Friday, October 26, 2012

Angels and Light

Bob and I have been fortunate to be able to live our dream life in Bali where we settled twenty-two years ago. We didn't know that dream would include Alzheimer's, although we had a inkling since it's in his family. Over the years we created our own carving and jewelry business and were thriving when the diagnosis came.

For the first ten years of the disease I was Bob's primary care giver, taking up the slack left by Alz, taking on more and more responsibilities in our business, 'World on a String'. Fortunately living in a developing country I could hire help when needed.

And I seem to attract angels. No, I don't mean the winged variety, but people who come to my rescue when the going gets tough and I can't find a life preserver. In Bali there are no support groups, no residential care, no day care and no official Alzheimer's caregivers.  I often felt I was reinventing the wheel from information garnered from the Internet and books. Then when I hired Nano and Ketut, two Balinese men to train as caregivers, we became three wheel-inventors.

The Balinese are caring and compassionate. They live in extended family compounds and take care of their frail and elderly. The don't send them away; there's no where to send them.

The most recent angels to come along were a honeymooning French couple. We met at Galungan, a holiday likened to our Christmas in importance. It turns out they're both psychologists specializing in caregivers of dementia patients as well as the patients themselves. I couldn't have received a better Galunan gift - Merci Beaucoup!

They spent about an hour with me imparting fresh ideas I'd not heard before. Lighting was an eye opener! According to this lovely couple, people with dementia see in contrasts. Not only does their peripheral vision narrow but the ability to detect subtle colors is also affected.

Shadows become distressing. To the Alz person shadows are dark spaces but they can't tell if it's a hole or solid and they can't discern the subtle clues that tell us what's in the shadow.  This revelation explained so much of Bob's behavior.

By lighting the living area to limit the amount of dark places, the person is soothed, less anxious. The couple suggested that Sundowner's may be caused by inadequate light as the sun gets lower in the sky.

We installed more lighting fixtures for Bob, lighting the garden at night, turning on the veranda light in the afternoon as well those in the interior of the house. By using LED lights we are actually using less power than before with much brighter results. Now at night when Bob gets up to pee and peaks out the blinds he sees there's a garden out there and not some frightening unknown, causing him anxiety and the need to wander.

After a few weeks his caregivers report that he's more relaxed, sleeps better at night, and seems happier. They really think the lights have made a difference.

The angels also told me about color but I'll save that for the next post.

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