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?"