Saturday, April 18, 2009

Mr. Dracula, Jr., for now; and other things, loosely connected

I've been thinking about time this week, and scale.

Time is essentially meaningless to my grandmother these days, except in the narrowest of senses as she works to get through each day. There are good days, or rather good hours, unexpected by now. Sadly, at this point stumbling onto one of those elicits wonder more than anything else. They are tough to take advantage of, since they come on unpredictably, and leave just the same way. If I am on my way to class and my mom calls to say they just had a good conversation, calling grandma after class probably means she won't know who I am anymore.

And most of the time it's not even close anyway. She is forgetting people, and confusing those few she still remembers. The apartment she's lived in for the past nearly nineteen years is not familiar enough to not confuse her, and the other day she didn't know who my father was. She's known him for nearly thirty seven years now. She's confused my aunt, her younger daughter, for my mom more than a few times. She's erased generations and jumped decades.

Humans, I recently learned, have to make sense of their environment. (I don't mean colloquially-- we kinda all knew that. I mean as a scientifically demonstrable observation, shown by careful and controlled laboratory experiments.) We have an "interpreter" in our brains (located in the left hemisphere, if you care) dedicated to figuring out what's going on, or, lacking sufficient information to do that, making up a somewhat coherent story. These days, it seems, my grandmother's brain lacks sufficient information most of the time. And for some reason, the stories it makes up to compensate are not of the happy and content variety.

Her brain keeps telling her of danger, of people who want to kill her if she should remain alone in the apartment or at an unfamiliar doctor's office. Unfamiliar is terrifying, and a lot of the time even familiar becomes unfamiliar. Sometimes her home care givers are the scary ones. They mess with her medicines, or they want to take her money. She's afraid a lot. So far she always remembers my mother, and that's who she calls when she gets scared. But the things she wants my mom to do about it swing wildly and don't, usually, make a whole lot of sense.

It must be exhausting being her. Being scared so much, her body must be drenched in fight or flight hormones. Her brain must be in overdrive even if in reality it's just spinning wheels in place. I feel like talking to her when she is not all there is kinda cruel-- she can tell she is supposed to know who I am, but she doesn't, so she uses these neutrally-familiar sentences, and she and her brain work to get through the conversation. But I wonder if that doesn't just make things worse, doesn't overtax her, doesn't push her over the edge of what remains of comfort.

I think, I hope that she doesn't understand how sad her existence has become. She can't make any real plans for the future, and so doesn't have much to look forward to. If she has a doctor's appointment, she needs to be told repeatedly, to prepare her for needing to go. But not too far in advance, or she will get confused. The day before and the day of, many-many times. That's what the time has shrunk to for her.

It's not fair that she has to work so hard now, at the end of a life that was filled with loss and hard work from almost the very beginning. One day I will write about her remarkable life, but that's not the point now. I think the point is that I feel like her life, the remarkable part of it at least, is pretty much over. I feel like we are at the "make her as comfortable as possible" stage. And yet, how does one do that when what's making her uncomfortable is her brain, trying to make sense of the world?

My mother is having major surgery next week. I don't even know whether grandma knows or understands. She certainly isn't, can't be what a mother in this situation should be, what she has been most of her life. Instead, it's mom who is worried about what will happen while she is in the hospital and recovering.

We are looking at nursing homes now, in the city where she and my parents live and here, by me, too. The trick is that we need one where there is a critical mass of patients and personal speaking the Old Country language-- what gains she once made in English are long gone. If we are extremely lucky, maybe we can create a new reality for her-- one where the here and now is routine, comforting, and comfortable enough for her brain to rest.

It sucks that this is the best we can even hope for. I feel like time is circling around her, cackling at us. There are so many things I didn't get to ask. I have (and make) her hamantashen recipe, but not her gefilte fish recipe. If you think gefilte fish comes from jars-- PHE! And also HA! You are sadly mistaken. Gefilte fish used to come from my grandmother's kitchen. The I was thinking about it this Passover as I experimented with new variations on her matzabrei recipe (turned out great, btw-- you should've come over for a taste) and, with Monkey and JD enjoying hospitality of a far-away land, ate the gefilte fish straight out of a jar (without bothering to re-stew it for the somewhat significant taste improvement that would've still fallen miles away from the grandma gold standard). More than that, it's the family stories, likely gone now forever.

Time also doesn't mean diddly squat to the Cub, but in a different, much happier, way. His tummy tells him when it's time to eat. He gets cranky when he is tired and needs to sleep. It is nearly always time to smile, laugh, or giggle, and, whenever possible, it is time to grab, reach, or even butt-bounce (or otherwise locomote) over to a place from whence he can reach some objects. In order, of course, to put said objects into his mouth. DUH!

It's not that he is indifferent to people around him. He clearly knows who we are. He pretty much always turns to look at the right person if you ask him where So-and-Such is and he has a particular look of joy for us that is different than the way he looks at other people. It's just that when you are gone, you are gone. He is happy to see me when I get back from work, and, unless he is in the middle of a particularly exciting round of eat-that-toy, he is definitely up for cuddling and catching up. And when Monkey's face appeared above his car seat yesterday, bright and early, as we picked up our world travelers at the airport, the smile that bloomed on his face was of surprise, recognition, delight, and of course adoration. Take two as JD stuck his face into the back seat for his turn. But when they were gone, they were gone. He only knew that he'd missed them when he saw them again.

Time's easy on my boy, and that's a good thing. He turned eight months on Wednesday, and though of his last month JD's been gone all but five days, no adoration, no familiarity, no joy is lost. (To be fair, there were some Skype calls there, but still.)

Here's Mr.Dracula Jr. now, in all his five-toothed glory.

I took this picture last week. Wanted to preserve the effect, as I was afraid that tooth number five, upper center left, would make itself too visible and spoil the symmetry. Turns out I was right, although it's not altogether gone just yet.

But it will be, soon enough. Like the Cub's unwillingness to roll over was gone-- poof-- one sunny morning nearly four weeks ago now, when he woke up, smiled, and rolled. One way and then the other, never losing the giant grin that said-- ha, NOW I get it, this is actually pretty fun. Like his initial resistance to the whole idea of having to open his mouth to let the spoon with the cereal in. Like, I am sure, the last missing skills in the pull self up and crawl skill sets will be, alarmingly soon.

Like his heart murmur. It, too, is gone-gone-gone-gone. The fact that was cheerfully announced at our follow up this week first by the NP and then by the big shot pediatric cardiologist himself. We did all the right things, they said. Which is to say we did nothing medical, played our usual baby gymnastics games, indulged his love of swimming in the big tub, and just watched. (Doesn't seem like much doing, does it? Hence the internally cocked eyebrow and a sarcastic grunt, internal again, at the whole "did" thing.) No future follow up, they said. Not even a need to mention on any future medical form that he ever had a murmur. I nearly burst. I had been preparing myself to hear that we will need to come back in a bit for another follow up, so the unexpectedly definitive verdict packed some serious buoyancy.

And relief. Because while I played it cool, and we played gymnastics games, I had been checking on his breathing when he sleeps more than is strictly reasonable. For a normal person, that is. Before the appointment, in the (few and far between) moments when I'd allowed myself to imagine the outcome that actually came to pass, I'd thought that should we escape, I would be able to cut down on the whole sleep-time vigilance thing. In actuality if I have, it's not been by much. I'm working on it though. I know there are more layers to this, and so I am slogging along.

So I've been thinking about time and scale this week. Two years ago I was writing about being newly bereaved at a grocery store. A year ago I was talking about reverse pain olympics and wearing maternity and obsessing about making it to 20 weeks before delivering, should the baby die. This week I packed away most of the maternity clothes, and took the first flowers of the season to the cemetery. And as I am finishing writing this, I can hear on the monitor that the baby is stirring in his crib. Crazy, isn't it?


Inanna said...

Time goes all wonky when you're grieving, and even when mourning has mostly past, it seems it changes your perception of time forever.

Beth said...

I can't imagine a year from now, or even a week. But that's a measure of where I am at, and what is going on with me, not a comment on my life-interpretation skills, I suppose. I have appointments on the calendar, and Joshua just turned seven (seven!) and will be starting soccer soon. But none of it seems real enough to demand my attention. The earth keeps turning, that much I know. And yet there is never, ever, enough time. Not ever.

The mother of a dear friend of mine has dementia, and he has had to have her placed in a home, he has had to take away her legal right to make decisions for herself. It has been so very hard. She knows what he is doing, but she does not understand why. I am hoping for the best for your grandmother, and the rest of your family.

Write her story, write all you know. Do it now. Don't wait. Do it for your kids, and for theirs, and write your stories, too. Don't wait.

Wabi said...

Inanna is right, time does go wonky when you grieve. And it also gets trippy when you have little kids. Combining grief AND growing kids? Even more of a head spinner.

I'm sorry about your grandmother. Having her live somewhere a number of people speak her native tongue would be good. My grandmother lost pretty much all her English at the end of life and only spoke to us in Plattdeutsch. It made it extra hard for caregivers to relate.

Wishing your mom the best with her upcoming surgery.

Kristin said...

That was a beautifully written post. And the picture is priceless!

Karen said...

such happy news about the cub, hope you rest better & find the magically gefilte fish recipe.

k@lakly said...

So sorry about your grandmother. There is no joy or peace to be found in watching someone whither away, losing all that you knew before they are actually gone. It is another of life's very cruel lessons.
I hope she passes in peace and that her days here continue to be ones where she is surrounded and filed with thoughts and memories of things d people that she loves.
Great news about the cub!!!But I get the sleep/lack thereof vigilience. Somehow I don't think we will ever lose it. Not after...

Anonymous said...

That is one adorable baby!

I hope your mom's surgery goes well and things sort out with your grandmother.

niobe said...

Right now, the fog outside my window is so thick that all I can see is a vague, hazy grey. If you know what I mean.

red pen mama said...

My grandmother has a lot in common with your grandmother. Mine may be further along -- she doesn't seem to recall or think about anything now, although she seems to recognize my mom, her daughter. Here's a site (blog) you may find interesting:

And so fun to read about the Cub!


Lollipop Goldstein said...

First and foremost, congratulations about the murmur.

This post is beautiful, the juxtaposition of time at both ends of the spectrum. Losing my memory is one of my biggest fears, so I read about your grandmother with a lump in my throat. And yet the bliss of being a baby and not having a true sense of time or memory--that is the first time I have considered the two sides of time together. Thank you.

CLC said...

Sorry to hear about your grandma. Dementia (or whatever term you want to use) is a cruel disease. It's sad to watch the people we love lose their independence and freedom like this. And it eventually takes them back to their baby state, when everything will need to be done for them.

Beautiful picture of the cub. I can't believe he is 8 months already! Crazy how time just keeps going and you end up in a place you might have once thought was never possible.

Bon said...

i wish old age truly were a second babyhood. but instead it seems to just leave us confused, aware of the loss of something even if we no longer remember what that was. i hope you are able to find a nursing home where the Old Country language is spoken.

i love the Cub's little teeth. Josephine is currently sporting a big gappy grin just emerging - all four front top teeth came in last week.

Betty M said...

I am so sorry about your grandmother. The feelings of danger, confusion and fear must be so awful for her. Losing one's capacity to know the world is so very unfair.

The Cub is looking so lovely!

Also best wishes for your mother for her operation.

luna said...

I'm so sorry about your grandmother. you're right it must be exhausting feeling that way all the time.

the cub is just beautiful. wonderful news about the murmur!

love the juxtaposition of the two -- the continuum of life...

Snickollet said...

What a delicious chubby face that boy has!

Another beautiful post. You have such a talent for finding the common thread among experience that seem, on the surface, to be so very different one from another.

I'm sorry about your grandmother. How hard that must be for the whole family.

charmedgirl said...

what a great picture!!

sadly, what i most want to say is that the suffering of that confusion, for me, would be worse than death. my great-grandmother (who had alzheimer's) moved in with us when i was 15 and passed away about a year later. i often thought it was the cruelest disease i ever heard of. i still think it just might be.