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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.”

It was a bumpy flight, but the turbulence stopped.

I am blogging from the roughest flight I have ever experienced in my life. We’ve been jerked and tossed and, three times, we’ve felt the panic that comes by a sudden downward plunge.

I’m sitting next to a really sweet, 22-year-old woman, a white-knuckled flyer who doesn’t enjoy the turbulence. I reassurred her that we’d be fine, but then it hit me — if you can’t make peace with the inevitable turbulance, you never get to go anywhere. It hit me that this flight is a metaphor for what many of us have experienced with our careers over the last 18 months.  

Several months ago, I delivered a keynote for a high-budget, incredibly well-produced event. The association spent hundreds of thousands of dollars on production — and it showed. I told the producer how impressed I was and he said something so inspiring and memorable that I have treasured ever since.

“I haven’t worked in six months. I love what I do. I am fighting to be able to do the work I love.”

Those words never left me because it struck me that is what we are all doing now. We are fighting for the right to do the work we love. Basically, we’ve been asked to reapply for our jobs, then reapply ourselves to prove how much we deserve our success.

I know that many have found the challenges they’ve faced to be frustrating and unfair, but some of us have actually welcomed them and experienced a reward we wouldn’t have gotten if the economy hadn’t knocked us around a little bit. The turmoil forced us to refocus and recommit. Doing that has made me truly appreciate how lucky I am to be able to fight to do work I love so much. I remember another corporate speaker telling me, “My calendar is empty. How are we supposed to find anything at a time when corporations are laying off tens of thousands of people.” Maybe my business was a little lighter last year, but it was more fun because I used the opportunity to try some creative marketing techniques that worked. This year is turning out fantastic. But, again, I am fighting for the right to do the work I love — just like that producer, and just like everybody else.

Those of us who made up our minds to stop fixating on the turbulence of the economy and, instead, shift and turn and figure things out have, for the most part, done well in spite of the downturn. Those who thought they would wait until things got “back to normal” saw their businesses decimated. Those who kept on doing things the way they have always done them saw huge losses.

It was a bumpy flight, but the turbulence stopped. Amazing how that always works in this crazy life.

We’re landing now. Safe and sound.

Fire the jerk. Taking control when you’ve given your power away.

This is the latest in a series on dealing with control issues.

There are bosses who try to micromanage everything in order to control the outcome, and what do they accomplish? They alienate their people, get no buy-in or support, and ultimately scramble to achieve their goals.

How does it feel when someone is trying to control you? Not good. I kind of like my free will, and I’m pretty sure you like it, too. I don’t like someone telling me when or where or how or why. I like to feel that others respect and value my judgment enough to let me do my best – whether the issue is professional or personal. I welcome constructive criticism because others can see places where I can improve my game. But I don’t welcome the hovering presence of a control freak who is so neurotic that he or she can’t let me be my best self.

You can probably imagine that I am inclined to fight back when that happens. But I am floored by the legions of people who find themselves in jobs, relationships, friendships and other situations where they get pushed around. There is certainly no shortage of controlling partners who will pick away until they have wiped out the confidence and self-direction of a less-assertive partner. If you find yourself being pushed around by someone who acts like he or she knows better than you, you’ve got to take responsibility for giving your power away. You are the one allowing it and you’ve got to ask yourself why. Do you need someone to tell you how to do things their way or do you need to find someone who respects you enough to let you do it yourself?

I know a woman whose husband controls everything, from how she styles her hair to when (and how) they are going to be intimate. She is always telling me, “I feel so out of control,” and she is – because she lets herself be bullied and lets someone else dominate her world. Sometimes you have to take chances – at the risk of a relationship – in order to salvage your individual self. You have to honor who you are, or you are no one at all.

How do you do that? By setting boundaries and making choices. I have had more than one bullying boss, and I learned to deal with them in different ways. One guy was normally loveable, but he had a terrible temper that would blow before he got all the information he needed. This was back when I was a reporter and he blew up at me in the middle of the newsroom, yelling because he thought I didn’t do an assignment, but I’d done it –he just looked for it in the wrong computer file.

 “Don’t ever yell at me in public like that again,” I told him as I pulled him into his office. “It is unprofessional and I am not going to take it. Second, I did the assignment. It’s right where it is supposed to be. You have made a big scene out there based on your bad information and now you need to go out there and publicly set the record straight.” And, he did. He apologized right in front of everyone.

But, another bullying boss would blow up at everybody and, when he blew up at me, there was no setting him straight. That was the way he was. He didn’t care about being fair or decent. He didn’t care about how we felt about how we were treated. He walked around the room with his “I’m the boss!” attitude and, believe me, he was the boss. At least, until I decided that he wasn’t.

It is amazing how much power an individual can have over you until you decide you have had enough and take the steps to make change. In this case, I had enough, did my resume and got another job. Once I moved on, he couldn’t control another single thing in my life.

When others have control over you, it is because you relinquish it to them. You are not a prison inmate who has relinquished your right to live and breathe in the way that you choose. But, you do have the decision to stay in controlling relationships and controlling work environments – or not.

You can fire your boss. You can dump a bullying spouse or partner.  It may not seem like you are in charge of your own life, but you are.

Life unfolds the way it is going to unfold.

This is the first in a series of posts on dealing with control issues.

I always say, “Make a plan for what you want to do with your life. It’s the greatest piece of fiction you will ever write.”

Truly. Life unfolds. You cannot force, command, direct, ordain, bully, manage or control it. You just can’t. As soon as you think you have everything all figured out, you slam right into an obstacle. There goes the plan.

If we could control life, we’d all have millions in the bank, excellent health, gorgeous spouses or partners, perfectly behaved children, fully functional families and, well, you get what I mean. Life would be oh-so-pretty on every given day. It would be predictable and it would be fair.

It would also be boring.

There is so much in life that is out of our control, yet we feel some urge to manage the unmanageable to achieve the outcome we want. We want people to think, react and behave  the way we want them to. We want our efforts to be successful. We want to know where we are headed, but sometimes we just can’t.

You could be on the greatest run of your career, only to find out that you have cancer. You get it together, adjust your plan of what is ahead and gear up to do what you have to do to beat the disease. But, sometimes it isn’t up to you. Sometimes, life comes at you in ways that are brutal and unfair. It’s all part of the growth experience.

You can’t control what happens to you, but you can control your reaction. Look at how many people have been shocked to learn their spouses have been cheating or living secret lives. And how many people have devoted their lives to companies that were quick to dismiss them when times got tough. Look how many people thought they had secure retirements, only to see their investments disappear.

Life is fragile and unpredictable. It turns on a dime. One day you are healthy, the next day you are not. One day you are happily married, the next day you are not. One day you are gainfully employed, the next day you are not. We are constantly faced with an uncertainty that is so unsettling to some that, rather than learning to ride the waves, they try in vain to control the tide.

Life can’t be controlled.

The High Point of My Weekend…

My mom is doing a little better, and I went out for some excitement!

What You Can Do

By Request — Perspective on How Small Our Problems Are in a VERY Big Universe

We All Lost When Robin Conyers Died

I just heard that Robin Conyers died of breast cancer last month. From her, I learned to never, never, never quit. I moderated a panel for Kraft where Robin stopped the show with her story. She is one of the most incredible women I have ever met and her passing is a loss to all of us. Please experience her legacy in this touching video.

The Best Gift Book This Year!

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