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