Wednesday, December 24, 2008

Lost Child

At Christmas there were so many moments of sadness, missing my mother, who died last April.

When I brought boxes of Christmas decorations down from the attic, there were the two shopping bags labelled "Grandma's Christmas things." I wouldn't be taking them to her apartment to create Christmas cheer this year, as I had since 2003.

She loved Christmas and had not wanted me to take these decorations down in mid-January last year, probably knowing she would never see them again. All the cozy cheer of Christmas to be put away forever--that's hard.

Stunned by these thoughts, I had to sit down in a chair and shed a few tears.

There were other moments--finding the Christmas apron I had made for her, putting up the elegant holiday wreath she had bought us.

But the hardest came on Christmas Eve when I hung up the stockings: Dad, Mom, Roz, Ellen, Marie... and found the stocking labeled "Grandma."

There will be no stocking for her this Christmas.

I mourn as if I have lost a child, not a person 89 years old who was actually ready to die.

She was so child-like in her last years and sometimes asked, "Are you my daughter or my mother?"

I cry because one of my children is missing this Christmas.

Friday, September 26, 2008

P.E.O. Lives On

I went to a P.E.O. party today, trying to get home from Northridge in time to get there by 4 pm.

In this crowd, dinner is at 4:30 or 5 pm. At least I was able to get home by 6 pm to watch the presidential debate, fleeing the bridge and other games offered.

It was good to see their faces but also sad to see the decline in health of some of those my mother's age. More canes being used, more deafness in conversations, more members missing because of health issues.

But travel to Chile and "Michy Pitchy" and important books read in book clubs.

The president had a large red circle around her left eye socket, as if she had been whacked with a door knob. She explained that she'd had surgery.

Maggie, one of the weakest, reminded me that I had wheeled my mother in through the patio last year... "You came right through there," she said, still seeing us.

Until that moment I hadn't thought about attending this same B.I.L. dinner a year ago today.

Then I remembered it all: the crisis of my mother's diarrhea in the wheelchair just after we arrived, my embarrassment at the increasing smell, my effort to stay a decent amount of time before leaving, Mom's insistence that she wanted to go home.

"Why did you go this year?" any reasonable person might ask.

Well, I am now a P.E.O. I took those vows of sisterhood. These old ladies are my sisters, dammit.

I'm teaching Monday, Wednesday, Friday, so I'm excused from the meetings at 10 am every other Friday. With this 4 pm party and the Christmas party, I feel that I will have done my duty.

Still trying to be the good little girl.

Thursday, September 25, 2008

Mental Health Advocacy

I went to an annual celebration of LA's Mental Health Advocacy Services tonight, a guest of my friend Shirley Luehring Kirby, who is a board member. (See

LA Times columnist Steve Lopez was one of the featured speakers, receiving an award for his book The Soloist about his friendship with a talented musician whose life had been derailed by schizophrenia and who was living on the streets of Los Angeles for many years.

The movie version starring Robert Downey Jr. and Jamie Foxx will be released in November.

I was moved by Steve's account of his encounters with Nathaniel Ayers and how they changed him.

In fact, while driving home I suddenly had an insight about my mother that never before occurred to me in the five months since her death from end-stage dementia on April 9.

Usually when I think about her, I feel grateful that I am no longer spending two or more hours per day visiting her and making medical decisions about how and where to care for her.

But tonight I had a sudden onrush of memory: her lying lonely in her bed, sleeping, then being wakened to have her Depends changed and to be turned onto her other side.

A rush of gratitude followed: Thank goodness tonight she's not sad and alone. She will not be in danger if the fire alarm goes off--will not struggle to get out of bed, fall on the floor, and break a bone as she did last December.

I've uttered the platitude that "At least she is no longer suffering," but always before I was thinking about her inability to swallow in her last few weeks, her being confined in a wheelchair, her loneliness and boredom in the daytime living in a memory-care floor of an assisted-living facility.

Tonight the pain of those evenings flooded back:
* me trying to leave at 7 pm or so.
* her saying, "You'll stay and put me to bed, won't you?'
* me saying, "No, Esther will come. I have to leave now."
* or me getting her through the shower, putting on her nightgown and getting her into bed, then trying to say goodnight and escape as she asked me to stay longer.
* her later waking alone in the night with urine in her Depend, waiting for someone to come, then suffering the indignity of having the sodden diaper changed, often by a man.

Tonight I don't have that worry, I realized. She's not lonely or in danger.

I visited the residence three days ago and learned that now there's only one person on her floor at night in charge of 31 residents. Before there were two.

I've been grateful for the release her death gave to me, but hearing the stories at the dinner this evening reminded me that just a few months ago she faced the long night alone every night.

I no longer have to fend off guilt as I kiss her goodnight and return to my warm comfortable home.

"Can't I stay here tonight?" she asked me a few times in the last weeks of her life when she sat at my dinner table eating a snack at 5 pm.

"No, I have to grade papers," I would say, or "prepare for class" or "fix dinner for John."

I did have work to do, but mainly I just needed her to be at her place so I could have the night to myself and not be setting up the bed, undressing her and putting her to bed, tending her during the night, and getting her dressed and fed in the morning.

As it turned out, her death was peaceful. I was relieved that I no longer had the burden of her care and that she had faced it all with such courage.

But this evening, after hearing about the dangers Nathaniel faced at night, Mom's night suffering and my worry about it suddenly took me by surprise.

Thank goodness we are both free now.

Friday, July 04, 2008

Free on the Fourth

This is the first Fourth of July that I have been free of care for my mother, care for children, care for grandparents, care for anyone at all.

I treasure this day to set my own agenda, yet I am sad that I am not in Telluride. For me the only place to be on the Fourth is Telluride, watching the parade, going to the barbecue in the park, perhaps listening to the fireworks reverberate against the 13,000-foot peaks.

I don’t like the fireworks because they are symbols of bombs and grenades, IEDs. They are violence made pretty. Still, I want to be in Telluride and I miss her. This holiday is all about her and her home town, where I've been for nearly all the July 4s of my life. She made sure the family was there when she had young children.

In 2004 and earlier years, I took her to Telluride for the celebrations on July 4. Since 2005, I've dressed her up in red, white, and blue and taken her to lunch here, then to fireworks in the evening.

I’m sad that she doesn’t have this Fourth to Celebrate, but if she were still here, it would be a burden for me. My whole day would revolve around her.

Instead, this year I am free.

Wednesday, July 02, 2008

Depend on It

Today amidst various errands I pushed a grocery cart through the grocery store nearest to the assisted living residence where my mother lived, gathering $130 worth of various foods, cleaning supplies, cat litter, etc.

But when the Depends caught my eye at the end of aisle two, I suddenly felt tears at my eyes, the tension of a suppressed sob in my chest.

I realized that today's a Wednesday; it's been exactly twelve weeks since my mother died peacefully at 89 years of age.

So this is what it means to lose her, I realize: though I accept her death as necessary, a blessing to both of us, I miss her at odd moments like this.

I see the Depends and don't buy them, remembering how often I piled three packages into my grocery basket and rushed on to the wipes, the V-8 and other weekly purchases.

I realize that she is not two blocks away, waiting for me impatiently. She is gone. It's better that she's gone, but sadness remains.

Our lives come to an end, and the world carries on without us. She wanted to be near the center of my life, but now she is a memory, a sudden swell of feeling as I pass the incontinence products in the grocery store.

Monday, June 30, 2008

View from Above

Flying back from Indianapolis to California today, the plane passed over the Rocky Mountains in southern Colorado.

I wanted to look down and see Telluride, Trout Lake, Mesa Verde, but a haze covered the area, and shadow too. The sun must have set down there.

"My mother's ashes are down there," I thought. "I'm flying over the spot where they lie, under the lilac bush."

Last week my brother Bill reported that the red columbines I also planted under the lilac had died. I'm sad that they died... I wanted that spot to look so beautiful, to contain her cherished flowers.

"I wonder if she cares," I then mused, looking down from the airplane window.

And staring out at the billows of cumulus clouds illumined by the setting sun, I realized, "No, she doesn't care. She is so far beyond caring about that little spot on earth where her ashes lie. It's only Bill and I who are tending that spot, wanting the lilac to survive its first cold winter at 10,000 feet, wanting the shooting star columbines to bloom there."

She is so far beyond, but we still care.

Wednesday, June 18, 2008

Love Is a Pink Bear

Before driving to Colorado with Mom's ashes, I sorted through her remaining possessions, looking for things to take to Trout Lake to keep in her cabin there as a kind of memorial to her:
~the antique doll buggy given to her when she was four years old,
~her diary of 1936-38,
~photos of her with her brother Reynold Gustafson and her cousin Walter Pera,
~her framed poem "Work,"
~the photo collage I made for the door of her room at the assisted living.

I also came across things that needed to be given to the Salvation Army but had so far escaped that fate.

Then I saw the pink plush bear that sits on a shelf and sings:

L is for the way you look at me.
O is for the only one I see.
V is very very extraordinary.
E is even more than anyone that you adore.

And love is all that I can give to you.
Love is more than just a game or two.
Two in love can make it;
Take my heart and please don't break it!
Love was made for me and you.

I found this bear in the Mission Hospital gift shop when Mom was having surgery for her second broken hip in August, 2004. It has two strings of pearls and a white plush wide-rimmed hat with a pink silk ribbon tied in a rosette. Another ribbon comes from the back to tie in front at the waist in an elegant, floppy bow.

Its head bobs left and right, the mouth opening and closing as it sings, sitting upright on a solid oval base though the arms and legs are soft, a shiny pale pink velveteen with stuffing.

I had squeezed its paw and played it for her many times in 2004 and later, always bringing a smile to her face. Sometimes she tilted her head left and right in rhythm with the music, as if dancing to it though sitting upright in her bed.

Yes, I decided, the bear has to go to Colorado. It rode in the car with me across the desert and up into the mountains, representing my mother's taste in dress in her later years with its hat and bows and pearls and plush pink.

While I was cleaning my house at Trout Lake, however, I noticed things that needed to be given away and decided that the pink bear was one of them. Surely it should be given to some poor child who would enjoy it.

In Telluride there's a collection of shelves and bins called the Free Box; people leave items, and others who have needs come by and sort through them, taking anything valuable. I drove there.

Dropping off my bags, I placed the bear on a shelf in full view, hoping someone would take it home to a child, hesitating to leave the bear but finally driving off to return to Trout Lake.

Leaving town, however, I thought of the bear sitting there and wanted to go back and get it.

I pulled over and yelled at myself: "You're crazy, Anne. Why do you want that bear? It should go to a poor child. You can't keep everything."

"But it reminds me of her," I answered myself. "It means more to me than it would to some child who would get it."

Feeling completely foolish, I turned around and drove back to the Free Box, walked up to the bear, and picked it up in full sight of a couple of Mexican-American men lounging there.

As I again drove out of town, I squeezed the pink bear's paw so it sat in the front seat singing, "L is for the way you look at me...."

Back in her cabin, I put it on the bureau in the bedroom, but a few days later, thinking of the dust and mice that would attack it over the winter, I took the bear to my car and drove it back to California, where it sits in my house near Mom's glass cabinet holding her doll collection.

I need to give away more of the dolls and sort through her many papers and photos--but the pink bear is here to stay.

Sunday, June 15, 2008

Surrounded by Beauty

Here are the mountains around Trout Lake, where Evelyn's ashes rest in peace.

For the story of her life, order Adventures of a Telluride Native from Western Reflections Publishing at or from Amazon.

Saturday, June 14, 2008

Return to the Earth

Today we placed Mom's ashes in the soil under the small lilac bush that I transplanted near her cabin yesterday.

The service was just before sunset, after Jim and his boys had been fishing in the lake.

I read from the Episcopal Book of Common Prayer, The Burial of the Dead, Rite One, including the Commendation and the Committal.

"O God, whose mercies cannot be numbered: Accept our prayers on behalf of thy servant Evelyn, and grant her an entrance into the land of light and joy, in the fellowship of thy saints; through Jesus Christ thy Son our Lord, who liveth and reigneth with thee and the Holy Spirit, one God, now and forever. Amen."

Tom read parts of Psalm 90:

Lord, thou hast been our refuge, from one generation to another.
Before the mountains were brought forth,
or ever the earth and the world were made,
Thou art God from everlasting, world without end....
For a thousand years in thy sight are but as yesterday when it is past,
and as a watch in the night....
The days of our age are threescore years and ten;
and though men be so strong that they come to fourscore years,
yet is their strength then but labor and sorrow, s
o soon it passeth away, and we are gone.
So teach us to number our days,
that we may get a heart of wisdom.

I read:
"Grant that all who have been baptized into Christ's death and resurrection may die to sin and rise to newness of life, and that through the grave and gate of death, we may pass with him to our joyful resurrection....

Grant to us who are still in our pilgrimage, and who walk as yet by faith, that thy Holy Spirit may lead us in holiness and righteousness all our days. Amen....

Grant us grace to entrust Evelyn to thy never-failing love; receive her into the arms of thy mercy, and remember her according to the favor which thou bearest unto thy people. Amen."

In the commendation portion of the service, I read these beautiful words:

"Give rest, O Christ, to thy sevant with thy saints,
where sorrow and pain are no more,
neither sighing, but life everlasting.

Thou only art immortal, the creator and maker of humankind; and we are mortal, formed of the earth, and unto earth shall we return. For so thou didst ordain when thou createdst me, saying, 'Dust thou art, and unto dust thou shalt return.' All we go down to the dust; yet even at the grave we make our song: Alleluia, alleluia, alleluia....

Into thy hands, O merciful Savior, we commend thy servant Evelyn. Acknowledge, we humbly beseech thee, a sheep of thine own fold, a lamb of thine own flock, a sinner of thine own redeeming. Receive her into the arms of thy mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light. Amen.

Glancing often up to the last sunlight on the majestic peaks, I read the Committal:

"All that the Creator giveth me shall come to me;
and the one that cometh to me I will in no wise cast out.
The God who raised up Jesus from the dead
will also give life to our mortal bodies,
by God's spirit that dwelleth in us.

Wherefore my heart is glad, and my spirit rejoiceth;
my flesh also shall rest in hope.

Thou shalt show me the path of life;
in thy presence is the fulness of joy,
and at thy right hand there is pleasure forever more."

Then I opened the plastic bag with her ashes, about five pounds in weight, poured them into the ground under the branches of the lilac bush, and asked Tom and Greg to help me scoop earth lying nearby (from planting the bush yesterday) and place it over her ashes. We did that and then covered the fresh earth with sections of sod that had been growing there.

I read from the Commital:

"In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend to Almighty god our mother and grandmother Evelyn; and we commit her body to the ground; earth to earth, ashes to ashes, dust to dust. The Lord bless her and keep her, the Lord make his [sic] face to shine upon her and be gracious to her, the Lord lift up his [sic] countenance upon her and give her peace. Amen."

The Lord be with you.
And with thy spirit.
Let us pray... [the prayer Jesus taught us]...

Rest eternal grant to her, O Lord:
And let light perpetual shine upon her.

May her soul, and the souls of all the departed,
through the mercy of god, rest in peace. Amen.

The God of peace, who brought again from the dead our Lord Jesus Christ, the great Shepherd of the sheep, through the blood of the everlasting covenant: Make you perfect in every good work to to God's will, working in you that which is well pleasing in his sight; through Jesus Christ, to whom be glory for ever and ever. Amen.

O God, whose blessed Son wa laid in a sepulcher in the garden: Bless, we pray, this grave, and grant that she whose ashes are buried here may dwell with Christ in paradise, and may come to thy heavenly kingdom; through thy Son Jesus Christ our Lord. Amen."

For me, reading these beautiful words and putting Mom's ashes to rest in a place of such beauty, was a joyous experience, filled with awe and a sense of God's presence.

Jim was sad and a bit choked up, said he did not want to see her ashes.

"You don't have to look," I told him. "This is a very beautiful and happy time for me, but you have a right to have your own feelings about it, to be sad."

Tom and Greg, ages 18 and 14, were quiet; I wasn't sure what they were feeling.

At any rate, we left her ashes there, near the ashes of her father, which were placed next to a one-foot tree on a knoll behind the cabin in 1976, and the ashes of her mother, placed there in 1984.

We left behind her ashes, guarded by the little lilac bush with the three red columbine plants blooming next to it.

Jim and Greg cleaned the ten fish they had caught in the afternoon, while Tom and I drove over to my house to fix dinner.

I am confident that she rests in peace, back in Colorado at last, forever.

Wednesday, June 11, 2008

Returning to Colorado

My mother's greatest wish was to return to Colorado. She missed Boulder, the Flatirons, Telluride, Trout Lake, her homes there and all the beautiful mountains.

Today I am driving her to Colorado--that is, I am driving her ashes.

The Telluride native, after all her adventures, is returning to Colorado.

I feel her presence with me in the car. Her ashes are glad to be done with sitting on my mantelpiece in California, glad to be speeding across the Mohave to Needles, Kingman, and Flagstaff, glad to be cross the Navajo Nation and reaching the Four Corners, then crossing the San Juan River into Colorado, driving through Cortez up the Dolores River valley to Trout Lake.

I couldn't take her here in the summers of 2005, 6, and 7, but she is going now. Last summer when I drove to Colorado, she said, "Is there any good reason why you can't take me with you?"

I mentioned one or two reasons, but there were many: her incontinence, her wheelchair-bound status, her weakness (unable to drive in a car for eight hours per day), her need for an oxygen-supply tank once we arrived, my lack of strength to transfer her into wheelchairs every time we left the car and then put her back in the car, the vigilance she would need at night, my lack of patience for dealing with all this.

At any rate, today I am driving her and some of her most treasured possessions to Trout Lake. I will leave her diary of 1936-38 and various photos in her cabin there. I will lead a service of deposition of remains with my brother Jim and his sons present as we lay her ashes to rest where she wanted them to be, near her cabin at Trout Lake.

Wednesday, May 14, 2008

Alzheimer's--Not LBD !

The envelope arrived today from the UC Irvine Institute for Brain Aging with the report on the pathology of Mom's brain. Her doctors had encouraged us to participate in a program of full physical and mental testing, followed by donating her brain after death, to assess the accuracy of the diagnosis they had given her and to improve future diagnoses of others.

I trembled to open it.

Dear Ms. Eggebroten,

The neuropathological evaluation of your late mother, Evelyn Eggebroten, has been completed. According to our neuropathologist's observations, the final diagnosis is consistent with ALZHEIMER'S DISEASE. I have enclosed a more detailed report.

If you have any questions, or if we can help you in any way, please do not hesitate to give us a call at 949-824-5032.

With sincere thanks,

Bobby Dahlin
Research Associate
Institute for Brain Aging and Dementia Tissue Repository

The full page report inside says, in part, "Neuritic plaque formation... isch;emic cell change... No Lewy bodies, Pick bodies, or achromasic neurons are observed."

I was stunned. The doctors had been saying that her probable diagnosis was Lewy Body Disease, but there were none of these bodies in her brain. Instead there was the long threads of plaque called Alzheimer's, along with "ischemic cell change," which means cell damage caused by mini-strokes.

She seemed to have so many Lewy Body characteristics... she never lost her ability to speak in full sentences, to recognize her children...

It is a mystery. But this information will be helpful when the next generation--Bill, Jim, Emily and I--reach that stage of life.

Sunday, May 04, 2008

In Remembrance

Driving past Mom's residence--but not picking her up--on my way to church this morning was difficult.
Somehow I felt guilty for not stopping to get her, though I knew that was crazy.
Entering church, I sat in a different place than I had always sat before with her.
The service was fine until Communion and the words, "Do this in remembrance of me."
I thought about Jesus, aware of his impending death, asking his friends to remember him--a sad moment.
Then I thought about Mom on the day before she died, a Tuesday. I wished I had spent more time with her. Instead, I was bustling around going to work as usual and doing other errands. I could have chosen to spend the afternoon with her.
When I walked up to take the bread and wine, I was acutely aware of not pushing her up there with me in her wheelchair.
I felt like half a person. I guess that's how widows feel when their husband dies, or how widowers feel.
Back in my seat, I realized that from now on this central Christian ritual will always be in remembrance of Mom, as well as Jesus, at least in this particular church--unless I am with other family members to distract me. On April 13 with my cousins, the Communion didn't strike me this way, nor on April 20 when I was rushing back to do things with Roz. Last week I missed church to attend the LA Times Festival of Books at UCLA.
After church I attended the lecture on Judaism by Rabbi Michael Mayersohn of the Alliance for Christian and Jewish Studies. I couldn't have done that if I had her with me--she got bored in long lectures.
Then I drove home, happy to arrive at 11:15 and not to have to do shopping for Depends and other necessities, not to have to spend another two hours or more taking her to my house, urging her to eat, taking her back to her residence, settling her, and coming back home.
I am relieved to have more time for myself today--writing, gardening, sorting through her things to pass them on to my brothers and sister, paying bills.
But for the foreseeable future, I will be thinking of her as I drive to church, during church, and during the hours after church. Sunday was the day I spent the most time with her, except for doctor days, holidays, and other special events.

How strange. I couldn't have predicted that.


"You took such good care of her," friends often say to me. "I know you miss her, but at least you have no regrets."

"Oh, there are always regrets," I answer, usually with a laugh.

I do think of things I wish I had done, and I will share them in hopes they may give someone else insight.

1) I wish I had not kept pushing her to eat and to take her meds. It wasn't until about five days before she died that I really accepted her inability and unwillingness to continue with those basic acts of living.
For years I had been her coach, pushing her to walk again after breaking her hip in 2004, to do her exercises, to eat well, to take her meds.
It was so hard to accept her acceptance of death. She knew that eating and drinking were pointless. On the Monday and Tuesday a week before she died, she could still swallow pureed foods. By Friday, she was only drinking Ensure, but her face was set toward death.
I nagged her into drinking, half spoonful by half spoonful, one fourth cup of Ensure that day. I wish I had not nagged--had just sat and talked with her.
The next four days I squirted Ensure or water into her mouth with an eyedropper and instructed her caregivers to do that. It was hard to see her dehydration (hospice doesn't usually allow an IV for rehydration--they figure it just prolongs the suffering).
We were so pleased when she had enough liquid to wet her Depend twice on Tuesday, the day before she died. I thought she might last another few weeks.
I wish I had not kept urging her to eat, drink, etc.

2) I wish I had instructed her caregivers to accept her death and let her share her feelings.
Years and months and weeks earlier she had said, "I just want to die."
"Well, Mom, you will die when it's time but now you need to eat this (or take your meds or do something else)," I would say to her.
"Evelyn, don't talk like that!" Connie would say, her private caregiver.
In her last weeks when Mom started saying, "I'm ready to die," I would say, "You're tired, aren't you? You're ready to be with God. That's good."
But Connie would still say, "No, Evelyn, don't say that! We love you. You're going to be okay." She's Catholic and Filippina; perhaps for cultural or personal reasons, she could not look death in the face and say, "Yes, you are getting weak. You're going to leave us, aren't you?"
Most of the many caregivers who came into her room gave her pep talks about getting better or cajoled her into eating, drinking, taking meds instead of sharing her quiet acceptance.
I wish we all could have taken a course in how to speak with people who are quietly dying and know it. I wish I had tried to alert some of them to this issue rather than just listening to them and feeling unable to change their attitudes.

3) I wish I had spent more time with her on Tuesday, April 8, her last full day before her death at 10:05 am on Wednesday.
I went to teach my class at CSUN as usual that day, though I expected her to die within several days, maybe Thursday or Friday or Saturday. After finishing at 11 am, I did my office hours and worked in my office until 2 pm or so, then drove to Pasadena to pass out flyers on the Fuller Theological Seminary campus for the upcoming EEWC meeting--a meeting I missed because it turned out to coincide with my mother's funeral. I was really happy to be in Pasadena doing that, not rushing back to Sunrise to spend hours worrying about Mom. I knew a private caregiver was with her.
In Pasadena I also spent time mailing tax returns and a party dress to Ellen for a prom she was attending. I didn't get to Mom's room until 6 pm or later. I stayed an hour, talking to her and to the private caregiver Clarence, a petitie Filippina, who came early for her 7 pm shift.
We moved her from her chair to the bed, getting her in her nightgown.
"Do you want forties music or Christian music?" I asked her when settling Mom into her bed.
"Christian music," she said.
I told her I had mailed that dress to Ellen for a prom--that news brought a smile to her face. Most of the time Mom's eyes were closed; she wasn't speaking except in a whisper. A few people came in to see her.
Later various people told me the significant interactions she had had with them that afternoon. To Marnie she had said, "I won't be here tomorrow." Marnie had to good sense to turn away and shed a few tears but not to argue with her.
Thinking about it now, over three weeks later, I wish I had spent that afternoon with her. On her last day, I spent most of my time away, doing other things.
Why didn't I sit with her, talk with her, listen to her, share her calm acceptance of death?
I know the reasons I had then, but in retrospect the wiser choice would have been to sit vigil with her.
I guess her long illness had worn me out. It had been a long vigil, in a sense, and on that day I was giving myself a little vacation from being in her room. It never occurred to me, "This could be her last day, her last evening."
My brother Bill had said that about seven days after she stopped eating and drinking, she would slip into a coma that would last 3-5 days. It was hard to say exactly when she had stopped eating and drinking because we kept managing to get a little food, Ensure, water down her, and she never entered a coma, unless it was two hours before she died. Even half an hour before she died, she seemed responsive to my sister Emily.

So those are my regrets--and one more--that her obituary still has not appeared in any newspaper in Boulder, Denver or Telluride. I found this out two days ago when I asked my brother Jim, who lives near Denver, for a copy of it. He had written one the day she died, and I had edited it carefully two days later and sent it to him. He had sent it by email to the Denver Post but had not followed up on it. I was upset to find out that no notice of her life and death has appeared. I now wish I had asked him to let me take care of it. At the time I was trying not to be a bossy older sister, instead trusting him to do it. But he has a busy life, as we all do, and it had not been a priority for him.

I've learned that a death brings out sibling issues long buried: fears, anger, rivalry. That has been the hardest part of this past month. For anyone facing the imminent death of a parent: be prepared for this. Don't be surprised. Meet your own needs, and expect your brothers and sisters to meet their own needs and voice their feelings, even when it hurts others. Put on a heavy raincoat for this storm. Don't spend too much time with one of them who is flailing about.

Anyway, perhaps by writing out these regrets I will be able to let go of them and move on. And perhaps someone else will be able to learn from my mistakes.

Saturday, May 03, 2008

New Address

Now I know why I waited over three weeks before trying to cancel Mom's Verizon telephone service.

Today I spent an hour trying to do it and then finally gave up in tears. If I'd made this attempt any earlier, I would have been even more upset than I am today.

My big mistake: trying to do it on a Saturday morning.

First I dialed Verizon, entered my info, and went through a couple of menus, always hearing offers of expanded service. Finally I heard the automated voice give me choices that included "Disconnect."

"Disconnect," I said. A menu of further choices followed, including "Entire account," which I repeated firmly.

The computer voice sounded astonished and wanted to know why I was disconnecting. She gave gave me a list of options, none of which fit the bill. (I didn't want to select "Moved to a new location.")

"Just let me speak to a representative," I begged the voice.

To do that, I had to enter my name, address, phone number, etc., a few more times; then I was put on hold. Finally I got a new message: "The Verizon office you have requested is closed. Please call back at another time."

Just to make sure, I tried a different Verizon number (maybe "Billing questions" would work if "To order services" didn't) but reached the same dead end.

Okay, no humans available on a Saturday. With all the unemployed people in this country, Verizon can't put 50-100 of them to work on a Saturday. Or even one--being placed on hold for two hours would be better than nothing.

"Okay, I'll tell them she moved," I decided, "Just so I can disconnect this phone before the automatic billing hits her account with another $35.

But Verizon then demanded the five-digit zip code of the location where she had moved.

"Heaven!" I yelled. "She went to heaven, dammit! There's been a death in the family."

That put me back on their track to speak to a representative, and to hear five minutes later, "Please call back at another time."

So I tried again. This time I punched in 00000 for the zip code, but the voice then asked the name of the state.

"Death!" I yelled.

"I didn't understand your response. Please repeat it," said the automated voice.

"Argentina!" I tried again.

"Virginia?" the voice asked.

"NO!" At this point I looked in my address book and got a five-digit zip code for New York City. If I gave them a location, maybe they'd let me disconnect. I dialed through all the numbers and menus again, this time prepared.

"10021" I responded when asked to enter the five-digit zip code.

"You have moved to New York. Is that correct?" asked the voice.

"Yes," I agreed.

"We will connect you to a representative to handle your request," the voice promised.

I was encouraged--until I entered my info again and ended up on the same track that ended, "Please call back at another time."

Verizon refused to let Mom go without handing me to a fully human representative, probably to offer her service in another location, but those employees don't work on Saturday or Sunday.

Reluctantly, I decided to try the other option the automated voice had been suggesting repeatedly: "Go to our website." I went to my computer and tried to disconnect her service online.

Again, the only option was to say she had moved. No place on the website did death appear as a reason for ending service. So after name, phone number, address, etc. I entered:

City: Death

State: None

Zip Code: 00000

Then I found that my entry of all this information was pointless because I hadn't logged in first.

"Okay, I'll select a username and password to log in," I decided.

Username: Shedied.

Password: Dammit.

But still I was stymied. The voice said, "Before you can use this password, we will verify your order by automatically dialing your home billing number within twenty minutes after you select NEXT. "

Great! That call would go to her old room, which we emptied three weeks ago, phone and all. There was no way to say, "Could you please dial my phone number, not hers?"

Foolish me--attempting to disconnect a phone on a Saturday.

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 (under Evelyn Gustafson Eggebroten), and new copies can be ordered for $20 from Western Reflections Publishing Company, 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.


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
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.