5 Things People with Alzheimer’s Want to Tell You

To honor National Alzheimer’s Disease Awareness Month, we asked men and women who are living with Alzheimer’s to share their thoughts on what they’d like to tell the world:

  • I’ve been diagnosed, not defined, see the real me: “I am not a diagnostic or a statistic. I still have feelings, thoughts, dreams, hopes and plans. There are many things I can still do. I am not sitting in a wheelchair in a nursing home staring out the window—not yet. I am a vibrant, loving person. Always remember: I have Alzheimer’s, it does not have me.”
  • I can’t do this alone, help me: “I need you to help me find ways to succeed at helping others and in doing something significant with my life. I am very capable of putting thoughts together and expressing them. I sometimes need help understanding things, but that does not mean that I don’t understand. I sometimes need help expressing things, but that doesn’t mean I have no thoughts, and nothing to say. Help me when I need it, and let me do all I can, while I still can.”
  • I am worthy, respect me: “I need to feel that what I say and do matters. I have much yet to offer the world. In many ways, I have more to offer than someone who has not read the final chapter of their life yet. I have lived life, my life, and I am worthy of respect, just as I was before.”
  • I am scared, comfort me: “I am scared of the unknown. I don’t know if I have six months to communicate, or six years. I worry about going to bed at night and whether I’m going to be as bad tomorrow. This disease is with you 24/7. It’s my brain and I can’t get away from it—it is a scary thing.”
  • I crave compassion, love me: “I need to feel loved and needed, and that my contribution to life matters and helps someone else. I need to feel loved and not rejected because of my diagnosis. I need people to meet and accept me where I am at, right now…It’s important to understand that I don’t understand. I don’t have any idea why I forget some things and remember others. It’s not intentional—I just don’t have the ability to realize what I’m doing wrong.”

Helping those affected by Alzheimers

The heartbreaking reality is that almost every person reading this post will in some way be affected by Alzheimer’s disease. While nothing can truly prepare you for the emotional, financial and spiritual gauntlet that is dementia, it is possible for each of us to help create a better world for those with the condition.

Ultimately, it’s about making Alzheimer’s awareness an ongoing effort—not just for one month out of the year. And while donating money is a helpful step, perhaps a more profound donation is that of the time necessary to educate ourselves (and others) about the realities of the disease and the challenges faced by those who have it.

As science strives for a medicinal cure, we must do our best to support those for whom such a cure will probably come too late—the five million Americans currently living with Alzheimer’s disease, and their families.

Three of these families have shared their story in the online narrative: “Fade to Blank: Life Inside Alzheimer’s” as a way to help others understand the true impact of the disease on the lives of patients and their loved ones. Their raw, unfiltered perspective offers a glimpse into a complex world of love, fear, hope and anguish.

How will you support Alzheimer’s patients and caregivers this month (and all year long)? Share your thoughts below.

Related
Science Proves What Alzheimer’s Caregivers Have Known All Along
This 13-Year-Old Caregiver’s School Essay Will Blow Your Mind
Alzheimer’s Can’t Stop a Mother’s Love
How to Really Relax
Alzheimer’s Unexpected Gift

97 comments

JL A.
JL A2 years ago

good to remember

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Danuta Watola
Danuta W3 years ago

Thank you for posting

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Julie C.
Julie C3 years ago

Remember that Alzheimer's is not a straight line disease. People have more memory at some times than others. Sometimes they know you, sometimes not. Sometimes you have to tell them bad news over and over again, maybe months apart. It's hard not to get exasperated, frustrated, even angry, but it's not their fault. Caretakers have to have help, both time off and someone to talk to.

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ERIKA SOMLAI
ERIKA S3 years ago

noted,thank you

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Slava R.
Slava R3 years ago

cool

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Charles Brady
Charles Brady3 years ago

It's wonderful when people with Alzheimer's have someone to care for them. Those caregivers need support as well. Caring for a person with Alzheimer's can really wear one down to a nub.

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Panchali Yapa
Panchali Yapa3 years ago

Thank you

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Rhonda B.
Rhonda B3 years ago

Thank you for sharing.

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Janet B.
Janet B3 years ago

Thanks

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