Planning for the Future

When I walked through the Bob’s gate yesterday afternoon, I could see him sitting in the wheelchair watching TV with Wayan, one of his caregivers.  He still had the sheen of coconut oil on his skin from having his weekly massage a few hours earlier.

Every Sunday a local Balinese masseuse comes to work him over. It seems to help his swelling feet and he loves it, always dozing off in the middle of the relaxing session. It’s obvious Bob’s circulation is not running at full power any longer.  But with the massage, and naps with his feet elevated, the swelling goes down. Plus he's always liked massage, having studied and practiced it himself.

I see such a change in Bob since his birthday in April that I’ve started to prepare practically and emotionally for the end of Alzheimer’s - the end of my sweet husband.  He’s in the last stage of the disease and I’m guessing he’s in the middle of that stage.  It’s characterized by the inability to walk, needing assistance with eating, complete incontinence, and a thinning of communication.

Because I have to return to the States for two months at the beginning of the year for my shows - an integral part of making our living - I want to have everything in place if Bob passes away while I’m gone.  I want it to be spelled out so our staff and friends know exactly what to do in this country that is run very differently than the States. Planning ahead is not part of the Balinese tradition. They really live pretty much in the present moment although that is changing as they modernize.

I have the local clinic alerted and Bob’s landlord will contact the village head to keep him in the loop. We will need two death certificates. One from the clinic and one from the government - this one will be the most difficult. The police will investigate because we are foreigners. My next step is to find out about the cremation which I’m hoping can be closer to Ubud and not the two hour drive to the one in the South.

Emotionally this is difficult. I feel almost like I’m betraying Bob by planning for his death and yet intellectually I know how important and responsible it is. I don’t want to leave a mess for others to figure out.  And I’m having to face that my soul mate is dying, albeit slowly. 

Even in his illness, he is an anchor for me.  He is an impetus to push on when life gets difficult. I have had to work at being ready or at least willing to let him go and this hasn’t been easy.  Now I only want to keep him comfortable and give him the best for however long he has left on this earth. 

Filicudi Italy 1984 - Where Bob Came to Claim  Me

It was sweet yesterday, sitting with him and Wayan watching an animated Disney movie called, A Bug’s Life.  We held hands, Bob played with the door knob, and he laughed at who knows what. I showed him some photos of when we first got together. He looked at them for a long time.  He tapped his finger on his image but I’m not sure he recognized me.  I said, “That’s us Bob, a long time ago”. 

I kissed my husband good-by and told him I love him. He looked right into my eyes and it was clear our connection is still there.

Our Gang

It was time for our annual employee outing.  The staff, including those who work in my business and those who care give Bob, along with their spouses and children, all have a day out where ever they choose. It’s always fun, although last year Bob was exhausted at the end of the day and took it out on a stranger’s family temple. ( http://alzworld-susantereba.blogspot.com/2012/11/bob-and-balinese-temple.html   )

We debated this year whether or not to take Bob, now wheelchair bound but also less able to get into trouble. There would be forty-five of us on a bus and we just weren’t sure he would enjoy himself.  After careful consideration the caregivers decided to bring him in his car so they could take him home if he wasn’t doing well. 

We started at the Bali Bird Park - a place Bob and I hadn’t been to for thirteen years.  It had changed a lot with beautiful mature gardens and professional free flight shows. The best part for Bob was wheel chair access. 

Suarni in the Blue on Bob's left

The caregivers took turns pushing my husband through the exhibits. He seemed to be having a good time and when I kissed him he said with sparkling eyes, “Thank you!”. 

Later Suarni, who has worked for us for over twenty years, went over and said, “Hi Bob”. He took her hand and said, “I haven’t seen you for a long time.”  He connected with her in a way that touched us all, really looking into her eyes.

Our last stop in the park was a buffet lunch made just for our group. Even though Bob has to be fed, he ate a big portion without embarrassment, an emotion he’s fortunately lost from his diminishing collection of feelings. 

Beach bound, we all piled back into our vehicles for a half hour ride to the coast. It was coffee time for me and ice cream time for Bob. We stopped at a beach side cafe where the boats and jet skis groaning by, mesmerized him. A friend joined us and to Bob’s delight split a beer with him.  He hasn’t had beer in a long time but he relished this icy glass even though he needed help to lift the heavy stein to his lips. 

Bob with Ketut Krok's Family

We thought Bob would be tired by now since he usually naps after breakfast and lunch. But perhaps all the excitement of being out and about kept him going.  We wheeled him to where the rest of the group was splashing and frolicking in the small waves.  I’m sure this brought back his childhood. He used to say, “I was raised at the beach. I think I learned to swim before I learned to walk.”

It was a good day for everyone including my sweet husband. His world has shrunk in the last few months since Alzheimer’s has taken his ablilty to walk, feed himself, and take care of his personal needs. I think he needed this day with all of us and the fresh salty sea air.  

Mountains and Clouds

Bob usually eats facing a wall instead of out into the garden because of the way his table is situated.  This had been bothering me for awhile. I wanted him to have something to look at when he eats since he’s now fed, having lost the ability to handle a spoon very well.  If left to feed himself the food often lands on the table and floor instead of in his mouth.

I have some serigraphs made long ago (these are original artist’s hand made prints) and had brought some here to Bali to cut in half for painting on the unused side.  Two survived the dissection and as of a week ago one now graces Bob’s dining wall. 

I wondered if he would even notice the print entitled, “The Mountains Admiring the Clouds”, with mountains shaped like faces looking at clouds shaped like animals and people.  I now shutter at my choice of colors for this piece created in 1980.  It’s too happy, too bright, and not the way I would paint it today with a more sophisticated palette.

When I arrived at Bob’s yesterday afternoon Ketut Krok was feeding him. They had been at this for over two hours.  Bob has always chewed his food well and always finished eating after everyone else, but two hours? Ketut patiently drew the spoon towards Bob and sometimes he’d refuse it so back it went onto the plate. Ketut waited and tried again. Much of the time had been spent waiting for Bob to be ready for the next spoonful.  I admire Ketut’s patience.

"The Mountains Admiring the Clouds"

During this time I noticed Bob intently looking at the new art work.  He talked about it as though the characters were alive and he was surprised to hear that I had created it.  I was with him for over an hour and he wouldn’t let me turn his wheelchair to face the garden. He was fascinated by the art piece.

“Where’s the fish?” he asked. I honestly hadn’t really looked at the serigraph in years. After studying it I found a fish in the clouds, “There it is Bob. It’s an angel fish.”  He asked lots of questions which mostly I didn’t understand. A lot of what Bob says makes little sense plus he speaks very softly.  I tried to answer in a nebulous way with a smile and hoped it made sense to him.

I left Bob’s house today thrilled to know this discarded work of mine is doing some good, is brightening my husband’s life, and giving him something to talk about. It’s peculiar as an artist, that often pieces I don’t like for one reason or another still speak to someone else. It’s as though they have a life of their own.  And this piece with its garish colors and simplistic theme is no exception. It speaks to Bob.