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Alzheimer's: Our Journey Will Not Be In Vain

Clookie's Story

Sept. 6, 2001, started out as a regular day. I went to work, took Mom to another doctor appointment -- nothing too unusual. Except this day, and that doctor's appointment, had the potential to change our lives forever.

I will always remember the moment the geriatrics social worker told me, "Your concerns are confirmed. Your mother has Alzheimer's disease.

"Mom didn't cry; she took it like a warrior"

"The doctor would like to know if he should tell your mom that she has probable Alzheimer's disease," she continued. "He won't, if you ask him not to." I could barely hear her through the tears in my eyes and my brain screaming, "NO, NO, NO!" I did however, recognize myself uttering something like, "Honesty is best," or "She would want to know." I know I said something; I just can't remember that part. Mom didn't cry; she took it like a warrior.

She was prescribed Aricept and we walked out of the office like zombies. I know the doctor and the social worker were telling us more information about what and when and how. I just can't remember that part either.

After the News

We went to lunch right after the news. We then started to discuss how to handle telling other people the diagnosis. That warrior lady I had first noticed in the doctor's office was still at lunch with us, and I was in awe of her.

Mom is 76 years young, very active in her church, loves bowling, golfing, traveling, and just plain socializing with everyone. She was a caregiver for my father during his last 10 years of life after he had multiple heart attacks and strokes, so she already has a picture of what may happen in her future. She knows that her friends will rally around her and keep her as active as possible, but as she wears out so will they.

"As for me...depression became my best friend"

This wonderful woman opened her heart wide to love me, unconditionally, for my entire life. Now I will make sure she knows that she made the right decision.

As for me, after the diagnosis, depression became my best friend. I was the general manager of two retail stores that kept me at work 80+ hours a week. I was a workaholic and proud of it, too! For the next 20 days I went through all the motions: Call the Alzheimer's Association, tell the rest of the family, go to work, keep your 30 employees happy, and don't bring your problems to work! Because that's what I had been telling my staff to do for the past nine years.

On the 20th day I resigned from my job. Big decision, because I am the major breadwinner in my family. Who needs money? I was going to be the one to take care of Mom. My decision. That's final. After all, isn't that why I was adopted? Yes, I need to "pay it forward." This wonderful woman opened her heart wide to love me, unconditionally, for my entire life. Now, 43 years later, I will make sure she knows that she made the right decision.

And of course, she will live with me, never in a nursing home. I promised her that.

Support

Fast-forward to today. It's about eight months later, but it seems like a lifetime. I am proud of what has been accomplished by both of us in our journey thus far. I will share my list of our accomplishments with you. I hope you may share in my joy.

  • I volunteer for our local Alzheimer's Association. Free education is great!
  • Mom has entered into Alzheimer's disease research trials.
  • Mom and I have filmed a news release on the research trials she is in.
  • My brother and I are also involved in research on the children of parents with Alzheimer's. Since I was adopted, I am a "control subject."
  • Mom is continuing to golf and bowl and socialize, with the help of many friends who take her and "coach" her through the rough spots.
  • I have risen above the depression and taken on the warrior role.
  • I joined an exercise group and take care of myself more now than ever.
  • I rejoined my family. Gosh, my kids grew up without me!
  • Mom has joined a support group for people that have Alzheimer's.
  • I joined a support group for caregivers.
  • I go to classes specifically for caregivers that the local Area Agency on Aging offers.
  • I post on the best message board on the web. I gather strength, courage, and knowledge from the other people who post.
  • I am redirecting my life and my next potential career towards healthcare, specifically healthcare in the dementia field.

"I have learned that I can't meet all of her needs and still be her daughter."

Change

I feel good about my future and my mother's future. I have accepted that I have no control of the disease or the cure. I have accepted what may be my mother's eventual destination. Since I cannot control the destination, I will control the journey for both of us. Our journey will not be in vain.

I have learned that I can't meet all of her needs and still be her daughter.

Oh, about that earlier promise I made -- the one about the nursing home? I made a mistake. Eight months later, after many books, many support group meetings and many more hours with my mother, I have come to realize that I spoke too soon.

I have learned that I can't meet all of her needs and still be her daughter. I have learned that she will not thrive living with me. I will not thrive, nor will my family thrive if she moves in with us. She and I will become prisoners. Outside help or not, no one will win in our situation. My decision. My guilt when I finally tell her of my mistake. I will tell her soon.

Although my story is only eight months old, I don't feel like a novice anymore. Since I am not a veteran of this journey I anticipate more good days and bad days and an education in life that I never thought I would encounter.

I'm happy, Mom's happy. I look forward to updating my story in the future.

The member story above may have been edited for clarity.

From WebMD: Alzheimer's afflicts 1 in 10 people over age 65 and nearly half of all people age 85 and over -- or up to 4 million Americans. The disease plays no favorites, attacking rich and poor, famous and ordinary. Among its most famous sufferers: former President Ronald Reagan.

Although no cure for Alzheimer's is available now, planning and medical/social management can help ease the burden on both patient and family members. Physical exercise, good nutrition, and social activities are important. A calm, structured environment may also help the person to continue functioning.

The Alzheimer's Association, the only national voluntary health organization dedicated to Alzheimer's research, provides education and support services for patients, families, and caregivers. Founded in 1980 by family caregivers, today there are more than 200 chapters in 50 states.

"From WebMD" is taken from previously published WebMD content and has been medically reviewed by WebMD physicians.

© 2002 WebMD Inc. All rights reserved.