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.