Revoir ma reine

Below is what I wrote this morning but did not get a chance to post. Since writing this my dear grandmother has left us. I want to believe the speed of her departure means her physical suffering was brief. I will miss her terribly.

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A missed call from my mother this morning followed by a text that read: call me when you get a chance. I dialed immediately and heard the news I was dreading. My grandmother is not doing well, "taken a turn for the worse" is how the nurse that called my mother described it.

I am in Long Island this weekend and my first instinct is to drive upstate. My mom kindly reminded me that this knee jerk reaction would not be supported by grandmother. She would want me to do all the things I had planned already to do with the kids today. A fair in a nearby town, a salamander hunt tonight with a local museum, a late night movie. She has always, since I had children, emphasized her desire for me to always put them first.

I will get an update from my mom later today when she visits my grandmother after work. Based on this report, I will take the train up tomorrow or Monday. My fear is not that she will die, that is inevitable. My fear is that she will spend the remainder of her life before she dies in pain and that her Alzheimer's will take over completely and she will die surrounded by family, but still alone.

Wishing for her peace and a painless journey to the other side, when ever that might be.

9/11/2015

The train was just a little quieter this morning, the way it was in the days and weeks that followed the towers falling, all of late September of 2001 was quiet. Even when Letterman came back on the air, and held our collective hand, and let us know we would indeed laugh again, that our broken hearts would one day heal, it was still quiet.

The man across from me on the train had a tie on with the towers on it and an eagle and a boat the looked like Columbus was sailing it. It made me want to laugh. And cry.

Reading Flannery O'Connor this morning, standing, swaying with motions of the train, I found a few lines that felt so appropriate for today.

"The way things happened, one thing after another, it seemed like time went by so fast you couldn't tell if you were young or old."

Karla

How do you say goodbye to your mother? The person whose love was unconditional, whose advice was unsolicited, whose knowledge of life was underestimated by you for so long, til you grew up and had your own children and saw how wise and fearless and kind she truly was.

Two years ago my friends had to do just that. Their mother, the mother to so many, her own children and dozens of foster children over several decades, took her last breath. Cancer is a nasty, unfair, unrelenting disease that she fought against as good as anyone ever had.  She was brave and strong and able to hang on so much longer than any doctor thought possible. She was a miracle.

Karla Scherne was many things to many people, but to me she was always the lady who lived up the street who was there, in my house, with my mother and my grandmother, the night I was born in the middle of a blizzard. She let me come into her house, eat her food, borrow her movies, swim in her pool, be in her life. She was one of the good ones, one of the very special. We lost an amazing woman two years ago today. If I close my eyes, I think I can hear her sewing machine humming away in heaven.

Not over yet

I wrote the section below a few weeks ago after a particularly difficult time for my grandmother and decided not to post it. Two days after writing it I visited her and it was so bad I didn't even want to write about it, which was a first for me. And then this week I went to see her, and much to my surprise, she was doing better. It is difficult to put into context how much better she is doing unless you understand how she was not too long ago. Yes, she still has Alzheimer's and is, quicker than I'd like, losing most of her memory, but she is also still fighting to hang on, and that is worth remembering.

Written on August 7, 8pm:

I think it is all going to be over soon.

The last chapter is being written in the very long, sometimes sad, often funny, story of my grandmother's life. She is currently retaining water at an alarming rate. She is on antibiotics for an infection and is having congestive heart failure. She is the least healthy she's been since being diagnosed with Alzheimers.

I feel sad as always I suppose, for her and for my mother and for what I'm soon to lose, what I've already lost, all of the intangible love that I feel for her that she can no longer comprehend. And on some level, relief I guess, that she might soon be at peace. And then, when I imagine a world in which she no longer exists, I feel panic, at her death and what that means, the deeper meaning that one day my mother will die and I will die and suddenly I'm in a morbid death spiral and the world is ending.

I haven’t seen her in a month, by far the longest I’ve gone without seeing her in the past few years.  The possibility of her not recognizing me when I see her this Sunday is very real, and yet, I am not afraid. I am anxious to see her, hoping for the best but preparing myself for a very different woman to be waiting for me.

Weeks and weeks

This is where I am.

I am acknowledging that I am visiting my grandmother less. Every week has turned into every other week and now more like every third week. It is the summer and the majority of my days from now til September will be spent at our little house at the beach, a place my grandmother got to visit once, shortly after we'd bought it when we rather ambitiously thought to have Thanksgiving for 16 people. It was a comedy of errors. Ran out of heating oil so the house was cold, no hot water, one fridge stopped working, dishwasher broke. I think we finally got the heat on, but it didn't matter. We did it, had our first grown up Thanksgiving with three kids and our friends and our families. And importantly for me, my grandma. I remember during dessert I sat down with her and had her sign all of the paperwork I had for her for the senior apartment complex we were moving her to a few weeks later. I was so hopeful for that move. She lasted less than nine months there.

The move to a new apartment shined a spotlight on her disease. She could no longer hide behind memorized movements and habitual living. She was unable to manage the simplest tasks, like remembering to eat the food we stocked her refrigerator with. She was extremely resistant to bathing, even when she'd promise to let me the night before a visit, by the next day she would dig in and the bath would never happen.

A fall landed her in the hospital and then a surgery made rehab necessary. It was from that facility that she was moved to the nursing home. She never went back to her apartment again. She didn't pack any of her things. One day she was there, in the two bedroom apartment with oddly furnished rooms, and the next day she was gone, never to return. In one room a bed she never slept in, favoring a recliner chair instead, and in the other room a desk that she was unable to pay bills at. She was such a watered down version of herself. And I was too inexperienced with Alzheimer's to really grasp just how much worse it would get.

In the almost two years she's been at the nursing home she has changed dramatically.  The visits lately have become more difficult for me. It is hard to talk with her. She is less unhappy than she was, but now she is duller, more ambivalent about everything. Her motor skills have declined as has her speech, her ability to feed herself and her memory. All of this is expected, but that doesn't make it any less painful to watch it unfold.

I will visit her in exactly ten days from today. I will ask her questions about Thanksgivings from years ago, the ones she presided over with enormous turkeys and a dozen side dishes and an unbelievable amount of pies. She was an excellent cook and knew how to time out a dinner for a large group perfectly. One day I will throw a Thanksgiving as lovely as hers.

til the very end

Yesterday was one of those visits with my grandmother that reminded me: this disease is progressive, it never gets better and it’s my job to find something good, even on the bad days. 

We sat outside for most of our hour long visit. I feel guilty that all I am able to give her is one hour every other week. She deserves more from me than that. Traffic was really bad and I was in the car for five hours roundtrip to make that hour visit happen. And while I am driving, I think of the other things I should also be doing in that time: working, seeing my mother, cleaning my house, answering emails, cutting my dog’s nails, writing. Writing always seems to be last on the list.

She was happy to sit outside and snack on the croissant and fruit salad I had brought for her and soak up the sun. Before we went outside, I had to run to her room. I left her in her wheelchair in the hallway with strict instructions to not move while I was gone.  I placed a potted plant, some black licorice and a picture of the kids on her window sill.  I knew by the time she saw them after lunch, an hour after I’d gone, that she would very likely not know who they were from. And that’s okay with me.  I’m more concerned that she enjoy them than recall where they came from.

On this visit I found her confused, but calmer and less agitated than usual.  When I entered the activities room to collect her and take her outside, she stared at me for a very long time before registering who I was. It is always my biggest fear, that day when I arrive and it never registers who I am.  The day I become just another kind stranger that enters her room and knows her name and brings her a danish.  That day is coming. Or she will die first. Those are the only two options that Alzheimers has left us with.

Back home last night I found myself thinking about my dad a lot, a person that, despite struggling with and dying from drug addiction when I was three, my grandmother has not ever had a bad word to say about. And if you know my grandmother, a woman who never has been one to hold back telling you her opinion on anything, you would know how remarkable that was. And how it speaks volumes about the character of my father and my grandmother’s unexpected capacity to love. My grandmother’s life has been in excess of fifty years longer than my father’s was. My brain has a hard time computing that, knowing all the children and grandchildren and great grandchildren that my grandmother has experienced, and knowing that my father missed out on all of that. 

For a (thankfully) brief period around the age of twelve I held to the fantasy that my father was not really dead. I imagined that he was alive and living in Paris and one day I would see him. I think I’d heard a story about someone thinking Jim Morrison wasn’t really dead and I applied that to my dad. Grief comes in all shapes and sizes and changes as time goes by.  The grief I have experienced in losing my grandmother little by slowly has also changed as the months and now years have passed.  I am trying to be present and to not grieve for something I have not yet lost. She is still here and there is still life left in her and I plan on enjoying all she has to offer until the very end. 

Shadows

You can live your whole life as one person and die as another. As a shadow.  My grandmother is alive, but so many parts of her are gone and will never return. I fear one day I will enter her room and we will be strangers to each other. That she will be the shadow.

Yesterday was one of those visits where I played the role of observer, sitting back while my mother and children interacted with my grandmother.  I had to search her room for a deck of cards that should have been easy to find and was frustrated at the state of her room. She keeps packing up her belongings, putting everything in shopping bags and tying up the top, convinced that she's going home soon. I bought her CDs to listen to and instead they are in a box, with crossword puzzles she can no longer do and magazines she doesn't read. I eventually found the cards and watched as my grandmother and my oldest daughter played two handed solitaire, like watching myself play with her twenty five years ago. 

I have paused recently on coming to this space to write and instead have begun to explore writing fiction, cautiously following a dream I didn't, til recently, even know that I had. I only really began writing two years ago as a way to deal with what was happening to my grandmother. Watching a friend of mine write her way through her mother's battle with cancer, dealing with the very stark reality of her mother's death, navigating hospice, coming to terms with her own mortality. She was incredibly honest with her feelings and I knew if I was going to write, I'd need to do the same.  That is what I've tried to achieve here for the past almost two years, balancing a respect for my grandmother's privacy with my need to share my experience. More often than not the things I've shared have been sad and unpleasant and uncomfortable. And completely honest. 

I have never lost someone like this before, so slowly, so piece by piece. I often have the urge to tell the nurses how amazing she was, how before landing in the land of soft chicken and adult diapers, she cooked three hot meals a day, she sewed me shorts without a pattern, she laid in bed with my grandpa and listened to the Mets lose on the radio. They have no idea that she was a force to be reckoned with. They will never know how crisply she made a bed or how perfectly she folded towels.   She is now just another patient that they wheel to lunch and dress in the morning. My grandmother is the ghost of who she used to be, she haunts her own memories.