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LEADING THE FEDERAL EFFORT ON AGING RESEARCH

Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging


'The Alzheimer's Project: A 4-Part Documentary Series' + HBO logo

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Welcome Letter

Dear Caregiver,

Welcome to our guidebook for caregivers of people with Alzheimer's disease (AD). You know better than anyone that taking care of someone with AD can be truly rewarding and also very challenging. Sometimes caregivers feel like they are on an emotional roller coaster.

We hope this guide, written in clear language, will help you understand and cope with the many challenges of caring for the person with AD. The guidebook begins with quotes from caregivers. These individuals were part of AD support groups at Duke University. We hope their reflections and the information that follows will be helpful to you.

Sincerely,
National Institute on Aging

Quotes from Caregivers

Coping
"I learn what I can fix and I work at it. What I can't fix, I don't worry about."
—Kathleen K.

A Hug
"I find that a hug makes my dad feel more secure, so I try to give him lots of hugs."
—James A.

Adapting
"I can already hear it: 'There's nothing to laugh about when you're a caregiver.' Well, that's what I thought 3 years ago. I cried for a year or more—gained 20 pounds from worrying and eating—you know how that is. Cried some more and it went on and on. Then—I don't know how or when—I began to see that life does go on! And I began to realize that you don't have to wash on the same day every week, groceries will still be in the store if you don't go the same day every week, the house doesn't have to be 'just so,' and you don't have to eat at the same time everyday…This new attitude helped with stress and I began to see things a lot differently—little things weren't BIG anymore. And life went on."
—Mary W.

Anger
"Sure I get angry. But I got angry before Jane got sick. I feel it's part of being human. I give myself a certain amount of time to be angry and then I get over it."
—A man who has cared for his wife for 15 years

Decision making
"Good advice from a friend regarding placing a loved one in an assisted living or other care facility: 'Do your research, ask questions…make the decision.'"
—Alex N.

Getting Help
"I was standing in the grocery store, totally exhausted, trying to decide what I had come for. I looked down at my cart and all I had were diapers for my incontinent mother and for my two-year-old grandson. Diapers were the only thing I could remember. I had asked a neighbor to stay with my mother and Tim because we were out of everything and there I was. I couldn't remember what I had come for. It was this simple incident that forced me to consider getting help. For almost a year I had been walking around in a semi-trance trying to do everything myself. I had to face the fact that this situation was no longer safe for my mother, for Tim, or for me." 
—E. W.

Loneliness
"There is nothing as lonely as fixing three meals a day for someone who can no longer talk to you."
—A wife

Love
"Even I wonder why I can sit daily by his side as I play tapes, relate bits and pieces of news, hold his hand, tell him I love him. Yet I am content when I am with him, though I grieve for the loss of his smile, the sound of my name on his lips."
—Mrs. C.

Rewards of Caregiving
"He has given me so much all my life, and now he can only take. Yet his presence now, as always, provides deep comfort to my soul. Now I give to him in every way I can. I realize that my giving to him is a result of his giving to me: emotional support, love, spiritual direction, wisdom, advice, and all that a daughter needs when she is maturing into a young woman."
—Phyllis I.

Verbal Abuse
"My mom cusses at me every day, usually in public, and usually loudly. I suppose I am beyond the point of being mortified. There's nothing to do but accept it with good humor. That did not come easily or quickly. People in the support group tell me that this period probably will not last."
—Lucille

Small Pleasures
"Little things—like a single flower blooming in an unexpected place or a loaf of bread that turned out perfectly, as well as things that aren't perfect but are wonderful nonetheless—are all things that I have learned to pay attention to and to truly appreciate. Finding beauty helps me handle the pain."
—An 88 year-old woman whose son has AD

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Page last updated Jul 20, 2009

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