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?