Wednesday, April 30, 2008

After All

After all the confusion of hospice, meds, caring for someone who is dying, my life is quiet now. Mom died three weeks ago today.

She stays with me in two ways.

First, I'm surrounded by stacks and baskets and boxes of stuff from her apartment (as well as more boxes of things from when we moved her out of her home in 2001), including some twenty framed photos of her that stand all around my living room on tables, window sills, etc. I need to sort and discard and pass along many of these things, but so far I haven't had time. (There are two weeks left in the semester of the course I am teaching.) I also need to call several of her old friends and report her death to them... not done yet.

Second, I keep thinking especially on Sunday or at 4 pm on other days, "I need to go visit Mom--wait a minute, I don't need to go visit her."

The constant sense of responsibility for her hasn't yet left me. I keep thinking I need to buy Depends or V-8. At this time in the afternoon, I start feeling guilty for doing whatever I'm doing and not yet going over to her residence. But then I remember she's gone.

Aisles of the grocery store or drug store trigger automatic responses: "What's the price of Depends?" It takes will power not to go check on the price, not to buy flowers to take to her, not to buy Hershey's kisses to fill the candy dish for her caregivers.

I haven't stopped by her place to see my friends there who took care of her: Marnie, Susan, Esther, Stan, J.R. The last time I was there, nine days ago, it seemed as if she must be just around the corner in her room, waiting for me, the same as ever.

Being so close to where she lived, I felt her absence more keenly.

I'm grateful that she's not suffering and that I have my time for so many other things on my To Do list--but it takes time to get used to her not being here.

Friday, April 25, 2008

She's History

Now that Mom is gone and the busyness of her memorial service is over, other concerns absorb my attention.

A crisis with daughter #1 absorbs all my attention for a week, and I realize that I'm not thinking about Mom at all.

Then it blows over--actually a false alarm--and I remember I need to grade the midterm I gave a few days ago. And I should order plane tickets to the graduation of daughter #2.

The backlog of other things to do leaps into mind: 2007 tax return, visas and hotel for our big summer trip, preparation for a speech on abortion at PARO (Presbyterians for Reproductive Options, meeting during General Assembly in June).

When I do think of Mom, I regret not thinking of her at all for half a day. She would hate that! Always she wanted to be important, but now she is not the focus of my attention.

She's history.

Saturday, April 19, 2008

Dementia Lives On

I thought my walk with craziness was over, but I feel surrounded by it every day.

I take on too many tasks, stay up too late, get up to teach a class on two or three hours of sleep--and realize I am now the carrier of dementia.

I go to Build a Bear with my oldest daughter buy a graduation dress for her chihuahua to wear to her sister's graduation from college on May 18: should it be a spaghetti strap floral print or a more formal pink satin? "My dog can't wear anything tacky because it reflects on me," she says. I'm reeling from this craziness.

At the parent Al-Anon meetings I attend, we understand that we are all crazy over how to deal with addiction in our children. Is she or isn't she using? Should I check on her, do an intervention--or let her have the dignity of her own mistakes? Should I cut off his funding because I know he's using? We recite Step Two: Came to believe that a power greater than ourselves could restore us to sanity.

John goes into his office Saturday at 5 pm and stays until after midnight. Craziness again--workoholism.

When I visit the other residents where my mother used to live, my heart aches to see the behaviors of Alzheimer's, Lewy Body, and other forms of dementia. That world lives on, even if I don't go there. The caregivers report to work every day.

Dementia lives on.

Friday, April 18, 2008

Ashes at Last

I went to pick up Mom's ashes this morning.
The mortuary didn't call me to say her remains were available, but her body was cremated on Wednesday at a crematory 20 miles from here in North Hollywood, so we figured today was the day to try to claim them.
After calling, I drove over to Gates Kingsley and waited as they retrieved them.
While waiting, I surveyed the various brochures and free promotional items.
Wow--a monthly planner, courtesy of your mortuary, along the lines of Psalm 90:12, "Make us realize how short life is...."
I waited in the same room where Emily and I had that difficult interaction with Jerry Morton nine days ago.
I noticed a fake white rose in a small clear vase half-filled with plastic water covered by a layer of dust.
"Here are the cremains," the staff person said, returning. "And here's your permit to carry them."
I signed more papers and walked off with the labeled plastic box inside its knit velour green bag, cradling it in my arms like a baby: the earthly remains of my mother, 7.5 pounds.
I set it on the front seat where she had sat twelve days earlier, where she loved to sit, riding around in my minivan.
At home I found that it was too big for the elegant urn that my parents had brought back from Japan fifty years ago, so I set both the urn and the green bag on my mantlepiece.
What a relief to have her remains back from that mortuary!
In June we will drive them to Colorado and scatter her ashes on our property near Trout Lake, as she had requested.

Wednesday, April 16, 2008

Odd Moments

Today is a week after my mother died. I woke up realizing that the storm is over, no guests are in my home.

Jogging on the beach at 8:15 am, I remembered getting that phone call on April 9: "She is having labored breathing."

Fog shrouded the Santa Monica mountains, partially blocked the rising sun.

One dark dorsal fin, then another appeared above the sea 20 yards beyond the Venice breakwater: a pod of seven to ten dolphins. I jogged north on the wet sand to keep up with them.

Ah, to be a dolphin slipping in slow arches through the blue water!

Then, in the grocery store buying milk and tofu, I passed aisle 12 where the Depends are and realized: I will never buy Depends again. Strange to feel sad about that. On the fruit juice aisle: no more buying of eight small cans of V-8.

Tonight at the Al-Anon meeting I shared about making an amends to Mom a few days before she died: "Mom, I'm sorry I pushed you so hard to eat, drink, and take your meds in this last few weeks. It was hard for me to accept that you are done with those things, but I get it now."

Afterward I needed to make a call to Marie in Buenos Aires and wanted to do it by pushing one button on my cell phone, but John insisted that I use the 800 number Marie sent us in an email in the last few weeks.

I cried at that point: why couldn't he be easier on me, bereaved and touchy?

I have papers to grade tonight and want to do a few blog entries. All I really want to do is sleep.

Monday, April 14, 2008

Memories of My Mother

My reflections at the memorial service for my mother:

I’d like to talk about six qualities of my mother that influenced me most.

1 Her generosity, impulse to help others
One day in Boulder when I was 10 or 12 years old, “I gave away your mittens and the sled to this poor family up in Nederland. But don’t worry, I’ll buy them for you again.”
· Giving her time as a visiting nurse—old man dying of cancer, poor families with 5 kids in apt.
2 Her seriousness about her career as a nurse
· When I was 13 and discovering nail polish, I asked her why she didn’t polish her nails. She laughed and said she had no time for such frivolous things nor for the P.E.O. clubs and parties that were her mother’s life.
· In 1943 she enlisted in the Navy as a nurse, much against the wishes of her parents. She loved being a WAVE, teaching maternity nursing in Bakersfield (she always loved newborns), and later in Baltimore was courageous about leading her students into the ghettos to teach them public health nursing.
· But after retirement at age 60, she did volunteer work with Red Cross and Meals for Wheels, did inspection of nursing homes, served on the board of the PEO Chapter House in Colorado Springs. She also sewed doll clothes and smocked dresses and baby clothes for grandchildren, did needlepoint, even joined PEO. A women’s circle at First Presbyterian Church of Boulder met in her home.
3 Her valuing of education.
· When I was about 11 or 12, she told me, “You need to go as far as you can in education, otherwise you’ll have to work for someone you don’t respect.
· Earning MS from 1958-60 with four children 12 and under.
4 Her mistrust of doctors “often with the comment, “He thought he was God’s gift to women.” Or he didn’t bother to come to the delivery—I had to catch the baby.”
· in her last year or two of dementia, except John, Duncan, her sons and brothers… chased out Roche Vermak and chaplain from hospice… was initially not too friendly to grandsons she hadn’t seen recently
· Get that bad boy out of here! He’s going to eat all our bacon! (Beulah ________ )

5 Her impulse to control others, often with a touch of anxiety
· Like her mother, probably her grandmother Martha Brown
· Fearlessness, fierce determination—buying wall-to-wall carpet herself in 1960s though salesman wanted her husband’s signature
· Keeping Kermit working, moving to Bakerfield, then Baltimore for this purpose, buying and selling homes in those cities.
· Nursing Kermit until his death

She slipped into dementia in the years after his death:
· Reader’s Digest sweepstakes
One day in about 1997 she called me and said, "Hi, this is your mother. Don't tell anyone, but I am going to New York. I got a letter from Reader's Digest today saying I am definitely the winner."
"Oh, that's great. Congratulations. But are you sure? What did the letter say?"
"I have it right here. And I've decided I'm going to wear the red suit with the pearls. But of course I will have to pack a suitcase, and I need to get to Talbot's because I don't have a smart-looking winter coat--"
"Could you just read it to me?"

· Rebuilding her cabin at Trout Lake -- She was unstoppable; she got an architect to draw up plans; she paid for them and was ready to take bids from contractors when we were finally able to convince her that the money she had in savings and the cost of the house didn't match.
· Writing her autobiography

7 Another quality I remember is her concern for family status, for making a positive impression on others—
· When she was writing her life story, she insisted on viewing her marriage and her life as having been lived “happily ever after.” Originally I thought her book would be a family history, but as we were finishing it, I finally accepted that it was going to fall into the genre of romance. It had to be the Adventures of a Telluride Native—struggles and serious problems had to be left out. I found a one-sentence summary of the book: “Kermit and I were married on Oct. 19, 1947. There followed a happy and interesting life blessed by four children.”
· The best stories she left out of her book because they did not reflect well on her or the family. For example, she would often tell me about the Telluride High band competing against other bands in Grand Junction in 1935. They rode there on a school bus; something was wrong with the reed of her clarinet and the band director told her, "You just sit there and do the fingering, but don't you dare make a sound." Once she continued the story further: “My mother went along to ‘look after me,’ but really to do some shopping in Grand Junction. We had no shoe stores or dress shops in Telluride. My friends and I went to Woolworth's, and we were shoplifting--"
"You were shoplifting?" I asked.
"Yes, we were regular delinquents. We were putting things in our purses. I wanted to buy a present for my mother, but it was the Depression, and no one had any money. I saw these beautiful hair combs, the kind you put in your hair when it's done up. They had pearls set in them. I put one in my purse and came outside and showed it to my friends, and then I went back in and got another. When we were home, I gave them to my mother, and she wore them proudly for many years in Telluride--but probably everyone in town knew they had been stolen. Don't put that in the book."

Well, Mother, it’s not in the book, but these things will forever be in our memories of you.

Sunday, April 13, 2008

Friends and Family

Day Three after Mom's departure was much easier.

My cousin Martha arrived from Colorado Springs, and she shared great memories of my mother's kindness to her children while traveling between Boulder and the Springs caring for our grandmother in her declining years. Grandma lived in the P.E.O. Chapter House there, and Mom was on the board of it. In her early sixties, Mom still had no grandchildren and enjoyed buying toys and sewing doll clothes for Martha's three daughters, Theresa, Gayle, and Sarah. She even stayed with the girls when Martha went into labor with her fourth child, Cory.

Sarah came with her and took over care and tube feeding of Celeste, including subcutaneous hydration. She and Martha also sorted and set out Mom's doll collection in the glass cabinet for display as more friends and family arrive. Each granddaughter or niece will be invited to select and keep one of the dolls, long-forbidden behind those glass doors.

Diane, one of Ellen's godmothers, called to say that she and Roz's godmother Judith would be driving down from San Francisco and Watsonville with another old friend, Deborah, whose first daughter was born two weeks before Roz.

At sunset Martha, Sarah, and I went on a beautiful, peaceful walk on the beach and then went to Mom's room to remove the last things--clothes on hangers, thirty bottles of Ensure (what was I thinking?), and kitchen cabinet items.

My daughter Roz arrived home in the late evening along with her chihuahua, Gracie, bringing a wave of happiness. John had driven to Long Beach to meet her Jet Blue flight.

Harried but stoic, John has decided to be the hero of this perfect storm, buying legal pads for To Do lists, making a schedule sheet for train and plane arrivals and departures of family and friends, mowing the lawn, insisting that the Asian chicken salad from Pick Up Stix for Monday noon had to be ordered today and finally doing it himself.

Necessary tasks happened easily: I called a local moving company at 11 am, and by 2 pm three men and a truck had arrived at Mom's room to remove the furniture and most of the boxes.

After a frantic search for the best photo of Mom, I showed up at my local one-hour photo shop at 5 pm asking for a 12 x 20 print to stand on an easel at the memorial service. I had the print an hour later.

The day had its humorous moments, however: at 10 am when Martha and Sarah arrived, I was still in my pajamas, rushing around straightening the house after writing a few blog entries starting at 5:45 am.

At 10:30 the doorbell rang and it was two young girls who started saying something about Merry Maids. I almost said, "No, I can't make any donations today," ready to close the door, before realizing that they had arrived to clean my house. John had ordered house cleaners, and here they were. I was still in my pajamas. When I finally started my bath, the house was bustling with people.

Fortunately, the Merry Maids left two hours later, having cleaned the bathrooms, emptied waste baskets, and vacuumed a bit. John thought they were actually going to clean the hardwood floors, but I wasn't surprised that that job still awaited me.

The hardest moment of the day came when I was skimming this blog, looking for a good photo of my mother. Instead of finding any usable picture, I found myself reading the first few lines of various entries over the past three years, and the full pain of so many difficult days of care swept over me. How did I ever get through it? How did Mom?

I'm so grateful those days are over.

Saturday, April 12, 2008

LBD: The Final Plunge

When Dr. Claudia Kawas of UC Irvine Medical Center was diagnosing Mom in February, 2004, she described a major difference between Alzheimer's Disease and Lewy Body Disease.

"With Alzheimer's," she said, sketching a straight line at a 45-degree angle on a piece of paper, "there's a slow and steady decline toward death. Patients lose short-term and long-term memory, then the ability to talk, and finally the ability to swallow. But with Lewy Body there's usually a long plateau followed by a sudden drop. In the end, these patients also lose the ability to swallow, so they can't eat or drink."

She drew a horizontal line that turned 90 degrees down.

At the time, I couldn't really imagine what she was describing, but now four years later, I have observed the slow decline of many residents on Mom's floor of her assisted-living residence, and in the past four weeks I have witnessed the sudden drop.

On Mom's 89th birthday, Wednesday, March 12, I took her out to lunch and realized for the first time how slow she was in chewing her food and swallowing. She ordered steak and shrimp, did not touch the bites of steak I cut up, managed to eat six or seven shrimp, cut into bites, chewing each for a long time.

I was impatient with that two-hour lunch; she ate only a couple French fries, a spoonful or two of cottage cheese, a bite or two of cornbread. Often the chewed food fell out of her mouth. The easiest thing for her was the tall glass of cold milk; she drank that down and liked it so much.

Two days later at the P.E.O. meeting at my house, she asked to go back to her residence moments after I wheeled her into the living room where the ladies were gathering. When we had refreshments, all the fruit and coffee cake she ate fell out of her mouth onto her blouse. It was embarrassing, and I decided I would not take her to any more of those meetings.

A week later I had placed her on hospice at the advice of her geriatrician (accepting the suggestion she had actually been making for over a year). She was eating less, so we started feeding her and argued with her, "Just take this spoonful!"

A few days later we bought Ensure, and she drank it down hungrily, enjoying it.

But a week later she could only drink it slowly, a sip at a time. We put her on pureed foods and thickener in her liquids. The hospice doctor said she might aspirate some of her liquids into her lungs and then get pneumonia.

The last food she ate was March 31 and April 1, when Connie got her to eat a quarter cup of pureed food each day, spoonful by slow small spoonful.

She was also refusing her pills, but on Thursday a week before her death, she swallowed all of them quickly, and on hearing the report, I warmly congratulated her. "Good, Mom! You took all your meds this morning."

"I did it for Jim," she replied.

Those words told us that the not swallowing was partly inability and partly her own decision that she wasn't going to prolong her life any more by trying to eat and drink.

About that time, when Marnie Reid, the lead caregiver, was trying to get Mom to take her meds, Mom suddenly said to her, "Why?

"It's good for you," Marnie answered.

But Mom calmly told her, "I'm ready." At that, Marnie had to hold back tears.

We gave up on solid foods, pureed foods, and meds; then we gave up on Ensure and only tried to give her milk and water in spoonfuls, then droppers squirted into her mouth for the last five days of her life.

Mom's final plunge took only four weeks--from fairly normal but light eating to no drinking or nourishment at all--and death.

Four years ago Mom's diagnosis was tentative, and we decided to have her brain studied after her death to determine what kind of dementia she had. After all, there are implications for the next generations.

But her sudden decline is proof for me that she indeed had Lewy Body Disease.

Control--or Surrender?

As the family gathers and the memorial service approaches (3 pm on Monday, April 14), I want everything to go well.

I want the flowers to be beautiful, photos to be displayed well, music and sharing of memories in the service to go well, the cookies and coffee after the service to be appropriate.

I want stacks of my mother's book to be available to those who attend the service. She was so proud of Adventures of a Telluride Native, and I put so much effort into it. I have so many boxes of it in my garage! What better time to get rid of some copies--instead of distributing a little card with her photo and a few facts about her life, a whole book.

I want the buffet at my house beforehand to be relaxed and comfortable, to provide enough appropriate food (plates of cheese, sliced meat, and fruit? or Asian chicken salad from Pick Up Stix?). I want the family gathering in a restaurant after the service to go well.

In fact, I want everyone to be happy in sharing their sense of family as well as their grief--all 20-30 of us and friends who will gather as well. I want to control everything and make everything perfect!

But--uh--maybe I'm going to need to give up that control.

Maybe this is going to be a big week for Al-Anon style acceptance of "the things I cannot change" and recognizing that the only thing I can change is myself. I can give myself peace of mind, no matter what other difficult interactions occur, by accepting what comes and trying to stay close to God for sustenance and guidance.

Today's reading in Courage to Change: One Day at a Time in Al-Anon II, advises "...surrender, accept my discomfort, and pray for guidance" (April 12, p. 103).

These few days will be an excellent opportunity to grow in that ability to surrender, accept discomfort, enjoy the good moments, and pray for guidance.

As Psalm 37 puts it, "Delight in YHWH, and you will be given the desires of your heart.... Rest in YHWH, and wait patiently."

For starters, I can give up having copies of Mom's book available at the service. Emily has strong feelings about not wanting it there.

But for anyone who wants to read about Evelyn's childhood in Telluride and her years as a Navy nurse and professor of nursing, as well as look at early family photos in Telluride, used copies are available from Amazon.com (under Evelyn Gustafson Eggebroten), and new copies can be ordered for $20 from Western Reflections Publishing Company, www.westernreflectionspub.com. The mailing address is Western Reflections Publishing, P.O. Box 1149, Lake City, Colorado 81235.

Adventures of a Telluride Native by Evelyn Gustafson Eggebroten (Boulder, Colorado, 1999).

Don't Die in LA County

The hardest moments of each day come at dawn, when I can't help remembering where Mom's remains lie at the moment: in a wooden coffin in refrigerated storage at Gates, Kingsley & Gates Moeller Murphy on Arizona Avenue at 20th St. in Santa Monica.

When my Aunt Grace died in Boulder three years ago, her remains were cremated nearby two days later, and we respectfully buried her ashes in the cemetery in Boulder a few days after that.

But as my friend Jerry Morton at Gates, Kingsley informed me and Emily a few days ago, there's a waiting line to be cremated in Los Angeles County. His mortuary uses two crematories, both of which were so much in demand that it would be at least a week until Mom's remains could be cleansed by fire.

On Thursday, the day after she died, he called me at work to report the good news: "I got a cremation for Wednesday!"

At first I was confused; it sounded as if he was going to be cremated. Then I realized I was supposed to respond by congratulating him on his good work at getting one of the last available slots for a week after she died.

Maybe he expected me to say something like, "Oh, that's great! I'm delighted!" I mumbled some kind of thanks.

My brother Jim also has strong feelings about her body lying in a refrigerator for a week: "It's disrespectful to her."

Like the good Norwegians, Danes and Finns that we are ethnically, we want that funeral pyre lit up now. We don't want her body to decay in a casket underground, nor do we want it to languish in a refrigerator. For our comfort, we want ashes and we want to take them to Colorado as soon as possible. Her wishes were that they be scattered near Trout Lake, twelve miles south of Telluride, where she was born.

We will all have more peace when "dust to dust, ashes to ashes" is accomplished.

Yesterday at 5:45 am I woke and could not help thinking about where her fragile body lies, how it looks, her mouth open for air, her eyes closed, her white hair scraggly even after our heroic permanent wave appointment.

I cried out, speaking to Mom instead of about her for the first time since she died: "Oh Mother, I wish your ashes were in Colorado."

Friday, April 11, 2008

I've Grown Accustomed to Your Face

Both yesterday and today, about 4 pm I caught myself thinking that I should go to Mom's residence and check on her. It's a habit--something I do about that time every day.

I went to her room yesterday to move some things; it was so peaceful to feel myself back in her presence.

Today at about 4 pm it seemed so natural to be going to Mom's residence, so unbelievable that she is not there and that soon I won't be going at all. My sister and her husband and I began sifting through the collection of clothes and jewelry and dolls. It's too soon for me to dismantle her room with all her possessions, but I want the refund of maybe $150 per day,and I want the visiting relatives to see some of the old family photographs and other treasures when they gather at my house.

When I jogged this morning, the lavender ocean was glassy and pink with purple in the pre-dawn light. A lone dolphin swam north following the shore. On the Venice breakwater, two crabs poked their large pinchers at each other, activated by my presence. A cormorant swooped down and briefly held a large crab, which struggled and freed itself.

Those were the moments that sustained me as I struggled to edit the obituary written by my brother Jim so he could send it to the Denver Post and Boulder Camera before he leaves to drive to California; as I discovered that my MSN software is corrupted and not receiving or sending email; as my husband and I labored to transport Mom's heavy, glass-windowed doll cabinet from her room to our house.

One other happy moment: ordering sprays of pink and white flowers on easels for the memorial service. Mom loved pink.

Perfect Storm

I guess the formula is about 2(Th) + d = Mg.

You take the number of people that usually gather in your family for Thanksgiving, multiply it by 2 or 3, add the death that has just occurred, and come up with the memorial gathering.

Just when my house is at its messiest because I have put so much time into accompanying Mom through hospice, I'm going to have all my relatives arrive, eight or ten of whom have never seen my home?

Then there's the sibling rivalry in Mom's generation; the family history and sibling rivalry in my generation with my two brothers and my sister; then the relationships in my kids' generation.

On the one hand, there is the joy of seeing people again with whom you have shared your entire life history. All seven of my female cousins will be together for the first time since 1966--I'm really excited and grateful for that. Three are flying in from Washington state, one flying from Colorado Springs, and one (who still lives in the Cortez/Mancos area where our family lived one hundred years ago) taking Amtrak from Gallup, New Mexico, to Los Angeles.

On the other hand, long-forgotten hurtful words and deeds of many years ago suddenly resurface between siblings and others. I love each of my immediate and extended family members, and I want to spend time with them; they are willing to spend time and money to gather in order to honor my mother's life--but this comes at a time when each of us is most vulnerable, feeling pain. It's a recipe for difficult interactions.

In addition there's a new kind of Russian roulette: guessing which ones of us will be the next to get Lewy Body Dementia. Mom's father and his mother probably had it; some of us in our generation will also get it.

Meanwhile, we go through the craziness of cleaning the house for a big family gathering.

John asks gingerly, "Would you mind if I hired a housecleaner?"

I nod okay though for 32 years I have resisted paying someone else to do work that I should do my self. I don't have much opinion these days. Call it acceptance, call it lethargy. I'm an observer of life only. The gathering will occur and we will celebrate the family ties, whether or not I have a clean house.

I will work with the housekeepers and try to clean everything up, but the storm will arrive and then be over.

"I take shelter in the shadow of your wings until the storm is over." --Psalm 57:1.

Perspective

I received this email from the Women's Basketball team coach at Cal State University, Northridge, today. It reminded me that my mother's passing after 89 years is normal and only a little sad. Others, including my bright and responsible student Shanice, are facing real tragedies.

To Whom it may Concern:

This is Staci Shultz, head coach of the Women's Basketball team at CSUN. I am sending an email to the professors of Shanice Howard because she has recently experienced a family tragedy of her younger brother being murdered last week and she has returned to her hometown of San Diego. I have been told that the funeral is tomorrow and she will hopefully be returning to campus and class on Monday, but it is not definite. I am aware that she may have missed some assignments, and hopefully when she returns she can make these assignments up. If there are any problems or concerns feel free to email me and we can hopefully solve them. Please keep Shanice and her family in your blessings.

Staci Shultz
Head Coach
Women's Basketball

To my blog readers: please pray for Shanice and others who are facing the death of a young family member and perhaps even a life deliberately taken by someone else.

Thursday, April 10, 2008

Afterward: Day 1

After teaching, then making motel reservations for arriving family, going to my usual Thursday pm therapist appointment, and fielding phone calls on my cell, I arrived home at 8 pm to find eight messages on the house phone:
1. From Herschel: "What time on Monday is the funeral?"
2. From the mortuary: "Hello, Evelyn, it's Jerry at the mortuary. I just had a rather disturbing call from one of your brothers, and i want to touch bases with you... "
3. "Anne, it's Jerry again. I would like to chat with you this morning."
4. My brother Jim: "Basically, I'm flexible if you guys need to wait another week for this service...."
5. Sharon B.: "Precious Anne, this is Sharon calling. I'm going to try to come on Monday, so I'm very much looking forward to touching you again. Tears and tenderness my dear friend. Much, much care to you and all of your family."
6. Joyce, an Episcopal pastor: "I've heard word from Calvin that your mom passed away. You are in our prayers--I'm sure it will be glorious.
7. Dorothy from P.E.O.: "Hi, Nina called earlier to say Evelyn was at peace, and this is so hard on you... The Lord will give you, you know, strength to do everything. You've taken such good care of your mother--it's just remarkable. You have no regrets--that I can see--from what we've seen of you and Evelyn in our meetings...."
8. My cousin Gene: "We're just trying to find out a little bit about where the service is going to be and when..."

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.

Tuesday, April 08, 2008

A Good Day

After blogging and grading one set of papers, I went to bed at 4 am and got up shortly after 6 am feeling refreshed. Sometimes I'm so grateful for two hours of sleep.
I left the house at 7:30 am, as did John. Neither one of us did the cat's tube feeding.
"Well, they said to wean it," he said.
I thought to myself, "That's cold turkey, not weaning." I knew I wouldn't be back until evening.
My class went well; I stayed until 2 pm so a student could take a make-up midterm.
Then instead of driving straight to Mom's residence, I drove to Fuller Theological Seminary to pass out flyers for an EEWC meeting this coming Monday. (See www.eewc.com.)
Back in Santa Monica at 4:30 pm, I went directly to Mom's room.
I thanked and dismissed the private caregiver, wanting to sit alone with Mom myself until the evening person arrived at 7 pm.
Mom wasn't talking, just responding with nods to questions. She seemed quiet and maybe bored but okay. I wondered if maybe she'd like to leave the building, get out for a ride to my house.
"Would you like to go to my house?" I asked her.
Her eyes opened wide, her face suddenly expressive and smiling; she waved her arms and tried to talk. It was a clear yes, so I removed her blankets and pillows, pulled the wheelchair in.
As I started to move her legs off the bed to pull her into a sitting position, though, she cried out in pain, the most pain I've been her express in days.
"Oh, I'm sorry," I said. "That's painful for you. Maybe it's not a good idea to go to my house."
I called the meds dispenser, realizing that Mom probably needed morphine. She hadn't had any since noon.
Chhandita gave it to her--0.25 ml in her cheek (5 grams).
Then at 6:15 pm the night caregiver came in, and she and I settled Mom into her bed for the night. I said we would skip the sponge bath, trusting the Home Health Aide in the morning to do it. Clarence Torres, the aide, said she had enjoyed reading Mom's book the previous night during her 12-hour shift. I noticed that the stack of nine books that I had set out had disappeared, so there was none for Clarence to look at tonight.
Though I'd intended just to go home and sleep, I told Clarence I would return with 10 more books.
When I returned and parked in front of the building, I saw a person with an unfamiliar face, very angry looking, parking near me. Inside, she was taking my elevator; I wondered if she was the hospice chaplain, the only hospice person I hadn't met yet.
She turned out to be an LVN, Nellie Davydova, sent from hospice to check up on Mom after the director of Mom's residence called to complain that we hadn't seen a hospice nurse since last Thursday. Being a novice at this hospice thing, I didn't know we were supposed to see the nurse more often. It turned out that she was upset at being delayed in heavy traffic.
The first thing Nellie did was count Mom's respirations, only 12 per minute. Then she scolded me: if her respiration is 12 or below, don't give her morphine. It can slow down the breathing too much.
"Wow, no one told me that!" I said. It was scary--my ignorance could have killed her.
We had been so alone this long weekend--from Thursday at 6 pm until Tuesday at 7:30 pm, no RN or LVN from hospice had paid a visit. The only one we'd seen was this RN on Tuesday evening.
After taking Mom's vitals and making various health arrangements, Nellie left.
At that point I went home and collapsed into bed. No dinner, no nothing. It was 10 pm.

Monday, April 07, 2008

Cat Pee

When I got home at 8 pm tonight after an hour of setting things up for the night with a new private caregiver 7 pm to 7 am, I felt sad. Mom is drifting away from this world: weaker, not speaking much, sleeping more.

I wanted just to lie down and cry, but little by little, tasks pulled me into a more normal path: taking in the mail, boiling the shrimp so there will be some kind of food available when John gets home at 10 pm, squirting the puree down the cat's feeding tube.

I knew I should eat, but only comfort food seemed possible: two leftover squares of a Hershey's bar, then a smoothie made of strawberries, plain yogurt, and orange juice.

I postponed grading papers and preparing for tomorrow's class in favor of an entry or two on the blog.

Just before sitting down at the computer, however, I carried some clean sheets to the linen closet, where I found the mess I had made at 2 pm: half the sheets in the closet were on the floor because I had pulled them out to find two matching sheets and a pillowcase to take to Mom's residence for the caregiver who will work 7 pm to 7 am.

Wearily I started putting them back in the linen closet until I thought I smelled something wrong. Cat pee? No--but some of the sheets were definitely damp.

I collapsed on the floor amid the sheets and cried.

"I can't do it!" I kept saying. "I can't do it."

Last night after sleeping on a futon next to Mom's bed, getting maybe three plus three hours of sleep, I'd come home planning to take my first bath in two days and sleep. But I decided to feed the cat first, before bathing and putting on clean clothes, and sure enough, the tube clogged and puree squirted out all over me and the cat.

At least I was wearing yesterday's clothes, but I'd had enough. In a burst of energy, I decided to take the cat to the vet before my bath and nap, in order to get that damn feeding tube out. The vet said the tube would be in two weeks at most, and today was the day. If the cat could just go outside during the day and eat its own food, things would be better. Tube feeding a cat while watching Mom starve to death is too much.

But the vet refused to remove the tube. "We have to wean her off the puree," she said, writing down a detailed seven-day plan for the cat's feeding.

I left cursing the cat, drove home, ate a bowl of oatmeal, and took my bath. I called and got an appointment with the nurse practitioner to see her and get the antibiotic extended for the bronchitis/sinusitis I've not quite beaten.

Before rushing out the door to that appointment, I dove into the linen closet for a set of matching sheets. I would not have visited at 4 pm, except that I needed to take a letter to Mom's residence informing them that we would not be renting Mom's room in May. I was worried that each day I delayed would cost us $230 (Mom pays $7000 per month for room, board, and care).

When I delivered the note, however, the office manager told me that 30-day notice wasn't needed in the case of death. "When were you going to tell me this?" I felt like asking.

Anyway, I was dismayed to discover that the cat for whom we have been doing twice-daily feedings and paying exorbitant vet bills had decided to pee all over the linens on the floor. She's been using her litter box pretty well until today; I guess those fresh sheets were just too much of a temptation.

After my pity party, I got up and took my smoothie upstairs to sit down at the computer.

I also set the table for John so he could eat his shrimp and leave me in peace upstairs. When he got home, I used the excuse of grading papers to avoid our usual dinner-time conversation. I didn't feel up to telling him about the cat or my mother, and I knew he'd need support for his difficult day. (Today the Pulitzer Prizes were announced but the LA Times didn't win any. Also the Times had had to print today a lengthy retraction of its Tupac Shakur story two weeks ago--about the worst thing that can happen in journalism.)

I'd like to cancel my class for tomorrow morning, but some students drive an hour or two in order to get to campus. They wouldn't find out until they arrived at the classroom door.

I guess I'll make an attempt to mark their weekly response papers (this time comparing the Gospel of Mary Magdalene and the Gospel According to Luke) and then skim their list of three articles found for their research papers. But it's 11:30 pm, so I will just go to bed if I get sleepy.

Tomorrow's another day.

Drifting Away

When I arrived at 9:30 pm last night to sleep on a futon next to Mom's bed, she was already sound asleep and didn't know I was there.

I spoke with the two nightshift caregivers, did some catch-up reading in my Al-Anon books of daily reflections, and turned out the light at midnight. At 3 am I woke and called a caregiver to check Mom's Depend and turn her onto her left side; I tried to squirt a dropperful of water into her mouth.

At 6:30 am I woke and folded the futon, gathered my books to go home at 7 am when the caregiver arrived. Mom was still sound asleep, but at 7 am when I was meeting the caregiver and instructing her in the care, Mom stirred.

"Hi, Mom," I said. "It's Anne. How are you doing? This lady Marilyn is going to take care of you today. I'm going to leave now."

"No, don't leave me!" she cried in a panic, grabbing my arm. All night she hadn't known I was here, but now that I was leaving, she was afraid.

I calmed her down and Elisa, the caregiver she knows well, arrived. We decided she might be in pain, and it had been 15 hours since her last morphine, so I squirted o.25 ml into her mouth. It tasted bad. Her mouth gagged open, toothless except for the eight front teeth on the lower jaw, a pitiful sight.

"I love you, Mom," I said, kissing her forehead, and left.

When I returned at 4 pm, she was sitting in her recliner by the window with the curtains wide open to the bright afternoon. Until a week ago she would always demand that the curtains be closed: "It's too bright." But today she was defenseless, either too remote to notice or too weak to make her wishes known.

"Hi Mom, it's Anne," I said, kneeling at her side and putting my face up to hers.

She didn't open her eyes or respond. In fact, her eyes seemed to be growing shut, shorter at each end, the tiny lashes almost invisible. Is it possible that if you keep your eyes closed all the time, the upper and lower lid will start growing together at each end, so the eye is only half as long as it should be?

I kept talking to her and she finally responded a little, her eyes opening a crack but the pupils rolled away, not looking at me.

I called for someone to take her vitals; her pulse was 64, but her blood pressure was only 114 over 59.

"Would you like to lie on your bed for a while?" I asked. "Are you tired of sitting in this chair?"

She nodded. We moved her to lie flat on her bed and made her cozy under the covers.

I left to go to the bank and mail some things to my daughters at the post office, thinking about how weak she had been.

Because she is not eating or drinking, the byproducts of her metabolism are probably building up in her blood; she is being poisoned. My brother Bill, the doctor, says that within 5-7 days her kidneys or liver will fail.

It's a grim vigil, waiting for this to happen, but she appears very peaceful lying in her bed or in her recliner. No struggle or pain is visible.

As a nurse who has shepherded many patients through this process, she understands what is happening. She accepts dying and wants to get through it. That's why she clenches her jaw when we try to squirt a dropperful of water into her mouth. If a caregiver tries to make her sip water or open her mouth to swab it with a tiny wet sponge on a stick, she waves her bony arms fiercely to scratch and fight the attacker.

Clearly, dying is hard work. All we can do is stand by and respect her determination. She's still in control.

Sunday, April 06, 2008

Get Me to the Church on Time

Mom woke at 3:30 am. "Help me! "

"What's wrong, Mom?" I asked, jumping up from the futon. "It's me, Anne."

"Anne, I can't stand myself."

"What? Do you have pain? Where?"

"Everywhere," she answered. "I want to get out."

I gave her a tiny squirt of morphine into her cheek and called a caregiver to check her Depend and help me turn her to face the other direction. I went back to sleep.

At 7 am she woke again. "Mother, I want you!"

"I'm right here," I answered.

"What day is it?" she asked.

"Sunday," I answered. "But you don't have to go to church unless you want to."

"I always go to church," she answered.

I thought about that possibility: actually take her to church, even though she's weak, a few days before her death?

I hadn't brought anything to wear to church; for the night I'd just worn soft jogging pants with a stripe down the side and a turtleneck long-sleeved shirt, very pajama-type clothes but not actual pjs. If she actually tolerates getting dressed, I could stop at home on the way to church and change clothes, I decided.

When Elisa came to Mom's room at 8 am, we managed to get Mom dressed in a soft tan cashmere pullover sweater and velour soft pink pants. I put a pink and tan sweater vest over the sweater. We gave her two eye dropperfuls of water and squirted some morphine into her mouth.

"Would you rather stay here and rest in your recliner or go to church?" I asked.

"Go to church," she said every time I asked her.

I wondered if I could actually take her and get her back without her dying en route. Being alone with her if that happened would be really difficult. She seemed clear about wanting to go, however, so I decided to risk it. At 9:30 Elisa and I lifted her into her wheelchair and I wheeled off toward the elevators and the car.

The other caregivers gaped at me as I wheeled her off. Most of the residents in the "Reminiscence Neighborhood" never leave from day to day, though they are able to walk and in relatively good health, but here she was on hospice, a few days from death, being wheeled off to go to church.

I grinned sheepishly as we left. "Well, the worst it can do is kill her," I said.

There wasn't time for me to go home and change clothes, much less take a shower, so I walked in wearing the clothes I had slept in: navy jogging pants with a red stripe down the side, a white turtleneck shirt, as well as a red hoodie jacket of Mom's.

We arrived at 9:55 am while the pastor was doing the children's message, just before the main sermon. I hoped our arrival would not startle him; after all, my sister Emily had been emailing him on Saturday about possible dates for the memorial service, but now (two Sundays after Easter) I was wheeling the resurrected, ghost-like Evelyn into church.

He seemed to take our arrival okay, but suddenly I saw the tables of bread and wine on four sides of the congregation.

"Oh shit, it's Communion Sunday," I said to myself.

That's not my usual response to this sacrament, but I knew that Mom was not up to receiving Communion today. It would be difficult, perhaps dramatic.

After the sermon, when the time came, the pastors did an especially elaborate version of the bread and grape juice because some of the children were celebrating their first Communion.

The congregation was asked to get up and walk to one of the four tables to get the bread, walk back to their pews and sit down, then take the bread in unison. Because I was boxed into the pew by the wheelchair on the end near the outside aisle, this was a tricky maneuver, but I managed to get out, take a bit of bread, and get back into my seat.

At the proper time I pressed a tiny morsel of it to Mom's lips, but of course she clenched her jaw, refusing all food.

Then we had to get up and out again to collect our little cups of grape juice. I brought back three, one for me, one for the man next to me, and one for Mom. I thought I'd just touch it to her lips as a gesture, but when I did, she spit a bit of yellow phlegm into the cup. Alas--an unholy moment. Catholics and some Protestants make a point of offering eucharist to persons who are dying, but this is not how it's supposed to happen.

Except for this part of the service, Mom got through it without too much noise or fuss. Her eyes were closed and she may have been drifting in and out of sleep, but she had to hear the praise band shouting, "I'm free! I'm free to live! I'm free to praise!"

Afterward I wheeled her out into the line of people shaking hands with the pastors at the door of the church.

"How's she doing?" asked the Reverend Lisa Bove innocently.

"Well, she's had a couple of near-death experiences in the last day or two," I admitted. I didn't say, "She shouldn't be here. My sister will say I'm crazy when I tell her we came to church."

"Let's pray for her," offered the Reverend Charles Svensen, who had been receiving Emily's emails about dates for the memorial service.

"Dear Lord, we pray that you will keep our sister Evelyn safe as she walks this final part of her journey and bring her safely into the glory of your Kingdom," he said, kneeling at her side with Lisa.

"Amen," we all said.

"The pastor prayed for you," I said to Mom then and asked, "Do you know that?" Her eyes had been closed almost the whole time. She nodded yes.

When I reported the scene to Emily later in the day, she commented, "Oh, that's good. You reported her near-death experiences, and he prayed for her to have a full-death experience."

After I lifted her into the car and drove off, I asked, "Would you like any ice cream?" We often stop at Baskin-Robbins after church or after a doctor's appointment.

"Yes," she nodded but didn't take even a tiny spoonful of it when I put it to her lips.

I took her to my house, but she was unable to grab onto the car to help get herself in and out. I had to lift her from her wheelchair and then from the car back to the chair.

Later in my kitchen, she wanted to go back to her residence almost as soon as she arrived.

I took her back at 12:30 pm, grateful that no medical emergencies had occurred, thinking to myself, "She'll probably never get out of her room again."

We had a peaceful afternoon. I read Psalm 23 to her, and when I recited the Lord's Prayer, she tried to join in with me in a faint voice.

At 3:30 pm we gave her a tiny dose of morphine. Her blood pressure was normal today, 128 over 79. At 4 pm a relief caregiver arrived, giving me a break until 8 pm.

Saturday, April 05, 2008

Moment of Panic

Today Mom was almost dead when I arrived at 10 am, hunched over in her wheelchair with her head almost touching her knees, phlegm blocking her throat, her upper plate of false teeth in her lap.

The morning caregivers were nearby busily serving breakfast to their 28 residents, unaware of her condition. Mom had pushed herself away from the table, trying to leave and go back to her room, but she'd only gone about ten feet away.

When I tried to talk to her, she was nonresponsive and as limp as a rag doll. Her eyes were rolled back so only the white was visible.

I called the meds person to take her blood pressure. She couldn't get a reading, but Mom was still breathing lightly and had a pulse. We were all panicked.

"Today's the day," I thought. "I didn't think it would come this soon."

We managed to wheel her back to her room and stretch her out on the bed.

Beulah, one of the caregivers in the dining room, said that Mom had not eaten any breakfast but had coughed up a large glob of yellow phlegm. More phlegm was still in her mouth, but she wouldn't open to let us clean it out.

Finally we got a blood pressure reading of 102 over 61. Her pulse was 74. I called my sister and told her, "It's today, I think." Emily cancelled her plans to do a wedding rehearsal and drove up to see Mom, arriving at 12:30 pm.

Realizing that Mom was not going to get individual supervision from her residence, I called the caregiver agency and changed our request from eight hours a day to twenty-four hours in two shifts of twelve hours, 7 am to 7 pm and then an equal shift at night. Mom is probably going to die in the next six or seven days, but she will not die unattended, hunched over in a wheelchair or alone in her bed at night. Someone will be with her.

The agency would have coerced someone into appearing that night at 7 pm, but I told them we wanted the two twelve-hour shifts to begin on Monday. For the weekend I would stay with Mom overnight as well as during the day, with breaks provided by Emily on Saturday and the scheduled caregiver 4-8 pm on Sunday.

At 2 pm Mom's blood pressure was still 102 over 59. I left Emily in charge until 7 pm, when I would be back to spend the night in Mom's room.

We changed her into her nightgown and tried to squirt a little water into her mouth to freshen it.

Then I said, "Goodnight, Mom. I love you."

"I hate you!" she said vehemently.

"That's okay, you can hate me," I answered. "Is it okay to put music on?"

She nodded. We listened to hymns on the CD player.

Meanwhile, I called my brother Bill to discuss the day with him.

"It would have been an easier death for her to go today from lack of oxygen than to do organ failure," he commented. "There's a lot of suffering with that."

"Yeah, I guess it was kind of pointless to revive her now so she can die in four or five more days," I confessed. "Oh well...."

After talking to the nighttime caregivers. I turned out the light about midnight, sleeping on a futon on the floor.

Friday, April 04, 2008

Caregiver Slavery

I'd asked Baby to work this weekend, but she called me Friday morning and said that she'd been sick all week and couldn't work on Saturday or Sunday.

I called the new agency, American Angel Caregivers, and asked if they could get anyone to work eight hours on Saturday and Sunday on short notice.

"No problem," said Ana, the owner.

But when I talked with Connie Erni at 4:30 pm, she said she had agreed to come, as a personal favor to Ana, even though she would miss a family birthday party. Her cousins were upset with her for telling them she couldn't come at the last minute.

I realized Connie had been coerced.

"No, don't come on Saturday," I said. "I'll take care of my mother on Saturday. Can you come for eight hours on Sunday?"

"Yes, but I would like to go to church," she said.

We agreed that I would do Sunday morning to mid-afternoon, and Connie would work 4-8 pm.

This was okay with me; I wanted to have some private time with Mom while she was still lucid, without my sister or caregivers present.

End Stage Dementia

Mom is not doing well.

She's still alert and talking to us; she knows who we are, but she's eating almost nothing and not drinking very much either. We try to spoonfeed her pureed food, but she is not able to swallow it.

The doctor says she is weak; her throat and swallowing muscles are weakening. They told us in 2004 that not being able to swallow is the typical final stage for both Lewy Body Disease, which she has, and for Alzheimer's.

I couldn't really imagine it then--how is it possible to be unable to swallow? But now I see her eager to eat something, taking it in her mouth, but unable to move it to the back of her throat. Instead it falls out or her tongue pushes it out in the attempt to move it. Then in irritation she says, "I don't want any more" and clenches her teeth.

My brother Jim from Denver came out for a visit this week and had three good days with her. We took her to the Santa Monica Pier and to my house to sit in our kitchen and talk and try to eat. When Jim was saying goodby, she told him, "I love you."

She probably will not make it to May 1. We are thinking the service could be as early as April 26 or even April 19. It will be in our church in Santa Monica with our pastor who knows her because I take her every Sunday. He also knows Emily from various pastors meetings.

She is peaceful and aware of her condition. She wants her suffering to end and says, "I just want to go to heaven."

A week ago she was asking how much money she has left; when I told her, she said, "Enough to go to Japan!" I let her talk about making a trip there. But two days ago she said, "I don't think I have the health to go to Japan." "No, I don't think so," I said.

We appreciate your prayers as she makes this final part of her journey.

Jim's Report

An email from my brother Jim:

"Sorry to send this, but I want to be clear just in case anyone's in denial. Hospice and the care assister both pointed to indications that Mom's body is shutting down: cold feet and extremities, purple in the hands and feet, inability to eat or even drink, swallow or pee, nausea, pain or imagined pain in back, falling feeling, more sleep going into a deep state where she repeats things like "please take me...." or "please just let me die."

If I take what I heard from Hospice, who deal with dying, I give her a few days. She's clearly lost a lot of weight since I saw her last year, but she's still got body weight there -- enough to pain my arm, and lots more than Aunt Grace at the end.

I am planning for her passing; maybe Tom, Greg and I will come out for a memorial (by car).

Thanks to you all for telling me to get my butt out to see her, because we had a nice visit.

Jim

The Cat, On the Other Hand

Mom is declining, but the cat is doing great.

She's sitting on my lap and purring as I type this.

Twice a day we squirt pureed cat food down Celeste's feeding tube.

Yesterday I took her to the vet, hoping to get the tube removed and return her to eating kibble by herself.

"No!" said Dr. Hernandez. "It can't be removed until she's been eating normally and drinking water for a full week."

"It's been four days, " I argued.

I lost. It takes a village to determine the fate of a cat. Once I enter the vet's door, it's out of my hands. That doctor has taken a hippocratic [sic] oath to serve and protect animals; she wouldn't put the cat to sleep, and now she won't remove the tube.

So I come home from begging Mom to eat and put a can of cat food in the blender with a little water; I corner the cat, place her on a towel on the washing machine, and squirt the food down her tube. I also have to put two pills down, and they get stuck in the tube. I keep trying to push the syringe and clear the blockage until suddenly the cat food spurts all over the wall and me and the washing machine. I wait a couple hours until the clogged pills dissolve and try again.

We could put a gastric tube in Mom, too, but with her dementia she'd probably pull it out. I'm sure she wouldn't like it. Her quality of life is already so low that another six months with a feeding tube would be miserable for her.

Celeste has so much energy back that she's back to her usual tricks: touring the house each day to select which bathroom rug she will do number two on.

My prayer: that she will soon be outside in the daytime to perform that act on the grass.

Thursday, April 03, 2008

"I'm Ready"

This evening Marnie, the lead caregiver for the Reminiscence Neighborhood, was sitting with Mom and trying to get her to take her 5 pm meds and to drink a little milk.

"Why are you doing this?" Mom suddenly asked her. "I'm ready."

"Yes, you are ready, aren't you?" Marnie replied. She stopped pressuring her to take the meds.

A few minutes later Marnie slipped out of her room to cry.

She reported the scene to me later--with tears.

Marnie's own mother died last November of cancer at age 71 in the Philippines. Marnie had visited for a month in the summer, but she could not nurse her during her final months without quitting her job here in the US. Instead she earned money to send to her mother and to build a wonderful memorial plaza with benches and flowers to house her mother's ashes (and later those of other members of the family).

Marnie nurses Mom like her own mother; she came in last Sunday on her day off to care for Mom and try to feed her.

What a gift to us! We can't repay kindness like this; we can only accept it with gratitude.

Dying Clears the Mind

Dying clears the mind.

In the last four years of Lewy Body Dementia, Mom has often been confused, irritable, forgetful, even hallucinatory.

But today when Jim told Mom he was leaving, her mind was clear.

"Thank you for coming," she said.

There were four of us bustling around the small room: the hospice nurse, the private caregiver, Jim, and me. It was not easy for him to have a private moment with her.

I wasn't sure she understood that this was his final goodby.

"Jim's going to fly back to Denver," I said loudly. "He came here to visit you for three days."

"I know," she said.

"Goodbye, Mom," Jim said, hugging her as well as you can hug someone stretched out in a recliner.

Jim and I walked outside the room and left the hospice nurse and caregiver to continue their work with her. We were talking two minutes later when they called Jim back in.

"She wants to see Jim again," they said. He went back in, and the three of us retreated to give them another few moments together.

"I love you," she said clearly.

"I love you too, Mom," he said.

After a few more words, he left again.

Tremendous presence of mind for someone dying with Lewy Body Dementia--it moved us all to tears.

Jim, her third child--neither oldest nor youngest nor nearest during her last few years--needed to hear this, and she needed to tell him.

Her clarity took our breath away.