Wednesday, April 09, 2008

Rest in Peace

At 7 am I treated myself to a jog on the beach. The air was 45 degrees, the tide as low as I had ever seen it (sea level -.9, the newspaper said). Pelicans flew overhead and sandpipers hopped on the wet sand.
I picked up a paper-thin white sea shell. "As fragile as Mom's life," I thought.
At the Venice breakwater, I saw crabs with red and brown legs sitting in the deep crevices between rocks, just touched by the morning sun. A seal bobbed in the waves just beyond the breakwater. To my right someone took photos as he directed a young man wearing only white briefs into various poses against the sea and rocks.
I was jogging back at 8:15 am when Laquetta called me: "Your mother has labored breathing, and we would like to give her oxygen. Her respiration is 11. I've called hospice."
"Eleven breaths per minute? Oh, okay, yes, give her oxygen if that's what you do at this point," I said. "My sister's on her way, and I'll be there as soon as I can."
I drove home, changed from the waist up and depended on Roz's body mist to take the place of the shower I'd planned on.
"Cat, you're on your own," I shouted as I ran out the door. There would be no tube feeding today until maybe 10 pm, just like yesterday. So much for Dr. Dell's orders to wean her off the tube slowly.
Mom was indeed breathing with effort, stretching her neck muscles and heaving her shoulders a little when I arrived at 9 am. She had an oxygen mask over her nose.
The private caregiver and home health aide had just given her a sponge bath and were asking me which clothes she should wear today. I found the open-back pink hospital-style nightgown and gave it to them, with lavender bed socks; not a day for real clothes, I decided. They rubbed sweet-smelling body lotion on her as well.
Once she was resting and comfortable, I sat on her bed and held her hand, talking to her.
"It's Anne. I'm here and Emily's coming. Did you sleep well last night? You're having a tough time today, aren't you?"
She did not show any sign of hearing me; her eyes were half open and her mouth gaped as she struggled to breathe.
The hospice nurse, Yael, wanted to give her morphine to ease the troubled breathing, even though morphine would hasten her end.
"Wait for my sister to arrive," I said.
When Emily came, we prayed over her and concluded with the Lord's Prayer. I couldn't see any sign of Mom trying to say it with us, but I trusted that she could hear us even if she couldn't rally enough to speak.
As we ended the prayer, Emily and the hospice nurse Yael noticed that Mom's breathing was slowing still more. One deep breath, a pause with maybe shallow unnoticeable breathing, then finally another deep breath.
"No need for morphine," she said. "She's going very soon."
Then there was a longer pause between breaths.
"That's it," Emily said.
"But she might take another few breaths after a pause," Yael said. "They sometimes do that."
The pause continued.
At 10:15, Yael said, "I'm pronouncing her for 10:05"--the time of her last breath.
We prayed and cried over her and began making phone calls to our brothers, husbands, children.
I called the UC Irvine Institute for Brain Aging and Dementia because we had agreed to donate her brain to be studied to determine exactly what type of dementia she has and to correlate the symptoms she had so that doctors will be able to identify Lewy Body and other dementias more accurately in the initial stages.
They arrived about noon to take her body to Irvine in order to "harvest" her brain.
Then we made arrangements with the mortuary to pick the body up in Irvine and drive it back to Santa Monica for cremation.
Meanwhile, Emily and I debated when to have the service, checking with Bill and Jim to determine which days they were available. Bill works as a trauma surgeon in Tacoma this weekend, and he didn't think he could get a substitute. He's also unavailable April 17, 18, 19, and 20, in Texas to teach a class on surgery. Jim will be at a conference in Chicago April 21-25--so we had to choose between Monday, Tuesday, and Wednesday of next week.
We chose Monday, April 14, at 3 pm. Emily made arrangements with Brentwood Presbyterian Church.
Both Emily and I have meetings scheduled for Monday afternoon or evening; Emily will cancel her church meeting, and I will miss the quarterly EEWC-LA meeting planned for that day 5-7 pm.
I was looking forward to the book discussion on Frank Schaeffer's Crazy for God: How I Grew Up as One of the Elect, Helped found the Religious Right, and Lived to Take All (or Almost All) of it Back. I had expected to be one of about 5-6 people at this meeting--now I will miss it, and it's too late to reschedule. (Yesterday I distributed flyers at Fuller Theological Seminary, and earlier I'd done a mailing.)
Emily and I retreated to a local restaurant, Gilbert's El Indio, to have lunch. John joined us.
Afterward we went to the mortuary, Gates Kingsley Gates, to make arrangements. The official, Jerry Morton, said we needed a Durable Medical Power of Attorney to sign papers asking for a cremation, so I pulled a copy of the DMPOA out of my canvas bag full of file folders.
He took one look at it and tossed it back at us: "This is not a California DMPOA. It doesn't specifically mention permission to cremate. We can't use it."
We argued that it gave us the right to dispose of her body (as it did) as well as to make health decisions, but he said something like, "There has to be a California DMPOA," implying that he was only obeying the law.
Mr. Morton said he'd have to mail overnight copies to Bill and Jim, who would have to sign it with a notary watching them, and then mail it back--before any cremation could be done.
Emily, frustrated, left at 4 pm to fight traffic back to Mission Viejo. I sat there and endured more arrangements and conversation with the man, who looked 72 years old and had puffy hands--not long for this world.
"How can any human be expected to deal with arguments this on the same day as watching her mother die?" I wondered.
Then he left the room and came back saying, "I can't get a cremation until Wednesday. Instead of overnight mailing permissions back and forth, maybe your brothers could sign it on Monday."
I called Emily, who okayed this plan.
Meanwhile Emily had called Jim, who said the guy was probably just bullying us. "You should change mortuaries," he told Emily, but she said it would be too much trouble. We had already paid.
"I changed hospices, and that meant starting over again with new people. I can't change mortuaries," I told her.
Jim called Mr. Morton shortly after I left, and later on my phone machine I found a distressed message from the man.
Afterward I took my Al-Anon books and pamphlets to the room of the Wednesday night parents' meeting and left them there, calling several members to make sure they'd be taken care of.
Then I drove to Point Dume on Westward Beach, one end of Zuma Beach in Malibu. I parked and walked to my favorite place in the cliffs there at the edge of the beach. (Of course, there was some shooting for a film being done there, but they let me pass.)
I walked and delighted in the beauty: pelicans hanging motinless twenty feet over my head, seagulls and black cormorants, crashing surf on huge boulders, sunset and a crescent moon in the western sky.
There's a remote beach there at the very tip of the point, reachable only at low tide and by climbing over and around the boulders. For the first time I climbed out to it, needing to get away from the voices of morticians and caregivers and everyone.
I would have stayed too long, until it was too dark safely to climb back, but Roz called on my cell phone asking for more details on the day and Grandma's passing. She was the one person I wanted to talk to, so that was good. When I lost the signal, I started going back, just to get to the signal, and realized it was already almost too dark to see the rocks and safe places to step.
I called her and then sat at the foot of the huge smooth volcanic intrusion that forms one cliff until 9:30 pm, looking at the stars and thinking about life and death, about my mother no longer on earth, somehow transformed into a distant presence.
Orion, Mars, the moon, and the fading sunset--I could have stayed there happily forever, but the beach guard had said any cars remaining after 10 pm would be locked in.
I drove home and fed the cat.


/the Carmen Foundation said...

Greetings, I have been trying to comment on your moving "blogs" but this is the irst time my name and password allowed entry..
My husband is riding the LBD/PD 5 years aboard.
Sharing your journey has been so very helpful. Blessings, Marjorie Carmen/The Carmen Foundation

Anne Eggebroten said...

Hi Marjorie--

Thank you for letting me know that my reports have been useful to you.
Five years with this illness--my heart goes out to you. We only knew the diagnosis for four years, though dementia certainly started sooner.
May your rollercoaster journey be blessed with good moments and increasing insight.
Anne Eggebroten