Saturday, September 14, 2013

Trouble in Paradise

My life has been blessed by being able to live most of my dreams for the past twenty-nine years. Those dreams include caring for my husband, Bob, in the best way possible and to keep him here in his beloved Bali.

Now in his thirteenth year of Alzheimer’s disease, I still have so much to be grateful for.  His care givers genuinely care about him and try to do their best. They have seen him slip further and further behind the Alz curtain and while it’s been a slow process they’ve adapted up to now. But this last stage of the disease is a new frontier for all of us and it has come quicker than the others.

Before Stage Seven Bob was a handful, waking in the wee hours to raid the fridge, getting impatient, peeing on the wall, in the garden, or other inappropriate places.   But the caregivers knew how to handle him and during the day would take him for beach walks, swimming at the public pool and walks in the village. Their time with Bob was more interesting. 

Now that he’s wheelchair bound and completely incontinent their job description has changed. And two of them are struggling with it. These two had no experience in care giving before this job.

As I was parking in front of Bob’s house for an unplanned visit, Ketut Krok came running from around the corner and into the house.  I had a few texts to answer before I went in but when I entered he was there next to Bob with his shirt off as though he’d been there relaxing all afternoon.

Bob was parked at the table and with a stick under the wheel of his chair so he couldn’t move.  At first I thought there must be another caregiver in the house because it’s a rule to never leave Bob alone. It all came in a flash that this was not the first time Bob had been locked inside, one way or another, while Krok went out.

Anger rose reddening my cheeks as I realized Krok was on his own.  I knew I had to handle this delicately because I leave for a three week business trip to California in less than a week and I can’t afford to lose a caregiver now.  

I also noted the house was dirty and the fridge reeked, there were flies buzzing around and the garbage bag of dirty adult diapers was open. The whole reason I wanted Bob cared for in Bali was to avoid the horrors of a bad nursing home and now some of those things were happening here.  Something had to change. 

I enlisted Ketut Sama who’s been with Bob the longest and is the head of the care giving team. He thinks of Bob as family and so he wants to protect him as well as care for him. He immediately had a long talk with the team and will make unexpected calls to the house when he’s not working and while I’m away.

I’m kicking myself for not seeing this. There have been hints that Krok was a little slippery but when I saw how tender he was with Bob in the hospital I put all my worries about him out of my mind.  I ignored that Daisy dog is afraid of him and that there have been some minor money issues. 

We’ll have our monthly care giver meeting in two days.  I’ll let the team know their job description has changed with the change in Bob’s health. And I’ll ask that if any of them aren’t up for these changes then we need to know now. Sama and I will monitor the situation and if Krok’s behavior doesn’t change by the time I return we’ll be looking for a new care giver - a daunting task in Bali. He's worked with Bob since 2010 and I'd like to keep him to the end.

Stage Seven can last a few months to a few years.  I just want to give Bob the best care I can. 
Gusti, Bob and Krok

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