A few months ago, I watched an episode of Waking the Dead (ABC1 Friday 8:30pm).  In the episode, the ageing law firm partner was suffering from vascular dementia.  His colleagues were covering for him at work but it was going to be only a matter of time before he would have to give it all up.  One night, his girlfriend walked in on him as, seated in a chair, he was about to light a cigarette lighter and drop it on to his petrol-soaked clothes.

“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?”

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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.

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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.

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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!”

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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.