And then they will add, thoughtfully:  “They don’t die of dementia, do they?”

Well, in fact, they do, and a section of Bill’s DEATH CERTIFICATE looks like this:

I don’t know whether any Death Certificates are written that state that Dementia is the sole cause of death.  Perhaps death by dementia is always accompanied by a shutting down of the cardiovascular system.

But I do know that, according to Alzheimer’s Australia (www.fightdementia.org.au) dementia is the third leading cause of death in Australia and that, each week, there are more than 1,700 new cases diagnosed in this country alone….approximately one person every six minutes.

It Is my hope that Bill’s story might help those affected by the disease (more than 332,000 Australians) and those impacted by it (approximately 1.2 million people involved in their care).

I know that the writing of these blogs has certainly helped me come to grips with what happened to Bill as he took that journey that he had to take.  It helped me too, to come to terms with his death.

Thank you for reading.

It was a fitting photo to finish on, for Bill had never been frightened to live his life, to try new things, to face the challenges, to set his course and follow it through.  And that’s what he did when he battled that damned disease they call dementia.

At the funeral, Matthew read a poem. It was sent to us via a friend who worked in aged care.  Written anonymously, it came to us titled: Cranky Old Man.  Before the funeral, I adapted it to fit Bill’s story.

So, here it is, for you to read, an apt tribute to Bill and to all those who are forced to tread that path….

Demented Old Man

 What do you see, people?  What do you see?  What are you thinking when you’re looking at me?

A demented old man, not very wise, uncertain of habit, with faraway eyes?

Who dribbles his food and makes no reply when you say in a loud voice: I do wish you’d try!

Who seems not to notice the things that you do and forever is losing a sock or a shoe?

Who, resisting or not, let’s you do as you will with bathing or feeding the long day to fill?

Is that what you’re thinking?  Is that what you see?  Then open your eyes, you’re not looking at me.

I’ll tell you who I am as I sit here so still.   As I do at your bidding, as I eat at your will.

I’m a small child of two, with a father and mother, a brother and cousins who love one another.

Then a teen of sixteen, with wings on his feet, dreaming that soon now a lover he’ll meet!

A groom soon at twenty, my heart gives a leap, remembering the vows that I promised to keep.

At twenty-five, now, I have young of my own, who need me to guide them and secure them a home.

As a man of forty, my young have grown fast, bound to each other with ties that should last.

At fifty, my three sons have grown and are gone, but my woman is beside me to see I don’t mourn.

Then, at sixty, once more babies play round my knee.  Again, we know children, my loved one and me.

But dark days are upon me ….. Dementia! they said.  I look to the future, I shudder with dread.

For my young are all rearing young of their own.  And I think of the years and the love that I’ve known.

I’m now an old man and nature is cruel.  It’s jest to make old age look like a fool!

The body, it crumbles!  Grace and vigour depart!  There is now a stone where I once had a heart!

Yet, inside this old carcass, a young man still dwells.  And, now and again, my battered heart swells.

I remember the joys, I remember the pain, And I’m loving and living life over again.

I think of the years, all too few, gone too fast,  And accept the stark fact that nothing can last.

So, open your eyes people, open and see, Not a demented old man ….. look closer ….. see me.

                                                                                         Anonymous

“What are you doing?” she screamed, grasping the lighter from him.

“I need to end it all now,” he said evenly, pushing her away.

“But, no, not that!” she cried in disbelief. “You can’t do that.  Look, it’ll be alright.  I’ll look after you.”

“Will you wipe my bottom,” he queried, “And, will you feed me?”

“Yes! Yes!” she answered. “I’ll do anything. Anything to help you.”

“But don’t you see?” he continued. “I don’t want that.  I saw my father go like that and I don’t want it. I need to end it now.  Will you help me?”

………………………………….

I have heard it said that no two dementia journeys are the same and that once you have studied one, that’s what you have studied, one. In the above scenario, we saw one dementia case ending up very early on in its journey and another finishing the course in a state of degradation.

Bill and I had no prior knowledge of the disease that afflicted him, as did that lawyer.  No example had gone before us that we could scrutinise. In fact, before Bill was diagnosed with it in 2010, we had hardly even heard the words Vascular Dementia and, even then, when we researched those words, we found that the literature did not fill us in on all those grey areas that lay between the lines.

Bill and I, then, with no foresight, made our own way, hoping to arrest the disease by teaching and reteaching and by clinging on to whatever strands of ability and reason we could.  And it amazes me, looking back that, even as Bill was admitted to hospital for that last time, we still didn’t get it, we still didn’t understand that Bill was dying.

So when Bill, early on into that hospital stay, began not eating, we relatives and friends focussed our strength on reteaching Bill how to do it.  And, how happy we were when we were successful.  Onlookers would rejoice with us at dinnertime because Bill had consumed half a sandwich and a mouthful of orange juice. And they would celebrate with us at lunch because he drank two small bottles of drink.  Or they would catch us in a state of elation because he had eaten all the custard dessert that had been offered to him.

But it was not enough and, looking back, I realise that the doctor in Emergency, even then, had seen this coming. She had seen it in the brain scan. Why else would she have said:

“Now, I need to ask you this. If it comes to the point, do you want Bill fed intravenously?”

And it all fitted into the overall pattern.  Bill hadn’t stopped eating because he wanted to end it all. He hadn’t stopped eating because he found it difficult to swallow.  He had stopped eating because that part of the brain that governs eating was all but shut down.

We had learnt early on in Bill’s hospital stay that you could not feed him.  He would not let you near his face with a spoon or fork or fingers. If Bill couldn’t feed himself, the fact was that he was not going to eat at all.  We conferred and we decided to ask the hospital’s kitchen to send sandwiches for Bill and only sandwiches.  We reasoned that, if Bill could hold the food in his hand, that action might help him to remember how to eat.  And it worked for a while. Bill would pick up one sandwich and put it in his mouth and eat it.  Then, if one of us, with another sandwich, was modelling the eating process, Bill might follow suit and eat a second. But, as his brain shut down, it was often the case that, though his hand would go up towards his mouth and we would all hold our collective breath waiting for the food to go in, that hand would just as quickly go down again, food uneaten.

“No! No!” I would scream in my head.

But Bill couldn’t help it. None of us could help it.

Sometimes Bill would try, wanting to please us.

“Is this the way?” he would ask, moving the sandwich towards his mouth.

“Yes! Yes!” we would cry, almost too enthusiastically.

But that phase didn’t last long and the fact of the matter was this: Bill’s brain had shut down, yet again, and this time, it was not the abilities to measure or handle money that had gone.  This time it was the ability to eat.

………………………………….

We gathered together for one last day. We wanted it to be a happy time, so they brought the baby.

“What’s Bill’s favourite music?” my daughter-in-law asked.

“He likes classical music and The Messiah,” I answered.

She found The Hallelujah Chorus on her iphone and played it.  We danced with the baby and sang: Hallelujah! Hallelujah!

We sang Happy Birthday too.  It was another granddaughter’s birthday, so we sang. Bill didn’t really wake up the whole time. The morphine had kicked in and, though his eyes were open, they were cloudy and glassy and distant.

………………………………….

The next night, the Uniting Church Minister came to Bill’s bedside. He led us in prayer then spoke strongly into Bill’s ear.

“Bill!” he said. “It’s alright for you to go. We want you to know, Bill, that it’s alright for you to go. Go, now, Bill! Go!”

…………………………………

Bill died at 4:30am on 25th February 2012.

And I like to think that, as he made his dementia journey, the path that we took him on, that one of teaching and reteaching was the best for him. I think it helped him know that he was cherished right to the end.

When our sons and I went to inspect it, we found that the place was bright and clean, that each room had a view on to gardens, that staff members were pleasant and caring and best of all, that the bond requirement was only $300,000.00, far less than that other place.  What’s more, I had known all along about that bond requirement.  Hearing that amount came as no surprise to me.

As we went along with our inspection, we passed three elderly ladies, all on walkers. They were on their way to lunch.  One looked at our eldest son, David, and said: “I’d like to be walking with you. We don’t get to see many men your age around here.”

We all laughed.  We were happy for Bill to come to this place.

But, though Bill’s name went to the top of the waiting list, there was no place available for him at that time.  The place that he would have taken had been filled only three hours earlier.

So, Bill stayed on in the hospital, waiting.

“Bill might have to be transferred to a different hospital,” the social worker said. “One with a palliative care ward.”

She named the hospital.  I baulked.  That hospital was four suburbs away.

“That would be very difficult for me,” I told her.

“You don’t drive,” she nodded.

“No,” I rejoined. “Silly, isn’t it?”

And, though the threat continued to hang over our heads, that transfer never eventuated and Bill, very conveniently, stayed on in our local hospital.

“If Bill’s hospitalisation here is longer than thirty days,” the social worker informed me, “the hospital will start charging Bill thirty-five dollars a day for care.”  I smiled.  Bill was receiving excellent care at the hospital and I was more than happy to pay for it.

Meanwhile, family and friends came to visit.  As we sat together by Bill’s bedside chatting, Bill would often be asleep.  At other times, he would be in the midst of one of his rants, swearing at the nurses when they tried to change his wet underwear, and yelling at his brother.

“You’re nothing!  You know nothing!  Where are they? Where’s he?”

But at other times, he would be awake and politely engaged.  This always happened when our nine-month-old granddaughter paid him a visit.  Though he wasn’t too happy when she tried to pull his blankets off him, yanking them back sharply out of her grasp and frowning, he was mostly happy to see that baby.

So was everybody else in the wing. She’s a smiley little granddaughter, that one, and when she visited, nurses and patients who were mobile would pop in to say “Hello” and see that smile.

Babies can bring such joy wherever they go.  They can light up a room, even those filled with the aged, the frail, the infirm and the dying.

The hospital’s social worker asked to see me.  She was a different social worker to the one whom we had met in Emergency, but she was just as involved, caring and competent.  Bill’s brother came with me to the meeting and we three discussed, at length, Bill’s condition.  We came to the inevitable conclusion that Bill needed to go into a Care Facility.

In November 2011, at the suggestion of the ACAT assessor, I had put Bill’s name down on the waiting lists of five such aged care facilities and I had had, for some years, Enduring Power of Attorney for Bill.  The social worker was quite delighted to find that so much of the preliminary paperwork had been done.  I even had a mandatory letter from Centrelink attesting Bill’s assets and wealth.

The social worker began making the phone calls but most of the facilities on my list were full.  There was one very high-class nursing home that had a room but its administrators required me to provide a bond of hundreds of thousands of dollars…….$450,000.00 to be exact.  I said, “No!” I couldn’t bring myself to part with all that money at that moment.  Maybe I could in a few days time, but just then I needed time to adjust my thinking.  The social worker explained that the money was just a bond and that much of it would come back to the estate once Bill had died.

“This place is on your list,” she said. “You must have known about the bond.”

“No,” I replied. “I don’t recall that place ever giving me a monetary figure.  Others did, but not that place.”

“Very well,” she conceded.  “I’ll tell the doctors that, if you had to take that much money out of Bill’s wealth to pay for the bond, there would be nothing left to generate the one thousand dollars each week that must be paid, on top of the bond, for Bill’s care.”  I hadn’t even given a thought to that payment!

We looked at another place, as well, but the bed that was available was in a shared room, in very cramped quarters and, had I wanted to sit by Bill’s bedside, I would have had to sit in the room’s doorway.  As well, that space which Bill would have occupied was fairly dark, light being kept out of it by the drawn curtain which separated Bill’s space from the room’s other occupant.

I felt a bit pressured to take the place.  Bill, after all, was taking up a bed in the hospital.  Luckily, my sons were with me as we inspected.

“No, Mum,” they said.  “This is not for Dad.”

So, once more, I told the social worker: “No!” and, after we had paid Bill one more visit, we went home, leaving him there, yet again, in the hospital.

Bill was asleep.  Doctors doing their rounds asked me:

“Is he always asleep like this?”

“No!” I answered. “Well, sometimes. But mostly he’s up and about. I thought that you had drugged him.”

They looked at Bill’s chart.

“They did give him a sleeping tablet last night,” one said. “Apparently, he kept trying to get out of bed. But that should have worn off by now.”

“Should I be worried?” I asked.

“No! No! He’ll wake up when he’s ready,” they assured me, moving off.

I stayed with Bill well into the afternoon.  He didn’t wake up the whole time. But by Sunday, he was much improved, alert and chatty, and by Monday, he was even better, probably ready to come home.  I was ready to take him home too, but I was a bit wary because the resident nurse had said to me, on the quiet:

“I just want to say this to you: Do not take your husband home. No matter what the circumstances, do not take him home.”

It seemed that taking Bill home relied entirely on a positive report from the hospital’s physiotherapist, who came in the afternoon to assess Bill.  She and her assistant put Bill on a walker and took him for a short walk around the corridors. After they had returned and settled Bill into his spot and departed, I said to the nurse: “I would like to take Bill walking on that walker again. He needs to walk. He likes to walk. But I’m worried that, if he’s with me, he’ll think that he is going home.”

“You’re not taking him anywhere,” she retorted sharply.  “That man is very unsteady on his feet. You saw how it took the two of them to take him on that walk. There’s no way that you would be able to manage him by yourself.”

Just then, the doctor came in.

“Well, we’ve had Bill up on the walker,” he said, “and he’s handled that quite well, the ankle seems better and he’s quite cheery, so you can take Bill home if you think that you can look after him.”

“I can look after him,” I said, “but I’m just a bit worried about those times in the evenings when I have to change his incontinence underwear. Bill doesn’t understand when I tell him to lift his foot, so I have to jerk it up. Already he’s fallen a couple of times because of that. And now, he doesn’t seem to be as sure on his feet as he was then, so I’m worried.”

I was thinking, at that time, that the doctor might suggest some form of home help to assist me for those half hours at night. But he made no such suggestion, merely turning on his heel and departing.

Bill remained in hospital and I went home without him.

While we were waiting there in the cubicle, the social worker hurried in:

“We’re going to give you a break,” she said, picking up Bill’s chart and glancing at me. “You’ve been a saint looking after him all this time and we’re going to give you a break.”

I was mystified, thinking:  What a strange thing to say.  It was by the by that I knew that I was no saint and that if anyone had been a saint through all this, it was Bill, coping so well as he did with the rough hand that life had dealt him.  The puzzle wasn’t that she used the word saint but rather, why would you use it?  Did Bill’s brain look that bad?

Soon after, the doctor came in.

“I’m just going to have a look at Bill’s ankle,” she said.

“Yes, I thought as much,” she added, feeling the ankle. “It feels hot. I think there might be infection there. Here,” she continued, glancing at me.  “You feel it. Does it feel hot to you?”

I felt it but I didn’t think that I felt any heat.

Then Matthew, who had arrived after school, put his hands on the ankle.

“I think that it does feel a bit hot,” he answered thoughtfully.

“Yes,” the doctor said.  “I think that we’ll put Bill into hospital for a few days.  We can give him a course of antibiotics and get this ankle better.”

It was Friday evening.  I had heard it said that nothing happens in hospitals over the weekends so this Friday evening admittance all seemed a bit strange to me.

Bill, by this time, was sound asleep.  It was late and he’d had a big day.

“It’ll take a while to organise a bed for Bill,” the doctor said.  “It might be best if you all go home now and come back in the morning.”

So we went.  The last time that Bill had been hospitalised, hospital staff had allowed me to stay with him, sleeping on a lounge beside him as he slept in the hospital bed. I didn’t even suggest that this time.  I was too tired.

And that’s how it seemed to go.  The nurse stuck stickers all over Bill’s body and the wires that went from them to the machine reported that his heart was fine.  They straightened his arm, took blood and determined that all was well in that area too.  They x-rayed his ankle and took out their stethoscopes and listened to his lungs and pronounced that Bill’s chest was clear.

Then, friends arrived to sit with us, Bill brightened up and we ate and laughed and chatted. I put an extra blanket on Bill, wrapped one around my shoulders and made a mental note to bring a cardigan next time.  We reckoned that we would be out of Emergency by four o’clock.

Then they sent Bill for a brain scan.  That was unusual.  Doctors didn’t usually put Bill through that. As a rule, they agreed with that specialist who, eighteen months before, had said:

“I don’t need to see another brain scan.  I know what Bill’s brain looks like and there’s nothing that we can do for old stroke.”

“Maybe they are going to do something for a new stroke,” I thought.

We trundled down to the X-Ray Department. They put Bill’s head in the tunnel, put a heavy apron on me and left the room to press their buttons.

Four o’clock came and went but we were still there in Emergency.

Then, the results of the brain scan arrived. The doctor, the social worker and the nursing sister huddled together over the x-ray, deep in discussion.

“Could you step out into the corridor for a minute?” the Doctor asked me.

I stepped out.

“Now, I just want to ask you,” the Doctor went on, “If it comes to the point, do you want Bill fed intravenously?”

“No!” I answered, wide-eyed. “But we won’t have any trouble getting Bill to eat. He eats quite well. He might miss a course of a meal, here and there, but generally no, he has no trouble eating!”

“Good!” said the Doctor.  “Now, I just have to ask you this. Do you want Bill resuscitated?”

“Well, no!” I answered, thinking of those last few years when Bill had been forced to live life in a prison of haze, watching everything important and dear to him slip away. “No!”

I have never been good at reading between the lines.

I remember when I was in Teachers’ College in 1958. I was seventeen.  The biology lecturer had told us the story of the life cycle of the rooster and the hen. With but a few inferences to guide us, she expected that we students would make the connection between that story of copulating birds and the human experience. The boys sitting up the back of the lecture room had all made the connection. You could tell by their sniggers. But I remained in the dark.  That’s how I was in 1958 and that’s how I was at that moment in time in 2012 in the Emergency Department of the hospital.

“Just a few questions,” I told our friends, re-entering the cubicle.

“Do I want Bill tube-fed?  And do I want him resuscitated?  No, to both!”

Our friends looked at me intensely.

Maybe they had greater understanding than I did.

Getting Bill out of his chair had always taken two actions.  Firstly, Bill had to push himself up. Then secondly, when he was halfway up, I had to catch him under the elbow and push him further upwards until he was standing.  Once he was standing and on the walker, it was usually the case that all was well.

On this occasion, though, it seemed that Bill could not get himself halfway up as he needed to.  He could get himself a quarter of the way up but that wasn’t enough.  Though I caught and pushed with all my strength, I could only get him up so far and then he would always fall back again into his chair.

“We’ll wait for Roger,” I said. “Roger will be here soon.  He’s going to do some work for us fixing the fittings on the pontoon.”

Roger duly arrived. He picked Bill up out of the chair without too much trouble.  But, as soon as Roger had him up, Bill cried out in pain and Roger had to sit him down again. Bill was bright enough when he was sitting, chatty enough, wanting the stand up to happen.  But it just wasn’t happening.

While we were pondering what to do next, the OzCare nursing aide came through the door. This particular carer had told me, just a week before, about a client of hers who had been fine one day but, on the next, had found that he could not walk. He had had to leave his home and go into Care. I wondered, fleetingly, if this was going to be a case of deja vu for this lovely lady who had become our friend.

Though OzCare carers are not supposed to lift their patients, she and Roger together made one more effort to get Bill up on to his feet.  But it was all to no avail.  The cry of pain was scary and they had to put him back down into his chair again.

I could see that I had no option. I had always known that, if Bill couldn’t stand and move himself from one spot to the other, then I couldn’t care for him. I called Triple 0, the paramedics put Bill and me into the ambulance and, for maybe the fourth or fifth time, he and I were off to hospital.

Bill, on the occasion of his granddaughter’s Christening, 28 August 2011

Look at this photo.  You can see Bill quite clearly, standing with us as we celebrate.  He is standing independently and though I am by his side, I am there to help him comprehend, rather than to hold him upright.  There is no sign that he might fall and, in fact, at that stage, that worry was furthest from our minds.

Then, two months later, in November 2011, Bill started to have falls.  At first, they were what the nurse called, soft falls.  When, for example, Bill slid to the floor, trying to get himself out of the recliner chair, he fell softly and didn’t injure himself. When the paramedics set him on his feet, they could see that he was not hurt and did not need to go to hospital.

Other soft falls occurred when Bill didn’t position his body on the chair properly or when I toppled him, trying to change him at night.  Because I changed him in a spot where he was surrounded by furniture, Bill was able to grab on to things as he went down and save himself.

But soon after, Bill started to have some falls that bruised him and grazed him.  One occurred when, knowing a taxi was on its way for us, I raced out the back door to turn off the hose that was topping up the pool with water.  Bill hurried out after me, tripped in the doorway and fell.  Luckily, the taxi arrived at that moment and the driver helped me get him up.  Another time, Bill’s walker collapsed from under him as he lifted it up on to a step.  Thankfully, our neighbours, who lived directly opposite, came to our aid.

The nurses talked about hip supports.

“If Bill broke a hip,” they’d say, “it’d make life really difficult for both of you.”

I was thinking: Care Facility!

But before we went to either of those lengths, we did our usual act of looking to see if we could solve the problem.

We determined that Bill was taking falls because, firstly, he was losing his sense of awareness, secondly, he was losing strength and thirdly, his feet and legs were swollen.

We began giving Bill protein drinks in the hope that they would help him build up his strength. Then we looked into fixing the problem of Bill’s swollen feet and legs.  We found that, because he was no longer very strong and could not push the recliner chair’s extension down, we could elevate Bill’s feet for most of the time that he was in that chair.  To my amazement, this treatment, together with a course of fluid tablets, actually seemed to solve the problem. As I watched, over a matter of a fortnight, Bill’s feet and legs became dramatically more trim.

But my hopes that we would see permanent improvements in Bill’s physical condition were soon dashed as it became obvious that those slender feet and ankles were making no difference at all.  Bill still could not stand or walk without support, could not manage to walk for greater distances and still had the occasional fall.

I guess that the body awareness factor and Bill’s decreasing strength played greater roles in this decline and fall than we had expected.