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Join loved one's dementia world for their sake

Carol Bursack of Minding Our Elders

Dear Carol: My father has Lewy body dementia and he hallucinates, which I understand is part of the disease. I was raised to not lie. Your writing, as well as articles on the Alzheimer's Association website and that of many medical people, seems to advocate lying to your parents or spouse once they have dementia.

When my dad tells me that he sees people in the garden who aren't there and wants to know what he should do, I get frustrated. I tell him that no one is there and that he's imagining it. Then he gets upset and insists that two people are out there. Next, I get mad because he won't believe that no one is out there. I don't want to lie. What should I do? Lana

Dear Lana: I admire your dedication to honesty, but when it comes to dementia, some truths depend on what the person can process. In this case, your father's truth — his reality — is different from yours because his brain has been impaired by his disease, but what he sees is no less real to him than your truth is to you.

For that reason, what may at first glance seem like lying is only compassionate understanding of a person living with dementia and how his brain now functions.

Back when my dad's brain surgery left him with dementia, there was little known about how to cope with people who could no longer cognitively live in our world. The recommended approach at the time was re-orientation, which meant insisting that the person living with dementia come back to our reality. I was deeply uncomfortable about that since disproven philosophy, so I went with my heart.

Dad felt that he could still run his office, so I became his office manager. I took dictation. I went home and answered the letters that he had me write to community leaders and mailed "their" answers to Dad. The list goes on, but in essence, what I did was slip into Dad's world. Never, during that time, did it feel to me like I was lying. I was simply living Dad's reality. His truth.

Looking at your example, I'd suggest that you tell your dad that you, too, wonder what those people are doing there and tell him that you'll go out and see what it's all about. Tell him that meanwhile maybe he could check and see if the garage door is locked. After you've gone outside and come back in, you could tell him that the people just needed to ask directions. Then move on.

While in the real world facts are facts, when we deal on a personal level with people who have extreme brain dysfunction, it's up to us to try to sense where they are coming from. It will take a shift in your thinking to succeed in the process of joining him in his world, but try to realize that you aren't actually lying. You are practicing compassionate caregiving.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carolbursack@msn.com.

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