This blog is about life with my husband who was diagnosed with Early Onset Alzheimer's and Frontal Lobe Dementia in 2008. He was 64 at the time although now, knowing more about the disease, Alzheimer's was present many, many years ago, which is why early detection is so important. As you read the blog the character"Al" that I created in 2008 represents the way that Alzheimer's is invading our daily lives.

Friday, February 12, 2016

Living with Bob and "Al"

Sheri has seen many articles on whether lying to dementia patients is okay. The lies we tell because they don't remember things such as the parent died and you don't want them to relive that pain. Or they are fearful and want to go home and you say they will go home soon. Sheri is certainly not an expert on the subject nor does she condone lying in "our" real world but here is the thing, the Alzheimer world is not "our" real world, and for the those of us caring for someone with an"Al" playing havoc in their mind the lie is a form of comfort that is part of meeting them in their world, meeting them where they are, which is one of the ways to calm them, comfort them, and help them live in what has become their reality. We are the ones with the flexible thinking and we need to use it. Hence Sheri made the decision to take some of the stress of  the morning off of herself by figuring out how to get Bob to ride the Metro Mobility bus to his "work" (code for Adult Day Center) in the morning. This is door to door, person to person service because he as listed has 100% disabled. The only convincing Sheri had to do was to explain that "work" had sent the choir bus to pick him up, because they want to make sure he is there for choir and although hesitant the first day or two "Al" is now bragging about the royal treatment he is getting from "work". Flexible thinking is okay and necessary to survive in their world :)

11 comments:

  1. Sheri, the choir bus is absolutely lovely! Really made me smile.

    I think people put far too much into this idea of 100% truth all the time... the t-word is not more sacred than caring about other peoples' feelings, no way. I think there are even times in the real world where if we know it will hurt someone, we should just shut our mouths. It means we always need to think of the individual and whether our need to tell the truth is more important than their need to hear it.

    Telling a truth which will hurt should never done just to avoid the guilt of lying, or merely to unburden ourselves. That's selfish.

    In the case of Al, you have it exactly right. Better for us to lie, know that we lied, wish that things were different, but know that we've done the right thing for Al.

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  2. I've read lots about this issue too and the conclusion that I've come to is not to burden someone with something that they no longer have the cognitive capacity to process. Excellent flexible thinking re the VIP 'choir bus ;)

    By the way, I book that I found really helpful on this subject(for anyone who still has time to read books) was 'Contented Dementia' by Oliver James. Don't agree with it all, but helped my thinking at a stage when I needed it. Hang in there!

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  3. Great idea! You need to shape his world to protect and comfort him and that is what you did. Anything you can do to carve out a few minutes for yourself ultimately allows you to be a better caregiver.

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  4. I totally agree with you on this one. White lies are in order in this case absolutely! Keep up the good work!

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  5. Fantastic solution that works for everyone!

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  6. I believe whole heartily that your choice is the correct one, it allows bob to feel computable and also special since he is getting the royal treatment from work.

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