Sunday, May 04, 2008

Regrets

"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.

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