What does one do when one’s life is taken away?  When, because you can no longer do it yourself, your wife must clip your nails and trim your nose hairs?  When you punch, wildly, at those who are helping you? When reflections become people and people become anonymous?  When language eludes you and numbers become a far distant blur? What do you do?

One day, in the late 1980s, I listened to an author being interviewed. He had written a book about his imprisonment in South Africa in the days of Apartheid.  He was kept, for the whole of his time of imprisonment, in solitary confinement, deprived of all that had made up his former life.  Much of his story was about the life that he had made for himself to replace that former one. So, he told us how he spent time, each day, making friends with a little bird and how the bird came to visit daily, pecking hungrily at the crumbs that the prisoner threw to it through the bars. Then, on one of the bird’s visits, a guard shot it. So, though very much saddened by the loss of his friend, the prisoner had to find something else to occupy him.  And, with not much on hand in his cell, he had to resort to counting the woollen strands of his blanket.

The German philosopher, Nietzsche, once said that:

To escape boredom, man works either beyond what his usual needs require, or else he invents play, that is, work that is designed to quiet no need other than that for working in general.

Bill, far gone with dementia, was no different from Nietzsche’s man or the man in the prison. All his life Bill had enjoyed work.  Now that he had lost all the abilities that allowed him to work sensibly and purposefully, he did what that prisoner and Nietzsche’s man did. He made up work and, in the end, it was work not a lot different to that of counting strands in a blanket. His favourite job, as I’ve said before, was pushing chairs.  He pushed them from one spot to another, into various rooms and out on to the road.  He did it with the seriousness of a child at play.  Sometimes a chair from our dining room would be moved around the table and, on its way, would knock another chair on to its side. Then, two chairs would be being pushed along to a certain spot, maybe by the front door or into the family room.

It made me laugh because, ten years earlier, Bill had re-glued those chairs and had admonished me quite sternly, saying:

“Be very careful with those chairs.  I’m never going to re-glue them again.”

He got that right!

If Bill wasn’t pushing the dining room chairs around, he was pushing those from the family room.  I had to renew their sliders at least once a week because they wore out so quickly with all the pushing. And, if Bill wasn’t pushing chairs, he was pushing his walker.

A friend once said to me: “What does he do all day? Does he just sit there staring into space?”

“On the contrary,” I replied laughing.  “He’s actually very busy all his waking hours, filling up his life with activity, with anything that might make him feel that he is still living a life full of purpose.”

Pushing chairs was always Bill’s main activity but, as I’ve said before, he was also partial to stashing things in the boot of the car, bundling newspapers or tidying up, that is, hiding things like electricity bills.  One morning when I arose, I found that he had used scissors to cut up a brand new, thirty-dollar cushion.

Then, of course, he went for drives with the nurses or with friends, went for walks, while he could, and followed me around as I tackled household tasks.  Through 2010, he could watch a bit of television and, in the afternoon, he might nap.

At one time, I said to the nurse:  “Do you think I am doing the right thing? Should I be looking to put Bill into care?”

“In the care facility,” she answered “they would do a wonderful job of looking after Bill. They would keep him clean and give him good food and there would always be other people there for him to talk to.”

“But would he be able to push his chairs and his walker around?” I asked.

“No,” she said. “Usually, in the high care, secure dementia wards, the nurses move the clients from their beds, in the morning, to the sun lounges on the veranda, where they stay for the rest of the day. The clients walk a bit in between but that’s about it.”

“So, Bill wouldn’t be able to move around on his walker for a length of time?” I continued.

“No,” she answered quickly. “There are some care facilities that provide pathways for active clients like Bill to walk along but these clients have to be supervised and usually the nursing homes do not have enough supervisory staff to allow clients to walk for very long.”

“So, Bill’s better off here at home with me,” I murmured.

“Believe me,” she agreed, “Bill is a hundred times better off here in his home than he would be in a care facility.”

Often times, for a myriad of reasons, dementia patients cannot be kept in their homes and have to go into care.  Bill and I were lucky.  Everything worked for us and he was able to stay, living his life, right to the end. The outsider, looking in, might have looked and seen a madhouse, with Bill pushing chairs around and me pushing them back again once I thought that he had finished with them. But we were both living our lives.  Bill might have been living his life in another dimension but, at home, he was still able to do what he’d always wanted to do and that was, work. One life had been taken away from him but, like the inmate of that South African prison, he had managed, with bravery and fortitude, to create for himself, another.

And, maybe I will put on his graveyard plaque:  He lived an active and meaningful life, right to the end.

Bill and Fay, living their lives, May 2011