WTF Universe? Seriously. WTF.

Just when you think the only issues you have are within your own head, the universe comes up and slaps you nice and hard across the face after it has jumped out from behind a closet door and scared the crap out of you.  In the dark.  After you’ve watched one of those “the call is coming from within the house” movies.

Yeah, it’s been one of those days.

My dad now has some issues that need to be dealt with – phone calls to doctors, changes to how his medical appointments and procedures are handled – all of it falls on my plate to deal with.  And right now, it’s a lot to take on top of everything I already have going on.  My mom is gone, my kid is getting bitten at school and is possibly surpassing her peers educationally already at not even 2.5 years old, my boyfriend is starting his own business which means more responsibility is about to fall on me at home, the holidays are here and my mom isn’t…..and now this with my dad.  I’m so angry over what happened – a lot of mismanaged care happened yesterday which is unacceptable in my book, but he would never complain because that’s just not my dad.  And every time stuff like this hits the fan, I end up being feared by whatever medical professional I need to take down a notch because my parents’ health care is very important to me. Well, is for my dad and was for my mom.  I can’t say how many run in’s I have had with nurses and doctors; I’ve actually heard nurses say “uh oh, here she comes” and “oh is THAT the one” when I walk by.  But at the end of the day I don’t care what they think of me as long as they take care of him the way that he deserves to be treated.

And now, yet again this falls on me.  I’m not the oldest but I am the most responsible, for lack of a better word.  Okay so responsible isn’t it – I’m the most capable to deal with this.  My sister can’t call up a doctor’s office and tell them that what happened was unacceptable, demand answers, and actually get them.  She can’t call up a nurse’s station and demand that a doctor be paged or that the head nurse get on the phone “right now”.  That’s not her.  She’s a lot like my dad for the most part – calm.  Me?  Oh, I’m my mother’s daughter through and through.  That woman had a horrible temper; so does my dad but his fuse is much longer than mine for sure.  My primary concern at this point is his well-being and I don’t care who I have to mow down in order to get him the care that he needs.  I called the patient care office at a hospital once and raised such hell that the rest of his stay was quite perfect compared to how it was before I called; the hospital Administrator came to see him, that’s how serious they took my complaint over him being left in a hallway for 2 hours and not getting a meal.  I don’t scream or yell at anyone, but I get results and right now I really do want to yell and scream because he is what I have left.  I have one parent left and I will be damned if someone will mistreat him while I’m still able to pick up a phone and reach out to slap someone.  (Verbally, of course.)

My Thoughts on the "Assisted Suicide" Thing

I read an article on the Huffington Post about a woman whose mother had dementia and, although this was her favorite time of year, she didn’t know what time of year it was and how sad that was for this woman to watch.  All of the joy that she had experienced with her mom over the years at this time of year – skating in the park, enjoying the crisp weather, the beautiful store windows in New York as Christmas approached – all of it would never be again with her. She was slowly dying and this woman was forced to watch it happen, was forced to watch her mother turn into another person who (granted) remembered her and her siblings but wasn’t sure who her granddaughter was and who just wasn’t the person that this woman loved, admired and needed.  I can’t image that kind of pain and I am honestly happy that I don’t have to.

This week, here in the US, there has been quite the media storm about this woman on the West Coast who decided to end her own life because she had terminal brain cancer – there are handful of states that allow ending your own life with a prescribed amount of medication.  This woman was young, younger than me I believe, and was getting sicker and sicker each day. She had a choice – to die the way that many people with that disease die, which isn’t easy on anyone involved and is painful and full of medications, IVs and incoherency, or to die by her own terms peacefully.  I watched my father-in-law deteriorate from bladder cancer back in 2000 or 2001 and it was horrible. In the end he was confined to a bed in their house and was on so many pain medications he was barely conscious; when he was conscious it was confusing for him, scary for him and I think scary for anyone around him.  Many times he didn’t know where he was, didn’t know who people were, and forgot how to speak English (German was his first language).  It was a horrible death.  One that I am happy my mother did not have to endure.  When someone is faced with a diagnosis of death – which really is what it turns into – what options do you have?  There are some people that feel the ‘natural’ order of things is the right path to follow.  Take the medications and treatments, deal with the pain and indignity that can come along with all of those treatments and side-effects, and end up dying hopped up on meds either in hospice, or in a hospital having been taken off of machines like my mom, or at home with a home health nurse present.  I think that, had things been different for my mom and if she had had the option, she would have done what that young woman did.  My mom didn’t want to die the way that she did – if you really think about it, would you want to die like that? She was on machines that were keeping her alive, her body shutting down and infected due to the massive doses of antibiotics she was on to stave off pneumonia that ended up throwing off a different infection, her faculties gone, her ability to communicate gone.  I know she didn’t want to die, which is why she held on as long as she did, but there were no options left.  If she had known months or even weeks before, I think she would have at least attempted to take her own life if she had not sought out options to have it done with assistance like this woman had.  My mom’s death was nothing but sad, traumatic, and horrible for all involved.  Anyone that condemns that girl for putting herself and her family in a position of peace must not have ever sat by their loved one’s side as they took their last breath.

Another article I read compared her ‘suicide’ to that of the people that leapt to their deaths on 9/11 from the World Trade Center Towers.  Do we ever say or read that those people killed themselves, that they committed suicide?  No, we don’t.  But they were in the same situation. They knew they were going to die.  There was no way out of the buildings for them. So they had a choice – die by smoke inhalation or fire or by being crushed by the floors above them as the building fell, or jump.  I can’t say what I would have done, but I can understand and appreciate why someone would chose to die the way that they wanted to and not the way that would have just happened to them had they sat by and done nothing.  And that’s how I felt those days, sitting by my mom as the machines pumped away and we watched her blood pressure and her temperature as if any of those numbers would change her fate.  I felt like I was doing nothing, because that’s what I WAS doing.  There was nothing I could do for her but sit there and hope that somehow, she knew I was there and that she wasn’t alone.  I wish that she  had had a choice. The chance to say this is what I want.  The chance to say good-bye before her body decided it was done; the chance to see her granddaughter once more and maybe give her something to remember her grandmother by, the chance to kiss my father once more, the chance to call me “sweetheart” once more.  I would have given anything to have her pass peacefully instead of what ended up happening.  That experience was anything but peaceful and now all I can hope for is that she has found peace where ever she may be. 

Not a day goes by that I don’t miss my mom and I wish that things had been different and I wish so very much that she was still here – not for me really but for my daughter, for my dad.  I wish that we had known if just for the chance to rationalize it, make sense of it, and say good bye. I said good bye to her but I am not all that sure she heard me, and that will always be with me.

Where's My Freaking Manual??

Today, I am less than happy.  Today I’m just sad.  I’m cranky and I’m sad.  It was this time last year that my mom stopped talking to me because I was forcing her to see her cardiologist; she was also mad that I had called her primary care physician and “told” on her to him.  He only made her start taking Ensure in an effort to gain back some weight….obviously that wasn’t what she needed.  She had lost so much weight already and when she stopped eating for a week in October, it just got worse.  And although I think she knew something was wrong, she did nothing to figure out what it was or how to fix it.

It’s not that I’m sad on purpose, it really isn’t.  I started thinking about things this morning and stopped myself, said to myself “no, you can’t do this to yourself, stop making yourself cry”.  But that didn’t last very long.  It’s hard not to think about it when there are times that it feels like it was yesterday that my sister called and said “so Mom told me she isn’t talking to you right now”.  It kind of makes me laugh a little, just because that’s the perfect picture of who she was – you do something in her best interest that she didn’t agree with and she stopped talking to you for two weeks.  That was my mom.  Spiteful, stubborn to a fault, incapable of admitting that someone else was right and she was wrong.  Which sucks, especially in hindsight, because I was doing what I could to try and figure out what was wrong and she fought me tooth and nail on it.  I still wish I had pushed her harder sooner, but I think the outcome would have ended up being the same. 

I try to laugh as much as I can these days – whether it’s by tickling my 2 year old anytime she lays down and says “MOMMA tickletickletickle” while she holds up her shirt or shows you were to tickle her, or if it’s just by remembering something funny from vacation or from a recent conversation.  I’m trying to be happy, but some days it’s just too hard to fight the good fight.

I’m not sure if I’m doing this right or not, unfortunately there is no manual to this process.  But I hope that in the end, I can help someone else go through this with just a little bit of hope and a little bit of confidence in reaching the other side of it.  I haven’t gotten to the other side, and from what I’ve heard, it’s not as rough but it’s not necessarily easy; I don’t need ‘easy’.  I need to feel decent. I need things to be groovy.  I need to think of her and smile more than cry.   I just need to say I’m okay and actually mean it.

It's Been a Day

Today is just a day.  A day that has been full of mistakes and of things forgotten.  I’ve dropped things, I’ve knocked things over, I’ve forgotten important things at home.  I am preoccupied and distracted.  There are too many things swirling in my brain to really keep anything straight.  My daughter’s safety at school – it’s a few things that are compounding and concerning me, including the child that can’t seem to stop biting others and if he bites my kid again…oh there will be war, for sure.  My father’s health and well-being – that looming surgery is making me more anxious than I care to admit.  My mom.  She’s gone and I keep remembering what it was like this time last year with the fighting, the phone calls, forcing her to go to her cardiologist, her not speaking to me.  It’s hard to push those thoughts to the side.  My job – stressful, unpredictable at this point.  Myself – I’m forgetting more and more things, there is always something that I forget every single day now and I never used to be like this.  I used to be on top of everything, knew every detail, knew where everything was, never lost a thing.  Not anymore.  And I hate it.

I hate that still, the grief isolates me or at least makes me feel isolated.  I know it’s affected my relationship with Rob; thankfully he loves me no matter what and vice versa because if this relationship hadn’t already gone through hell and back a hundred times, I don’t know if this would be a storm we could weather.  This process is hard from this side of the fence, I can only imagine how hard it is to live on the other side of this some days.  Some day’s I’m just fine but others I am quite the opposite – I have a short fuse and I have a horrible attitude – and still, it continues on.  I don’t know when this part will end – the part where I’m sad, angry, lonely, desperate for understanding why this all happened the way that it did, guilty to some extent, sad.  I hope to find the light at the tunnel soon, although I know it won’t be reached before the holidays are over; if anything, the holidays have pushed me back in the proverbial tunnel and I have a further way to go to reach the light now.  And I guess part blessing, part curse is that her passing happened right after the holidays so I don’t have long to wait to go through that emotional turmoil, either.  I get to do it all in one shot.  Lucky me.

Wanting to Run

Did you ever think, just for a moment, of just getting out?  Driving away from it all, leaving all of it behind and the freedom that you would gain from walking away?  I’m sure all of us have had an opportunity at some point along the way.  I had one this weekend.  Rob and Emily were playing outside a store; he had waited on-line inside, I took her outside to play and when he came out into the cold and blustery weather he said “why don’t you get the car and when you drive around, we’ll get in”.  So I went to get the car; got in, started it up, and sat for a moment in the silence.  I was alone.  It was the first time in almost a week, and I liked it.  I thought about what it would be like to turn right instead of left.  Rob could call someone to pick them up, a cab even.  I could stop home, transfer the money from my vacation account into my checking account and drive to the airport before anyone could find me.  I could get on a plane to California, or London, and that would be it.  My life would be my own again, my decisions would be mine, I wouldn’t have to worry about this little person anymore or my dad.  I wouldn’t have to worry about losing my dad anymore because he wouldn’t exist in this new life.  See, in this new life, I would be a new person with no family and no history.  No one to care about, no one to worry about. And for a brief moment, it sounded like bliss.  But then, I thought of her little smiling face and the amazing hugs and kisses she gives me every day.  And I thought about how losing me would kill my dad.  And I thought about how hard it would be for Rob to raise her alone – if something happened to him, what would happen to her without me? 

So I turned left.  I turned left and I unlocked the doors so my family could come in.  And I was happy that they were there with me – for all the crazy yelling of my name from the backseat that seemed to not end for hours, for all of the wild thoughts in my head about my dad’s impending surgery, for all of the craziness that my significant other puts me through some times, I was happy they were there and most importantly, I was happy I was there. 

Thanks, Mom and/or Universe

To say that it was divine intervention or just pure coincidence, doesn’t matter, my vacation was absolutely perfect from beginning to end.  It was odd how perfect it was.

I got off the Turnpike, looking for the parking lot and voila it was right in front of me. I thought I would end up lost in Elizabeth (again) but I wasn’t!!  I got to the airport early, the flight – although bumpy – was uneventful and my luggage made its way to my hotel. The young woman that checked me in at the hotel was named Emily, just like my daughter and she was just lovely to talk to.  And then I got to our room.  Oh our room.  It was exactly what I had hoped for.  A full balcony, and a full view of the theme park next door and the nightly fireworks (and we could hear all of the corresponding music too).  I walked the resort – which was beyond amazing and peaceful, got free ice cream because of my “happy birthday” pin.  I soaked up the solitude and happiness.  We went to the parks, we ate, we drank, we met lovely people.  Our meals were great, the company was great, I was relaxed 100% for the first time in at least a year if not more.  It was phenomenal.

I found a toy sword behind the curtains to the balcony, as I was searching for a light switch to turn out the outside light (I never did find that switch).  It was propped up in the corner and was a pirate’s sword.  My daughter LOVES Jake and the Never land Pirates.  LOVES THEM.  And here was this sword, just sitting in the corner as if it was left there on purpose for me to discover.

At least once, as I walked the resort alone one night, I felt like maybe my mom was with me and had something to do with how perfect this vacation was.  I thanked her, and I think I thanked the universe just in case, because this was my birthday re-do; my actual birthday was horrible and hellish so this was a chance to actually celebrate and be happy.  And I was.  And for some reason, somewhere inside, I felt like it was her somehow manipulating things and putting me in the right place at the right time so that I would have a good time and not think of anything but where we were getting our next meal or our next cocktail.  Last year was so stressful at this time; if you’ve ever had a parent or loved one start to get mysteriously ill and have pain that can’t be explained away easily, you know what I’m talking about.  My life changed, and continued to change until she was no longer here and I know that I won’t ever be the same again; my life will never go back to the ‘normal’ that it once was.  Every day for the past year or so I have been stressed on some level – not that I am no longer stressed at all, I think I would also have to depart this life in order for that to happen – but every day has included some worry about someone’s health or well-being.  But for those brief 5 days, I was worry and stress-free and it was glorious.

So again today, I say thank you to my mom, where ever she may be.  I hope that it was her that made it as perfect as it could be, so that in some way I had a happy birthday.  If it was her, she did a great job and I hope she knows how happy I was and how relaxed I was (for once) and I hope she knows how grateful I am for it.  I think I needed that rest and relaxation more so than I realized and even today, I am happier for that blissful stress-free time away.  And if it wasn’t her, well, let’s just say it was her and leave it at that.  Makes me feel better that way.

Monty Python was right but still....

“Always look on the bright side of life” is the title and a line from one of the best Monty Python songs ever made.  And on a day like today, I think I should try to sing it on repeat all day long.  I woke up grumpy, for a number of reasons – many of which are in my head, but regardless of what they are I am grumpy and I really do need to stop.

I can’t stop thinking about the holidays and how much I wish she was here.  This morning I thought how amazing it would be if, at some point on Thanksgiving, I walked into the kitchen and saw her standing at the stove and she turned around and said “hi sweetheart” like she always did.  What I would give for that to happen just one more time.  it’s amazing how, little moments like that, mean so much when that other person is gone. I would give anything to see her in that kitchen again, even if she was cursing at me for getting in her way.  Back then, when she was “okay” and she did stuff like that, it pissed me off – although I will admit that sometimes, her frustration was pretty funny and my dad would joke about it behind her back (where she couldn’t see or hear him).  But now, it would make me smile no matter what.  I would give anything to hear her bitch about all the work she does for Thanksgiving or Christmas and how no one helps her – even though we offered every year and last year was the only time she took us up on it.  I would give anything to hear her complain about the pot that ‘danced’ on the stove when it got hot.  I would give anything to hear her voice again, to see her again.  And I don’t know how to stop thinking about it.

I know that this will get easier; next year will be easier than this year – assuming of course that I still have my dad at the holidays next year (something else I think about probably too much than I should).  But it’s hard to focus on what’s to come that’s positive because all I feel is sad when I think about her, the holidays, etc. I don’t feel hopeful; it’s hard to feel hopeful when someone has died.  What do you hope for??  Happiness for yourself seems selfish, especially in my situation given what happened to my mom.  I know that I have to be strong for my dad, at least on the outside; it’s a skill I’ve mastered at this point in my life.  I’ve done this so many times I can do it without thinking, the switch just turns on and I look like I’m handling the weight of the world without breaking a sweat.  It’s when I get in my car that I fall apart; it’s when I’m alone and can feel for myself that I lose it.