Dancing

I was near Bob’s house after a dental appointment so I dropped in. He was asleep as he often is at 11 am. It seems he eats breakfast and then dozes for a couple of hours.  I wiped a glob of strawberry jam off his pants.

Sitting up on his bed, stretched out along side him, I touched his arm with one hand and laid the other on the center of his chest.  I breathed in emptiness without thought, without desire for outcome, and exhaled unconditional love for him. It was a peaceful meditation. 

He snored and snorted, wiggled toes and fingers, but was so deeply asleep that when his eyes popped opened he didn’t see me. I sensed on some level he knew I was there and that we could just be in silence together - me awake and he asleep - it didn’t matter.  What mattered was our connection.  

Communicating Through Dance

When he was still living with me but already deeply into Alzheimer's, we connected best when we danced.  Communicating with language had already been dismantled by the disease but when we danced our hearts united.  So sitting with Bob while he slept and feeling our connection was natural to me.

At one point he had a nightmare and was reaching out trying to grab something. Moaning, he woke and said, “It’s terrible! Terrible!”  I rubbed his chest and said, “The terribles are gone now. I’m here.”  “You are?” he asked, smiling at me and went right back to sleep.

It’s amazing to me that Bob still recognizes me.  I haven’t become a stranger after thirteen years in Alz World, as so many others have. I feel such gratitude for this small miracle. And if a time comes when he doesn’t know me I’ll still feel we are connected and that my presence is important to him even if he can’t consciously acknowledge it.  When I go to visit him I remind myself: this isn’t about me, it’s about him.

I stayed with Bob for about 40 minutes just sharing space.  Then I tiptoed out and went back to work. This meeting in silence was as satisfying as any with conversation. I felt settled for the rest of the day.

Happy New Year

A serious ear infection kept me from seeing Bob for two weeks. I was frustrated as well as being sick. When I did finally get to see him he seemed a bit depressed but he knew who I was.

A few days later, on New Year’s Eve, I returned around 5 p.m. to a completely different Bob. I now think he wasn’t depressed at all but just tired.  He was fresh from a bath and very chatty, in fact, so chatty it surprised me because he usually has little to say and we often sit in silence, just holding hands, communing on a different level.

He was animated and while I could understand little of what he was saying I caught a few refrains.  He said, “I’m carrying a knife, just in case.”.  I agreed it was probably a good idea.

I always agree with what ever he says because this keeps him happy and keeping an Alz person happy is important for their mood later.  My reality is not the slightest bit important. 

I also search my memory to see if I can make a connection with what he’s saying and something in his past, like the knife - he had a hunting knife most of his life which came in handy for cutting bread and cheese at picnics or cutting string or just about anything. I still have that knife safely in it’s leather sheath in a rarely opened cupboard. When I come upon it, it brings the old Bob back to me for a few moments.  When I can make these connections it gives me a deeper way to communicate with him.

After more ramblings he said, “I’m moving my stuff.”  I asked, “Oh are you doing it slowly or all at once?”  Again I couldn’t understand his answer but it gave a feeling that I was there with him and supporting him.

Sadly the only other thing he said I could understand was, “I don’t see you very often.” This always stops me in my tracks. What do I say? It makes me initially feel guilty that I’m not with him more often but then I realize this is Bob’s reality and he will forget this thought in a few seconds. I smiled directly at him, patted his hand, kissed his forehead.  He was OK.

I left with my usual excuse that I had an appointment to do computer work. He’s familiar with this statement and doesn’t hang on.  I have work to do and work was very important to Bob - an acceptable leave taking.

Of course we have no idea what this New Year will bring.  I’m floating on acceptance of ‘what is, is’ right now. I sometimes wish I’d gotten to this place sooner in the Alz journey.  It would have been so much easier on both of us.

May 2014 bring you Peace, Love, and Acceptance.

Memories

I received an e-mail from an old friend we haven’t seen in years. She knew Bob before I did.  It turns out she reads Alz World and finds solace in it as she cares for her mother with Alzheimer’s.

She wrote:   I don't know if you ever heard the story about the time Bob gave me a ride down to Southern California. We’d met through mutual friends. Bob was going south to visit his family and I had a couple days off school so he gave me a ride down and back so I could have a quick visit too.

During the drive we talked about how much we missed the ocean. When we got near Long Beach we could smell the salt air. Bob looked at me and said, “Detour?” I agreed and off we went to the beach! It was a race to the water, fully clothed. What a blast!

Cinque Terre 1984

One of the joys of Bob was that he knew the value of being spontaneous! Well, we dried off a bit and drove to my Mom's house. He came up to the door as I wanted Mom to meet him. When Mom opened the door, she cracked up at the two wet people standing in front of her, then as I introduced Bob, she interrupted me with something like: Bob? Bob Behrens!!! They had met years ago in the decorating business. Small world, huh? Good memories keep my spirits up when the "today" of it all nearly brings me to my knees.

                                                      ***

Stories like this bring Bob back to me in a visceral way. Sometimes I forget who he was because he’s been in Alz World for so long. We had a great run together, a great relationship and I need to keep that memory alive for me.  

I accept who he has become and I don’t even wish it could be different. (Perhaps this is my psyche's way of protecting me.) And at the same time I want to keep the memories alive. He inspired me and still inspires me, only now to keep as good care of him as I can.

Connection

I lost a friend this week to sudden unexplained death - she just keeled over before a singing gig. Autopsies aren’t routinely performed here in Bali unless the family orders one so we'll never know why she died.

I also found out another dear friend has breast cancer and yet another has a recurrence of ovarian cancer. This coupled with trying to come to grips that Bob is in the last stage of Alzheimer’s has me unsettled.

I went to see Bob a few days ago.  It was very sweet. He held my hand and kissed it several times - a big endeavor because he’s quite uncoordinated. He’ll reach for a glass on the table and think he has it, slowly bringing to his lips an empty shaking hand with nothing there. His hand opens and you can almost see his energy dissipate as confusion shades his face.

Bob gazed into my eyes for a long time during my visit and told me, “ I love you very much.” This of course brought up tears which I had to fight back because I don’t want to confuse him or make him feel badly.  We were mostly silent but our eyes seemed to be carrying on their own conversation. Several times he kissed my hand tenderly.

This is quite a departure of some months ago. Now that Bob is wheelchair bound he seems less confused about who I am.  He seems more at peace with the present moment and rarely gets angry or impatient any longer.

He also seems to be slowly physically disappearing. In spite of eating a good quantity of food his clothes grow bigger on him almost every time I see him. I also know there’s nothing to do, that the best I can do for him now is let nature take it’s course. Still it’s a challenge because I’m a take charge, let’s solve this problem, kind of person.

I realize I’ve crossed over some kind of invisible line where I’m just required to show up and be with him. I don’t need to entertain, get him involved, or effort at engaging Bob.  He’s at peace. Now I need to be.  I’ve been a human doing and the best for him is to rest in Being while in his presence. 

Connection 

There’s something still inside of him that connects us so deeply that it goes beyond mental capacity.  There’s a purity in his eyes when he looks into mine. It feels like unencumbered stripped to it’s element - love.  And it’s not just for me. He also expresses appreciation for his caregivers even though he may ask their names repeatedly.

It feels like Bob is slowly becoming this elemental love and when that’s complete he’ll be able to leave this world. His exit won’t be sudden like my friend’s but it will still leave a big hole in my life.

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.