her name five times.
"Okay," I finally said sarcastically, turning to Mom. "Okay, she can sign them."
"Well, do you have power of attorney?" asked the receptionist. "Because if you have the papers on you, you can sign them."
NO! I brought the heavy file of her last nine months of medical history but not the POA papers. Dammit!
"Yes, I have POA, but no, I don't have the papers with me," I said, trying to keep an even tone.
But then it occurred to me that they might be in the file somewhere. I pulled it out of my bag, opened it, and started shuffling through all the papers.
"Yes, I do have the POA documents with me," I told her with relief.
She photocopied them while I signed all the forms.
By this time it was 2:09 pm. Is she going to announce that we've missed the appointment? My anxiety level was still sky high.
I pushed Mom into the waiting area and collapsed into a chair for 30 seconds before Dr. Chen came out to bring us into his office.
"Would you like a mint?" I asked Mom, opening a packaged Lifesaver for her.
I'm more agitated than she is, I thought, pushing her in and trying to smile politely. He's going to wonder who's the patient here, her or me.
Talking with the Geriatric Psychiatrist
"Hello, Mrs. Eggebroten. I'm Dr. Chen," he said, extending his hand to her.
"Hello," she said, opening her eyes.
"I'm a psychiatrist," he explained. "I talk to people who might be feeling anxious or fearful or depressed. Do have any of those feelings?"
"Put your feet flat," she told him. She tells me and anyone else not to sit slumped with their legs crossed.
"Why?" he asked.
"Because it's better that way," she said.
"So do you have any of those feelings?" he asked.
"I don't want to think about being dead," she answered.
"Well, no one wants to die," he said. "Do you think about that?"
"Yes, I already died. I talk to my mother all the time."
"You feel you are dead?"
"No, not now. I'm just getting ready to be. I've got lots of dolls, and I'm going to take them with me."
"So you have a doll collection. Besides dying, is there anything else that makes you feel anxious?"
"Yes, my father told me I wasn't going to be a virgin any more. He told me to go spread-eagled, and I thought he was going to give me a piece of candy or something, but he didn't. That's why I want your feet on the ground."
"Oh," he said, uncrossing his legs. "Is that why you feel like you're dead?"
"I feel like I'm dead already, but I know I'm not because I have these good mints," she said, sliding the remains of the Lifesaver around in her mouth.
"What do you enjoy doing?" he asked.
"Playing with all my dolls," she said. "But the bad man steals them."
"The bad man?"
"The bad man has a collection too. He goes in my old room and sits there and steals my candy and spends my money."
"Who steals your candy?"
"The bad man."
"Every day? Do you mean your father?"
"He had just finished taking a shower and got finished shaving."
"Is this bad man mistreating you?"
"No, I won't let him."
"So you've been feeling agitated lately?" Dr. Chen asked, reading the medical history I had given him and looking at me.
"Several times in the last week she's been agitated, trying to get out of her chair or out of bed in the night," I explained. "Yesterday she took her rings off and lost them in her bed."
"They said I was already dead," Mom explained. "So I thought I should get my rings off so they wouldn't saw them off. They ought to be free so they could go to my daughters-in-law. And then I saw them walking around with them."
"Can you raise your arms for me?" he asked. "You know Lewy Body is related to Parkinson's?"
At this point Dr. Chen stopped interviewing her and discussed her medications with me. During most of the conversation her eyes had been closed.
"Her white blood cell count is low," he noted, looking at her records on line. "For her depression I think we should increase her Remeron to 45 mg. We won't add Namenda just yet. We can keep it as an option for later. There's another one that not an antipsychotic, Depacote, that we could use later to reduce aggression. She's probably on Exelon, not Aricept, becauses Aricept can cause vivid dreams."
"I want to leave now," she interrupted.
"She thinks her dreams are real," I said to him. "We don't want her dreams to be any more vivid."
"I want to leave!"
"We'll leave in just a minute," I said.
"We could also consider Razadyne," he said. "That helps with Alzheimer's. She's also at risk for Alzheimer's in addition to the Lewy Body."
"I want to leave! I want to leave!"
"We'll also consider slowly decreasing the Exelon in case it's causing her vivid dreams. It has gastrointestinal side-effects."
"I want to leave right now!"
"Okay, Mom. We'll get a banana split or something in just a minute."
"My diagnosis is severe dementia with Parkinsonism," he concluded. "At least it's that, whether or not she has Lewy Body."
"Okay, we'll go now. Thanks a lot," I said, wheeling her out.
And Now, for a Treat...
We arrived in the lobby of the building near the gift shop, and I noticed the chest full of ice cream.
"Would you like a Nestle's Crunch?" I asked Mom.
"Yes," she said.
I put one in her hand, taking off the paper, and bought an ice cream sandwich for myself. We both deserved a treat.
But the ordeal wasn't over.
Yesterday Dr. Rosen had told us to go get a catheterization done because of her possible bladder infection. She had called UCLA to tell the nurse we would be coming sometime today.
First a visit to the psychiatrist, then a catheterization, I thought. What a day.
I pushed her to 300 Medical Plaza and we went to the fourth floor.
"Hi, we're here for a catheterization," I announced, handing the receptionist the orange sheet Dr. Rosen had given to me yesterday.
He looked puzzled and went to consult his supervisor.
We waited twenty minutes.
Then a nurse came out and said, "I don't know if they told you, but you need to make an appointment. You can't be seen without an appointment."
"Oh, okay, fine. We can make an appointment," I said. Actually that's a relief, I thought, if she can't have a catheterization done today. It just means that I lose tomorrow morning to another trip over here.
I opened my appointment book and waited to make an appointment, but then the nurse reappeared.
"You know what, we'll go ahead and do it today," she said. "But you need to make an appointment for next time."
"Oh thank you!" I said, trying to look grateful for the renewed prospect of a catheterization.
We sat down to wait again.
"I have to go to the bathroom," Mom demanded.
"No, let's just wait for the nurse," I said, fearful that a trip to the bathroom might empty her bladder, rendering the catheterization pointless. That happened last April.
"Take me to the bathroom," Mom insisted. "I have to go to the bathroom."
Then it hit me: what if she had a BM in her Depend? I didn't want the nurse to take us in for the gift of this procedure and then find a diaper full of mess.
We went to the bathroom, where indeed she had some BM in her Depend. I cleaned her up and put a new disposable on her, returning to the lobby.
Suddenly I realized that that orange form I had given them wasn't an order for a catheterization. It was just the check-out form that I should have given to Dr. Rosen's appointment clerk yesterday.
If I had waited to check out properly, they probably would have called to make the appointment for today and would have given me the right paperwork to have this catheterization done. Instead I had rushed out to get to my own physical therapy appointment.
Oh well. Soon we were called for the procedure.
In the examination room, I lifted her up onto the examining table and the nurses and I proceeded to peel off her slacks and Depend. They swiped her pelvic area with iodine, noting that a catheterization poorly done could introduce bacteria and cause a bladder infection. I didn't want to hear that.
Mom whimpered and yelped with pain but they managed to get the plastic tube in and obtain a bag full of urine.
"It looks cloudy," the nurse said. Sure enough, the urine was too dark a yellow/orange and also opaque. She probably had a UTI.
They completed their work, I dressed her and got her back in the wheelchair. Exhausted, I took her back to the car, buying a raspberry iced tea for each of us on the way.
She was late for dinner. Fortunately, Connie, her private caregiver, was there to take over. I'd forgotten that she comes on Tuesday and Thursday.
That meant I had to go to the bank and get cash to pay her for this week; that way I wouldn't have to do it on Thursday.
I trudged off to the bank and back to Ocean View, finally getting home at 6 pm.
It was a doozy of a day.