Dress Rehearsal

Bob has almost fully recovered. He's showering without assistance and walking short distances in the village with his care givers.  In time we're sure he'll regain even more of his strength. 

We almost lost him with this recent bout of pneumonia and it brought up a lot of angst, life and death questions, and uncomfortable dark corners in my psyche. It was an emotionally painful two weeks with sleepless nights, acid stomach aches, and grief, making it difficult to think and function during the day.

These distressing questions needed to be asked and answered and not just by me but also by Bob's daughters. Once he was home and getting better, the panic subsided and I realized I hadn't been ready to let him go. 

He's been an anchor to my life in Bali since we came here together twenty-six years ago to live our dream. We birthed and built our mammoth tusk carving business together. And I've been able to care for him here in a perfect Bob environment.  Alzheimer's and being a care giver have become part of my identity.

I feel in some strange way that my connection to Bob is almost parental and when I imagine him gone, it feels like it did when both my parents died - I felt orphaned.

Then there was the whole question of antibiotics and Bob's Advanced Medical Directive. It's been many years since I'd read this document that he'd made nineteen years ago. It stunned me to see his hand writing stating that if he had a terminal illness and was unable to make decisions for himself and was dependent on others, that no antibiotics or hydration be given, that there be no recitation if he was in critical condition.

In other words, Bob wanted to be allowed to die because he'd seen the devastation wrought on his mother and two of her sisters from Alzheimer's. What he did want was to be kept comfortable and out of pain if possible.

We'd already started him on antibiotics for the pneumonia when I studied Bob's AMD once again. His daughters and I decided to continue that regime.  The gray area with antibiotics is that they give relief and comfort. It was beyond what I could endure to see Bob struggling to breathe, wracked with coughing spells, and hear his chest burbling with every breath.  I didn't have the courage to say no to the doctors. 

It's a huge responsibility be an agent for a person's AMD or to ask someone to be one for you.  While it's the person's wishes you are carrying out, wishes written in a time of lucidity, it still feels unmanageable. Have you ever had to have a pet put down? Multiply that exponentially and that's how it feels to make life and death decisions for a human. The turning point for me was seeing Bob's wishes written by his own hand. That familiar writing went straight to my heart.

Now in retrospect it feels like we had a dress rehearsal for the next time Bob is at death's door. I pray for the courage to follow his wishes that he entrusted me to carry out with the full support of his daughters.

We have prepared the local clinic to offer comfort care and have explained the AMD, giving them a copy for their files. It was a new concept for the Balinese doctors whose culture is present moment oriented. We learned that narcotics here are strictly regulated and can only be given in a hospital by an anesthesiologist.  There is no hospice.

Bob is doing well now, but we need to remain diligent in finding ways to carry out his wishes when the time comes.  We continue to research how comfort care can be given in Bob's home when the time arises. That was his wish, to die at home.

If you have any experiences with AMDs or end of life challenges, I welcome your comments.

Out of the Hospital But Not Out of the Woods

When we got Bob home and propped up in his bed with Daisy dog snuggled up next to him, he said, "This is a nice room."  It sure beats the hospital this last week.  It was a big move for Bob - an hour's drive - but he did well.

It's all a bit confusing because he seems much better and more at peace but his most current x-ray shows the infection is worse then when he went into the hospital.  His oxygen is so low we hook up him while he rests and sleeps.  His pulse rate falls below normal and his heart is enlarged.  Several doctors asked me if he smoked but he never has. (He did live with two women who smoked though.)

Bob, First Day Home from the Hospital

I try to stay in the present moment with the emotional roller coaster as his condition gets better and worse all in the same day.  After a lot of soul searching I am at peace with however this comes out. In a way I lost him to Alzheimer's a long time ago but still he's an anchor for me here in Bali and he's my husband.

Today when I looked at Bob in his oxygen mask he had a slight smile on his face that read 'contentment'.  I 'got' that he is at peace and ready to move onto the next phase if that is what's in the cards.

I won't hold on emotionally - he entrusted me to look after him when he could no longer look after himself.  I have to honor the decisions he made for his future when he was well. In agreement with his daughters, we won't continue his antibiotics when this course is finished in a few days and we'll keep him as comfortable as possible.  The rest is up to The Universe.

The Saga Continues

If you read the last post then you know Bob is in the hospital with pneumonia. His, daughter, Michele arrived two nights ago from Hawaii and has been a huge help since she's a paramedic. She's been able to talk to the doctors and nurses in their language. 

We decided to continue with the course of antibiotics.  Maybe this is a dress rehearsal for the next emergency.

Bob is out of ICU and in a regular room now but we are caught in a Catch-22.  If his oxygen is low he's too weak to cough up the mucus in his bronchial tubes and he has to get this out. When we are able to keep the oxygen mask on him, he gets his energy back and can accomplish this feat but then he repeatedly takes off the mask and his level falls again, making him too weak to cough it up.

It's been a lesson in redirecting. I had to think fast and filled a bag with things from around the room - a comb, toothbrushes, unopened toothpaste in its box, a package of Q-tips, and handed it to him. His hand went right in and he played with the items taking them out to examine them. This kept his hands busy and off the oxygen mask.

The boys brought in a stuffed animal I'd given him weeks ago and that also gave him something to occupy his busy hands.  It doesn't work to say, "No, Bob - leave the mask alone,"  It doesn't work to try to keep it on by force and it doesn't work to badger him repeatedly.  What does work is redirecting. Why do we have to keep learning this lesson over and over?

Another challenge is the Balinese culture. It's fairly passive. So when Bob takes the mask off,  the nurse says, "If a patient doesn't want something we don't push it."  I explain, "Those with Alzheimer's have to be treated differently.  They can't make decisions for themselves.  And we have to encourage them in a quiet way to do what's best for them."  I keep thinking it would be good to have a formal lecture on how to deal with Alzheimer's patients for the staff here. They are eager to learn. 

Michele and Bob in 1960

Emotional Roller Coaster

At the hospital Ketut told us, “Bob started coughing about eleven last night after he’d been fine all day. By 3:00 am he was coughing hard but couldn’t get the mucus up. At day break I took him to the clinic because I was really worried.” 

It wasn’t until after breakfast that my staff told me the news. I'd been ill the day before and slept in. They didn't want to worry me. Bob has been to the clinic for a cough before; he’s given cough medicine and in a few days he’s better.  So I thought it wasn’t serious until the doctor called, “Is Bob allergic to any medicines? I want to put him on antibiotics.” 

When I got there Bob was in distress, having a difficult time breathing but ripping off the oxygen mask over and over. His oxygen level was low. “We need to move him to a proper hospital,” the doctor emphasized. 

Wayan rode in the ambulance with Bob. Gusti took Bob’s car home. And I went to back my office for papers and money needed to admit him. We all converged at the brand new Siloam hospital, a good hour’s drive South. There’s nothing closer that I trust.

The diagnosis? Bronchial pneumonia. We chose a VIP room because there’s a couch that makes into a bed and Wayan and Gusti could stay the night next to Bob.  In the morning the two Ketuts took over the shift. In Indonesia it’s best not to leave anyone alone in the hospital. It’s important to have around the clock advocates. 

By the next morning he was again refusing oxygen. His condition worsened and the doctor said, “I want to put him in ICU for a couple of days.”  I called Michele, Bob’s daughter in Hawaii, who’s a paramedic. After conferring we agreed to ICU.  

What was holding us back and not going instantly along with the doctor? Knowing that Bob didn’t want to live with Alzheimer’s – at all. He’d watched his mother and two of her sister’s die of the disease. His medical directive states that if he’s in the condition he’s currently in that we should just do comfort care but no heroics, including antibiotics or hydration. 

It’s so easy to discuss this when we’re healthy but so hard to actually do it when it’s right in front of us!  I’m clear I can say no to a defibrillator or a ventilator.  That seems black and white but antibiotics are a gray area. They help with comfort, as does hydration. 

I have anguished over this and that Bob might soon die. I’ve cried my way to acceptance to let him go. I’ve been on the phone, email and Skype with his daughters to come to an agreement on what we should do. 

Should we now take the antibiotics away as his wishes are stated in the Advance Directive? Should we unhook him from the IV? And how do we keep him comfortable and watch nature takes its course? We asked the doctor a lot of questions gathering information so we could make an informed group agreement.  

This is new territory for a Balinese doctor – the idea that one would contemplate these situations and make decisions about life in advance, while still mentally competent, is unheard of.  The Balinese culture is mostly present moment oriented. 

With in hours, Michele made arrangements to fly from Hawaii via Seoul, Korea to Bali. She arrives tomorrow evening after twenty-four hours traveling. I need all the help I can get with this.

We decided to continue the treatment. In the meantime Bob has improved enough to return to a regular room.  He’s eating everything given to him and ‘thumbs-upping’ the staff. He’s flirting with the nurses. I ask him, “Do you want go dancing tomorrow night?” and he whispers an enthusiastic, “Yes!” 

It touches me deeply to see how the caregivers have been with Bob – so caring and compassionate, holding his hand, stroking his brow, spoon feeding him with attention when he’s ready to eat. 

I question: Will the Alzheimer’s be worse? Will he continue to have a decent life? Is this the candle burning brighter before it goes out? The emotional roller coaster is arduous. I just want to do the best for Bob. 

And then I wonder if perhaps he survived for a higher purpose.  Maybe by hanging around, even with Alzheimer’s, he’s inadvertently helping others in the future. The hospital staff is learning how to handle someone with this disease for which they have little or no experience. The caregivers are getting better the longer they’re with Bob and talk about opening a business to care for the aging expat community when the time comes and assisting handicapped tourists. 

Maybe Bob is an explorer discovering new territory for others  benefit. 

The Dentist

"Hi, where are you? I'm here in reception and the appointment is in a few minutes," I say to Wayan from my cell phone. Bob has a 3:00 dental appointment to get a cavity filled but hasn't arrived yet.

"Susan, Bob won't keep his clothes on. We don't know what to do. He was already to go and then before we knew it he was naked again. Now he won't get dressed."

"Let me talk with him, please."

"Hi Bob, you need to get dressed for your dentist appointment," I say encouragingly. He tells me, "You Go get dressed!" and then speaks something unintelligible. I understand the gist which is where I should put said clothes. Wayan gets back on the line.

"I'll try to make another appointment," I sigh with resignation.

The weather has been very hot lately so I'm sure this is Bob's way of handling the discomfort. He probably just wants to sit nude in front of the fan.

I apologize profusely to the staff reminding them that Bob has Alzheimer's. They're very understanding and talk directly to Dr. Heny, our patient female dentist.  As we are setting the new appointment for a morning the following week (thinking Bob will be fresher earlier in the day) my cell rings and Wayan says, "We just got him dressed and are on our way. We should be there in about fifteen minutes."

Fortunately Dr. Heny doesn't have another appointment and agrees to wait. They arrive in record time and get Bob settled into the dentist's chair. He's very good with the dentist and doesn't mind being there for over an hour and having five cavities filled.

About three quarters of the way through, though, he asks for the bathroom. He makes into the room but ends up with pee down his pants and onto the floor. He emerges with a big wet spot which embarrasses Dr. Heny and her staff. In getting Bob dressed the boys had missed getting him into incontinence underwear. 

I chatted with Ketut and Wayan while we waited for Bob and asked how they were able to get him dressed and keep him dressed.  Ketut said, "I'd go out the gate and wait five minutes, texting Wayan inside to see how things were going.  Then I'd come in as though for the first time that day with a big, 'Hey Bob! How are you today?' high-fiving him at the same time. 'Come on get dressed and let's go meet Susan!' 

They had to do this routine four times before it took and they could get him out the gate and into the car.

These men are so dedicated and caring and smart and above all patient! And I find it really interesting that Bob can't dress himself anymore without a lot of time and effort  but he can strip by himself in a nanosecond. Funny how the Alzheimer's brain works!

Now we have an interesting problem. How do we get Bob to brush his teeth more regularly and thoroughly? Dr. Heny told me that there was a lot of debris in his mouth from not brushing properly.

After reading the article on teeth brushing from the Alzheimer's Reading Room:

http://www.alzheimersreadingroom.com/2011/05/how-to-get-alzheimers-patient-to-brush.html

the boys now brush their teeth in front of Bob to encourage him and that seems to help but still it isn't enough. Maybe we just have to step up the effort trying to get him to brush twice a day. 

If you have any suggestions I would like to hear them.

Tool Fool

When Bob was well into Alzheimer's and we still lived together, he spent most of his time in the garden which gave him great pleasure. But when it rained and he could only venture as far as the verandah, anxiety would take over and he'd go inside to organize drawers or shelves, again and again. The contents were in constant disarray, which he could never quite manage to come to terms with, and so he often gave up, stuffing everything back into the same or another space, explicatives exploding all around him. 

Packing was another compulsive activity and a sure sign of anxiety for Bob. I'd often wake in the morning to find neat piles of bathroom articles stacked for a journey on his chest of drawers or next to the sink. I've even found them tightly bound in a rolled beach towel secured with a rubber band hidden amongst his clothing - a treasury for me of all the things I’ve been missing.

Now that Bob is living in his cottage with four patient Balinese caregivers we use that compulsion to advantage.  I'd read an article that rummaging is common for people with Alzheimer's and that to provide a rummage bag with items familiar to the person would bring comfort. 

Our friend, Alan, and I had a wonderful time putting one together for Bob and even found a zippered bag that had 'Tool Bag' emblazoned on it's front in big letters. Bob is a 'Tool Fool' as his favorite mug states.  

We chose tools that weren't sharp or a danger to Bob or the house. We chose cheap Chinese made tools so it wouldn't matter if they were broken or misplaced. This treasury consisted of a set of open-end wrenches, a tape measure, two house paint brushes, a plastic faucet, colorful key caps, a plastic measurer for diameters, and for fun, some fabric stuffed hearts.  

We'll add items as we find them around the office like old locks and keys that don't work anymore.  Bob just needs 'stuff'. 

I was visiting him the other day and handed him the bag which he's had for several weeks now. It's like clock work:  you hand the bag to Bob and he unzips it, takes everything out looking at each item and organizes it in Bob fashion, and then puts it all back in. There are new items inside like a dried weed and pen cap. He's very focused when he's with his bag and the caregivers tell me he uses it quite a bit on his own.  

If you'd like to know more about organizing a rummage bag go to this article: 

http://www.pantagraph.com/news/local/rummage-bags-of-familiar-objects-help-those-with-dementia-to/article_54a93f20-7003-11e2-9240-001a4bcf887a.html

Let me know if you have comments or ideas about rummage bags. If the comments section of my blog isn't working you can e-mail me at: alzworld2@gmail.com