Trouble in Paradise

My life has been blessed by being able to live most of my dreams for the past twenty-nine years. Those dreams include caring for my husband, Bob, in the best way possible and to keep him here in his beloved Bali.

Now in his thirteenth year of Alzheimer’s disease, I still have so much to be grateful for.  His care givers genuinely care about him and try to do their best. They have seen him slip further and further behind the Alz curtain and while it’s been a slow process they’ve adapted up to now. But this last stage of the disease is a new frontier for all of us and it has come quicker than the others.

Before Stage Seven Bob was a handful, waking in the wee hours to raid the fridge, getting impatient, peeing on the wall, in the garden, or other inappropriate places.   But the caregivers knew how to handle him and during the day would take him for beach walks, swimming at the public pool and walks in the village. Their time with Bob was more interesting. 

Now that he’s wheelchair bound and completely incontinent their job description has changed. And two of them are struggling with it. These two had no experience in care giving before this job.

As I was parking in front of Bob’s house for an unplanned visit, Ketut Krok came running from around the corner and into the house.  I had a few texts to answer before I went in but when I entered he was there next to Bob with his shirt off as though he’d been there relaxing all afternoon.

Bob was parked at the table and with a stick under the wheel of his chair so he couldn’t move.  At first I thought there must be another caregiver in the house because it’s a rule to never leave Bob alone. It all came in a flash that this was not the first time Bob had been locked inside, one way or another, while Krok went out.

Anger rose reddening my cheeks as I realized Krok was on his own.  I knew I had to handle this delicately because I leave for a three week business trip to California in less than a week and I can’t afford to lose a caregiver now.  

I also noted the house was dirty and the fridge reeked, there were flies buzzing around and the garbage bag of dirty adult diapers was open. The whole reason I wanted Bob cared for in Bali was to avoid the horrors of a bad nursing home and now some of those things were happening here.  Something had to change. 

I enlisted Ketut Sama who’s been with Bob the longest and is the head of the care giving team. He thinks of Bob as family and so he wants to protect him as well as care for him. He immediately had a long talk with the team and will make unexpected calls to the house when he’s not working and while I’m away.

I’m kicking myself for not seeing this. There have been hints that Krok was a little slippery but when I saw how tender he was with Bob in the hospital I put all my worries about him out of my mind.  I ignored that Daisy dog is afraid of him and that there have been some minor money issues. 

We’ll have our monthly care giver meeting in two days.  I’ll let the team know their job description has changed with the change in Bob’s health. And I’ll ask that if any of them aren’t up for these changes then we need to know now. Sama and I will monitor the situation and if Krok’s behavior doesn’t change by the time I return we’ll be looking for a new care giver - a daunting task in Bali. He's worked with Bob since 2010 and I'd like to keep him to the end.

Stage Seven can last a few months to a few years.  I just want to give Bob the best care I can. 

Gusti, Bob and Krok

Connections

Our friend, Marisa, hadn’t seen Bob in over a year and asked if I would take her to him. We’ve been friends at least a dozen years and traveled together in 2006 to Italy, in celebration her fiftieth my sixtieth birthdays. On that trip Bob insisted on doing all the driving through tiny cobblestone Tuscan hamlets. It was his last year to drive before Alz took away that ability.

Marisa and Bob at the Warung

Marisa and I arrived in Bob’s village mid-afternoon a few days ago. He was in the wheel chair chatting with caregiver Gusti, while hanging out at the warung. Marisa bent down, her face level with Bob’s, and looked him right in the eye. His face registered “I know you,” as he gazed into her eyes. They had a long look at each other, something Bob rarely does these days.

Marisa used to say, “Bob reminds me of my father.  He had a subtle charisma that attracted people without him intentionally trying to attract them”.  On the day we visited she commented that Bob still has an inner light that she clearly sees and appreciates. Perhaps this is what I’ve called his ‘ageless spirit’ that shines through his withered brain. See: http://alzworld-susantereba.blogspot.com/2013/07/ageless-spirit.html

I know Bob is in there but the path to the outer world is fraught with neuron tangles and so he’s perceived by many as not being home. When we still lived together well meaning friends would tell me that Bob was gone and I should let him go. I know they were trying to protect me. I started to believe them. I was a burned out care giver and that belief made the grief a tiny bit more bearable. During that time Bob became the disease to me. I was too close to the situation and too stressed to see the man any longer.

Now that we live apart and I have a better perspective, I see it differently. My husband as I knew him is gone but the essence of Bob still lives - the essence I fell in love with.  That has become more apparent to me as he’s retreated further behind the Alz veil.

Marisa brought Italian chocolates for Bob that afternoon. He needed help peeling off the foil wrapper but had no problem downing three of these nutty balls.  It was clear from their interaction that the special connection they always shared still registers somewhere inside Bob.

Sweet Connection

When Will The Sadness End?

I’ve written about this before but it keeps coming up.

When I went to see Bob the other afternoon, he was listing left in the wheel chair watching TV with Wayan.  Wayan brought him out onto the verandah so we could be together without the sound track.  Daisy came bounding out from her bed under Bob’s to join us. She’s always happy to see me, jumping up as far as her short Doxy legs will allow.

Perhaps Bob was very tired, which he seems to be a lot these days, but he just couldn’t sit up straight and of course couldn’t say why. Now that he can’t get out of the wheel chair there’s no more gardening, no more walks on the beach or swimming at the pool, in other words, no more exercise.

The boys still wheel him outside to see what's going on in the village and he still likes to hang out at the warung, which seems to be a village gathering spot. It’s always good for people watching.  But Bob is basically confined to the wheel chair, completely incontinent.  Several times a day he tries to get up, but his body will not obey his mind’s command - a common symptom of late stage Alzheimer’s.

As I sat with Bob he not only listed to one side but came forward as well. We had to prop him up to keep him in the chair. I chatted with him and he clearly stated, “I’m pissed.”  “At me?” I asked. “No......” then I couldn’t understand his words or meaning. 

I wonder if he’s angry that his life has gotten to this - a place he so dreaded being in. Sadness over took me and I could barely keep the tears from leaking out - I don’t want him to see me cry because one of my goals is to do what I can to help him feel good.

Bob eventually fell asleep like that leaning on my arm.  Wayan managed put him on the verandah couch where he fell into a deep sleep with me stretched out alongside him.  I stroked his head from time to time and held his hand not wanting to disturb him but wanting contact. 

The tears broke through my barriers and my heart broke one more time for my sweet husband.  I’m not sad for me - I’ve built a wonderful life of rewarding work, many friends, a busy social life, and a place of solace inside. But I feel so sad for Bob, a once strapping handsome man who desperately feared this disease. He’d watched his mother and two of her sister’s die from it.  He doesn’t know his own sister succumbed to it’s brain mangling ways last year.

Bob used to beg me to put him out of his misery if he ever got like he has been the last seven years.  He so did not want to live like this.  But life has it’s own way with us and so here he is.  And if you’ve read some of my recent posts you know he’s still in there behind the curtain of the disease.  Some times he peeks out to remind me.

http://alzworld-susantereba.blogspot.com/2013/07/ageless-spirit.html

http://alzworld-susantereba.blogspot.com/2013/08/dehydration-and-alzheimers.html

Wayan told me later that after the nap he was sitting up straight again.  I’m relieved to know it was fatigue and not a worsening of the disease.  One of the signs in the last stage of Alzheimer’s is the inability to keep oneself upright.

As I drove home and back into my other life the sadness abated.  What will be in store on the next visit?

Last Stage?

The roller coaster continues. I’m up one week and down the next. Will it ever stop? I think only when Bob is no longer on this planet.  As dire as it was looking dealing with dehydration two weeks ago, Bob is back and doing well enough. 

(http://alzworld-susantereba.blogspot.com/2013/08/dehydration-and-alzheimers.html ) 

Granted there is a big change from before he had pneumonia in May. We went out to lunch for his eighty-first birthday on April 26th. but we can no longer have these lunch dates. He’s just too compromised by the disease. Each crisis seems to drag him down deeper into Alz World and this time I fear he’s sliding into the final stages of the disease- stage seven.

(For all seven stages of the disease see:

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp )

Bob now spends most of his time in a wheel chair often trying to get himself up. He so wants to walk but his strength has declined too much for this feat.The caregivers help him stand and make a few tentative steps. I figure this will at least give him some exercise and something to do. 

 Behind Bob:: Wayan, Gusti, and Nyoman

He seemed happy when I stopped by to see him a few days ago. He was at the village warung (like a small rustic mini store) watching the world go by with his caregiver Gusti. Nyoman, the owner of his cottage, and Wayan, who owns the warung and also cleans Bob’s house, were also hanging out.   Everyone was chatting in Balinese. Bob smiled and laughed when they did. 

He called me Suz, a nickname he gave me years ago. I don’t think he has used any form of my name in a very long time. I was surprised by this and saddened. 

A bent over old man came shuffling by aided by a stick and gave us the thumbs up.  Bob smiled. Then an old woman sauntered past giving Bob a double take and asking if I was his wife. Children played in the dusty street. And an ‘egg lady’ with flats of fresh brown eggs stacked and tied to the back of her motorbike came to sell to Wayan. I bought a flat too.  It was an enjoyable afternoon watching the village parade in front of us and hanging out with Bob.

Dehydration and Alzheimer's

When my friend Alan and I went to see Bob yesterday he was almost in the same state as he was in the clinic last Monday. He was in a deep semi conscious state. It felt like dehydration again so I put a little chocolate milk on his lips. He licked it off. I did more, he licked. Then I put about a quarter of a straw full right into his mouth and he swallowed. After a few more squirts I got him to actually suck the straw until he had finished it. 

This boxed drink was handy because I could squeeze it to get the milk to rise in the straw and into his mouth until he took over sucking.  The trick was to get it started for him because sometimes he doesn’t understand the instruction, “Suck, Bob.”

We also prepared bottles of half 100% juice, half water, and a sachet of electrolytes which he drank over the course of the day consuming at least 1.5 liters of liquid.  We’ve taken him off black tea because the caffeine is dehydrating.

I wrote to our doctor in Bangkok who always takes the time to e-mail me back with advice.  I told him the situation with Bob and he answered:

“Unfortunately, dehydration can be quite common since he has reached the point in his disease where he does not know what to do with the sensation of thirst.

I agree that offering water hourly during the day is a good idea. If he is unwilling to drink plain water, sometimes it helps to spritz it up with fruit juice for flavor.

Wayan and Bob

It is also a good idea to have him eat things with lots of fluids in them to prevent dehydration. For example, watermelon and soup (as long it is the clear type soup with not too much salt).

The nutritional supplement, like Ensure, does help. For putting on weight, eggs are actually pretty good since it gives muscle mass rather than fat. I have patients in whom we are trying to help gain weight and we use 2 eggs per meal (6 per day).

He may be experiencing the same problem with food as he is with water, in that if encouraged to eat, he will, but he has forgotten what to do with the feeling of hunger. This may sound bad, but we usually treat people like this the same way we treat a 3 year old we are trying to get to eat more. It helps to find out what they like and go with it until they change their taste. Just like a 3 year old may only want noodles every day for 2 weeks, and then suddenly change over to something else.” 

The results yesterday were so clear that Bob was dehydrated. He went from being in a deep sleep like state to talking and sitting up to gobbling up his lunch.

Just before we left, Alan was talking with Bob and pointed to me and said,  "I think she kinda likes you".  Bob said something incoherent.  Then Alan said, "She's kinda funny looking though".  Again Bob mumbled something incoherent.  "And I think she's a little crazy," Alan joked. Bob looked him straight in the eye and said in a clear and strong voice, "They all are!"

Yep! Bob’s still in there! 

Another Scare

"Susan, Bob's condition has dropped, Wayan said apprehensively, “he was watching TV and just fell over with his eyes open. I thought he was dead. I’m taking him to the clinic.”

I knew Bob had had several days of hands trembling so erratically he couldn’t feed himself. He often couldn’t get up out of a chair on his own and needed assistance to walk.

I was just winding down from dinner with friends when Wayan’s call came in. I dashed off to Toyo Clinic. Bob was already on the bed when I got there. His vital signs all looked normal but he was in a deep snoring sleep that he couldn’t be roused from. 

The doctor pinched him with no response but when he tapped his eye lids, Bob winced.  We called his name but his face registered nothing. When they put the IV in he curled up in pain raising his legs. And then he settled back down into snoring once again. At one point I took his hand and he squeezed me back.  It felt like he was trapped in deep sleep with his eyes tightly shut and yet there was a part of him that was aware.

We decided on the IV in case it was dehydration again or we needed to give him pain medication.  But we did refuse a CT scan to see if it was a stroke. “What is the point?” we thought. Bob’s advanced medical directive made it clear he didn’t want his life prolonged in his current state.

I find it difficult to get the down and dirty of the last stages of Alzheimer's on the Internet and there are no resources here in Bali to fall back on.  I Googled and read and found there are missing answers in the very complicated world of dementia.  I was hoping for a detailed description of end stage Alz so I could ascertain if that’s where we were.  I needed something other than this void of not knowing - some reassurance that we were doing the right thing. One of my biggest fears is that I’ll accidentally hurt Bob in my efforts to help him.

I found this site a helpful reminder to honor just what Bob wanted -

http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf

This morning when I went to check on him, he was awake and talking. He talked to his daughter on my cell phone and generally seemed to be his old self. The trembling had lessened considerably.  But as the day progressed it became stronger and we found if we gave Bob juice or food it lessened again.  We're pretty sure this problem is from low electrolytes caused by dehydration.

Bob’s appetite was the usual ravenous and he was talking in his normal incoherent way.  Now it’s almost evening and it looks like he can go home. 

I’m exhausted! I can barely keep my eyes open. All this almost dying and coming back has me trying to accept the end one minute and then breathing a sigh of relief when he gets better the next.  And that relief is tinged with guilt because I feel I shouldn’t want him to recover since he didn’t want to be like this in the first place.

Alz World is confusing for all of us!

If anyone reading this knows what end stage looks like in detail, please write and tell me. Or if you know about this trembling I’d like to understand it as well.  In the meantime I’ll e-mail our Bangkok doc and see what he can tell me.

Bob's Secret Weapon

Bob has an answer for everything and it's usually the same one.

He's just put jam on a small block of wood that in a vague way resembles toast. You and I would have no problem telling the difference but for Bob, it's toast.

"Bob, that's wood. Better not to put jam on it," Wayan, the caregiver on duty says, trying to dissuade my husband.

"So what?" Bob says as he tries to take a bite out of it.

"Bob, that wood might give you a splinter."

"So what?!" 

His teeth make a second attempt  but the wood proves too hard and he ends up licking off the jam - another lesson learned in Caregiver School. There'll be no more blocks of wood lying around the house.

How do your answer a 'So what?' It's an abrupt end to the conversation leaving the caregiver scratching his head trying to come up with an alternative plan. There's no reasoning with someone with Alzheimer's. At least we've learned that much! Even if the person could understand reasoning, it would be quickly forgotten and you'd be back to square one anyway.

Most evenings before bed, Bob disassembles the sheets and blankets. He puts the sheet over his head and tries to walk, child like, imitating a lighthearted ghost.  The boys laugh while trying to keep him safe. They even videoed him one evening so I could have a chuckle too.

The caregivers are mostly resolved that they'll have to remake the bed later but on the rare occasion that they're tired and ask him to stop they're met with the, "So what?"  This is Bob's secret weapon - an attempt to keep us from monitoring him, an attempt at a modicum of control over his life, an attempt at a moment of freedom.   And we haven't yet figured out a counter to it. Caregiver school is an on going process.

 

"Cleaning the Garden" 2009

When he's in a 'So what?' frame of mind, the art of redirecting falls short.  The boys have gotten pretty good at this 'trick' as they call it.  "Bob, there's ice cream in the kitchen," works ninety percent of the time to get him off focus on whatever he's obsessing on that might not be good for him.  But it can't penetrate the 'So what'.  

Bob always had a wry sense of humor with excellent timing.  He could make me laugh in a flash of a word.  I figure as long as Bob is safe we have to let him have this card, this joker laughing at us. In the end what does it matter. "So what?"