Saturday, November 10, 2012

Bob and the Balinese Temple

I’m about to get in the shower when Ketut calls me. “Susan I need to come over and talk with you.  We have a situation with Bob that happened on the drive home this afternoon.”                 

Every year we have a staff outing that includes spouses and children. We’re usually about twenty-five people in a bus. The staff chooses where to go and organizes it and I go along for the fun and of course to pay the bills.

We bring Bob and his caregivers as well as their families. He’s quite social and really enjoys being with our extended Balinese family although it can be a bit confusing at times. 

Bob clowning with our dedicated staff
Our trip this year was to a water theme park. Once there, the guys got him changed and into the pool and he seemed to be relaxed and happy. He’d learned to swim almost before he’d learned to walk so water is second nature to him.

It was a full day and when we were ready to leave Bob didn’t want to get on the bus with me but wanted to be in the car that the caregivers had brought in case he needed to go home early. We always have contingency plans trying to second guess problems that might arise. This time, though, we didn’t guess hard enough.

The drive home in the notorious Bali traffic took about an hour and a half.  I’d just texted a friend about how well the day had gone and how Bob had seemed to enjoy it.  That’s when I got the call from Ketut.

He came right over and told me this story, “We were almost home when we decided to stop and buy ice cream bars (Bob loves ice cream).

Wayan asked him to stay in the car while he went to buy the treats but Bob wanted out. I asked him to stay in the car too but he wouldn’t listen. He was very angry and stomped off and into a family compound where he peed in their garden.

Fortunately I know the people there and tried to explain that Bob has Alzheimer’s. (Few Balinese know what this is.) I tried to get Bob to come with me but he got angrier, pushing me away. And as you know, he becomes very strong when he’s mad. He picked up a cement block and threatened to smash my toes with it. Instead, he turned and threw it at the family’s temple and damaged it.”

I sat there listening, visualizing the story as it unfolded.  I knew this was serious business because the Hindu Balinese religion is vibrantly strong and both family and public temples are sacred.

Ketut continues, “I told the people that I take full responsibility for this - that it was my fault because Bob is in my care. As you know, Susan, they'll have to do a cleansing ceremony.  And of course we'll be responsible for the cost.”

From their point of view a crazy man had wandered into their compound and compromised their sacred space and this was so out of the ordinary that a special ceremony to appease the strange energy must be done. Bali life is interesting in and of itself but when you add Alzheimer’s to a culture unfamiliar with the disease, it becomes quite a challenge.

“Of course of course. I’m so sorry this happened! I reply. “Just let me know the cost.” Ceremonies here are expensive with the need for a priest and many offerings of fruit, chicken, flowers and symbolic pieces made of leaves and grasses, embellished with special Chinese coins - a time consuming and costly endeavor.

“Ketut, perhaps it would have been better to not have told Bob, “No,” or, “Don’t get out of the car”. He was tired, had to pee and was probably fed up being in the car so long. I wonder if you’d just let him go in the store with you if there would have been a problem.”

I also point out that it was four in the afternoon, Sundowner’s time, when many Alz people get anxious. 

Ketut ponders this. He is such a responsible caregiver and feels that this is his fault but everyone was tired and I know he did his best. I try to console him.

Sadly with this disease it won’t get easier as Bob gets more and more confused and less able to communicate his needs and feelings. We just have to hone our second-guessing skills and remind ourselves we are doing the best we can for Bob.

I just got word that the repair and ceremony will cost $150.

Friday, November 9, 2012

Sanity Savers

I took care of Bob here in Bali for the first ten years of Alzheimer’s. Our carving and jewelry business has always been in our house along with five employees working six days a week. As Bob progressed further into the disease we all started taking over more of his responsibilities in a natural way.

When it became apparent that he couldn’t work any longer I hired a man to take over his duties and Bob retired to the garden. Gardening became his passion/obsession. For a couple of years it kept him busy and was self regulating so we could continue our work.

Eventually though, the disease meddled in that too and he needed increasingly more supervision. Stretched to my limit I worked at keeping him as anxiety free as possible, while keeping our business on track until it was too much to handle.

I put an ad in the Bali Advertiser and eventually found two men willing to learn to care for Bob. Ketut had worked with a man who was completely wheelchair bound but whose mind was brilliant. Nano had never done care giving but had a better command of English. We three set to working on a care program for Bob - it felt like we were reinventing the wheel.

The Balinese are overall a caring and compassionate people. They take care of their elderly right in the multifamily compound. There are no Alzheimer’s units here. Nano and Ketut have this in their genes and most importantly they are patient and smart and always on the look out for new ‘tricks’ as they refer to anything they do to keep Bob safe and happy. 

“Bob there’s a cookie for you in the kitchen,” calls out Ketut to Bob going in search of the car he can no longer drive. By the time Bob turns around to satisfy his sweet tooth he’s forgotten about the car as well as the cookie. 

“Bob can you help me with my English?” asks Nano as Bob is about to hack a stand of bamboo down with a machete that was supposed to be hidden. Bob puts down the sickle and comes to help, allowing Ketut to hid the tool again.

It isn’t easy at first as Bob is often suspicious of these two men but eventually he accepts them as they spend more and more time with him, finally taking over his care completely, twenty-four hours a day, seven days a week. We hire two more men to build the team to four. But that’s another story.

Nano and Ketut saved my sanity. Living in Bali has saved both Bob and I.