Happy Birthday Bob!

We had lunch at Batan Waru for Bob's eighty-first birthday. We've been going to this well known Ubud eatery since it opened nearly twenty years ago. I chose it because there are no stairs and the toilet is easy to get to - very important criteria for my husband these days.

Bob's face lit up when he saw me as Gusti and Ketut, his caregivers, directed him in. After a big hug and kiss I quickly ordered one of his favorite Bali drinks, Ginger Lemongrass Fizz, since he has little patience for waiting. If someone else at the table is served first it's fair game for Bob and if other food or drink looks more interesting than his, he'll reach for a sip or a taste. I just give in and let him have it.

Our friend, Alan, came to join us, "Hey man, Happy Birthday!" Bob was surprised it was his birthday even though I'd gushed over him just minutes before. Still his face read 'Pleased' to be getting this attention.

Seafood wonton, an appetizer, was the first dish to arrive. It came with a dipping sauce but Bob dipped his last one in his glass of water.  I had to turn away I was chuckling so much!  He dips food in various drinks in a way no one else would think to do. It tickles me.

Next came his favorite Chicken Curry which I ordered, knowing he can no longer focus or remember enough to read a menu. Trying to second guess food that won't be too complicated or too messy to eat is a challenge that I often fail at.  This time was a success with no calamity befalling the table.

We had a nice time. He joked a bit and Alan tried to draw him out, although much of his conversation was unintelligible.   

Bob glowed when the staff came out with a cake and candle, singing happy birthday. They'd written 'Happy Birthday Mr. Bob' in frosting around the plate and decorated their famous  black bottomed tart with a maraschino cherry, whipped cream and mint leaves, and the candle I'd given them. They didn't charge us for the dessert and they seemed genuinely happy to do this for their long term customer. 

Then it was time to take my husband home. The boys drove us back to his cottage where I gave him his birthday presents - two new ball caps and some chocolate. Alan came about twenty minutes later bearing strawberry and chocolate gelato to go with brownies I'd baked for the four of us.  The Ice Cream King was in heaven with this second dessert, while Daschound Daisy danced all around us, her long toe nails taping out the beat.

It was a good birthday and while Bob won't remember it, he was happy in the moment. What more can we ask for than happy moments?

Susan, Gusti, Ketut and Bob

The Nudist

When I arrived yesterday, Bob was relaxing in the TV room wearing a very nice shirt and nothing else.  Completely absorbed, he was watching an Indonesian comedy show. He speaks little Indonesian but the slapstick antics were enough to occupy him.

Bob grew up with progressive parents. His Dad was a violin player in the LA Philharmonic when he met his Mom and later delved into photography and oil painting. Once married and living Long Beach his mother became an avid volleyball player at the beach a few blocks from their home. Bob frequently said, "I learned to swim almost before learning to walk".

The family also belonged to a nudist camp in the mountain forest about an hour's drive from their home.  They had a permanent campsite with a big tent for the four of them. These were some of Bob's favorite times, running nude and free, and being in nature. "I liked that people weren't judged by their clothes but by who they were," Bob remembered.

Now that Alzheimer's has claimed his brain he lives in these times and most days at home in tropical Bali he is partially or completely nude.  His modest Balinese caregivers have gotten used to this display and only make sure he's completely dressed when he leaves his small gardened compound for trips to the beach, swimming pool, or to go on village walks.

Yesterday Bob seemed particularly peaceful. He held my hand and told me what a great life we have.  He told me about acceptance and how he accepts what life has brought to him and he told me he's happy.  Often these days I don't understand what he's talking about, either because the sentences don't make sense or the words are just sounds, but on this day he seemed clear and present in a way he usually isn't.

This is the way with Alzheimer's disease. It isn't linear; the decline isn't a stark descent. On some rare days the person is so clear you think perhaps this is all a bad dream and not really happening - you doubt a decade of observations only to be shaken back to reality on the next encounter.  

But I'm happy for Bob that he's found peace, even if it's just in this moment. It also validates my decision to care for him here in Bali where he can be nude if he desires with his understanding caregivers.

Circles of Grief

The grief of losing one slowly to Alzheimer's is not a linear grief. It circles and cycles back on itself and just when you think you have a handle on it, it comes around to bite you again. With all the tears over Bob and his fate, all the writing and processing, I'm still surprised when the pain gets me again, even after these thirteen years.

I went to see Bob this afternoon and stayed while a friend, Alan, helped solve a problem. The DVD player and cable box sit next to the TV and Bob frequently tries to carry them off. They're, of course, attached by cables to the TV making this a dangerous proposition.

Alan and Ketut made a box to house the tempting objects below the table with a slot drilled out of the table facing so DVDs can be inserted and ejected. Out of sight out of mind usually works well with Alzheimer's people.

The project took about two hours on a very hot afternoon and I visited with the shirtless Bob to distract him from the work. He had a hard time with the noise of the saw, yelling, "That's enough!" through the wall to the workers. 

I'd brought some chocolate pie as a treat. Bob ate all of his and then started at mine so I cut bits off for him. He got up and disappeared behind the kitchen into the pantry and I assumed he was getting water from the big dispenser but when I peered around the corner to check, I found him peeing on the wall.

Ketut, his on-duty caregiver, was tied up with the reconstruction of the TV table so couldn't direct Bob to the toilet. Ketut told me that it's a sure sign that Bob has to pee when he puts his hands in his pant's pockets hikes them up and down. I'd missed the cue. I saw once again how tense I become when I’m with him trying to keep him peaceful and entertained and how responsible I feel for his well being.

I thought about the 35 million people on earth diagnosed with dementia and that every 12 seconds another is diagnosed and how many more there are undiagnosed and how they eventually become warehoused. Alzheimer's has been described as a human tsunami about to overtake us.  (http://www.alzheimersreadingroom.com/2013/04/the-coming-alzheimers-tsunami.html)

I know I am doing the best for Bob and that he is relatively happy and has excellent living circumstances but I can't help wonder how it is to just exist, to be passively cared for until death takes us.

I woke in the middle of the night unable to sleep - visions of the time spent with Bob replaying. I don't mull over doing the right thing for him or feel guilty but there is a pain in my heart to see him like this, still, and that pain keeps me awake.

Fortunately humor is the balm to the grief and within days of the project we found 'out of sight, out of mind' was not working so well. Bob, in his unique Bob style, now stuffs his underwear into the new slot! 

Bob and Daisy During TV Table Construction

Going Home

It's been 72 days that I've been away from the Island of the Gods, away from Bob, my staff, and creating. While I’ve been gone, Nano, one of Bob’s original caregivers, quit. He said, "I can’t sleep and I'm stressed. My condition is weak and my doctor told me to rest for six months".
 

After four years with Nano, Bob will probably have a difficult time adjusting to a new person and a new person will have a difficult time learning to deal with Bob who felt safe with this big man with the soft gentle voice. I’ll miss Nano too, knowing how responsible and caring he's been.

In the past when I’ve had to hire caregivers, I’ve found many have a hard time learning to “lie” even though it’s what we need to do to keep Bob as anxiety free and as happy as possible.

Learning to lie is a skill that didn’t come easily to me but one that I had to adopt. The truth spoken to a person with Alzheimer’s is often cruel – creating anxiety and pain - and my goal is to keep Bob as calm and happy as possible without resorting to drugs. 

Simple techniques such as redirecting can keep the Alz person safe. “Bob there’s ice cream in the kitchen waiting for you,” called out to him when he’s about climb the fence, most likely trying to climb out of his skin. By the time he turns his attention to the kitchen he’s forgotten about both the fence and the dessert.

“Susan’s in Bangkok on a visa run. She’ll be back in two days,” repeated over and over is sufficient to set his mind at ease when I’m off island.  These seeming lies are healing balms to his anxious mind.

I only hope I can find someone to replace Nano who can embrace this technique, this gift to a man for whom peace is often just out of reach. And I hope Bob will be able to accept this new presence.

Wish us luck!