A Dose of Reality
My husband, Bob, first started showing signs of Alzheimer’s disease, in the year 2000 when I almost died of a strangulated intestine here in Bali. That trauma changed our lives forever. Suddenly my protector, my white knight, my business partner, my soul mate, my best friend, changed in a way that alerted our friends that something was seriously wrong.
The competent Bob they’d always known crumpled before their eyes, unable to even dial a phone while I lay on the brink of death. Over the next months, I healed from the emergency surgery, but Bob did not.
In those months it was apparent that something long-term was wrong. With a strong history of Alzheimer’s in his family, we thought it prudent to have him tested. The man evaluating the test said, “I hope my brain will be in as good a shape as yours, Bob, when I’m your age.” That was just what we wanted to hear.
Relief cooled our anxiety and we smiled as we gathered our things. Bob was helping me on with my coat when the man said, almost as an afterthought, “It is possible that Bob might have Mild Cognitive Impairment or MCI, but that would require another $500 test.” We didn’t follow up.
The Veil of Denial
That was the beginning of our fourteen-year journey into Alz World, as I call it. With our heads firmly in the sand of denial, we led our dream life as we always had at home in Bali, traveling and running our carving business until that sand was blown away by reality and we had to face the fact that Bob had Alzheimer’s. The veil of denial had protected us for a period, but when reality left us exposed to the hardships of Alz World, we found we were ill prepared.
I slid into the role of Bob’s primary caregiver while taking over more of our business as he could do less. I learned, often the hard way, how to enter his world and give him the best life possible, until he passed away in March 2014.
There are approximately 47 million people with dementia in the world, according to the 2017 report by Alzheimer’s Disease International. The tide is growing into a tsunami as this statistic doubles every 20 years. It’s been estimated that people over the age of 65 have a 1 in 14 chance of developing Alzheimer’s, while after 80 there is a 1 in 6 chance. More women than men will develop the disease.
In a double whammy, women make up 66% of family caregivers, according to the Family Caregiver Alliance. They write that while men do give assistance, female caregivers might spend as much as 50% more time providing care than their male counterparts.
This taxing work challenges us down to our core. A study found that female caregivers suffer anxiety or depression six times more than non-caregivers. And a large percentage of caregivers die before the person they are caring for, simply because the stress is never-ending.
There are over 15 million caregivers in America alone, and that’s just for dementia. Many other chronic illnesses require family care as well, like a friend in Hawaii who became a full-time carer for her adult son after he survived a tropical disease that left him brain-damaged and unable to live on his own.
In meeting other caregivers, the one thing all have in common is finding the time for respite. The grueling day-to-day of repeated questioning, incontinence, lack of short-term memory, disruptive behaviors, delusion, paranoia, non-rational thinking, problem-solving difficulty, and other symptoms of Alzheimer’s takes a heavy toll.
After 9 years of caring for Bob with our staff’s help, it was time to get dedicated caregivers. I felt I was hanging on by my fingernails.
Several people answered my ad in the Bali Advertiser but no one had experience dealing with dementia. In the end, I found two Balinese men willing to learn. They were smart and had natural caregiving abilities because they’d had grandparents who’d become ‘pikun’, which translates to senile in Bahasa Indonesian. In the Balinese culture, you don’t send your elderly away if they get difficult. You adapt around them.
While these caregivers were a huge help to me, the intensity of living with a person with dementia for ten years wore me out. I knew I had to find an alternative living situation for Bob.
Serendipity lent a helping hand. Within a month of deciding to move Bob, I had a cottage and four caregivers lined up. These men were not only Bob’s caregivers but became his friends for the next four years, until he passed away.
Care Facility in Bali
Besides finding people to train to take care of your loved one at home, the good news is that when it gets too difficult there is a care facility available here in Bali.
Sada Jiwa Bali Healthy Aging Facility is an assisted living center north of Mengwi. To see their details visit their website: www.sadajiwabali.com. This affordable resort-like residential property has a full-time medical staff, ambulance, therapy room, and programs for the residents. I know of two expats who have parents there and are pleased with the care they receive.
If you are thinking you’d like to bring a loved one with dementia here for care though, be warned, it can be complicated if the person isn’t already living in Bali with a proper visa.
Last year, I met a Dutch woman, Ratna, whose father has Alzheimer’s. Born in Indonesia, he dreamed to return and spend his last years here. A Dutch citizen living in Holland since he was six-years-old, he had forgotten most of the language but still had long-term memories of his early life here.
Ratna worked hard to find him a place to live and people to take care of him, but when they had to go to immigration to extend their tourist visas, the official there said her father was not welcome back in the country and stamped his passport as such. His dream to live here was dashed.
There is no denying that Alzheimer’s disease takes a terrible toll on both the patient and their family. But if you are an expat living in Bali there is help and respite at affordable prices.
If you’d like to know more about the caregiving experience, please check out my TEDx talk at bit.ly/2TQz5I3.
For a more in-depth look at being a caregiver and lessons learned along the way, my book Piece by Piece: Love in the Land of Alzheimer’s is available at Ubud’s Ganesha Book Store, Threads of Life, or on Amazon.
The Boomer Corner is a column dedicated to people over 60 living in Bali. Its mandate is to cover topics, practicalities, activities, issues, concerns and events related to senior life in Bali. We welcome suggestions from readers.
E-mail us at : Baliboomers@gmail.com
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