Dementia Days

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.”

Sigrun, my mother, my Mutti

Last Sunday was Mothers Day and images of the American Dream family of husband, wife, and 2.5 kids, not to forget the yellow lab, have been flashing across our TV screens, are plastered on billboards and into our mailboxes. Flower bouquets and chocolate boxes are becoming second tier to the more high tech higher profit margin gifts of electronic book readers and robotic vacuum cleaners – the schizophrenic message to those super-moms apparently being that, though they don’t have time to turn a page in a real book, they ought to read several thousand at the same time, while their Jetsons housecleaning device will make them the Martha Stewart they have envisioned (not the one in the orange jumpsuit, but the one in the million dollar mansion).

I would like to take the time to say thank you and honor us real moms; moms who come from all walks of life, people who are mothers to their own mothers and fathers – and, of course, these can be men or women! – moms who are alone in their quixotic efforts to fend off the marketing machine telling them what they ought to be, moms who share mom-hood with another mom, dads who are alone and thus have to be moms, too, dads who are together and share mom duties, so many kinds of different moms, so much richer than the Stepford wives of the media. Thank you, all of you moms!

And finally, thank you to my own “Mutti” (mom in German), a woman who loved turning a real page in a real book, a woman who continues to bring joy to her daughters with merely a sparkle in her eyes.

Yesterday, my husband and I carried the last remaining furniture pieces out of my mother’s big storage unit. It was a momentous occasion, the end of a story of stuff that has been going on in my family for a very, very long time.

I grew up in Germany, where my father, originally from Washington State, and my mother, originally from Berlin, consolidated their possessions in a house in the suburbs of Munich. My father had spent a great deal of his life traveling. So, masks and paintings on the walls, bowls and statues in the shelves reminded him of his footloose and fancy-free bachelor days. He also was quite the bookworm and instead of walls, we had bookshelves in many rooms.

My mother had lived through most of World War II in Berlin, an experience that left the child survivor with a passionate need for security, security as an adult often sought in stuff – things with which she could outfit our little nest, items that would show the world in Scarlet O’Hara’s words: “I will never be hungry again!” It is quite possible that Sigrun could have been categorized as an oniomanic. However, I believe my mother never felt much regret for her purchases, but rather, like a child given a special gift, enjoyed and appreciated each one of her acquisitions.(If you have read the post “Coocoo for Coco” you know that she took advantage of her extensive wardrobe.)  Nor did she buy only for herself. She loved shopping for her family just as much, if not more.

I sometimes wonder whether the pervasive need of the WWII generation to collect sweeteners – which, by the way transcends cultures: in Germany, my aunt collected sugar cubes – is linked to the memories of less stable times. In the US we might consider the link between the Great Depression and Sweet’N Low. And, if there is a connection, what will our generation be collecting when we feel our life slipping away from us – computer chips?

But back to our story of stuff: So, my parents had filled a house with two lifetimes of things. Then my father passed away and my mother was diagnosed with Alzheimer Disease. And three daughters, who until then got to be the footloose and fancy-free generation, had to step up to the plate. My oldest sister spent an entire month sifting through the Berlin apartment where my parents had since moved. (How they managed to cram the contents of an entire house into a two bedroom apartment is beyond me.) Everything was packed up and transported to a storage facility in the US.  That storage facility flooded and everything had to be moved to another unit. Then we moved to another city and everything had to be transported to yet another storage facility. And, over the course of the following year, brave daughter #1 sifted once more through all those possessions, all those memories, all that stuff.

Out of three units, she chiseled two; out of two finally one. All that we are left with now is my mother’s memory care room and a small unit of things we are keeping.

I cannot count the amount of times we swore never to do this to our children, to rid ourselves of our proverbial sweetener collections before it is too late, to borrow books from libraries, not create libraries in our own homes, to only keep what we need. Few lessons imprint themselves on the brain as much as the ones that are paid for with blood, sweat and tears. And that is something else difficult to count: the many tears, the laughter, and the bruised knees we shared in the storage units, marveling at two lives spread out in front of us in boxes and piles.

P.S.: Although only tangentially related to this post, “The Story of Stuff” (www.storyofstuff.com)  is an excellent 20-minute animation that, if you haven’t already, you should take the time to view.

P.P.S: If the true price of stuff were calculated including storage, transportation, frustration, and spent energy, and that price were listed when you bought the items, how much less stuff would the average person accumulate?

So, that dreaded ghost of dementia pops up in my family’s midst, and I throw myself headlong into all the logistics that come with it. I take care of living arrangements, doctors visits, safety concerns, food needs, financial matters, and so on and so on, and suddenly I have a moment with nothing to do. I’ve just spent days, weeks, months, even years, adjusting to the new reality, thinking about everybody but myself. And now, there’s me. And chances are, I have this moment right after I realize I forgot something.

And there it is, not a ghost in the room, but more like an elephant: Am I showing the beginning signs of dementia? Have people been politely tolerating my lapses?

Over the past days, weeks, months, years, I have scanned my memories of the past, and there were so many “oh” “ah” and “aha” moments, realizing how long dementia had already been a steady companion to my mother. The continuous searching for keys and glasses, the missed appointments, the oddly addressed envelopes, the strangely stored possessions, the decreasing ability to communicate in a true dialogue – many of these things having been going on since I was a rather intolerant teenager who was more concerned about having her own voice heard.

So now, in this moment after I’ve misplaced my keys or forgot about my sons play-date or just monologue-ed at my husband for 10 minutes straight (he truly is an exceptional person!), I begin to wonder… If Sigrun’s dementia started long ago, maybe mine is starting now? It does run in families, and I’ve found myself to be quite forgetful lately…

It is much easier letting go of stigmas and being understanding and compassionate with your loved ones dementia. When I consider that I myself may be developing dementia, I find myself right back where I was with the fear, dread, and lack of understanding about the disease.

The next step is to contemplate the consequences: So what if I have dementia? If it’s ok for my mother, why should it not be ok for me? My sister Fiona reminds me frequently that it is, after all, a race between the mind and the body. One of them is going to give before the other. Which would I prefer: To be in pain as my body bids farewell, or to feel somewhat confused, but mostly pain free as my mind takes a permanent vacation? In the end, much of the sorrow of dementia resides with the family and friends, and not with the patient. And, if I were to develop dementia, maybe I could prepare my family by letting them know that I’m ok with this new path in life…

Then again, maybe I’m just sleep deprived and hyper-sensitized to the issue, and need to put things in perspective:

When I had kids, I had to become a grownup. Now, that my father has passed away and my mother is barely there, I am becoming the “older” generation. Nobody ahead of me anymore. I am on deck – and I don’t even know much about sports!

Ultimately, I need to realize that there are many reasons to be forgetful and I seem to find myself in the eye of the perfect storm:

I am the mother of two small children (Sleep? What’s that?). I am caring for somebody with Alzheimer’s (not a bad reason to be a bit paranoid). I am about to turn 40 (Time to take stock!), and I am trying to be a decent wife while working from home. So, there’s a lot on my plate. And my guess is that there’s a lot on most of your plates.

Let’s be forgetful together and know that it could be for any number of reasons!