Dementia Days

Sigrun and her granddaughter

Before Alzheimer’s, my mother used to be able to speak 4 languages: German, her mother tongue, English, learned in school and later from her husband, and French and Spanish, also learned in school and during travels to her much loved countries of France and Spain.

Sigrun has visited many cultures, but at her core she will always be German. Depending on your own background, this statement may produce a myriad of images in your mind: From Colonel Klink in Hogan’s Heroes to Volkswagen’s Fahrvergnuegen commercials, from Oktoberfest to pretzels and brats. (German culture has had a curious impact on American culture!) In any case, learning that somebody is German most likely will prompt you to have certain expectations of your interactions with said person.

As an example, if a person encountered another person with large ears, the German would probably state the fact that the person had large ears. It wouldn’t be meant as an insult, merely an attempt to make contact. The American, made uncomfortable by the large ears, would probably comment on the person’s lovely eyes, or hair, or clothes. Again, this also wouldn’t be meant as a deception, but an attempt to connect.

An American may think of German directness as rude. Yet, when we look West (say, towards Japan), it is our American culture that is more direct, and often considered rude. So, it helps to remember that cultural traits are rarely absolute. They are rather a matter of perspective, and shouldn’t be judged out of context.

In my mother I see loyalty, directness, and a critical mind as reminders of her native country.

In dementia, I’ve found that often times people become more direct. It seems that carrying on protocol and pleasantries gets more and more difficult. So directly saying what you think allows the demented to communicate.

When I first moved to the US, I much appreciated how we as Americans like to couch our comments, be politically correct, not offend.

Now, with political correctness run amok and true information being exterminated by infotainment, I sometimes long for German directness. That’s when I love visiting my mother’s reminiscence unit. Before they lose control over their language, most residents say no when they mean no, even if it offends. They refuse the food when it doesn’t taste good, and they don’t participate in games that don’t interest them – no matter how much effort was put into the planning by caring staff. Even without words, residents will find ways to make it known that they disagree, are not happy, or want to refuse something. (see previous blog posts)

Whether it’s in politics, social interaction, or journalism, I believe our society would do well to discover the German or the direct Alzheimer’s patient in us, discover and discuss facts without spin, call that proverbial spade a spade, and shift away from the individual-centered lifestyles, back to a sense of community.

When asked what he thought about newly emerging digital communities, Wendell Berry, one of my favorite authors, cautioned his audience to realize that when speaking of a digital community they are speaking of a metaphor. He reminded us of Aldo Leopold’s understanding of community as the people, the place, and everything in it.

“We abuse land because we regard it as a commodity belonging to us. When we see land as a community to which we belong, we may begin to use it with love and respect.”

from A Sand County Almanac by Aldo Leopold

I belong to a very digitally focused generation. Of course, I am writing these lines on a weblog. How much more digital – and somewhat impersonal – can it get? I love connecting with long lost friends on Facebook. And not a day goes by that I don’t use e-mail for work or play. I do research on the internet, find answers for my children’s questions through Google, love traveling to foreign lands and use my cell phone to talk to coworkers, friends, and family too far away to be considered my immediate community.

Yet that is exactly what I (and I think many of us) need: an immediate community. I believe that cultural exchange in most forms enriches most communities; but in order for a culture to exist, a community needs to be in place – and not one of those metaphoric digital communities that allows you to remain mostly anonymous and without accountability –  a community that takes care of its members, but also doesn’t let them get away with murder (or pollution, or exploitation).

I can’t help but wonder, if BP CEO Tony Hayward lived in a beautiful country cottage near Barataria Estuary, whether this oil spill would ever have happened, and, if it had happened, whether the solutions now would be different. And, of course, right now we all love to be angry with BP – as we before loved to hate Exxon. However, there will always be corporations out there that will abuse our people, our places, and everything in them, because their bottom line is profit.

Communities, true immediate communities – when was the last time you chatted with your neighbor? – will hold its members responsible while supporting them. My much loved digital friends can give me tips and suggestions, but they cannot help me take care of my mother or raise my children.

And I know it is difficult to let go of the safe individuality and anonymity provided by our ever-growing cocooning (my mother used to say she didn’t want the neighbors looking in her cooking pot), but the price we pay for the loss of community, and with it the loss of culture is far greater. So, be your community German, American, urban, rural, or suburban, join me in jumping over the boundaries of your individual culture and ask your neighbor how you can help them.

Today my children received a letter from their cousins – not an e-mail or a voice mail or some other digital form of communication, but rather some carefully thought-out drawings, some letters, some numbers, all assembled artfully with crayons and pens on real paper, sent in a real envelope – and today, deposited into our mailbox.

There are many things in our society that, with the development of new technologies, have changed for the better. However, I belong to the group of people who lament the loss of letter writing as a form of communication. Many values rapidly disappearing among us are represented in a well written letter: It takes time to construct, thoughtfulness to express what is important, more thoughtfulness to leave out what is not, and calm and quiet to put it all down on a piece of paper, not to mention the skill of writing (or drawing – in the case of my kids and their cousins) so other people can understand and appreciate the missive. There is delay of gratification and strengthening of patience when waiting for a response.

In the early nineties, before wide use of the internet and e-mail, I spent a couple of years in West Africa as a Peace Corps volunteer. There was a phone at the post office in the regional capital, about 50 miles from my village, and, about once a month, I’d arrange a call with my parents. Other than that monthly call, all communication with friends and family back home took place via letters. As many of you can imagine, a Peace Corps volunteer has plenty of time to fill (for a great book on this subject, check out “The Village of Waiting” by George Packer). With a longing for home and the calm to dedicate myself to each letter for several days, I would pour out my heart over dozens of pages. Not all of my letters made it home, but my mother and father dutifully collected all they received. And now, upon my father’s death and my mother’s dementia, I once again hold these letters in my hands.

In his responses, my father mastered the quantity of letter writing. Every day he went to work, he’d compose a one-page letter to his youngest daughter – me – during the entire time I was away. These messages mainly consisted of weather reports, some events in the family, mostly what one would today consider “touching base.” However, I will never forget the dedication it must have taken to keep up this connection.

My mother mastered the quality of letter writing. Though not as frequent as my father’s correspondence, my mother’s letters were filled with emotion, caring questions about what I had written, comments about the pictures I had sent home. In many ways, I may have been in closer contact with my parents during this long absence from home than I had ever been before.

Now, as my sisters and I sift through the myriad of boxes of memories, we are, of course, finding an abundance of letters: letters from my father’s mother to him while he was traveling as a bachelor, letters from my mother to friends in former East Germany, letters from cousins on the West Coast, letters from colleagues across the globe, and many, many letters my mother has begun, but wasn’t able to complete because Alzheimer’s got in her way. Finding one of these letters that begins “Dear Alana, …” and is followed by a beckoning blank page demonstrates how so much can be expressed with so little. I want to say, “I know, Mutti. I love you, too!”

Of course, then there are the other “letters” my mother has written since the onset of dementia. The many tribulations that follow the path of dementia trapped my mother in a cycle of anger and paranoia over lost and misplaced items, shining a light of suspicion on anybody in the vicinity of her possessions. Missing music CDs clearly must have been abducted by her husband, my father. Lost keys may have been stolen. Drawers and cabinets never looked the same as how she left them. So somebody was “messing with her stuff.”

When I was a child and things were misplaced in our house, my mother jokingly referred to “the ghost with the name ‘nobody’” as the culprit. In the years of Alzheimer’s, many of her notes were addressed in a similar way: “To whoever has been taking my CDs, Don’t. I really need them.” Or: “Don’t touch my things. They are mine.” It has been over a year now since my mother was able to write these notes, and I miss them. I miss the feisty woman who would battle that ghost named “nobody.”

So, I encourage my children to keep up their correspondence with their cousins; and I hope letters will continue to be written, whether they are addressed to family, friends, pen-pals, or a ghost named “nobody.”