Maternal Dementia

Once triggered, a strong memory can hover. It stays close to the surface, stretching its legs after being folded into the recesses of the past, aching to be a story that’s told again. Just a week ago I wrote a few paragraphs about a gripping period in our life, five years ago, when Short-pants had a medical crisis. I don’t mean to dwell on it, but it comes to mind again this week, with good reason.

It’s a story we try to tell enough so Short-pants can own it without shame. It’s a story we try not to tell too much, so it doesn’t become the dominant story of her life. Sometimes, when I visit her room to adjust her bedcovers while she sleeps, I trace my finger along the arced scar that crowns her head. I once told her it was a permanent tiara. I’ve heard her repeat the phrase with pride. That’s the thing about a scar; it’s a story you get to tell for the rest of your life.

Short-pants’ six-week stint in the neurosurgery ward started before Thanksgiving and spanned the holiday season. I was prepared to throw in the towel on Christmas; I had no energy to shop, decorate or enact the role of Mère Noël. But friends and family pressed the spirit of Christmas upon us. They sent gifts for the girls, optimistic that Short-pants would survive, determined that Buddy-roo wouldn’t go without the full-on holiday fuss. Our neighbors surprised us with a 6-foot Christmas pine. And there were angels – so many people sent angels. We must have received five or six hanging angel ornaments for our tree.

One angel in particular was – and still is – my favorite. It was a gift from one of De-facto’s aunts, a woman who sets a classy standard for the family, a woman who has navigated the burdens of her life with tremendous grace. The ornament is made of silver. It’s heavy in your hand, and when hung by its lace loop, pulls the bow of the tree low toward the ground. There are words engraved on one of the wings:

You must do the thing you think you cannot do. – Eleanor Roosevelt

About the time this silver angel arrived, I was at a wall. It wasn’t much fun, being a hospital mom. Every day, punching the intercom buzzer to be let in to the ICU, sitting at Short-pants’ side, worrying and wondering while trying to assure her and give her hope. At the same time staying alert to the nuances of the doctor’s throw-away comments, hounding them down to find out what and why and when. I went to the hospital every day; De-facto and I took shifts, morning and afternoon, overlapping a few hours mid-day to be there with her together. By the time Christmas was near, I was completely spent.

I remember opening the box and rubbing my fingers along the wings of the angel, touching the words, as though I might be able to physically absorb them. Isn’t it perfect how the universe knows when you’re desperate and sends you exactly the message you need to hear? I will always cherish this angel. I have a little moment with her every Christmas; I have not yet succeeded to place her on the tree without weeping.

My mother had planned to spend the holiday with us that year, so she came as scheduled, bewildered at first about how to help, but then finding her way, baking Christmas cookies, doting on Buddy-roo. The hospital was very strict about “parents only” in the ICU. Whenever friends came to support us there, they were obliged to do so from the waiting room. But on Christmas day, one of the more compassionate doctors had a word with the nurses on duty, and an exception was made.

So there was my mother sitting on one side of the hospital bed, me on the other. She reached across Short-pants’ sleeping body and rested her hand on mine. I had grown accustomed to seeing my 3-year old daughter tucked tight under the blanket, emaciated, listless, with a helmet of gauze wrapping on her head. I was used to the machines and sensors and tubes. For my mother, it was startling and disturbing. “I just don’t know how you do this every day,” she said.

I can count on one hand the times I’ve seen my mother cry. She sat across from me, wet-eyed, pained to see what we were enduring each day. “Somehow, you just do it,” I told her, “you do the thing you think you cannot do.”

These days Short-pants is fully recovered from that grim experience, immersed in her vibrant life, sometimes in the clouds, but with a well functioning intellect and imagination and a healthy emotional intelligence. My mother has relished the opportunity to watch her grow into the soulful young person that she has become.

But now I’m sitting by another hospital bed, the one that’s been set up in the study of my mother’s house, the bed in which she will be spending her last days. After a valiant contest with leukemia, an opponent that she held at bay for much longer than anyone – especially her doctors – expected, she is letting go. She will take no more treatments, no more blood transfusions. She has decided to let her life run its course.

This is hard. It’s hard to say goodbye, it’s hard to see her suffer. But I know what I must do. I will sit beside her. I will hold her hand. I will squeeze it so she knows I am there. I will hold it the way she has always held mine. I will do that thing – if I must – the thing I think I cannot do.

When Short-pants was just a little girl, she had a big story with menacing words like convulsion, coma, and emergency surgery. A massive growth in the right frontal lobe of her brain was originally diagnosed as cancer, but post-surgery lab tests gave us a break; it was just a brain abscess. Still, there were complications: a secondary infection, meningitis and persistent vomiting as a result of the nasty cocktail of intravenous antibiotics that didn’t seem to be shrinking the abscess as predicted. The MRI made it look as if it was re-forming, like the image of a hurricane gaining speed and force on a tropical weather map. A second brain operation was required to remove the abscess for good.

All hands were on deck. De-facto’s family appeared en masse and quietly took over our home, attending to Buddy-roo, organizing our lives, making sure we ate meals of substance and nourishment. My brother the doctor was on call every night to interpret the medical-speak we encountered each day. My sister, who happened to be in Viet Nam at the time, managed to inspire the Archbishop of Hanoi to put his priests to work in prayer. An e-mail tree was established; we wrote a message every night that was sent out to a few people, who sent it to other people, who sent it to more people, until a web of friends and family had the latest news about Short-pants and put us in their prayers.

We were in crisis mode. We didn’t hesitate to ask for help, and people didn’t hesitate to offer it. Perfect strangers came to our emotional and spiritual aide. Doctors who were friends of friends reviewed her dossier and offered additional opinions. We accepted anything that was given to us, without quid pro quo worries.

As awful as it was, fathoming what life would be like if she didn’t survive, or what it would be like if she did survive but with serious complications, there was also something really simplifying about it all. De-facto and I had a crystal clear sense of purpose every day: to give emotional support to our daughter, to do the medical interface, advocate for her care and to try to hold each other – and our family – together.

A crisis can produce this kind of clarity. We do what needs to be done. We make quiches, soups and casseroles. We bring blankets, we send money. Priorities become certain, we function in highly effective ways despite the lack of sleep, loss of appetite, and moments of extreme despair.

In other words, we rally.

The nightly e-mail network we branched together pales in comparison to the force and velocity of information sharing that exists today. The brute force of the Internet is staggering: a well-loved blogger has a stroke, an entire on-line community assembles to support her family, not only with words, but with money and real-time assistance. When an amazing child whom everyone read rooted for doesn’t make it, there’s an outpouring of financial and moral support from an electronically connected community. An earthquake devastates an entire country and the world rallies to offer aide. It all makes you feel good about what human beings can do.

After Short-pants was released from the hospital and well into her rehabilitation, people started to forget about our family crisis. The urgency of our news diminished; without a daily calamity to report, our update messages went from daily to weekly to monthly to rarely. Everyone returned to their regularly scheduled life, and assumed that we had, too.

Except our life was still upside-down. We were thrilled that she was home, but schlepping out to the rehab hospital three or four times a week, juggling doctor’s visits and follow-up tests as we tried to recapture our own professional schedules was wearing us out. Being careful about keeping a steady stream of attention on Buddy-roo in the midst of all this took energy, too. This was when I was most afraid that I might break down. Not in the thick of the crisis, when everyone was cradling us, when there was clarity and singularity of purpose. It was just as hard – and I had less personal stamina – when we were “out of the woods.” The crisis was over, but our lives were still far from normal.

The awkward memory of this après-crisis phenomenon was prompted by reading one of the blogs in my sidebar, Generation Y, written by a Cuban woman who has to work miracles just to get her posts on the Internet without being censored. She writes, “It especially frightens me that three months from now the suffering will no longer be a headline in any newspaper and people will have ceased to feel the urgency of the Haitian drama.” I’ve thought about that, too. We send our money and we go on about our life. What else can we do?

But I’m getting ahead of myself. The crisis in Haiti is still full-throttle, and will be for some time. Help is needed now. If you haven’t donated, here are some reputable aide organizations. (I donated here.) Or if you’re in the States, all it takes is a single text message. If you blog, here’s another creative way to raise funds. Sending $10 – the cost of two draught beers at my favorite café – will make a difference, when you consider how many millions of people are donating just that. It adds up, fast.

Just remember that the crisis may end for us when the media coverage dies down, but not for them. Whether it’s for Haiti or any other cause – the charity of your choice, or the friend across town who’s grandmother just died – it’s so important to follow up and check back in. Maybe it’s another donation, another mention, another offer to help – even just a quick hello that says you haven’t forgotten – that could mean more than we know.

Well, in fact, I know. It means everything.

Sometimes De-facto and I work together, professionally.

I’m wary about this because living, loving, and parenting together are hard enough. Adding the vocational dimension is tricky; it could put us over the 24/7 edge. He always rolls his eyes when I say this, but I think it’s important: We each need our own time and place in the sun. And honestly, we’d drive each other crazy if our careers were absolutely inextricable.

But on those occasions when we do get to team up, we do pretty well. We pass the baton back and forth and mix things up a little with our different styles. My favorite part is when he gives his little spiel about patterned thinking. It starts out something like this:

“Humans are actually hard-wired to locate, create, and sustain patterns. It’s part of our survival. The brain is a pattern-making machine.”

He goes on to support this with a little bit of scientific research, a few diagrams of the human brain and a little exercise that people always flub up because they get too caught in a pattern they think they see but isn’t really there. It’s a good set-up for raising awareness about the assumptions we make on a day-to-day basis, in order to free them up to break patterns and try to be a bit more creative. While he’s making his case for breaking patterns, he reminds us why we have them to begin with:

“The human brain uses patterns, structures or routines – cognitive scientists call these mental models – to make us more effective and efficient.”

This is the part where I usually have to leave the room or look down at the floor so I don’t laugh out loud what I’m thinking in that moment which is, “You mean all human brains except for yours.”

Ours is a relatively egalitarian household. We share chores, more or less in equal measure. We never actually sat down and divided the jobs, they just ended up falling into the hands of the one who seemed to care the most or had the aptitude for a particular task. I deal with the administration and paperwork. He is Vice-President of renting-a-car. Most mornings I get the kids up and dressed and fed. He makes the morning walk with them to school. I load the dishwasher, and he unloads it. I manage the laundry, because I’m particular about which clothes go in the dryer and which don’t. He does the grocery shopping, because he hates to waste money and prefers to buy in bulk from the The Ed, the cheap grocery store that I find too exasperating to even enter. He enjoys negotiating the best deal for produce in at the street market. While I find open markets a romantic place to look and stroll, my experience of shopping at them is agonizing.

Not that our assignments are written in indelible ink. Sometimes I pick up groceries or walk the girls to school. Sometimes he does a piece of household admin or loads the dishwasher with dirty dishes.

The loading of this appliance, I’ve found, can be satisfying. I relish getting in as many dishes as possible, whilst maintaining optimum cleaning capacity. This equilibrium is essential. Too few dishes haphazardly placed on the racks, and you run an inefficient wash, wasting money and energy. Too many dishes and they don’t get really clean, you have to leave them in for a second wash or do them by hand. You have to strike the right balance.

It’s not rocket science. Plates down below, from the side to center, big dinner and then smaller luncheon plates, followed by saucers. Coffee pot and tall glasses on the tall spokes. Pots and pans or big bowls strategically placed around these mainstays. On the top rack, café-au-lait bowls tucked under the fold-down flap on the side, allowing for shallower accessory bowls and short glasses to rest on top of them. Cups, mugs and other glasses filling up the rest of the upper rack. And in all cases, load from back to front.

Listen, I’m no neatnik. Open my closets and things fall out. I have photo albums from 2003 that haven’t been assembled. My life is filled with colorful piles and partially-finished, imaginative messes; I like a certain amount of organized disarray around me. But when it comes to the dishwasher, well, I figure my strategy saves money and helps the environment. (Honestly, I’ve reconfigured one of his loads and cleared half the space, putting off a dishwasher run for 24-hours.) But when De-facto loads the dishwasher, it makes no sense whatsoever. He has a pattern, I suppose, but it’s a rather pathetic one.

Well, you may say, his job isn’t to load the dishes, it’s to unload. But wouldn’t you think that after years of unloading a dishwasher that’s so precisely arranged, he might notice some kind of a pattern? We’ve lived together for nearly ten years. He’s probably unloaded that dishwasher at least 2,000 but probably more like 3,000 times. Wouldn’t your pattern-recognition machine pick up something?

Understanding the brain is an important step for coping with the dementia.

Quick head-nod to The Hub, where I stumbled upon this illuminating video.

This is a book I can’t wait to delve into: Welcome to Your Brain: Why You Lose Your Car Keys but Never Forget How to Drive and Other Puzzles of Everyday Life. The two neuroscientists who authored it (Sandra Aamodt and Sam Wang) claim it’s a “user’s guide for brain owners.”

I haven’t read the book yet, it’s on De-facto’s side of the bed. He’s a relentless reader, even if he’s not enjoying the book he’ll slog through it until it’s done. I’m waiting for him to finish.

Last night he read a passage to me, about researching happiness. The authors explain that with most psychological research, the answer you get depends on the question you ask.

“When women were asked to list the activities that they particularly enjoyed overall, ’spending time with my kids’ topped the list. In contrast, when other researchers asked women to describe how they felt during each of their activities the previous day, the average positive rating given to interacting with children indicated that this activity is roughly as rewarding as doing housework or answering e-mail. This finding suggests that women find their children more rewarding in theory than in practice, at least on a moment-to-moment basis.”

This is it. No matter how much you try to be the ideal, engaged parent, taking the kids to the science museum, devising creative projects with the construction paper and empty egg cartons, spontaneously suggesting fun (“hey, who wants to jump on the bed?”), the truth is that an inordinate amount of our time – most of it – is spent nudging and cajoling these small uncooperative creatures along. We’re constantly asking them to do something that they aren’t inclined to do. Please get dressed, finish your zucchini, do your homework, pick-up, wash, flush, and brush. It’s one long string of requests and commands after another. It wears you down and makes it hard to be happy about hanging out with them.

When it comes to enjoying time with your kids, you have to be proactive or else get sucked into the vortex of being a nag or a grump.

Defacto’s really smart about this. He actively seeks out activities that both he and the kids like to do. The city constructed a free ice-rink in front of the Hotel de Ville; he’s all over that. (Actually, I’m not sure if it’s because he loves to skate or because it’s free.) He gets the kids out of the house, he makes it fun for them, and he has fun himself.

I, too, try to do the things I like to do and invite my girls to appreciate the them with me. This is why one of my daughters had added “barfly” to her lengthy list of middle names. It’s also why the whole family had such a great afternoon participating my favorite winter activity: eating oysters. Check it out:

Wine casks at the Baron Rouge

The oyster feast

Buddy-Roo considers trying one

After oysters