The Festival of Hope and Prayer

You have no idea how hard it was to get there. I had to travel for weeks; then, when I arrived, I found the entrance gate was too small to get through with a backpack. And they didn’t even have a luggage room where I could store it. I didn’t want to leave my pack behind. It had become part of me: its weight straightened my back and balanced my steps. But I so much wanted to go to the Festival of Hope and Prayer. I ditched the pack.

In the first tent, people were huddled around a big model on a trestle table. I recognised some of them: handsome Dr Bhatt from Hornsby hospital’s dementia ward, and the lovely registrar. And there was Keith’s psycho-geriatrician, Dr Wright, talking with them. They were looking with interest at the model in front of them. It was one of those race runs where a marble drops down a chute, knocks over a row of dominoes, that in turn lift a lever that tips another marble into a new chute and so on. I thought that, like me, they were simply admiring this wonderful contraption, but they were testing it. Dr Wright dropped the first marble into its race. It set off a run of dominoes which made a very satisfying clacking sound, then released the next marble, but that marble just stopped dead, in front of its gate. The doctors conferred as they set up the dominoes again. This time they used a bigger marble in the second run. Brilliant! It all went beautifully till the very last gate, where it stopped short. I would have been put out, I reckon, at this setback, but they just talked amongst themselves and added a heavier marble towards the end of the run. You should have heard them cheer when the marbles all triggered their gates perfectly on the next attempt.

A life class was in progress in the next tent. The model sat on the dais, looking irritable. The nurses from the dementia ward concentrated on their portraits. Grace had almost finished a fine charcoal sketch of Keith, and Amelia was working away at a complex pastel portrait. The night nurses were making pencil drawings, looking over the day nurses’ shoulders to check for details they had not seen. I was surprised at the level of detail in their work. In Amelia’s portrait, Keith’s electric blue eyes were vacant, troubled; she had painted him with a hammer in his hand. I glanced up at him. Amelia was right. I could see he didn’t much like being a model. Luckily, just then the food trolley arrived and Keith cheered up a bit. The nurses smiled at each other and continued working on their portraits.

There was still time to visit the prayer tent. It was empty. I took a seat in its vast silent space. No voice spoke to me. Nor did I expect to hear one. But at this festival, hope and prayer seemed to mingle naturally in the soft shadows.

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Anger management

After Keith started climbing the garden fences at his dementia hostel and running away home, they locked the doors to the garden. Despite lengthy daily visits from me, the children and the dog, and multiple excursions for bushwalks and beachwalks, Keith understood nothing except that he was confined. He was so consumed by anger that there was no room for anything else in his head or his heart.

Keith has not been a stranger to anger. I’m not a fan of anger, though of course I too am sometimes angry. Such is the nature of marriage, and my predisposition to keeping the peace, that I mostly let any anger from Keith simply sort itself out; it wasn’t worth getting het up about. Keith has always been a sweet and reasonable man at heart. He saw anger as just one way of expressing yourself, as indeed it is; he didn’t sense that it could become corrosive. He hadn’t shown an angry side of himself in our first years together, but there seemed to be more anger coming up as the years went by. Did anger supplant reflection when he had to deal with Non-Hodgekins lymphoma many years ago? Maybe it was the fingers of Alzheimer’s disease in his brain before there were other symptoms? Whatever its cause, Keith and I did not really contend with his anger, as it was not at a critical level. And without Keith’s loss of cognition and memory, I reckon we would have continued to work around it.

Now, however, the dark queen of dementia has stopped any work-arounds. Keith’s anger has free rein, and neither diversion nor discussion moderates it. At the dementia hostel, after the doors were locked, he started throwing chairs and trolleys to break out of there. No doubt he raised his voice and stared accusingly like a madman. The other residents and staff were scared. He would have to come home – or be taken to hospital. I felt that I was responsible for Keith’s pain, so I wanted to take him home where he could be happier. It needed an external voice (my brother’s) to tell me that this was an acute situation, beyond home management. I was as blinded by my pain as Keith was by his.

Keith has been in the locked* dementia ward at Hornsby Hospital since that day. When he is well enough to leave, I will find him somewhere to live. I dread my daily visits to him, as he is angry, intolerant, repetitive. He tells me he hates it, and he cannot stay there. He begs to be taken home. He follows me if I leave his room in order to prevent me from leaving without him.

I had never imagined Keith’s behaviour being so problematic that he would need hospitalisation and a cocktail of psychotropic drugs. Perhaps, though, this explains why I was finding it so hard having him at home, even without his becoming incontinent or dangerous to himself. I guess caring for a husband with dementia is just like life: you don’t know where it will lead you. But unlike life, dementia care has not yet led me anywhere I want to go.

* The ward doors are lockable, but usually open. Keith is under close observation and was oversighted one-on-one by a nurse for the first day.

Shipwreck

Keith has moved into residential care.  His lovely room and kindly carers mean nothing to him. It was a complete waste of time setting the room up with things he loves. They are irrelevant to him just now. The only, and absolute issue for him is that he is imprisoned, alone. He is separated from me, the person to whom he turns one hundred times a day, the person who, until now, has not let him down. He is devastated and confused by his confinement. His whole inner self is lost, a sinking ship. Every time I visit he has tied his clothes in a bundle, ready to be taken home. Every time we return from an outing, the staff have undone the bundle and put all his clothes back again.

He pleads with me to rescue him. It is the most heart-wrenching experience of my life, refusing his pleas and convincing him to stay put.

In his first three days, he ran away twice, climbing over the facility’s outer fence. Both times, he found his way back home. I am amazed at his capacity. He barely knows his name, let alone his address. Normally, he is lost within a few hundred metres of home, by foot or by car. And yet he has navigated back home from three kilometres away. Some homing instinct deep in his brain must be directing him. As a result of this instinct, the doors of the facility that open freely to the “secure” garden are now locked. The capsule is sealed. Yesterday he did not escape. Fingers crossed for today.

On the third day, the doctor placed him on a low dose of anti-anxiety medication, but I have not noticed any difference yet. In the next few days his psycho-geriatrician will review his medications. Perhaps some variation will help. But there is no medication for grief. I can scarcely endure my own grief and yet I must put it aside to comfort him. Alzheimer’s disease has stolen his mental and spiritual capacities. He has no means to modulate his pain. No explanation makes sense. No comfort warms him.

Experts at the facility and on the dementia behaviour helpline all say not to take him back home, but to persevere through the pain. This packing up to go home, this frightful grief and fear is common, they say. It will settle down over time, they say, in weeks or over a couple of months. Try not to take him out so much, they say, but spend time making positive experiences for him at the facility.

Meanwhile, even his good friend sleep is failing him. He dreams I have gone away and gotten lost. He gets up in the middle of the night and wanders around looking for me. He worries about his cruel wife. Yet again, I am completely undone. His distress is my punishment for preferencing my own life over his. I see now that part of me must go down with the ship. I want to stay afloat, but the sinking ship creates an inescapable whirlpool.  Time to take a deep breath.

Moving right along

Keith is moving into residential care. I haven’t told him yet. Before the move I will set up his new room. He will find his own things there when we walk in, free of luggage.  My inner optimist then sees the scenario unfolding like this.

“This is a lovely room, isn’t it?” says Keith, as he wanders in, touching and admiring his sculptures on the shelf.

“Yes,” I say, “It’s spacious and bright.”

The next scene shows us sitting comfortably on armchairs in his room, reading our books and sipping tea. A cheerful woman pops her head in the door.

“Oh, hi Keith, would you like to come and meet the smokers? We’re just heading outside for a smoko.”

“Sounds good.” Then, turning to me, “You’ll be OK here if I leave you to it for a bit, won’t you?”

“Sure. Off you trot, then.”

Next day, when I arrive, I find Keith sitting outside with a couple of people, talking. He looks up, smiling. “Oh, here you are,” he exclaims, getting up to greet me.

“Want to go out for a walk?”

“That’d be nice,”

And off we go for a nice walk and a coffee. We get back an hour later, just in time for lunch.

“Oh, lunchtime, I’d better go in,” he observes. “See you later.”

Wouldn’t it be nice if it actually did work this way? I’ve put a lot of time into selecting a good place, staffed by kind, knowledgeable staff. I’ve done everything within my power to smooth the transition for Keith. I intend to be there all day for the first few weeks, and to invite various family members to substitute for me when I have other commitments. The idea is that he will settle into the new routines during this period, without feeling abandoned or alone.

He does not have much capacity for change or for learning. He will be out of his depth at first, with new people around him, new routines to learn. He will lose solitude and freedom. I anticipate that he will ask me over and over again why he is here, and when he is going home. I expect he will be angry and sad, with shouting and tears. Might he try to climb the fence and head home, even though he doesn’t know the way? There will be heartache. His distress will upset us all, but most of all me, the architect of all this.

On the upside, neither my children, my family nor my friends will blame me for Keith’s unhappiness. They know that the real culprit is Alzheimer’s disease, and that we who serve her can only do our best.

Drink me


The little bottle jumped up and down on its stand. “Drink me!” it cried, importuning and begging, “Drink me to the dregs!”

I don’t often refuse a drink, so I complied. As soon as I put down the bottle, I realised this was not my kind of drink. When I arrived at the bottom of my rabbit hole, I could see some people steadily tramping forward, some just sitting still, and others obscured by darkness.

“How do you get back out?” I asked a passing stranger.

“Out?” he said, “I really don’t know. I’ve been walking a long time. I think I’m heading in the right direction. I hope so. But you must move on. See those ones sitting there?” he whispered. I nodded. “They’re stuck. They can’t leave. Best to keep walking.” He gave me a sad smile. “I must go on,” he said, and left me.

A motherly woman sitting on a faded couch beckoned me over. “Come sit with me,” she called. “You’ll probably have a long wait, so you may as well take a seat.”

“How long have you been waiting?” I asked.

“Oh, only a few years, dearie, but I’ll be on my way soon, I think.” She pointed into the darkness. As my eyes adjusted I saw the shape of a man, embraced by shadows.

“It’ll be finished soon,” she said, looking at him with a mixture of fondness and revulsion. “This is where they undo life,” she explained.

“What?” I gasped, horrified. “Why would they do that?”

“Oh, we can’t look into the whys. That would send us mad,” she answered. “We are required to watch. They need witnesses.”

“Who does?”

“The darlings do. The ones being undone. We have to bear witness.”

I took my seat and looked into the gloom. I saw that Keith was here too, some distance away, in the darkening corridor.

“What are they doing to him?” I asked my new friend.

“Ah, the poor lamb,” she said, watching him wander aimlessly around. “They’ve already done a lot of their work, I see. What they do is, they look for the things that made him an adult, and they just subtract them one by one, starting with the things that came latest. They just gradually take all the gifts of adulthood, then they move on and take the gifts of adolescence, then of childhood, then infancy. Then they get right back to the beginning and undo it. Where exactly are they up to, do you think, dear?”

“Well, they haven’t reached infancy yet, ” I replied, “At least he doesn’t need nappies; and he can walk; and feed himself from his plate; and dress himself – mostly. But I think they’ve taken adolescence already. I guess they’re working on childhood now.”

“That makes sense. The witnesses usually arrive here once the undoing of childhood gets going. All the witnesses get here at some point. Even the stragglers get here for the undoing of infancy.”

“And then?” I asked, afraid to hear her answer.

“Well, some of the darlings do get away; they catch pneumonia, or the flu or have a stroke or something. But the rest of the darlings have to wait until life is completely undone, right back to before they could breathe. That’s the plan. It’s what we have to witness.”

“But can’t we help?”

“Of course we can, dearie. You’re helping already. You can’t stop the undoing. You can only bear witness. And then you have to start walking. You’ll find your way out.”

She and I sat silently together, watching. The darlings were going about their business, moving slowly and without much purpose: eating, sleeping, trying not to be too much trouble to anyone. And in the shadows we could see the undo-ers circling, hovering, silently doing their work.

Indecision

Keith enjoys wildlife documentaries, so we’ve watched a few of them lately. Out there on the Serengeti, life is cheap. One moment, you’re grazing quietly on some tough old grass, enjoying yourself as much as you can under the circumstances, and the next minute you’re tearing away in wild leaps, changing direction to put off your pursuers, abandoning your young to their fate. The predators have their own troubles. They slink about, thin and hungry, watching their own young wobble about on legs unsteady from starvation. They have enough energy for only one big chase: they must succeed, or they will die. They stake out their target, calculating the angles of the chase, determining the best cover, working as a team to cut off the likely avenues of escape. They are clever and purposeful. When the time comes for action, they must not hesitate. Indecision is death. The wildlife filmmakers do not track the indecisive: there are none of them left.

Here on the dry plains of advancing Alzheimer’s, a Thomson’s gazelle is quietly going about his business. He sits on the couch staring at nothing; he watches TV in a similar manner when someone turns it on for him. He follows “the Missus” (he has forgotten my name) around, unsure of what to do with himself. Occasionally he thinks of something and wanders off with an idea in his head. The Missus follows warily, checking up. He goes out on excursions with carers, sleeping off the exertion during the afternoon. He follows up with maybe 11 hours of sleep at night. He takes direction on how to undress and dress, how to have a shower, and what to do with himself. His medication may have made him easier to manage, but the need for management is expanding.

While he naps on the couch, a lion is stalking. She has staked out the places where the lost gazelle may find a new home and has gone so far as to choose one. She has booked two weeks of respite with a view to permanency. This booking is driven by fear: what if there is no room available when things are worse? How well will she hold up as a carer? The fear is irrational, as additional home care is available if needed, and turnover in a care home is constant. After all, people go there when they are pretty needy. In the dementia unit, they go there with a terminal illness. But this is a new home, only now filling up. It might be full of fine healthy specimens like Keith. The other possible places are full and the best one is also new: it may not have a room available for months.

I ponder the ethics of the lion fruitlessly while I should be sleeping. Maybe it is right to find a new home for Keith, where there is more going on, more to interest him. If he goes, I will be relieved of burdens that I struggle to bear. Maybe as a visitor I will recapture the kindness and loving-heartedness that has dissipated under the demands of caring. Or maybe it is wrong to uproot Keith from the comfort of home, giving him into the hands of strangers, letting him wander through unfamiliar rooms, and engage in different activities, his privacy lost forever. Maybe his need for security and comfort should trump my need for space and sanity. This is sword of Damocles territory.

He will never be able to comprehend our situation. I cannot expect any benediction from him. I know that if he were in his right mind, he would not want me to struggle or suffer. But he is not, and I alone am responsible for his well-being.

Yes, I know, and for mine, too.

Models of Residential Care: Billionaire, Stalag and Home

When Keith’s dementia started to have a real impact on our lives, I undertook an online course about dementia from the University of Tasmania and read books from Dementia Australia’s excellent library. There was universal agreement that carers should investigate residential options early, so they did not have to make important decisions when they were already at breaking point. That seemed like sensible advice, so about a year ago I researched local options. Just finding them was a lot of work, using the government’s peculiarly unhelpful My Aged Care website. You need to be a skilled administrator to work this system. I could see why the books said not to wait until you were in emergency or panic mode. I went out to visit a whole heap of places, compiling a short list as I went. Now that we are approaching the gateway of residential care, I have re-visited the short list, and found three distinct models of care.

Model 1: Billionaire Stalag

This mob wants a refundable deposit of about $1,000,000 plus up to $65,000 pa, reducing by $20,000 after about three years. Their aged care resorts have chandeliers and cafes (with excellent wine lists) and look more or less like the Ritz. Meals are restaurant quality. Uniformed staff glide around being helpful; residents enjoy a constant buzz of activity and community. If you happen to have dementia and need a secure environment, you can enjoy your chandeliers in the segregated downstairs prison area. Down there, there is no buzz of community and activity. There is no informed philosophy or practice guiding the support of dementniks. These lost souls are treated as if they are just badly functioning models of the old people upstairs. The dementniks are not allowed off the bus on their weekly outing. God knows what these shuffling, miserable creatures could get up to once they had their freedom. And God knows why I ever short-listed such a place. Must have been dazzled by the chandeliers. Or maybe the wine list.

Model 2: Starveling Stalag

These places are old and do not have chandeliers. They enjoy a high ratio of lino to floor, and their bedrooms have a nursing home feel, with a goodly supply of handrails in the corridors. They ask less than $500,000 for their refundable deposit and charge lower daily fees. These places also have no specialised philosophy or program to support dementniks but somehow they seem more connected to the residents than the Ritz staff, swanning about the endless carpeted halls. Maybe they have to be more connected, just to pass in the corridors.

It is best to place a dementnik in Model 1 and 2 environments only when they have fully lost their minds. Ideally they will also have lost the use of their legs before they are imprisoned there.

Model 3: Home

There is a handful of places whose philosophy and practice towards people with dementia means that they provide a new home for the dementnik. These places range in price and light fixtures from billionaire to starveling. Mostly billionaire, of course. In the best of these places the residents have access to welcoming outdoor areas, as well as activities and outings that sustain a positive outlook. In most of these places the staff don’t wear uniforms, respecting their philosophy of providing a home.

I could not place Keith anywhere but in a Model 3 environment.

And now, strangely, I am no longer in a rush to place him. Either the progress of the disease or the addition of new medications has made him calmer, easier to wrangle, more sedate. As a result, I am calmer, though still not easy to wrangle. He is on waiting lists, and I suppose he will get a place in due course. We can go on as we are for a bit.

 

 

Signposts

When I was a young’un, many an age ago, I turned to old wisdom to guide me in times of trouble. As I generally tend to seek the wisdom that suits my purpose, I turned confidently to the books of Job and Jeremiah. I particularly favoured those bits in Jeremiah that said things like, “Wherefore a lion out of the forest will slay them, and a wolf of the evening shall spoil them, a leopard shall watch over their cities: everyone that goeth out thence shall be torn in pieces….”[1] My very favourite verse said, “For, behold, I will send serpents and cockatrices among you, which will not be charmed, and they shall bite you, saith the Lord.”[2] I delighted in the refusal of those cockatrices. Nothing was going to charm me either.

I know now that there is a time to every purpose under Heaven[3]. That satisfying time to be young and fired-up is long past. I turned out to be quite good at the fired-up bit. There must be areas of life where excellence in being furious and full of yourself continue to provide good value beyond adolescence. It has not been my good fortune to live a life where this excellence is much called for. What is always called for is that other stuff: patience, charity, hope, fortitude: virtues.  The question currently before me, and possibly before anyone caring for a spouse with dementia, is how much virtue there is in me, and what happens when it is all gone.

Early on in my caring role, I expected there would be a clear sign telling me when to place Keith into residential care: he would become incontinent or need more help to dress or shower than I could offer. I would see, with regret, that my good intent was not equal to the task. Friends and family would marvel that I had kept Keith at home for so long. I’d shed a few tears, but I’d know that I had done all that could be asked of me.

Sadly, this is nothing more than a maudlin fantasy. Keith is fully continent and gets in and out of the shower with ease. On the other hand, he puts his pants on back-to-front, can’t make a meal as simple as cereal and milk, and is unable to generate any activities for himself. He needs my patience, my guidance, my kindness, my fortitude. I had not imagined that the finite amount of my virtue could trigger Keith’s move to residential care. The problem is in me, not in him. It is useless to compare myself to other people who are less daunted than I am, by the demands of being a carer. Keith is not cared for by them. He is cared for by me. I know he is well enough to be at home for some time yet, and that I will be well enough to look after him for some time yet. But I am struggling already, and the struggle will only get harder as each month passes. His decline is rapid, and my emotional exhaustion keeps pace with it.

I have started to firm up the planning for residential care.

[1] Jeremiah 5.6

[2] Jeremiah, 8.17

[3] Ecclesiastes 3.1

Following the Holy Man

What Keith needs is a chela.

I’ve been reading Rudyard Kipling’s Kim, a pleasing oddity of a book. In brief, our ragamuffin street urchin, Kim, takes up with a holy man who is seeking a sacred river. The holy man depends on others for all his worldly needs. Kim becomes his chela, his guide and disciple, who negotiates all the messy details of life – obtaining food, buying train tickets, avoiding trouble with the law and so on. In return, the holy man’s example gives Kim spiritual guidance. It works remarkably well: the chela role suits Kim’s inquisitive, daring nature, and the holy man is enriched by Kim’s growth.

I guess I must have gotten out of line somewhere in one of my hundreds of past lives. Otherwise how would I, an impatient, hasty, irritable personage, be cast in the role of Keith’s chela? What were they thinking? And while I’m on the subject, whose great joke was it to cast Keith, a cranky dementnik, as the holy one? Come on, really. It’s about time someone up there woke up to themselves.

Malvolio-like, I have had chela-hood thrust upon me. It must be the same for every carer. We all spent year 10 daydreaming, obviously, but I’m betting our fantasies never involved thanklessly negotiating every messy detail of life for our dementniks, biting our tongues (thus possibly earning spiritual brownie points) at their accusations of treason, and tricking them into taking their medicine.

Oh, yes, being a chela is a tricksy business. Guiding involves a fair deal of trickery. If I tell Keith to have a shower, for example, he will tell me he doesn’t need one, or that he has already had one, or he will just get defensive and cross. See, direction is counterproductive and results in irritation all round and no shower. He is not to be told what to do. He imagines that he is a grown man able to manage his life for himself. It seems to be my job as unwilling chela, to support this fantasy. So I say, “I’ve had my shower already; it’s your turn.” Then he is quite likely to toddle off and have a shower. And there are the direct deceptions: I give him his liquid medicine secretly in a glass of juice every morning. So far, he hasn’t caught me doing it, but if he does, I have prepared my response, “It’s the vitamins the doctor ordered for you,” I’ll say, ready to swear to it on a stack of Bibles.

While I am resigned to my role as Keith’s chela, I think it is fair to say that Keith is not taking the role of holy man seriously. I don’t reckon he’s seeking the kind of things a holy man should seek. I mean, he’s constantly seeking his underpants, or a spoon, or some cash, but these objects hardly seem to lead to spiritual enlightenment. I guess I’ll just have to travel the road to enlightenment all on my own.

Chrysalis

Just now, I am a pupal form of person. Before Alzheimer’s disease struck, morphing Keith into his current half-self, I lived out my caterpillar phase, wandering freely, changing skins as I grew. But I have finished with all that. Now I have bound myself to the branch with a silken rope and hardened my casing. I hang suspended, awaiting my rebirth. It’s a pretty long and tedious wait, frankly. Keith has adopted a default position, an instinct. It is in the negative.

“You’ve fallen asleep, love. Maybe it’s bedtime?”

“I wasn’t asleep. I’m not going to bed. You go to bed.”

He bats back every suggestion or comment with a rebuttal. Let the dog stop and sniff whatever he wants. You should let him follow his instincts. You don’t need to use hot water to wash up. You can wear shorts to bed. This is not dirty. The tennis is boring. This show is boring. I don’t need to clean my teeth. I’m not tired. My hair looks fine. Anyway, how do you know? Snap, snap, snap. Bare the teeth. Growl.

People sometimes suggest that maybe it’s like having a three-year-old. My memory may be flawed, but I believe I enjoyed having three-year-olds. They were silly and funny, sometimes tiresome I guess. Who isn’t? They were learning, and it was a pleasure to help them on their way. Looking after Keith does not feel like looking after a three-year-old. Partly it’s that we used to be married, in partnership: equals. Partly it’s that he cannot learn. You have to restrain yourself from explaining things to him. Explanations just confuse him. What should I say when he tells me he has never been “here” before, a place we have both been hundreds of times? I usually say that I have been there before. Maybe next time I will just ask him how he likes it. How should I respond when he tells me he wants to travel overseas or interstate again? Yesterday I told him to book his ticket and arrange his passport and visa, and then we could talk about it. Good ploy, eh. (Yes, yes, I know.)

But I know, now, that my chrysalis can fall away in an instant. I have just returned from three days in Hobart with my son and daughter, while my other daughter and son-in-law (plus a bunch of carers) looked after Keith. I didn’t call home. For every moment of those precious days, I was carefree. It was strange to enjoy myself without referencing back to Keith: he would have enjoyed this or that, I would have enjoyed telling him about it. But that’s the past, pre-rebuttal-Keith. I quizzed the kids: did they need to tell anyone about their adventures? Nup. That was the business of couples. We three, then, shared our adventures purely in real time: climbing to the tarns at Mount Field National Park; walking amongst the sad stories of Port Arthur; having a dip in the sweet waves of the Tasman Sea near Eaglehawk Neck; being totally gob-smacked by the art and architecture of Mona.

But one evening, with the kids still at Mona Mofo, I sat alone in the Glass House restaurant, eating salmon sashimi, drinking whisky and looking out over the Derwent River. And I was happy all on my own. I found that my wings are in good shape.