Monday, October 29, 2012

Color and Contrast

The French Alz Angels, introduced in my last blog entry, told me about the importance of color and contrast for people with dementia.  Their ability to perceive hues and contrast diminishes leaving them fewer clues to their environment. 

If one were to paint a thick black line on the floor many Alz people would step carefully over it because they can’t tell if it’s a hole or solid. 

In a study done at Boston University, it was found that putting food on a red plate increased the amount that Alz people ate significantly. If you put white potatoes on a white plate they don’t see it as we do, and so they don’t eat it.

The Angels also said, “If you want a person with dementia to go through a door, paint it a contrasting color from the wall. If you don’t want them to open a door, paint it the same color as the wall”. 

We’ve been trying out these concepts because Bob has a difficult time finding the bathroom. We’re painting the bathroom a different color than the adjacent room and painting the door a contrast to both. We also put a photo of a toilet and an arrow pointing the way.

I’ve chosen contrasting hues to paint his little Bali cottage so hopefully he’ll be less confused in his surroundings. We're still in the process of getting this finished but I'm hopeful we'll see a change.

Alzheimer's is never linear. Just when you think you have a handle on some behavior your solution to the problem evaporates.  Just when I think, “Ah Bob is doing better, he suddenly becomes harder to handle”. All I can do is keep dancing, following the disease’s lead. 

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.

Tuesday, October 23, 2012

How Did This Happen?

For some time now I've been thinking about doing a blog on my experiences as an Alzheimer's caregiver. I kept putting it off wondering, "What do I have to offer when there are other sites, such as my favorite, The Alzheimer's Reading Room?"  (That site has been a wealth of information and I highly recommend it.)

As one of nearly 15 million unpaid care givers in America alone, we need to read others experiences - it helps to not feel so solitary or so crazy when the going gets tough.  

So how did this happen? How did this blog that's been on my 'To Do' list for ages get born today? It wasn't intentional. I didn't sit down at the computer this evening to write a blog. I was in fact surveying my professional one ( and noticed a button titled 'New Blog'. I clicked it to check it out and that click led to other clicks and here we are.

It's kind of like the end of denial that your beloved has Alzheimer's. You just wake up one morning and admit it after months or years of struggling against this horrible disease. You sort of merge with the idea of it. It becomes the new normal. 

My husband, Bob, first stated showing signs of the disease, so prevalent in his family, twelve years ago when I almost died of a strangulated intestine. That trauma changed our lives forever.  While I healed from the emergency surgery done in Bali (that's another story),  Bob did not. Suddenly my protector, my white knight, my business partner, my soul mate, my best friend changed in a way that all our friends knew something was very wrong. The competent Bob they'd always known crumpled before their eyes, unable to even dial a phone.

That something was first diagnosed as Mild Cognitive Impairment or MCI. A couple of years later we got the official AD diagnosis.  

I hope that the stories I'll be writing of how I've coped as a caregiver while keeping our business alive here in Bali, where we've lived the last twenty-two years, will be helpful to other care givers.

May we continue inspiring each other,


Bob, Susan, and Python in Bali 2011.