A Conversation With Someone Who Has Early Onset Alzheimer’s

Michelle* has Early Onset Alzheimer’s Disease (EOAD). A person is categorized as having EOAD when they have symptoms or the disease before the age of 65. Michelle was diagnosed in 2011 and since then she has been grappling with the changes in herself, the changes that are yet to come and the reactions of her friends and family. She finds herself alone, confused, depressed and extremely worried about the bleak future as she progresses into the dementia.

Michelle has been sleeping late into the day. When I asked her if she has been doing this often, she got worried. “Is this bad? Is it not normal?” I reassured her that sleeping late into the day usually meant that she was not sleeping well at night, and sleeping late or during the day meant not being able to sleep at night. I reminded her that this cycle needed to break. I suggested she create a schedule and try to stick to it, which meant limiting her caffeine intake to one cup in the morning, taking a warm bath at night, setting an alarm for the morning and having a list of things to do each day. I advised her to discuss her sleep difficulties with her doctor if she wasn’t able to fall asleep even after making the changes. Michelle said she would first try to adjust her schedule and that she felt it might help her sleep cycle.

I asked her if there was anything else she wanted to talk about. She told me how her mother also had Alzheimer’s and had a slow and degrading death. She couldn’t speak, eat, walk or even move without help before she died. Michelle said she feels depressed when she thinks of herself becoming like that. I said, “Michelle, I am sorry. I wish I could tell you it was not going to be like that. But it might be. But if you keep thinking about how bad it is going to be in the future, it will become really bad right now. And then you lose right now too!” She was quiet. I continued, “Forget Alzheimer’s for a moment. Would you not give the same advice to your daughter if she was upset about what the future holds?” Michelle said, “Yes. It makes me sad and then I don’t want to do anything.” I said, “Exactly! And then today is lost. When it could have been better!” She said, “You are right. I am going to try.” I was relieved.

Michelle talked of her daughter. She said, “I keep repeating myself and my daughter loses her patience with me. I want to say the right thing so that she can understand, but the words don’t come to me and then she feels frustrated.” I noticed that there was no hurt in her voice, but a concern for her daughter. I was very touched. I said, “Michelle, you are such a wonderful person. Even during the toughest time of your life, you are concerned about how your daughter is coping. Most people I know would be really upset with their loved ones by now. You are simply amazing!” Michelle is planning on creating a team and participating in the Walk to End Alzheimer’s and raise money. I brought that up, “You’re remarkably strong. You’re creating this team to raise money and awareness. That’s not something a weak or depressed person would do. You are a strong and amazing person!” Michelle said, “Oh thank you for saying that.”

I continued, “Michelle, I want you to not make yourself upset. I want you to be grateful. Today is a good day. You are talking to me and if I didn’t know about your diagnosis, I would not have been able to tell! You’re having a good day. Don’t lose it by fearing the future. You are too important to do this!” Michelle sounded surprised, “You know, no one has ever said that to me.” I was not going to stop at that. “Michelle, just because you have Alzheimer’s, doesn’t mean you are not important. You are important. Very important.” She said to me, “Thank you. Your words mean so much to me. They as if woke me up from my sleep. I feel so much better. Thank you. You talk to me of how you think I am a good person, I want to tell you that you have a beautiful heart. Your words make me feel alive.” By now, I wanted to cry. I said, “Thank you so much for saying this. It means a lot to me.”

She asked me my name. I told her. And she repeated it perfectly. For the record, she is the only person in America who says my name exactly the way it is supposed to be said! And I told her that. I could tell she was happy. She said, “I want to say your name correctly. You make me want to get up and do things. You have a wonderful heart. Your words they mean so much to me.” I told her, “I am glad you feel that way. I want you to smile as much as you can, everyday. I want you to be grateful for all the things you can still do and not worry about what you could do in the past, or what you will not be able to do in the future.” Knowing that she was a Christian, I reminded her about the hymn, “One day at a time” and she was very excited. She said she would download the song and listen to it everyday.

Michelle told me that she had been going to an Adult Day Center for a few hours for the last few weeks. But some days she just didn’t want to go. The other people there were much more advanced into their dementia and it made her sad. I went back to the perspective thing again, “But you can still do so many things. Instead of worrying about when you will get to that stage, you can comfort them right now. You can hold their hand or smile at them. You are still not there, and don’t go there before you need to.” She said, “I never thought of it like that. After I hang up the phone, I am going to call them and tell them that I am on my way. And I am going to go there with a smile. I don’t know how to thank you.”

I said, “The only way to thank me is to smile as often as you can and by not losing today.” Michelle said, “Today is not lost because of you. You are a wonderful person.”

I needed to take a 10-minute break to just let myself cry.

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*Name changed to protect privacy

I have been a caregiver to my mom who had EOAD in her 40s. I have made a decision to dedicate my life to helping people affected by Alzheimer’s.

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