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?" 

Ageless Spirit

Bob is doing much better after his fall. He can stand up on his own now and doesn't need the back brace.  He was quite feisty and lively today when I went to see him.

As always I made notes of things needed for him or his cottage. Ketut Krok said we could use another cable remote because Bob thinks it's a phone and puts it to his ear, pushing the buttons and then sometimes drops it. We've had to replace the remote once before.

We also have to fix the new clothes cupboard (see - http://alzworld-susantereba.blogspot.com/2013/07/caregivers-get-smarter.html) because he's been banging on it, trying to open it and has already, after only a few weeks, damaged it. He doesn't like things locked that he can't get into.

We had tea and I'd brought a plastic container with separators and put little objects like clothes pins, tiny plastic dishes, and a ball inside. I just placed it on the table knowing his curiosity would get the better of him and he'd investigate it. What I hadn't anticipated is that he would try to put his peeled banana in it!

As I was about to leave I asked Ketut, "Now what was it that Bob needs?"

In a very intent and strong voice, Bob said, "SEX!"

Whew! Where did his hesitant can-hardly-hear-you voice go? We all got a good laugh out of it.

As I was driving home it occurred to me that as we age, as our bodies start to fail us, as we get wrinkles and spots and arthritis, our basic spirit stays the same. It doesn't age. This was a big A-HA! for me. 

When I see someone with old saggy skin who speaks with a shaky voice I will now look for the spirit inside, that same spirit that was there when they were twenty or thirty or forty.  It's why I feel forty-four and not sixty-six, why most people are shocked that their bodies look as they do when they basically feel as they always have.

"Bob's Spirit Shines in His Eyes"

Bob has always been a little risque, often bringing things down to sex or making jokes about it - in a cute way- garnering laughs from those around.  His timing and the way he answered with an emphatic, "SEX!" was typical Bob style.

During the time together today Bob said almost nothing intelligible and often spoke so softly I could barely make out the words that did make sense. He seems to be worried a lot about our 'stuff' and strangers who might come in and take things from us.  

And then out the blue, "SEX!"  brought the old Bob spirit into the open as a reminder that he is still in there. His brain is abandoning  him, his body is failing him, his life has pared down to a small cottage with a dog, four care givers and a wife. But inside, there behind the thick curtain of Alzheimer's, Bob's essence still lives.

Falling…..Again

I was in the middle of three very stressful days trying to get orders out by their deadlines when I got a text message from Ketut, one of Bob's caregivers.  "Susan, Bob didn't sleep last night. There's something wrong with his stomach. Every time he tries to get up he moans in pain and grabs his middle. He can't get up without help."

I did not need to hear this news! I was at my whit's end managing my five employees, helping to get carving orders out, dealing with a high maintenance customer, answering business emails, and organizing Bob's food for the weekend. And on top of all that we were having Internet problems.

"Ketut, please take Bob to the clinic now! We need to find out what's happening. Keep me posted."  I sprang into into high speed, trying to organize everything so I could get to the clinic if needed. All the while I was thinking appendicitis or bad food or large hospital bills. 

Ketut agrees to get him there quickly and then tells me, "Bob fell in the shower two days ago and landed on his butt. He didn't seem to be hurt at the time. Maybe this is connected."

Now I was really confused.

The doctor gave Bob a pain injection just so he could examine him. He then sent him off for x-rays which showed no broken bones. His stomach was normal so food poisoning was ruled out.  It was surmised that he'd pulled a muscle or bruised a rib or some such thing.  As I have personally experienced with falls, everything seems Ok until two days later when places start hurting.

A back brace was wrapped round Bob and muscle relaxants given and he seemed to be much more conformable.  By the afternoon he was doing quite well, ate a big lunch and then two apples, although he still needed assistance to stand up on his own.

I thumbed through the caregivers log book and found the entry where he fell in the shower. Bob's circulation in his feet isn't very good so we have a Balinese masseuse coming once or twice a week to give him massages. Bob loves this. I read in the entry that just before he fell he'd had one.

As hard as I try to protect him, to think ahead to things that could happen, I just didn't see this coming. We're guessing that his feet were still oily and when he got into the shower, he slipped.

Now a new rule is in place: after every massage, wash Bob's feet in warm soapy water and pat them dry.  Only then can he take a shower or walk around. 

Tomorrow I'll buy grab bars for the shower and get a plastic bench he can sit on.  It's so difficult to foresee what can arise and endanger my husband.

I need a crystal ball! 

Alzheimer’s Magic

I pulled the large bubble sword out of its sheath. “Hey Bob, look at this!” I called out as I spun around ending up in the middle of an almost complete bubble circle. He wasn’t impressed. 

 

I dipped and blew, this time shooting a cluster of bubbles in Bob’s direction. He reached out and popped one.  I was as excited as a child, filling the garden with iridescent orbs of all sizes and shapes. Bob said disparagingly, ”That’s for kids.” 

I’d thought he’d like this new toy. I was disappointed that it failed to please him. So it was with trepidation that I brought Bob a soft fuzzy stuffed dog with droopy ears and blond fur. The dog had a brown patch around one eye making it difficult to see it. Bob said with concern, “He only has one eye. Do you think he’ll be Ok?” I pulled back the fuzz and showed him, “See he has both. He’ll be just fine.”  His concern melted.

Bob Concerned About Buddy's Eye

“What shall we call him?” I asked. Bob looked blank. After a moment of silence that mutated into an unintelligible sentence he said, “He’s Buddy Boy.” Bob kept pushing Buddy Boy around on the table – not holding him or embracing him but he couldn’t ignore him either. 

This new gift had his attention. As we chatted he’d make a comment about the dog as though he were a living being and yet when he handled him, he did it like a toy. He seemed to be going in and out of reality and fantasy. He even asked, "Should we get Buddy’s hair clipped?"

I’d given Bob a stuffed shore bird several months before. The caregivers told me he carried it around and sometimes took it to bed. The bird is soft and small, not as fuzzy as Buddy Boy. And it seems he’s lost interest in the bird.

I first got the idea of giving Bob stuffed animals from an article on The Alzheimer’s Reading room.  The article told about Dotty and her toy bird, Harvey, with whom she talked and told things to that she didn’t tell her caregiver son – like that she had a headache. 

(http://www.alzheimersreadingroom.com/2012/07/dotty-and-her-best-friend-harvey.html).  

I considered this idea for a long time because I didn’t think my former deep-sea diving, water-skiing, hiking, man’s man of a husband would accept a stuffed animal. And as silly as it sounds, I didn’t want to be rejected by him. It’s emotionally hard enough being a caregiver and losing your soul mate to this disease.

Then I read one of Marie Marley’s articles about her Romanian soul mate and his surprising response to stuffed animals. 

(http://www.alzheimersreadingroom.com/2013/06/my-transformation-as-caregiver.html). 

I was so inspired by her words that when I saw this dog sitting in a rack at the supermarket, I knew it was worth a try. It was like magic.  My sweet husband softened and bonded. I just hope Daisy, his living dog, won’t be jealous.

You can read more of Marie Marley's stories on her blog:   

www.comebackearlytoday.com

(Please note that I can't get this address to link so you'll have to cut and paste.)

And one other note:  I'm not very tech savvy and just realized I didn't have a place for people to follow Alz World. I have now added that feature. If you click 'Join Followers' my new posts will appear in your 'in box'.  I will never share your address with anyone else.

Caregivers Get Smarter

I had our monthly 'Caregiver Meeting' this morning with three out of the four men that care for my husband. They rotate who comes to the meetings since one has to stay with Bob.

We discussed Bob's needs, the cottage needs, and any thing else needing to be addressed.  Gusti asked, "Can we get a locking cabinet for Bob's clean clothes?" For years my sweet husband has  been obsessed with organizing, sorting, and going through things. Sometimes we can use that to our advantage as I wrote about in 'Tool Fool' (http://alzworld-susantereba.blogspot.com/2013/05/tool-fool.html).

Now he rips open the package of fresh-from-the-laundry clothes, depositing them in any number of places including the shower, the dirty clothes bin, out in the garden or even in the garbage.  Not only does this cabinet need to lock but it needs to be heavy enough that he can't move it.

We found this lesson out the hard way.  We had to strap the TV down to the table so he wouldn't cart it away and still to this day he continues to try to lift it. At least it keeps him entertained.....for awhile.

It's common in Bali to have a stove top but no oven. We have a light weight aluminum box oven that mostly sits under the counter, since the boys aren't bakers. They started using it instead to hide Daisy's treats from our ever hungry man-child. They added his snacks and apples or he'd eat them all in short order, not remembering he'd just had one.  I suggested they just turn it around so the door was against the wall but Ketut said, "Oh no, Susan, he sits on the floor and pulls the oven out."  And if there aren't any treats in the house he goes for the dog food on the floor.  If there are extra apples he eats them all - he's been known to eat five apples in a day.

What's so perplexing to me is that Bob has no short term memory but he remembers where treats are tucked away. This of course pushes the boys to find new hiding spots in a simple uncluttered cottage, not an easy feat.  I wonder if they can recycle old secret places after awhile or if he'll continue to remember them and if so why can't he remember anything else?

On Saturdays the boys pick up Bob's food for the weekend - we cook all his food at my house.  This is problematic because he often gets up in the middle of the night and raids the refrigerator. If the next day's food is in there, it's fair game. You can't say "No" to Bob, unless you want an argument you won't win. 

We decided at the meeting that I'd give them a small travel ice chest to put the extra food in along with some 'blue ice' to keep it cold. This can be stored out of sight high on a shelf for the night, and covered with a cloth if necessary, so Bob won't see it.

It seems in our attempts to stay one step ahead in Alz World, we become smarter, quicker, more flexible, trying to keep up with our large two year old. I don't say that in a demeaning way. My good friend, Margie, frequently babysits her two year old grandson and we chuckle about how similar Luca and Bob are. Except when it comes to bubbles - Luca loves them. Bob says, "Oh, that's for kids."

Sadness and Gratitude

Monsoon in Bangkok

Right after Bob recovered from pneumonia another family medical emergency cropped up that had me scurrying to Bangkok since Bali wasn't equipped to deal with the problem. I was in that dynamic city for three weeks and in daily e-mail or phone connection with my office in Bali.

In the middle of the second week Bob's caregivers wrote to say he was peeing every hour and stumbling or falling down. He'd scrapped his head falling off the bed from a seated position. Now when he sits there they put pillows below him just to be safe. 

I felt far away and helpless so at my suggestion the boys took Bob to test for a urinary tract infection. It was the only thing I could think of that might be bothering him but he passed with flying colors - no infection. 

When I got back to Bali I went to see him. He was stark naked, as he often is these days, sitting on the couch engrossed in an Indonesian movie.  He was happy to see me and we chatted in his nonsensical way that I pretend to understand. He seemed peaceful and soft and he loved it when I stroked his arm and massaged his shoulders. 

Trekking in Nepal 1988

I thought what a good life he has and then sadness descended, remembering who he was before Alzheimer's.  I tried to brush it away as we sipped tea and ate chocolate mint cookies, gazing out at the garden. Daisy dog danced around our chairs.

I thought how we almost lost Bob a month ago. The sadness intensified.  I realized I'm not ready to let him go and that I need to come to peace with his passing when the time comes.  This is, after all, what he wanted - to not linger long with this disease.

That evening Ketut called to say he and Bob had just returned from the clinic. Bob had fallen down again and needed three stitches in his head. I'm at a loss of what to do to keep him safe now.  Mostly a mellow man, Bob's ire quickly rises if he feels 'minded' or treated like a child.  I'm sure the caregivers will come up with a solution - one I would never think of. They're cleaver men who really care about my husband. I have so much to be grateful for in this ever changing landscape of Alz World.

If you have any ideas about how to keep Bob from falling or at least lessening the chances, I would appreciate hearing them.

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.