Dementia, Creativity, and Forgetfulness

One thing I have learned from my mother’s dementia is that it is not just about forgetting; her dementia has also brought rich imaginings. Surely, Mom has forgotten much – people, where she is, what day it is, what year it is – but she is also constantly constructing stories. Some of her creative endeavors are complex and intriguing; others are horrifying. There are fictions which seem to be born of paranoia – the first time we knew she had slipped over the edge was when she called to tell me all her money was gone. The government had taken it all. Other tales seem to have been spun to explain inexplicable situations or to shift blame. Once, when she found her gallon of milk frozen solid in the freezer, she told me that a whole tribe of boys had broken into her assisted-living apartment overnight and made a mess and hid her milk. This, of course, despite the fact that she lived in a secure building with no children anywhere around.

Still other stories seem to be created just to make her life more interesting. For a fortnight, she was routinely telling me that she had spent the previous night out on a boat, having been evacuated due to impending floods. Luckily, she thought that everyone had a pretty good time on the mandatory cruise, and she would discuss their revelry at length. She has also recounted visits from friends who are long since dead and relatives who claimed they hadn’t been near her in months. Sometimes she conjures up an answer to a question that puzzles her. If I ask her where a bouquet of flowers or a new blouse comes from, she will tell me she won them in a contest. Some tales are funny, some are scary, and some are so outlandish it is hard to imagine how she ever thought of them.

Two themes come back again and again. Although my mother never had an office job (she was an artist), she often talks about all the paperwork she has to do before they will let her “go home.” As she has fallen farther from reality, Mom shuffles the coloring books in front of her and tells me that unless she finishes all this “work” there won’t be any money to pay her rent. She worries that if she has no money, they will not feed her. As many times as we have all told her that she has no financial worries, that everything is taken care of, she responds with more creative tales of men in suits who have come to take her money away.

And she worries about her mother and father, who have been gone for decades. Who is taking care of them, she’ll ask. Maybe she is really asking who will take care of her. But again the stories get elaborate – her parents live somewhere over the bridge, their phone is broken, they promised to come to visit.

Sometimes it is easy to see what sparks her imagination; other times the tales seem to come out of the ether. The stories are more often worrisome than comforting, but they are her stories and she sticks to them. I have seen various articles about fostering creativity in dementia patients, but little about the very fount of creativity they seem to become. We sometimes think of dementia patients as losing their humanity, but isn’t imagination the very kernel of what makes us human?

I was recently reminded by Lewis Hyde in his new book Primer of Forgetting, that forgetting can also be a creative and useful process. If you think about it, you might agree. There are things that we must forget or we cannot go on – either because the memory is so atrocious or because there is no more room. How many times can you relive that humiliating moment when your first boyfriend dumped you? Or the stupid things you did in your younger days? (“Remember not the sins of my youth,” pleads the Psalmist.) How many phone numbers or passwords can you hold in your head? (I think of the story about Louis Agassiz, who was famous for memorizing all the scientific names for fish and their parts. When Agassiz came to Harvard, he decided to put that prodigious memory to work to remember the names of all the students, at which he proved very successful. However, one day he realized that in memorizing undergraduates he had started to forget the fish. He immediately gave up on the students.)

Someone told me a story about his mother who had grown up in terrible circumstances in Hitler’s Germany during WWII. Her childhood haunted her, was written on her face, until she developed dementia in old age, and then it was somehow …better. I understand this and so does Philip Larkin – read “The Winter Palace” and you will sympathize. There are things my mother has forgotten (she almost never mentions her husband of over fifty years), but memories of her childhood seem to have sprouted from some forgotten seedbed and blossomed in full technicolor. In her own way, she has been creative in her remembering and in her forgetting.

This week’s story, “Slip Slidin’ Away,” is about an older woman with dementia whose imagination might be trying to tell her something.

Eden

Many dementia patients – including my mother – revert to the past. In my mother’s case, she escapes to a time before she had a husband or children. Experts in dementia say that age eighteen or nineteen is often where such patients end up. She looks for her parents, for houses and gardens she lived in long ago. Wonderful places. Gardens of Eden where she has no worries, where there is no shame or aging or death. And perhaps we are all looking for such a place. Perhaps we are all trying to return to Eden.

Before the era of progress, all of western culture looked back to Eden. Man had degenerated from the original Eden, from the original Golden Age. And so had the earth. Erosion of mountain peaks and the shortening of the life span from the amazing Biblical ages pointed to a world in the state of slow but continual degeneration. But then, somewhere along the line, we started to look forward rather than back as a civilization. The shift on the macro level, however, has not seemed to make a difference to the old demented person who is sure that her mother is waiting for her somewhere with a bowl of warm tapioca pudding.

Admit it. We all do a little of this backward-looking – we all remember Christmases that had a special glow or a magical childhood hiding place. We all, sometimes, want to return to Eden. But it can’t be done – or at least not easily. James Baldwin put it best:

Perhaps everybody has a garden of Eden. I don’t know; but they have scarcely seen their garden before they see the flaming sword. Then, perhaps, life only offers the choice of remembering the garden or forgetting it. Either, or: it takes strength to remember, it takes another kind of strength to forget, it takes a hero to do both – Giovanni’s Room.

In order to go back, one has to toss aside all that has been accumulated through the years. Renounce it. Religions say that this is one way to come to fulfillment:

The purpose of all valid spiritual disciplines, whatever the religion from which they spring, is to enable us to return to this native state of being – not after death but here and now, in unbroken awareness of the divinity within us and throughout creation… that state, is the Eden to which the long journey of spiritual seeking leads…. (E. Easwaren)

And some say that to grow up, we must leave Never-never Land behind us. In the old and confused, though, it is perhaps a safe haven. They go back to what doctors sometimes call a “reminiscence bump” from earlier life. Faced with physical and mental infirmity, the specter of death and the loss of a familiar world, these elders can go back in their minds to the haven of their youth. And perhaps we should be glad they can.

Where (and when) was your Eden? And have you tried to get it back through effort and acquisition (buying a house like the one you grew up in) or by renunciation? Have you forgotten it? Or are you one of Baldwin’s heroes who can acknowledge it and yet move on?

The story for this week (“Back to the Garden“) is not about elders, but it is about those who are facing the end and the garden where things start and things stop. It is also a tribute to Joni Mitchell and her exhortation in “Woodstock”: “We’ve got to get ourselves back to the garden.”

Notes on Faust

I just came back from visiting my mother in Memory Care. A few days spending time with patients in various stages of health and dementia has gotten me thinking about Faust again – about the Faust legend in general terms and what kind of Faustian bargain we might have made and be making for the miracles of life extension.

Spengler called Faust the fundamental myth of Western Civilization and this myth has been tackled by great authors from Marlowe to Goethe to Mann to Bulgakov. In case you have forgotten, Faust is a scholar who sells his soul to the devil in return for knowledge, power, wealth. Faust supposedly traces back to an historical figure in early 16th century in Germany, and was kept alive because it struck a deep chord in those who heard it or read it – in farcical plays, in fireside tales, or in early chapbooks.

“Not enough Fausts are written. Everyone should write one,” said Ludwig von Arnim in the early 19th century. In fact, we all write one with our lives. For what are we willing to sell our souls? I, in fact, wrote a “Faust” novel a few years back (the prologue to A Kind of Joy or An Essay with Characters is here), and the exercise forced me to think about this question and how other authors have dealt with it. Marlowe’s Faust asked for magic, Mann’s wants to create great musical compositions, and Goethe’s wants never to be bored. The Faust I created was a woman, and she wants the opposite of what Goethe’s Faust wanted – my fictional Faye wants contentment, peace. For that she is willing to sell her soul. But that is a story, a thought experiment.

If the Faust legend is the central myth of Western culture, of the Enlightenment, then what has our culture bargained for? Like Goethe’s hero, we surely don’t want to be bored; one might wonder what we have sold our attention for. And we don’t want to die. In most of the Faust stories, the protagonist gets twenty-four years before the soul must be handed over. But twenty-first century people do not want to die at all, and has continually increased life spans until our bodies often last much longer than our minds. Science may solve this problem, but don’t count on it. And thus we keep building “Memory Care” facilities to house our bodies, and we keep uploading our pictures and memories to the cloud to ensure that they are not lost forever. I don’t have an answer. Science has done wonders in eradicating disease (think of polio vaccine!), disability (think of cataract surgery!), and the debilitations of old age (think of hip replacement!). It has also made many deadly diseases into simply chronic ones (think of insulin!). But it has not yet enabled our minds to function as long and well as our bodies do.

In the end, most fictional Fausts learn their lesson. Sometimes they lose their lives and souls (Marlowe) and sometimes they recant and the author rescues them at the last moment (Goethe). It doesn’t really matter. The important point is to consider what we sacrifice in life for what we receive. It is easier to think about the rewards and not the payment, but there is that unavoidable moment when payment comes due (Goethe notwithstanding). My mother has lived far longer than her parents or grandparents, but finds herself in a mental state that they never had to experience. Our planet has afforded most of us in the West lives of comfort and plenty, but now our seas are rising and our summers are stifling. Faustian bargains are traditionally with the Devil, but perhaps we could think of the Devil as representing our more impulsive nature, of the tendency to favor immediate gratification over the long-term good. In any case, it is an interesting problem to think about.

Faust might be an especially good legend to contemplate in our old age. In Goethe’s version, it is the old mythological couple, Baucis and Philemon, who stand up to the land-developing, greedy Faust. They refuse to sell out and move from the remote bungalow and thus anger Faust: “Their stubbornness, their opposition/ Ruins my finest acquisition.” Needless to say, they lose (and die), but they will forever stand on the moral ground. In the remoteness of old age – past the time of ambition and acquisition – maybe we can see the ramifications of the Faust myth more clearly  than our children. It is worth thinking about. What did you sell your soul for? What would you sell your soul for?