Thursday, September 25, 2014

The Best Wedding RSVP So Far

As expected, several invited friends and family could not attend our upcoming wedding due to scheduling, distance, etc.  Of course we understand, but it's always sad when people you love can't be with you in person on the big days of your life.  But the true measure of that love has come back to us in the forms of some of the most precious RSVP messages.  My favorite one to date is the one we received from cousin Nick.

Nick and his wife, Amanda, have two daughters: Maddie, 5, and Gracie, 3.  Nick sent us an email with their regrets, adding:
Maddie saw your invitation and wondered why two brothers are getting married. And then she came to the conclusion that she and Gracie would eventually get married. Ha. We explained and we got the reaction we wanted. Like it was no bigger deal than if anyone else we know got married.

Nick, Maddie and Gracie

Tuesday, September 23, 2014

I Hate This

For completely selfish reasons, I hate what I am going through right now.  I hate what is going on and I hate that my dad's health is interfering with my wedding.  And I hate that I feel this way.

I hate that he's in the hospital and I hate that he has Alzheimer's.  I hate that he doesn't know I am getting married and I hate that he doesn't know Kevin as well as I want him to.  I hate that my dad will never meet Kevin's family.  I hate that my family is going through this and I hate that my dad's brain is no longer telling his body what to do.  And I hate that I feel this way.

I hate that I am getting married in 11 days and that I can't be absolutely giddy about it.  I hate that every time my phone rings, I am wondering if it's my mom calling to tell me that my dad has died.  I hate trying to be positive when all I feel is doom.  And I hate that I feel this way.

I hate that my family may not be able to come to my wedding.  I hate that my dad never could.  I hate that my mom feels conflicted about everything.  I hate that I am finally - FINALLY - able to marry the person I love most in the world and all this shit is happening at the same time.  And I hate that I feel this way.

I hate that I can't be back home with my family while they all sit vigil in my dad's hospital room.  I hate that the surgery his doctors could easily perform on him if he was just 35 can't happen because he's 75.  I hate that the only solution is to just wait and see what happens when I need to plan everything right now.  And I hate that I feel this way.

I hate that I don't know whether to tell the caterer that there will be 10 extra people.  I hate that Kevin spent time creating place cards that may need to be recreated.  I hate that I don't know if there will even be a wedding or if our little trip afterwards will even happen.  I hate that I don't know if I should cancel my family's hotel rooms or sacrifice a few hundred dollars.  I hate that I want my family here regardless of my dad's health.  I hate that I am feeling sorry for myself when my mom is going to eventually lose the man she's loved for almost 60 years.

I hate that my dad is dying.  I hate that my dad is dying.  I hate that it seems there is nothing anyone can do about it.  I hate that I can't help him.  I hate that I can't tell him I love him one more time and he'll hear it, let alone understand it, let alone remember it.  I hate that for my whole life he was the symbol of strength, sacrifice and dedication and now he doesn't even have enough energy to walk.  I hate that I want him to fight for life, but at the same time I just want his pain and this saga to end.  I hate that, at the same time, I am wishing for both life and death.

And I hate, hate, hate that I feel this way.

Thursday, September 18, 2014

And There It Is

The time has come for my family, or more specifically my mother, to do what has been dreaded for, in all probability, the last 53 years.  I imagine the last thing any loving couple wants to experience is the hard realization that they simply cannot care for the other any longer.  Regardless of the reason (physical, emotional, financial), no loving spouse wants to remain in the home when the other needs to live in a nursing facility.  But that's where we are, or rather where my parents are right now.

My dad's Alzheimer's has progressed to a state where he simply can no longer live at home with Mom.  His mind has been robbed of faces, names, and memories by the thousands.  And now his brain has begun to limit the signals it sends to the body to perform even the most basic of functions.  There are times when the act of walking has become too much for Dad to figure out how to do.  When asked to take a step, he says "okay" but remains in place.

I get home to see my parents about every three months.  The change I see in Dad is always more shocking for me than for my other siblings who all live within a few miles of my folks and see them on a weekly if not daily basis.  On my most recent visit, when asked who I was, Dad got my name right, but because he then asked if he was correct, it was easy to tell that he wasn't completely certain.  The time is coming when I will visit him and he will not know my name at all.  I will never be able to prepare myself enough for that.  I'll most likely fool myself into believing that he knows who I am, he just can't remember my name - the same way I forget names all the time.

Dad will now move to a nursing facility where, realistically, he will remain.  My mother, understandably, fears that she is failing him; somehow reneging on the vow she made 53 years ago.   I've pointed out to Mom that her vow was to stick by Dad through good times and bad, sickness and health.  In other words, she promised to make sure he would be comfortable and receive care - not necessarily that she would take on that task herself.  Her responsibility to him is to ensure he gets the best care possible while realizing her own mental and physical limitations.  But still, despite trying to be as compassionate as possible, and despite the guidance she's received from physicians and other caretakers, and despite all of us trying to reassure her that she is doing the absolute right thing, she tries to convince herself that she can still do it herself.  I know I would feel the same way.

I've not seen the type of love before like I see between Mom and Dad.  It somehow transcends the love that my siblings and I have for our spouses, which can't possibly compare to the dedication and devotion two people have for each other for so many years.

One of the many facets of dementia is that it takes the grief stage and turns it into a way of life.  Rather than mourning the loss of a loved one when they die, Alzheimer's demands you grieve in phases.  Alzheimer's is like a river running through a small stream that occasionally runs wild and floods, taking wildlife and vegetation from its banks and destroying forever what was once there.  Little by little, the life you know erodes in front of your eyes and no barrier can stop it, no amount of praying will end it, and no matter how hard and long we try to hold on, the person just slips away.  The only hope you can cling to is that patients don't feel pain and that they aren't screaming inside that they are aware of what's going on but no one can hear them.

Eventually we will all adapt and my mom will get into a routine of rising early each morning, doing housework, packing a lunch, then going to visit my Dad all day.  In essence, she will be living in the nursing facility too.  This will be her life now as it is, has been, and will continue to be for billions of other people until cures are found.  But for now, its happening to my dad and my mom.

And there it is.

Wednesday, September 10, 2014

Backpacks on Public Transit

A backpack bump in NYC
Since we have a car now (go, Honda Fit!) and I bike to work every day, I rarely use public transport anymore.  I've only been on the CTA a handful of times in the past 16 months - except for this morning when I took a train downtown for a meeting.  And I was surprised by the fact that still - STILL - folks have not grasped the concept of removing their backpacks when they enter a train car or bus.

First of all, backpacks are safety hazards.  I've almost lost an eye on more than one occasion, sitting next to a standing person whose wearing a backpack.  I've been whacked in the head and face several times.  I've had a person with a backpack pushing into me, seemingly oblivious to what they were doing.  My complaints have only been met with half-hearted "sorry"s and never once has my request that the backpack be removed been honored.  This morning, due to the rain, the person standing next to my seat just allowed their backpack to drip all over my lap.  And I didn't even get a "sorry" this time.

Some backpacks can add up to a foot or more to a person's depth and girth.  A well-stuffed backpack can easily take the same amount of space as another human being.  This also goes for the giant purses women are carrying these days, holding everything from pairs of shoes to yoga mats.  Space on trains and buses is valuable, especially during rush hours when everyone just wants to get to their destinations, comfort be damned.

Any confusion about the etiquette of this is inexcusable.  Hear me, people: take it off and either put it on the floor at your feet or hold it in front of you so that you are in control of it and aware of its proximity to others at all times. Fortunately, I am not the only person who recognizes that this is an issue, an issue that happens all over the country if not the world.  Requesting riders to remove backpacks or large purses should be an announcement, the same as giving up your seat for elderly passengers and expectant mothers.  It's a no-brainer.  But I guess you need a brain to figure it out yourself.