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.