Monday, May 13, 2013

Emotional Roller Coaster

At the hospital Ketut told us, “Bob started coughing about eleven last night after he’d been fine all day. By 3:00 am he was coughing hard but couldn’t get the mucus up. At day break I took him to the clinic because I was really worried.” 

It wasn’t until after breakfast that my staff told me the news. I'd been ill the day before and slept in. They didn't want to worry me. Bob has been to the clinic for a cough before; he’s given cough medicine and in a few days he’s better.  So I thought it wasn’t serious until the doctor called, “Is Bob allergic to any medicines? I want to put him on antibiotics.” 

When I got there Bob was in distress, having a difficult time breathing but ripping off the oxygen mask over and over. His oxygen level was low. “We need to move him to a proper hospital,” the doctor emphasized. 

Wayan rode in the ambulance with Bob. Gusti took Bob’s car home. And I went to back my office for papers and money needed to admit him. We all converged at the brand new Siloam hospital, a good hour’s drive South. There’s nothing closer that I trust.

The diagnosis? Bronchial pneumonia. We chose a VIP room because there’s a couch that makes into a bed and Wayan and Gusti could stay the night next to Bob.  In the morning the two Ketuts took over the shift. In Indonesia it’s best not to leave anyone alone in the hospital. It’s important to have around the clock advocates. 

By the next morning he was again refusing oxygen. His condition worsened and the doctor said, “I want to put him in ICU for a couple of days.”  I called Michele, Bob’s daughter in Hawaii, who’s a paramedic. After conferring we agreed to ICU.  

What was holding us back and not going instantly along with the doctor? Knowing that Bob didn’t want to live with Alzheimer’s – at all. He’d watched his mother and two of her sister’s die of the disease. His medical directive states that if he’s in the condition he’s currently in that we should just do comfort care but no heroics, including antibiotics or hydration. 

It’s so easy to discuss this when we’re healthy but so hard to actually do it when it’s right in front of us!  I’m clear I can say no to a defibrillator or a ventilator.  That seems black and white but antibiotics are a gray area. They help with comfort, as does hydration. 

I have anguished over this and that Bob might soon die. I’ve cried my way to acceptance to let him go. I’ve been on the phone, email and Skype with his daughters to come to an agreement on what we should do. 

Should we now take the antibiotics away as his wishes are stated in the Advance Directive? Should we unhook him from the IV? And how do we keep him comfortable and watch nature takes its course? We asked the doctor a lot of questions gathering information so we could make an informed group agreement.  

This is new territory for a Balinese doctor – the idea that one would contemplate these situations and make decisions about life in advance, while still mentally competent, is unheard of.  The Balinese culture is mostly present moment oriented. 

With in hours, Michele made arrangements to fly from Hawaii via Seoul, Korea to Bali. She arrives tomorrow evening after twenty-four hours traveling. I need all the help I can get with this.

We decided to continue the treatment. In the meantime Bob has improved enough to return to a regular room.  He’s eating everything given to him and ‘thumbs-upping’ the staff. He’s flirting with the nurses. I ask him, “Do you want go dancing tomorrow night?” and he whispers an enthusiastic, “Yes!” 

It touches me deeply to see how the caregivers have been with Bob – so caring and compassionate, holding his hand, stroking his brow, spoon feeding him with attention when he’s ready to eat. 

I question: Will the Alzheimer’s be worse? Will he continue to have a decent life? Is this the candle burning brighter before it goes out? The emotional roller coaster is arduous. I just want to do the best for Bob. 

And then I wonder if perhaps he survived for a higher purpose.  Maybe by hanging around, even with Alzheimer’s, he’s inadvertently helping others in the future. The hospital staff is learning how to handle someone with this disease for which they have little or no experience. The caregivers are getting better the longer they’re with Bob and talk about opening a business to care for the aging expat community when the time comes and assisting handicapped tourists. 

Maybe Bob is an explorer discovering new territory for others  benefit. 


  1. Wow Suz, really big questions. Sounds like you made the right choice this time. Thinking of you both.


  2. Heavy stuff Aunt Susan. I think you handled it with sensitivity and grace. It was a wise move of Bob to make an advance directive while he was in his right mind. This doesn't make it any easier to go through the process but at least you can choose to honor his wishes. He is incredibly blessed to have you as the vigilant overseer of his care. Its truly beautiful and I would say the greatest calling of human beings.


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