Death Part I: Ma

So we'll start off with a cheery post.  With the passing of my dear friend Jeb this week, I've been forced to confront things that I've managed to keep hidden for quite some time.  For me, it always seems easier to push things down into a dark place where I can pretend they don't exist.  Then something will happen, and I am forced to look them in the face and deal with them.  So is the case with the death of my dear mother.

Ma started having trouble with things in early 2005.  Her handwriting got shaky.  She fell down every once in a while.  She and Dad went to England for a week in March, and Dad noted that she was completely exhausted at the end of every day.  Bah, we said, it's nothing.  Just age.  She's not sleeping well, that must be it.  She needs to eat more protein, drink less coffee, exercise more.  Grandpa has a tremor, so she must be developing the same issue.  And life went on.

Then things got worse.  Her handwriting was illegible.  She fell more, and bruised easily.  She stumbled over her words; she knew what she wanted to say, but she couldn't make the words come out.  In September, her boss at the vet's office confronted her, nervous.  He told her as gently as he could that she couldn't work there anymore, because no one could read her handwriting and she could no longer answer the phone.  As much as my mother complained about her job as an office manager in a busy office, she loved to go to work and she loved to have her own money.  It was a real blow.  But we smiled and said, Ma, it'll be okay.  Just think of all of the free time you'll have!  You and Dad can do whatever you like.  You can sleep as late as you want.  She smiled and nodded.  And life went on.

She stopped driving about a month later.  Something happened when she was out driving by herself.  Dad never figured out what, because Ma wouldn't tell him.  But she stopped driving, and that was probably best for everyone.  She fell one night trying to go to the bathroom by herself, and it hurt a lot; she banged her head.  She and Dad sat on the sofa, and she cried, and he was scared.  No one had answers for us.  What was happening to Ma?  She was losing weight, even though she was eating.  Susannah asked, why doesn't Grandma talk anymore?  It's hard to explain to a three-year-old when you, as an adult, don't have the answers yourself. 

She had her first choking episode.  She choked on a brussel sprout that she tried to swallow without chewing.  She passed out, and Dad was alone with her and had to revive her.  He was on the phone with the dispatcher, screaming at my mother not to die, and she didn't.  Not that time.  The Lindenwold EMS and Police are wonderful.  They got to know my mother, which came in handy when they'd take her to the hospital.  They could explain to the ER doctors that she couldn't talk if they got there before my dad did.  How do you communicate, they asked my father, baffled.  He shrugged.  We guess what she wants; if she sighs, it's not too bad, and if she cries, it is too bad.

On Thanksgiving, Ma got her first wheelchair.  It was tough to navigate around my parents' house, a little 1940s Cape Cod, but they made do.  Dad is very handy, and he put handles and bars in the bathroom and outside the kitchen door and in the hallway.  He made little ramps so the wheelchair would go over the threshholds.  He and Andy built a ramp out back so Ma could still go out and get some fresh air.  Dad stopped leaving Ma alone around this time.  The few times he went out and left her, he might come home and find her on the floor, glass of water spilled.  Ma crying.  That's when she began to cry a lot, every day.  Dad would wake up, and she'd be crying.  She couldn't talk anymore.  Dad took her to doctors, and finally, someone gave us a diagnosis.  But it wasn't really a diagnosis, because the only way you could diagnose this disease was to do an autopsy.  But he told us it was cortico-basal ganglionic degeneration, which is a fancy way of saying that the frontal lobe of my mother's brain was shriveling and dying.  Just like her.  There's nothing you can do about it.  You just watch.  And wait.

Ma stopped walking in December.  Things got worse.  Dad was amazing.  He took such good care of her.  He made sure she was clean, fed, and most of all, loved.  We all tried, but Dad tried and worked the hardest.  His retirement wasn't supposed to be like this.  They were supposed to have fun.  Ma was only 58 years old.  Why this?  Why now?  Why Ma?

Dad called me on May 2nd, at about 9 pm.  Ma's in the hospital again.  She choked again, and it took the EMTs a while to get her breathing again, but they did.  Dad said he was going to go ahead with a feeding tube.  I said, okay, whatever you think is best.  I said I would go to work the next day and then drive over to NJ and visit Ma in the hospital.  He said that was fine, and that he'd see me tomorrow afternoon.  We said, I love you, and we hung up.

The next day was May 3rd, and it was nice out.  I skipped out of work on a long break and went to Target.  My phone rang; it was 9:30 am.  It was Dad.  That's odd, I thought.  He's calling early.  I answered, hi Dad!  How are you?

Not so good.

Why not?

Ma went into respiratory arrest this morning.  Apparently, they worked on her for about 30 minutes or so.  I guess that food that she choked on last night never came up.  There was nothing they could do.

...

Ma's dead?

Ma is dead.

I remember grabbing a bicycle rack near me, and leaning on it.  I was breathing hard.  Dad said, are you okay?  And I said, yes.  I see a bench, and I'm going to go sit on it.  And I did.  Dad said he was going to call Glenn.  I told him I would be okay.  I hung up, in a daze.  How could this be?  I mean, we knew Ma was going to die, but who thought she would die THEN?  I called Terry, and that's when I had to say it for the first time.  You always hear people saying that words got caught in their throat, and it's true, they do.  I tried to tell Terry, and it was hard, but I finally said, my mother died.  And he said, I'm coming home now.  I still had to go into Target, because I had to buy a phone charger.  The salespeople asked, how are you today?  And I said I was fine, because they didn't know that my mother had just died, and why should I burden them with that?

And so it went.  I called people, and told them.  They cried, I cried.  People collected at Dad's house, and we ordered pizza and cheesesteaks.  It's funny how you can still be hungry after someone dies.  I always expect time to stand still, life to stop for at least a little while, but it doesn't.  It just keeps marching on. 

I remember the last time I saw my Ma.  We had spent a Sunday together at Dad's house, and Susannah was there too.  Susannah thought the hospital bed was comfy, and she thought riding on Grandma's lap in the wheelchair was fun.  She would snuggle with my mother, but we had to warn her to be gentle, because Grandma was skin and bones and the least little bump was uncomfortable, if not painful.  The thing I remember the most about my last day with my mother is that she didn't cry.  I remember her sitting in her wheelchair at the dining room table, and we were getting ready to go.  I leaned down and kissed her cheek and said good-bye and told her I loved her.  And she looked at me, and she may have even attempted a smile.  But she didn't cry, and that was good.

...

So what does all this mean?  Why the mental vomit, Sal?  Because I worry, and I'm angry.  I'm angry that my mother got sick in the worst way.  I'm angry that she was so young.  I'm angry that she became so dependent on others when she was such an independent person by nature.  I worry that I will get the same thing.  I worry every time I swallow and it goes down the wrong pipe, I worry every time I trip, I worry every time I can't say what I want to say the very minute I want to say it.  I worry that I will leave Susannah motherless.  I'm angry that we still have no real answers.  And I worry because we still have no real answers.

I contacted the doctor at Penn that my mother saw once or twice.  He is a nice man, and is doing research on this rare group of diseases.  I told him I would submit to any tests he wanted to perform on me if I could help his research in any way.  I think they will be contacting me a little while.  I'm not sure I want to know, though.

Maybe I should just live my life as if I was going to die soon.  But that would be sad.  I want to live with happiness, and purpose, and joy.  Perhaps I should just live, day by day, and not worry about things I can't control.  Maybe I need to just take care of myself, and my husband, and my daughter, and my family, and my friends.  I should stop saying 'I should' all the time, and replace it with 'I will if I can' or 'I will if I want to'. 

Still so many unanswered questions.  Life doesn't come with a guide.  But even if it did, I doubt many of us would stick to it anyway.

I think what I'm looking for is not necessarily answers, but peace.  One can't have all the answers all the time.  So I just need to seek peace.  And that's what I'm going to try to do.