An open letter to the families of dementia patients

Imagine a room full of people you love, all asking questions about things that happened 30 years ago. Now imagine they’re yelling those questions — and looking at you as if their hearts might break if you don’t remember the right answers.

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  • Editor's note: This article was originally published in the Gwinnett Daily Post by Rob Jenkins and Alise Hickman. It is being used by permission. Alise Hickman is a professional caregiver who has worked in Elder Care for over a decade. These are her thoughts and mostly her words.

  • Dear loved one,

  • Dementia is a cruel disease that seems to rob us of our loved ones long before it takes their bodies. I understand that better than most.

  • I know when you see me caring for your elderly parent, you have mixed emotions. Relief, of course, that someone is there to do the things you would probably, on some level, prefer not to do. But guilt, too, for feeling that way and for not being there for them in the way you think you ought to be. And maybe a little jealousy because someone, who is not even a member of the family is doing the things you are not.

  • Please understand that I'm not trying to take your place in your loved one's heart. No one could do that. He's your dad. But I'm not here to take care of your dad. I'm here to care for George.

  • In George's eyes, you're still his little princess, someone to protect and lookout for. Deep inside, he will never be OK with your changing his diapers, bathing him or spoon-feeding him. Whenever you visit, George clings to my hand — not yours — because he's afraid. Not afraid OF you, but afraid of hurting you. His dementia may not allow him to remember who you are, but his heart knows you're his.

  • Dementia doesn't really take him away from you. It just puts him on a different frequency. Sometimes he needs a translator. That's one of the reasons I'm here.

  • Imagine a room full of people you love, all asking questions about things that happened 30 years ago. Now imagine they're yelling those questions — and looking at you as if their hearts might break if you don't remember the right answers. That would be too much for anyone to bear.

  • At those times, I stay in the room not to be intrusive, but because George knows that I can easily deflect your questions to myself — because he's told me all those stories and more. Did you know your dad remembers the bike ramp you built when you were 10? The one he repeatedly told you not to build because you'd fall? And you did. He was pretty impressed with how well you hid that scraped knee.

  • Or how about the time your sister ran into Mr. Jones's car, and you helped her keep it secret? He remembers that, too — as well as how you mowed Mr. Jones's lawn to pay for the damage and taught your sister how to parallel park.

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  • You are indeed a loved one, more loved than you know. So return that love. I am a caregiver. Let me give care. That is what your dad would want but cannot say. I am here to say it for him.

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Rob Jenkins is a newspaper columnist, a happily-married father of four, and the author of "Family Man: The Art of Surviving Domestic Tranquility," available on Amazon. E-mail Rob at or follow him on Twitter .

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