Memories

I received an e-mail from an old friend we haven’t seen in years. She knew Bob before I did.  It turns out she reads Alz World and finds solace in it as she cares for her mother with Alzheimer’s.

She wrote:   I don't know if you ever heard the story about the time Bob gave me a ride down to Southern California. We’d met through mutual friends. Bob was going south to visit his family and I had a couple days off school so he gave me a ride down and back so I could have a quick visit too.

During the drive we talked about how much we missed the ocean. When we got near Long Beach we could smell the salt air. Bob looked at me and said, “Detour?” I agreed and off we went to the beach! It was a race to the water, fully clothed. What a blast!

Cinque Terre 1984

One of the joys of Bob was that he knew the value of being spontaneous! Well, we dried off a bit and drove to my Mom's house. He came up to the door as I wanted Mom to meet him. When Mom opened the door, she cracked up at the two wet people standing in front of her, then as I introduced Bob, she interrupted me with something like: Bob? Bob Behrens!!! They had met years ago in the decorating business. Small world, huh? Good memories keep my spirits up when the "today" of it all nearly brings me to my knees.

                                                      ***

Stories like this bring Bob back to me in a visceral way. Sometimes I forget who he was because he’s been in Alz World for so long. We had a great run together, a great relationship and I need to keep that memory alive for me.  

I accept who he has become and I don’t even wish it could be different. (Perhaps this is my psyche's way of protecting me.) And at the same time I want to keep the memories alive. He inspired me and still inspires me, only now to keep as good care of him as I can.

Connection

I lost a friend this week to sudden unexplained death - she just keeled over before a singing gig. Autopsies aren’t routinely performed here in Bali unless the family orders one so we'll never know why she died.

I also found out another dear friend has breast cancer and yet another has a recurrence of ovarian cancer. This coupled with trying to come to grips that Bob is in the last stage of Alzheimer’s has me unsettled.

I went to see Bob a few days ago.  It was very sweet. He held my hand and kissed it several times - a big endeavor because he’s quite uncoordinated. He’ll reach for a glass on the table and think he has it, slowly bringing to his lips an empty shaking hand with nothing there. His hand opens and you can almost see his energy dissipate as confusion shades his face.

Bob gazed into my eyes for a long time during my visit and told me, “ I love you very much.” This of course brought up tears which I had to fight back because I don’t want to confuse him or make him feel badly.  We were mostly silent but our eyes seemed to be carrying on their own conversation. Several times he kissed my hand tenderly.

This is quite a departure of some months ago. Now that Bob is wheelchair bound he seems less confused about who I am.  He seems more at peace with the present moment and rarely gets angry or impatient any longer.

He also seems to be slowly physically disappearing. In spite of eating a good quantity of food his clothes grow bigger on him almost every time I see him. I also know there’s nothing to do, that the best I can do for him now is let nature take it’s course. Still it’s a challenge because I’m a take charge, let’s solve this problem, kind of person.

I realize I’ve crossed over some kind of invisible line where I’m just required to show up and be with him. I don’t need to entertain, get him involved, or effort at engaging Bob.  He’s at peace. Now I need to be.  I’ve been a human doing and the best for him is to rest in Being while in his presence. 

Connection 

There’s something still inside of him that connects us so deeply that it goes beyond mental capacity.  There’s a purity in his eyes when he looks into mine. It feels like unencumbered stripped to it’s element - love.  And it’s not just for me. He also expresses appreciation for his caregivers even though he may ask their names repeatedly.

It feels like Bob is slowly becoming this elemental love and when that’s complete he’ll be able to leave this world. His exit won’t be sudden like my friend’s but it will still leave a big hole in my life.

Planning for the Future

When I walked through the Bob’s gate yesterday afternoon, I could see him sitting in the wheelchair watching TV with Wayan, one of his caregivers.  He still had the sheen of coconut oil on his skin from having his weekly massage a few hours earlier.

Every Sunday a local Balinese masseuse comes to work him over. It seems to help his swelling feet and he loves it, always dozing off in the middle of the relaxing session. It’s obvious Bob’s circulation is not running at full power any longer.  But with the massage, and naps with his feet elevated, the swelling goes down. Plus he's always liked massage, having studied and practiced it himself.

I see such a change in Bob since his birthday in April that I’ve started to prepare practically and emotionally for the end of Alzheimer’s - the end of my sweet husband.  He’s in the last stage of the disease and I’m guessing he’s in the middle of that stage.  It’s characterized by the inability to walk, needing assistance with eating, complete incontinence, and a thinning of communication.

Because I have to return to the States for two months at the beginning of the year for my shows - an integral part of making our living - I want to have everything in place if Bob passes away while I’m gone.  I want it to be spelled out so our staff and friends know exactly what to do in this country that is run very differently than the States. Planning ahead is not part of the Balinese tradition. They really live pretty much in the present moment although that is changing as they modernize.

I have the local clinic alerted and Bob’s landlord will contact the village head to keep him in the loop. We will need two death certificates. One from the clinic and one from the government - this one will be the most difficult. The police will investigate because we are foreigners. My next step is to find out about the cremation which I’m hoping can be closer to Ubud and not the two hour drive to the one in the South.

Emotionally this is difficult. I feel almost like I’m betraying Bob by planning for his death and yet intellectually I know how important and responsible it is. I don’t want to leave a mess for others to figure out.  And I’m having to face that my soul mate is dying, albeit slowly. 

Even in his illness, he is an anchor for me.  He is an impetus to push on when life gets difficult. I have had to work at being ready or at least willing to let him go and this hasn’t been easy.  Now I only want to keep him comfortable and give him the best for however long he has left on this earth. 

Filicudi Italy 1984 - Where Bob Came to Claim  Me

It was sweet yesterday, sitting with him and Wayan watching an animated Disney movie called, A Bug’s Life.  We held hands, Bob played with the door knob, and he laughed at who knows what. I showed him some photos of when we first got together. He looked at them for a long time.  He tapped his finger on his image but I’m not sure he recognized me.  I said, “That’s us Bob, a long time ago”. 

I kissed my husband good-by and told him I love him. He looked right into my eyes and it was clear our connection is still there.

Our Gang

It was time for our annual employee outing.  The staff, including those who work in my business and those who care give Bob, along with their spouses and children, all have a day out where ever they choose. It’s always fun, although last year Bob was exhausted at the end of the day and took it out on a stranger’s family temple. ( http://alzworld-susantereba.blogspot.com/2012/11/bob-and-balinese-temple.html   )

We debated this year whether or not to take Bob, now wheelchair bound but also less able to get into trouble. There would be forty-five of us on a bus and we just weren’t sure he would enjoy himself.  After careful consideration the caregivers decided to bring him in his car so they could take him home if he wasn’t doing well. 

We started at the Bali Bird Park - a place Bob and I hadn’t been to for thirteen years.  It had changed a lot with beautiful mature gardens and professional free flight shows. The best part for Bob was wheel chair access. 

Suarni in the Blue on Bob's left

The caregivers took turns pushing my husband through the exhibits. He seemed to be having a good time and when I kissed him he said with sparkling eyes, “Thank you!”. 

Later Suarni, who has worked for us for over twenty years, went over and said, “Hi Bob”. He took her hand and said, “I haven’t seen you for a long time.”  He connected with her in a way that touched us all, really looking into her eyes.

Our last stop in the park was a buffet lunch made just for our group. Even though Bob has to be fed, he ate a big portion without embarrassment, an emotion he’s fortunately lost from his diminishing collection of feelings. 

Beach bound, we all piled back into our vehicles for a half hour ride to the coast. It was coffee time for me and ice cream time for Bob. We stopped at a beach side cafe where the boats and jet skis groaning by, mesmerized him. A friend joined us and to Bob’s delight split a beer with him.  He hasn’t had beer in a long time but he relished this icy glass even though he needed help to lift the heavy stein to his lips. 

Bob with Ketut Krok's Family

We thought Bob would be tired by now since he usually naps after breakfast and lunch. But perhaps all the excitement of being out and about kept him going.  We wheeled him to where the rest of the group was splashing and frolicking in the small waves.  I’m sure this brought back his childhood. He used to say, “I was raised at the beach. I think I learned to swim before I learned to walk.”

It was a good day for everyone including my sweet husband. His world has shrunk in the last few months since Alzheimer’s has taken his ablilty to walk, feed himself, and take care of his personal needs. I think he needed this day with all of us and the fresh salty sea air.  

Mountains and Clouds

Bob usually eats facing a wall instead of out into the garden because of the way his table is situated.  This had been bothering me for awhile. I wanted him to have something to look at when he eats since he’s now fed, having lost the ability to handle a spoon very well.  If left to feed himself the food often lands on the table and floor instead of in his mouth.

I have some serigraphs made long ago (these are original artist’s hand made prints) and had brought some here to Bali to cut in half for painting on the unused side.  Two survived the dissection and as of a week ago one now graces Bob’s dining wall. 

I wondered if he would even notice the print entitled, “The Mountains Admiring the Clouds”, with mountains shaped like faces looking at clouds shaped like animals and people.  I now shutter at my choice of colors for this piece created in 1980.  It’s too happy, too bright, and not the way I would paint it today with a more sophisticated palette.

When I arrived at Bob’s yesterday afternoon Ketut Krok was feeding him. They had been at this for over two hours.  Bob has always chewed his food well and always finished eating after everyone else, but two hours? Ketut patiently drew the spoon towards Bob and sometimes he’d refuse it so back it went onto the plate. Ketut waited and tried again. Much of the time had been spent waiting for Bob to be ready for the next spoonful.  I admire Ketut’s patience.

"The Mountains Admiring the Clouds"

During this time I noticed Bob intently looking at the new art work.  He talked about it as though the characters were alive and he was surprised to hear that I had created it.  I was with him for over an hour and he wouldn’t let me turn his wheelchair to face the garden. He was fascinated by the art piece.

“Where’s the fish?” he asked. I honestly hadn’t really looked at the serigraph in years. After studying it I found a fish in the clouds, “There it is Bob. It’s an angel fish.”  He asked lots of questions which mostly I didn’t understand. A lot of what Bob says makes little sense plus he speaks very softly.  I tried to answer in a nebulous way with a smile and hoped it made sense to him.

I left Bob’s house today thrilled to know this discarded work of mine is doing some good, is brightening my husband’s life, and giving him something to talk about. It’s peculiar as an artist, that often pieces I don’t like for one reason or another still speak to someone else. It’s as though they have a life of their own.  And this piece with its garish colors and simplistic theme is no exception. It speaks to Bob.

Bob is Love

I recently read an article on ‘The Alzheimer’s Reading Room’ entitled ‘How can I Possibly Love My Husband and Think of Him As I Did Before Alzheimer’s?(http://www.alzheimersreadingroom.com/2013/10/how-can-i-possibly-love-my-husband-and.html)

The questioner was grappling with grief and having a difficult time accepting her husband as he is now - in late stage Alzheimer’s. That article and the advice given by Carole Larken, an expert in Alzheimer’s and dementia care, stayed with me for days. Reading the angst in the questioner’s words, I sat back and surveyed my emotions to see how I fit with her journey in my own journey with Bob.  I found I felt profound gratitude that I am where I am with this process. 

For the first five years I was in denial and was sure we could fight the disease with supplements and exercise for Bob's body and brain. Slowly that denial eroded into reality as I took care of the business of making a living and providing care for Bob. I was way too busy to grieve, although sometimes the tears forced their way out.

Then in the ninth year of caring for Bob, on a respite trip to Italy, the grief kidnapped me and I spent most of that five weeks in tears, feeling I would die from the torturous grief of the loss of my husband as I knew him.

For the next few years I lost weight. I had meltdowns and finally hit the wall as a caregiver all the while continuing to make our living. And then some where along the line the peace of acceptance took root.  Once I had the space of not living with Bob and Alz World twenty-four hours a day, I gained perspective and with that acceptance.

Following this came the realization that, contrary to well meaning friend’s advice, Bob is still in there. His essence, his spirit, his soul occasionally find the neuro-pathways to travel out his eyes or speech or hands.  I came to realize that our spirits don’t age, don’t get sick and to see his essence when I look at him. (Read  post at: http://alzworld-susantereba.blogspot.com/2013/07/ageless-spirit.html).

Now when I when I look at Bob I don’t see his sagging spotted skin. I don’t see a skinny demented eighty-one year old man unable to walk, but what I see is ‘Love’. My heart swells and I feel strongly for him and who his essence is. Gratitude actually bubbles up for what has been presented to me and while that may sound strange, it’s a whole lot more peaceful than being in resistance as I was for many years.

Bob responds to my words of love and I would say to anyone with a beloved grappling with this disease, “Tell the person you love them, over and over, each time you visit. Don’t expect any thing in return but know that your love seeps in and caresses their spirits.” 

Who Are You?

I’m back from three weeks in California visiting my sister. It was a real vacation and I so needed it. I feel refreshed and ready for work and to face Alz World again, a world that I never really leave. But gaining distance from it gives me a chance to think more clearly.

I went to see Bob right after I returned. In just three weeks he’d gone deeper than I’d expected into the well of Alzheimer’s.  For the first time he didn’t know who I was. He was friendly but I could see his mind struggling to figure out who this woman was standing before him. Finally he asked, “Who are you?”.  “Susan,” I answered and watched as this kernel of information seeped in.  He didn’t get it right away but by the middle of our time together he knew me.  He held my hand back when the recognition came.

I massaged his shoulders as he sat in the warmth of the late afternoon garden. His voice was thinner as was his body, now clearly showing ribs. His formerly muscular upper arms are almost the same diameter as mine. 

Bob eats well and enough although now he has to be fed. He forgets what food is for and plays with it if left to feed himself. So the caregivers patiently feed him and he ends up finishing everything on the plate. Where do the calories go?  It seems to be a common symptom with Alzheimer’s.

Bob's Garden

A lot of work had been done on his garden while I was away, with major pruning to let in more light. In tropical Bali the greenery takes over if it isn’t contained. We sat next to each other gazing at the flowers and lush leaves. It didn’t seem necessary to say much. Bob held my hand and stoked it. And then he said, “I think I’ll go to the whorehouse.”  “Hmmm,” I replied, “what will you do there?” After a long pause he said,  “I don’t know.” 

My husband always had a bawdy sense of humor and it seems to still be there. Maybe he meant warehouse. I’ll never know and it doesn’t matter. What does matter is that when I told him I love him he said, “I love you too,” and he looked right into my eyes.

Tough Decisions

I’ve been away from Bali and Bob for twelve days now.  Made, my office manager, visits Bob and sends me stories along with photos. They’re written with such innocence that they touch my heart and are another reminder of why we’re so lucky that Bob’s in Bali.

He’s cared for by four caregivers who aren’t worked to death, who get a fair wage in their culture, and who genuinely care for my husband.  He has a dog and get’s to be out in a garden whenever it isn’t raining and out in the community.  He doesn’t seem to care that his carers aren’t fluent in English – the five of them communicate in their own language with an understanding of Bob’s moods and needs.

And still as the responsible one for Bob’s well being I sometimes worry and wonder if I’m doing the best for him. Perhaps it’s similar to being a parent - that being in charge of another human being goes hand in hand with worries about whether or not the best is being done for that person.

I have a close friend in her eighties whose husband was given the dreaded Alzheimer’s diagnosis a few years ago.  He’s sliding deeply into the disease quicker than Bob did and now she’s faced with burn out as his primary caregiver. She has to make the very difficult decision of placing him in a care unit. Her own health is suffering and her anxiety level has risen so high her trusted doctor has her on tranquillizers.

And still her daughter implies that placing him in a home is cruel.  People who don’t actually care for a person with dementia really have no idea how utterly difficult it is to live with this disease. Yes, we may find ways to cope and ways to make the best out of the situation but it’s still extremely difficult and emotionally challenging.  And for my friend, late in her life, it’s physically taxing.  

The websites and services for dementia caregivers all warn that caregiver’s lives are often shortened just by doing what they do – I distinguish between those who have this as a career and can go home at night and those of us that can never go home.

The decision to place a person with dementia in a care unit has to be one of the hardest of all. On one level it’s a relief but along with that comes guilt that perhaps we just didn’t try hard enough or that we’re weak or even worse, selfish.

I grappled with this for well over a year and a half. At first I wouldn’t let the thought in that I was facing burn out. On the rare good days I thought, “This isn’t so bad. I can do this!”  And then I’d stub my toe or do something else minor and have a melt down and be reminded that I was at the end of my tether.

My friends could see what was happening while I couldn’t. They were my barometers and my lifesavers but I had to come to the conclusion on my own that being the primary caregiver for Bob was no longer possible. I had to realize that it wasn’t a sign of weakness or that I didn’t love him enough but that it was now reality.

My heart goes out to my friend (and anyone) facing this decision. It’s huge and grieving will come along with it. It’s the end of life as she’s known it for decades and building a new life in her eighties will take all her survival skills.

Problem Solving

We had our monthly caregiver meeting the day before I left for California.  It was a good meeting and we addressed the issue of the missing Krok when I came for a surprise visit last week. (You can read about this at: 

http://alzworld-susantereba.blogspot.com/2013/09/trouble-in-paradise.html) 

Krok wasn’t singled out but the situation was discussed as a group and how important it is that Bob never be left alone – how if there was a fire or an earthquake or he fell ill that someone had to be there at all times to assist him.

Ketut Sama, the head of the team, had spoken to Krok privately. But in the group Sama told everyone, “We have to care for Bob from our hearts first. It’s a job second”.

Sama has been with Bob for four years and has seen the toll of the disease. He and Gusti, our newest caregiver, have also cared for others that, while mentally intact, were physically totally dependent on carers, including having to be toileted. These two are no strangers to poo – one of the hardest parts of being a caregiver.

One challenge here in Bali is what to do with the mountain of used adult diapers that seems to accumulate faster than we can deal with them. With some research we finally found a landfill that will take them for only a $1 per visit. What a relief! 

The total incontinence has been a trial in other ways as well - the daunting job of keeping Bob clean, having to deal with his smelly excrement, and showering a man who can no longer stand on his own. Fortunately the team takes these challenges on and finds solutions.

Since the tiny shower area in Bob’s cottage is too small to accommodate Bob on a chair and a caregvier to bathe him, they hooked a hose up to the shower and threaded it out the window and into the garden. Tropical warm Bali is rarely chilly but if it is they go to plan B and use a warm damp washcloth inside the house to wash him.

At the caregiver meeting Wayan Asa showed me a video he’d taken of Bob being showered. They'd seated him on the portable commode chair with the receptacle removed. They rinsed Bob off with warm water through the hose, soaped him up, and through the hole in the chair they were able to get to all the messy private parts.

In the video Bob raised himself up as best he could to help the boys shower him. He obviously likes this new arrangement and wants to help. By raising himself his bottom parts are easily cleaned. And all this in the garden – what more could a nudist ask for?

But watching this video brought tears to my eyes, tears for my husband being this debilitated and also tears at the tender care Wayan was giving Bob.  It really touched me that they came up with this plan all on their own – they are good problem solvers and I feel so lucky and grateful to have them.

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.