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Archive for April 2010

Betty’s Still In Charge

My first thought when I woke up this morning was, “Mom is going to die soon. Maybe this week.”

Two weeks ago, I believed that Mom’s condition had been so severely compromised that she was suffering. A friend shared a similar experience with her own mother’s battle with Alzheimer’s. Because she had a living will, they were able to discontinue her tube feeding and her mother passed in peace. I thought my mother deserved that peace, as well. I asked my father to consider doing the same thing. A meeting was called with four representatives of Hospice and four people from the nursing home that has given my mother such loving care for four years. They explained that we have powerful options.

That was the most sobering hour I have ever spent. The decision was my fathers, and he spent days agonizing over it. We went to the home today to make our wishes known, but I wanted to talk to Mom first. That’s when my mother blew me away.

We walked in her room and she looked right at us. She tracked our movements with her eyes. I knew it was her. Mom. My mom. My beautiful, one-of-a-kind mother. One hundred percent, she was right there with us.

I sat on her bed with her and leaned close. “Mom,” I said firmly, “It is very important that, if you understand me, you let me know.”

The look she gave me said everything, but I wanted confirmation. “Blink” if you understand me, I said. She blinked. Then I wondered if she just blinked because she needed to blink. So I said, “Blink several times.” And then she blinked several times. But, I still didn’t want to be imagining anything.

“Betty,” my dad said. “We want to do what you want us to do for you.” I won’t share everything here because I want to respect his privacy, but he made it clear that he wanted to honor her wishes. She looked straight at him, very serious.

“Do you want to live like this?” he asked.

She looked at me, then looked at him. She smiled at him. She smiled at me.

I asked the same question. Again, she looked at Daddy and smiled. Then, at me. Another smile. Dad leaned in and she moved her head up a little. He inched toward her, and she kissed him. I leaned in closer. She kissed me.

“Are we reading you right?” I asked. “You want to keep living like this?”

She smiled again. At me, then at Dad.

We probably asked five more times,  just to be sure, but we were sure. She was sure. We told her we’ll ask again if we think she is in pain. She gave a knowing look. We’re in it together.

It proved something I said many years ago.

You don’t bet against Betty Germer.

The True Beauty of Faye Ellen Himelhoch Valencia

My cousin, the indomitable Faye Ellen Himelhoch Valencia, died this morning at age 48. She is exactly nine months younger than I am, and we grew up together.

We both played the flute, but she was the better flutist. We went to Hebrew class together, but she was way better at Hebrew. We worked on the Sunday school newspaper together, but I wound up being the journalist. We both were raised to be strong women, but she exhibited a strength that leaves me in awe.

Faye had so much courage as she battled the Multiple Sclerosis that first appeared when she was 36. She spent her last several years in a nursing home near her family in Michigan. When I saw her last summer, she had the softest, most perfect skin, and she radiated warmth and love. She was always model beautiful and had a heart that told all of us what it meant to mix true beauty with true grit. She was strong beyond description.

Last week, things spun out of control — at first there was an infection, then a seizure, then heart problems, and now this. I know she is alive again, and new. Her sister Gail told me that she knows Faye is “Flying around up there, finally free of that body.”

My heart hurts. I am thinking of my Aunt Sandy, who has coped with so much grief — losing my larger-than-life  Uncle Bob and her own mother so close together. She visited Faye every day. I can’t imagine how hard it was for her to watch her daughter suffer so, but Aunt Sandy was there. My heart goes to my cousins, Alan and Gail. And to their spouses and children. Their family is in pain, which means all of the families connected to the Himelhoch clan are in pain.

My sadness is especially real for Faye’s two daughters, Alex and Monica, who had to cope with more than any young girls should ever have to face. Now young women, they are their mother’s legacy. She would want them to live rich and vibrant lives, filled with adventure and hope. I wish for them a much easier road than their sweet mother traveled. More than that, I wish them her courage, stamina and determination.

Hours before she died, she took a final look at her beautiful granddaughter and her girls.

What a heroic woman. God bless you, Faye Ellen. I love you and miss you.

The Hardest Decision

I’ve written about my mother many, many times. I used to hope her story would inspire and help others . Now I write about her because it is the only thing I know to do. I feel helpless, but I feel less alone when I know others are hearing about it. You all are carrying me through the saddest moment of my life.
 
My last post described what happened when I went to visit my mother on Saturday. I always knew the day would come in our Alzheimer’s struggle when Mom didn’t recognize me as her daughter. On Saturday, I didn’t recognize her as my mother. I’d seen her days earlier, but her physical appearance has changed. My last post described the experience of realizing that my mother is, indeed, suffering. She can’t move. She can’t talk. She can’t express anything beyond an occasional glance or partial smile.
 
My friend Debbie Deacon wrote something that really touched my heart: “My Mom was robbed of her vim and vigor after a massive stroke. She suffered from dementia after that and declined ever so slowly. Her last two months, she was almost in a comatose state. She too had a feeding tube, but her living will stated that she wanted none of that. We had all things removed and I slept with her for the last 10 days. Our Moms deserve so much more than they are getting — or have gotten in my Mom’s case. They deserve to go out with class, style and, as the saying goes, ‘Oh what a ride!!!!’ What you have posted about the ‘Long Goodbye’ was so very poignant, so incredibly true. It made me cry but I now smile too as my Mom no longer suffers. She is free at last. God Bless you both.”
 
I read those words to my father a few minutes ago, and I know they were hard for him to hear. My amazing father has visited Mom in the nursing home four times a day, every single day, since she went there more than four years ago. He will not leave her. I invited him to a friend’s home on the Weeki Wachee River for Thanksgiving Dinner, but Dad would not miss a day with Mom — not even if we could have arranged it so he could have seen her in the morning and before bedtime. Over the years, I’ve begged him to do something fun with me — go boating, go on a cruise — anything to get him to embrace the fullness of life that exists outside the nursing home. But, for Dad, life’s fullness can only be found beside the woman he has loved since the day they married in 1953.
 
No matter how bad it gets, Dad sees something positive. I was like that until about two months ago. I felt the love my mother still felt for her family, and it buoyed me above the losses we were experiencing. I now think that our positive approach has turned into denial. 
  
Dad called yesterday to tell me he’d wheeled my mother into the cafeteria at the nursing home where a piano player played the University of Michigan fight song for her. He was elated, because Mom smiled and made eye contact. 
 
“Isn’t it wonderful?” he asked.
 
“I don’t thinks so,” I answered. I’d stayed upbeat and positive about Mom’s condition until she became ill and was hospitalized two months ago with an infection. The infection has not gone away, and her long-dormant leukemia has flared up to combat our efforts to help cure the infection. Enough has happened that I believe she is not merely existing, but suffering.
 
“Dad,” I said, “It isn’t wonderful if she gets only one good minute a day.”
 
“I’m satisfied,” he said.
 
“But this isn’t about you or me,” I said. “It’s about Mom. I don’t think this is right.”
 
My mom has a living will where she expressly chose not to be kept alive by artificial means, but she has been fed through a stomach tube for more than three years. When the time came to get it, she said she wanted it. But, that was when she could still communicate. I don’t think she would want this kind of existence. How could she?
 
“Dad, I need to know something,” I said. “There may come a day when I have to make a decision like this for you. What would you want me to do if you are ever in this condition?”
 
“Let me go,” he said.  There was no hesitation.
 
“Then we need to think about what Mom would want.”
 
 
 
Dad says he’s thinking about it. We’ll have a family meeting. I hope we all can talk about it and make the decision Mom would make for herself. 
 
The question is, do we love her enough to let her go?

This is Why They Call Alzheimer’s the “Long Goodbye.”

“There’s your mother, Fawn,” my best friend said as she pointed to a woman crumpled over in a wheelchair near the nurse’s station.

“No, that’s not my mother,” I said.

“Yes, it is.”

I walked over to the woman, certain it was not my mom. Her head and shoulders were completely slumped over, and she was unresponsive. Her hair was whiter than my mother’s hair has ever been, her mouth was completely slack and puffed out in a way I’d never seen. I bent down close to her face, still sure it was not my mother.

But, it was my mother. I couldn’t recognize her even though I’d seen her a few days earlier at the nursing home, when she was in her bed and in the context I’ve come to recognize and accept.

Alzheimer’s Disease is a cruel insult to anyone who suffers its indignity. This is the last, lingering chapter in a story that began with a paralyzing stroke 19 years ago. Mom fought back and faced every obstacle, but things greatly worsened with the appearance of Alzheimer’s Disease in 2001. My mother is now almost lifeless, yet unable to die with the dignity and peace that she deserves. I have always said that acceptance is a mandatory coping tool with this insanity, and acceptance helped me face her decline without regretting what we were losing along the way. I treasured every connection we had, because even when she couldn’t speak, I could feel her love. I do believe she wanted to keep living.

But, there is no acceptance at this point. My mother is suffering. I know this. Even though she is comfortable, I know she is suffering.

I know she doesn’t want this. How could she? She had a living will, but her will to live has kept her going through this crucible without extraordinary means. When the Alzheimer’s robbed her of her ability to swallow, she was given a stomach tube for feeding. She said she wanted it. Now, that tube is keeping her alive, even though there is almost nothing going on in her brain.

After her nurses put her back to bed yesterday, I brushed my fingers against her cheek and told her how much I love her. I sang her the Jewish hymn, Ein Keloheinu. It was her favorite hymn, and the song was one of the last things she remembered how to communicate. She looked at me. The right corner of her mouth became a smile. I love her so much.

I wonder what it is like for her, trapped in so much nothingness. Does she feel the slowness of time passing? What is she thinking? Is she thinking anything? Is she fighting to stay alive, or is she too lost to let go? I am so confused. I hurt for her.

I have some videos that were shot of her before the stroke. I did not watch them — not once — after the stroke changed her voice, appearance and mobility. But, I did  watch them a couple of weeks ago. There was my vibrant, strong, funny, loving, warm, precious mother, and she was talking to me, singing to me, smiling at me, laughing with me… Oh, if I could have just one more minute with her, I would tell her how proud I am of her.

And I’d know she’d hear me.

Long Live Wilma Mankiller

Wilma MankillerWilma Mankiller died of pancreatic cancer today at age 64. She is the first woman to lead the Cherokee Nation as its principal chief and instantly became an icon of women’s history. I interviewed her for Hard Won Wisdom and was so moved by her insight and kindness. She was one strong woman, and I want to share some of her hard won wisdom with you.

On how she was raised: “Nobody in my family ever told us that there were things we couldn’t do because we were female, or things we couldn’t do because we were poor, or things we couldn’t do because we were Native American. When I hear such admonitions from other parents, it makes me grateful for how I was raised. We didn’t feel there were limits on what we could do.”

On attitude: “The single most important lesson I learned by watching people in my community was that it is important to have a good attitude and keep your mind free of negative thoughts. That’s what I observed. I saw people facing the most daunting sense of personal or financial problems, yet they always found something positive in their situation. That had a profound impact on the way I looked at the world. And, it impacted the way I look at other people. They looked at the positive, rather than the negative. That’s important. When you meet people, you can focus on the positive attributes rather than the negative ones. It’s your choice.”

On her health obstacles: Throughout her life, she faced unbelievable adversity, surviving a terrible car accident that forced her to undergo dozens of operations, a neuromuscular disease and a kidney transplant. Of her adversities, she said, “The biggest challenge in my life has been to try to continue with my life and my work while dealing with an unbelievable array of health issues. I’ve dealt with that the same way I dealt with the opposition I had because I was a woman. It’s a problem, I acknowledge it and I try to deal with it the best way I know how, and then move on. Just like I don’t let my energy be siphoned off into questions of whether women should be in leadership, I won’t let my energy be siphoned off by a question of health. I can control my mind when I don’t control my body. I can do what I can to keep myself well and continue on. It’s really a choice. You can dwell on hard or bad things if you want. You don’t have to.”

On her triumph as a woman running for chief: “We live in a relatively conservative area in eastern Oklahoma and I expected my politics to be the issue. I’d been involved in many things that would be considered liberal or even radical. I thought those would be the issue.They weren’t.

“The issue was my being a woman, and I wouldn’t have it.

“I simply told myself that it was a foolish issue, and I wouldn’t argue with a fool. I ignored it and focused on the real issues.When it would come up and someone would say,‘You’re a woman, how will that affect your leadership,’ I said ‘Thanks for asking, now lets talk about health care.’“I did have my tires slashed.And one time when I was marching in a parade, a fellow folded his hand into the shape of a gun and did a pretend shooting of me as I walked on the parade route.That somehow bothered me more than anything. There were other things, like people burning down my signs on the billboards, but it was that man that I remember most. I could have dwelled on the hateful things people were saying to me, but I’d have lost the election.”