Acceptance

I knew from the start of my relationship with Bob that Alzheimer’s was in his family. He was terrified he would get it too. His mother and her two sisters died tied to chairs in a nursing home years before I even met him, years before more compassionate care giving techniques were employed.

When we first suspected the disease was coming to haunt us I did everything I could to fight it. I gave Bob great quantities of supplements geared for the brain (phosphatidyl serine, ginko, barcopa, alpha lipoic acid, fish oil, vitamins B, C and E), we exercised, we continued to study Indonesian, and I tried to get him interested in crossword puzzles, but never succeeded. ( In later years Bob's doctor said he suspected Bob's slow progression into the disease was helped by these tactics.)

After four years of symptoms an American doctor unwisely told us, “ Bob is just not trying hard enough to remember things.” This seemed to mirror how I felt (before I knew better) because the disease progresses in a way that the person loses their short term memory slowly over time - not over night.  I encouraged him to give more effort, not realizing he couldn't help these lapses. I was scared.

It was my nonacceptance that made the first years more difficult for us than they needed to be.  I thought, “If I just fight hard enough, if Bob just tries more diligently, then we can over come this.”  It became a battle - flip flopping back and forth between accepting this is our life now, and continuing in denial - until one day I exhaled and breathed in this new normal. Denial had disappeared. 

"Breaking Free"  Pastel by Susan Tereba

I now see my impatience with Bob as my struggle to accept that this is what our beautiful life had become.  Acceptance didn't cure grief but it made taking care of him gentler. I no longer engaged in a losing battle and with the freed up energy I moved on to just doing the best I could for him - keeping him as engaged and as anxiety free as possible. It felt like we moved into a new stage of Alz World.

There is no magic way to acceptance - the way has to find us. But being open to it's possibility allows it to take root and untangle our resistance.

When Love Causes Anxiety

We met at Batan Waru last night for dinner. I’d been out of Bali and this was our first date in nearly three weeks. Bob looked so handsome sporting my favorite Italian shirt I’d bought for him many years ago. He’d recently had a hair and beard trim and looked fifteen years younger.

Bob lit up when he saw me and we sat down for dinner after some confusion as to where he wanted to sit.  For about ten minutes we seemed to have a meaningful conversation and then the words stopped making sense, finally derailing into sound crunches.  I pretended I understood and made generic comments as though we were having a real conversation like we used to.

I wonder if my heart will ever stop breaking every time I see him in this state. You would think after twelve years I’d be immune to it, but I’m not.  It still shakes me to the core to see this once gallant man reduced to shuffling, his words melting into unintelligible sounds, food dripping off his spoon and into his lap where he refuses to keep the napkin that I carefully tuck there to protect his clothing.

Before our dinner arrived, Bob needed the bathroom so I accompanied him since he’d started out in the wrong direction. He emerged with unzipped and unbuttoned pants and his belt hanging open. I got him straightened out with the staff and diners watching.  The staff at least understands since we’ve frequented this cafe since it’s opening over a decade ago.

All in all we had a very nice time and he seemed happy, but when I left, “Bob I still have some work to do tonight,” he became anxious. By the time he and Ketut drove up to his cottage he refused to go in the house. He became obsessed wanting to find me and paced up and down the street.

Many Balinese were out on the street, having just buried someone who’d died in the village. He roamed in desperation with Ketut unable to persuade him to come into the house. "I have to find Susan. She was just here. Where is she?" he implored.

Finally he took off his jeans and flung them over his shoulder walking among the residents in his Depends.  At least they too understand and often joke with him or call out, ”Hello Bob!” when he passes. 

In the pacing he lost his glasses and once in the house he obsessed about me until 2:30 am when he finally agreed to go to bed.  I fear that my presence upsets him rather than soothes him and that makes me feel sad. 

When I was away Bob didn’t ask much about me, but now I’m back reminding him on some subtle level of what we had. Maybe there’s a cell memory of ‘us’ that permeates his body if not his mind.

I wonder, “Do other caregivers of soul mates have this same problem? That when they leave their loved one, the person becomes anxious? And if that’s the case, what can I do to alleviate these feelings, to make him feel good from our meetings?”

Lost

I’ve just returned from a trip to Luang Prabang, Laos where the peace is palpable, the food delicious, and the scenery lush and exotic with the mighty Mekong River merging with the smaller Nam Khan at the end of the peninsula. This was my fourth trip to this World Heritage town. The other three had been with my husband, Bob, who has Alzheimer’s Disease.

Sitting in a cafe sipping a thick Lao coffee with sweetened condensed milk and munching a perfectly crisp croissant, I remembered the first trip to Luang Prabang in 2005 with our friend Heiner. It was a turning point and another piece of our journey lost forever.

Travel was a large part of our life together and had been from our heady start on a small island off the coast of Sicily in 1984.  And living in Bali the last twenty two years necessitated leaving every few months to extend our visas.

Until that first trip to Laos I’d been able to leave Bob alone in a hotel while I went out for some early morning ‘precious alone time’ to photograph ideas for our jewelry design business, usually while he slept. I’d leave a note taped to the door, “Bob I’ve gone out. I’ll be back at 8:30 am and we’ll have breakfast together. Please don’t leave the hotel.”  And as a precaution, I’d put the hotel’s business card in his belly pack which he always carried.  This had been successful for almost four years since his Alz symptoms started.

But this time when I returned to the hotel he was no where to be seen - not in the room, sitting in the garden or over at the Buddhist temple across the street. Heiner hadn't seen Bob and the staff said simply, “He go out”.  We waited in the garden dipping croissants in coffee and trying not to be worried as the morning passed. 

After about ninety minutes the worry broke through and shook us into submission.  “I think we should rent bicycles and search in different directions for Bob," I suggested as calmly as possible. Heiner readily agreed. We bargained for two bikes, paid the deposit, and were ready to take off on the hunt when I realized I needed to change money.

As I approached the exchange office,  Bob came quickly walking towards me with a mixed look of terror and relief on his face.  He’d been walking and worrying, trying to find us, had gotten lost, and started to panic. “Where have you been!”, he demanded, trying to cover his tracks for having messed up. I was so relieved to see him I didn’t get upset. I didn’t even get angry at myself for not seeing he could no longer be left alone but the realization was emblazoned on my mind in flashing neon lights.

A few days later I popped into an Internet place to check our mails. Bob promised to sit on the bench outside.  Soon he came in and said he’d just walk to the end of the block - a few yards away.  I wasn’t happy with this but was in the middle of an important e-mail to the staff back in Bali so reluctantly said, “All right but just to the end of the block and then come right back”.  I paid my Internet bill and expected to find Bob on the bench outside, but it was empty.  The neon flashed intently.

Heading towards the cafe where we were to meet Heiner, I hoped that Bob would be sitting there sipping a coffee.  He wasn’t, but Heiner was and rain was immanent.  We hoped in our rose colored glasses of denial that Bob would magically appear. We ordered coffee. The rain pelted down. We talked, we worried, and wondered where our missing person was.  It was dark now - we would have a difficult time finding him if he was lost.  The rain abated.

Luck shinned on us and we found Bob back at the hotel. He’d been repeatedly asking the staff if they had seen me. They looked annoyed. Fortunately he had the business card I’d insisted he keep in his pocket and this got him home.

That trip to Laos in 2005 showed me that I could no longer leave notes taped to the door and go my merry way.  What had worked for a couple of years was no longer viable.  Bob had reached the stage where he couldn’t be left alone. It would be another three years until I realized we couldn’t travel together any longer. More pieces of us to grieve.

Bob giving Heiner a lift after his bike was stolen in LP 2005

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.

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.

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.

You can read more about this at: http://www.bu.edu/cas/magazine/spring10/golomb/index.shtml

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. 

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.

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 (www.susan-tereba.blogspot.com) 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,

Susan

Bob, Susan, and Python in Bali 2011.