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My best friend is still here, but I miss her

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Published:   |   Updated: March 21, 2013 at 12:08 AM

I watch my mom try to stab a piece of chicken with her fork. She can't do it. Finally, I lose my resolve and do it for her.

She opens her mouth like a baby bird. And my heart breaks over again.

It wasn't supposed to be like this. Now it's here, and I feel helpless.

We talked about everything before; why not this? She would say, "If I get cancer, no chemo. No radiation. No poison in my body." My mom was a health fanatic. She popped dozens of vitamins a day and avoided doctors. She was the "hot" mom who always looked years younger than her age.

She still has the turned-up nose and creamy skin that belie her 76 years. But her trim figure is losing its muscle tone because mobility is a problem these days. Her hair, always blonde and ever-changing in style, is now mostly tied back and hinting of white. She had curious gray eyes that now stare at me blankly, not giving away anything.

I'm the oldest of four daughters. Mom was just 20 when she had me. She always said, "I've known you and loved you the longest. You'll always be the first." That made me feel special and somewhat superior.

She's always been my mom, but as the years went on, she became my friend and confidante. When miles separated us, it didn't matter. We spoke by phone nearly every day.

I depended on her advice. Romance, career, finances, weight, fashion, it didn't matter. She always had my back and an unwavering support and confidence in me. To her, I could do anything if I put my mind to it. I was smart, beautiful and resourceful. I was her first and she was proud of me. I felt comforted knowing that no matter how many people gave up on me or I let down, my mom would still be my champion. Don't worry, she'd say, we can get through this.

I need her advice more than ever now. What can I do to make this better for you, Mom? I never had children; I'm not so good with care giving. I hold her hand and tell her I love her, but it doesn't seem like enough.

Six years ago, she drove up from Sarasota without my stepdad and got hopelessly lost, ending up by the fairgrounds. "You've come up a million times! How did that happen?" I chided her after several phone calls to get her re-routed. She dismissed it, saying she was bad at directions.

There were other signs. She started blanking out in mid-sentence, struggling for the right words. She used to love a good, friendly verbal sparring match, though you could never trust the statistics she tossed out to support her arguments.

She began repeating my questions before answering them. Her ever-present smile and cheerful nature began to dissolve. She got more negative and lackluster. She began losing some of her pizzazz.

After much prodding and bribing by her daughters, she agreed to some tests. When doctors told her she had frontotemporal dementia, she seemed pleased. "See, I told you it wasn't Alzheimer's," she said. "You girls were blowing this all out of proportion."

What we didn't know is that my mom had a disease even more insidious, even more debilitating. She would not lose her memory, but she would eventually lose her coordination and balance, her fluid speech skills, her social "filter" (beware of what Mom will say, because she has no boundaries) and her ability to concentrate.

As many as 7 million Americans are afflicted with some sort of dementia. My mom didn't catch a break on this one. Only about 2 to 5 percent end up with FTD, as it's called, and family history can play a role. There wasn't any in my mom's background. Now my sisters and I wonder: Will one of us get this? We make secret promises among ourselves. Stash away some pills to ensure a peaceful, forever sleep. We can't end up like Mom.

On top of everything else, her bones are failing her. Two falls resulted in a broken shoulder and a cracked femur, requiring surgeries that further damaged her brain. There is no bouncing back from anesthesia for a dementia patient.

Mom has been in and out of rehab centers, and this much I've learned: No matter how good they are, they are never good enough. The food is passable; the care is sketchy, depending on the shift. We are lucky Mom had enough money to provide her in-home care, but the cost is alarming and her stash is rapidly being drained. She has to be watched constantly. It doesn't help matters that she is restless and constantly tries to get up. If you're not there to hold on to her, she falls right down.

At night she sleeps in the guest room in a hospital bed with rails, tethered to a monitor that alerts my stepfather if she tries to get up to go the bathroom. He doesn't get much sleep. Care giving is taking a toll on his health.

This lack of independence, this slow slide to the end, this inability to articulate - my mother detests it all. Sometimes, she can speak with such clarity, which reminds me that her mind is still there. "I have no quality of life," she says flatly.

I miss my best friend. I am not angry at God, because I know this is the natural course of life. I just wish I had talked more about "What next?" with her. She was distrustful of organized religion, telling us simply to follow the Ten Commandments and the Golden Rule. I want to know if she thinks of God, of heaven, or what eternal life holds. Does she believe she will see her parents again?

I am trying to treasure these moments. When I see what a struggle life has become for her, I know I am being selfish in wanting her to always be here. I can't imagine life without my mom, but losing her in little bits is showing me the future. I wish we had talked about this, so I would know what to do, how to feel. She was always my lighthouse in the storm.

As the light fades away, I feel I have lost my compass. To her, I owe so much. What I can give to her now seems to pale in comparison. I need her to tell me that it's OK, that we can get through this.

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