Too much for words - Part Three

OK - Here it comes.  The final chapter of this WAAAAYYY too long post.
For those of you just joining in the drama now, you can read part one here and part two here.  

I promise to be more upbeat in the next few posts to make up for these last few.

Thanks for reading & not unfollowing me during this rant :)
Here goes.

When I started to realize that I couldn't continue to live my life based on the doctor's (inaccurate)predictions for his life, I basically tried to have a little bit of my normal life (summer)back. But every time I did anything that was out of the city (D and I are big into camping and usually go on at least 5-6 trips per summer) I felt this horrible pit in my stomach like I should be by his side.  So I resolved to spend as much time there as I could.  I was not in the greatest state health wise myself, was waiting for my laproscopy in July, but I tried to get there at least 4-5 times a week.  I'd bring my guitar and play and sing for him.  At first he really seemed to like it.

Then I had to take several weeks off due to my laproscopy. And the pain didn't really get any better even after they removed the endo.  I started getting back into the habit of going there as often as possible, carrying my guitar on the bus despite the pain I was in.

And then he started expressing that he wasn't enjoying my little concerts anymore. And I started getting back the feelings of resentment that I had felt towards him in my youth.  Those feelings didn't just come from his criticism of me though.  I started realizing the my mother is pretty much not available to me EVER anymore because she stays by his side for 10-12 hours a day (despite the fact that she has MS and should be trying to preserve her energy).  She has become completely one track minded, and although I understand that he is her brother, and her baby brother at that, I just really think that she needs some perspective on the whole situation.

My mom got a little does of reality a few months ago.  One of her 'friends' decided to turn against her and started telling my uncle that my mother is trying to kill him (this was shortly after he was moved into palliative care). She caused a HUGE drama, which I won't get into, but I'll just say that my uncle basically spat on my parents, who had been his sole care-givers and his power of attorney since this all started, and said that he was revoking their rights, closed the accounts that my mom was using for funding his care, and accused my father (who lovingly shaved and fed him daily, and kept track of his finances, paid his bills etcetc) of stealing money from his account.

For a few weeks I was the rational one in the family, saying that he is sick and that's why he's so easily misled by this 'friend' of my mom's .  But deep down I thought that this separation was good.  My parents realized that they had been going waaaaayyy overboard, and that they needed to take a step back and start living their own lives again.   At one point during this time period I said to my mom,"Do you believe that if the situations were reversed that your brother would give up HIS WHOLE LIFE to stay by your bedside?"  She responded, "I know he would not."

She has literally given up on calling back her friends, going out for lunch with her daughter, rarely joins the family for meals, stopped talking to her daughter about anything other than his illness, stopped talking to anyone about anything other than his illness.  My father, who has his own bag of issues as well, spends all day at work and then shleps down to the hospital daily to feed him dinner.  Because my mother does not believe that the hospital can care for him adequately.  Nor does she believe that any of the caregivers they have interviewed can do a good enough job.

All that would be fine(ish), except for the fact that my mom pretty much expects me to feel the same way she does.   She makes me feel like I am a bad person because I'm continuing on with my life and not spending every minute thinking about this horribly bad and sad situation.  She appears to think that the pain that I have almost every day of my life is not justification enough to stay away.  And she also gives the perception that she feels I am being heartless, cold and invalid in my feelings about the past.

It may seem that way - and I'm the first to admit my flaws - but I really am having a hard time seeing a good outcome of me getting close to him now that he is on his death bed. The fact that he wants to become a good uncle now is a sweet sentiment, but unfortunately I'm too jaded. As usual. And I'm too scared to get close to him now as well.  I'm too scared of the feeling, the void, it will leave when he passes.

And so, I stay away.  I do a weekly visit, stay a short time, and allow D to deflect attention from me by monopolizing the conversation.  But the phone calls from my mom telling me about how he's sorry about the past etc etc, those are starting to get to me anyways.

I have never gotten along trendously well with my mom, but I miss the normal kind of not getting along.

This guilt-trip, overstressed, overtired, overworked kind of not getting along is too much for me.  And so I avoid.  Whenever I can.

That was my point - here comes the latest case:
This is what I wrote after the last time I went down there (last Sunday).

Yesterday I went down to see my uncle,  feeling like total shit, nauseous, dizzy, the whole works. D started complaining about the whole ordeal as well (I guess he's sick of being a deflector for me) and then we got there and there was no parking...

So I called my Dad to ask if my uncle was even awake, if I should shelp my ass from a  street parking spot on the other side of the world too come there. His cell was off.  I couldn't remember the extention # for the hospital room. So I called my mom.

She immediately started with attitude. I don't know why. She answered the phone sounding sweet and then switched to sour when she heard it was me. Great. Told her my dilemma.  Asked her to call Dad & tell him to call me.  She refused to even hear what I said and kept insisting that there must be parking and that I am just not looking hard enough.  Then told me I couldn't find parking because I "always insist on going there at the worst times". I was getting annoyed. I asked for the number myself so I could call. She spat it out at me and then hung up.  Great.

I called the room.  No answer.  No answer on Dad's cell still.  Called my mom again.
Her suggestion. 
"Why don't you ask D to drop you off and circle around until he finds parking".
"I'm dizzy mom. I don't want to walk alone through the hospital. I want him to be with me or even better push me in a chair." (I also don't wanna make him my hired chauffeur.)
"Hrmph... I see. "
I'm not feeling well. I don't know what else to say to her. I sit in silence.
"I know you can find parking. Just keep looking okay?"
"Fine. I'll look a while longer. If I can't find it I'm going home."
"Bye." Click. She hung up on my again.

So now, I just really really don't wanna go in at all. I want my bed. I want my duvet. I want to maintain my sanity.

BUT I try anyways.

"D? Can you drop me off at the door and then shlep back alone from the street parking spot on the other side of the world"  Cringe.
Squeeling tires out of store parking we were sitting in, and now pulling up beside  side door to hospital. I get up out of the car & as I stood up this bolt of lighting type pain hit my right ovary.  I puked all over myself, the sidewalk, and a bit onto an old lady's shoe.
Luckily I hadn't moved away from the van.  I plonked back down into my seat, pulled my pukey scarf off my neck & literally threw it in the garbage (D is a reflex puker. He sees/smells it, he pukes. I was so not in the mood for that)
And we came home.

What do you think my mom said this morning when I told her what happened and why I wasn't answer my phone all evening when they were obsessively calling and calling?
"Your father was looking all over for you. You should have called him or went to found him. He could have helped."

Helped what... helped me puke? I can handle that on my own thankyouverymuch.

Anyhow. That's the story. And the reason I 'wimped' out this time.



BUT  - Tomorrow is Sunday. I am going to try again.

Too much for words - Part two

Hello my faithful followers,
Here is part two.... for those of you who missed part one - you can read it here.

I'm new at this blogging thing, and am trying to make my posts "flow" together as well as possible, but this is my first time doing a multi-part post, so bare with me if it's a bit lumpy.

So I had just started telling you all about how my uncle and I were starting to get closer and realize some of our similarities in hobbies/talents.

We performed together at a tribute to Slovak Jewish Poetry (I sang, he played the guitar) I also tried to become a bit involved in the theater that he, my parents and their friends were involved in.  I started to loosen up around him.  I tried to help him decorate his new condo - even though my decorating guru's and teachers told me to never work for family (and they were right; that was a slightly trying experience... We spent 6 hours at IKEA picking out window treatments for his bedroom, only to have him return them the next day because they just weren't 'right'. Much more frustrating because I hadn't charged by the hour due to the fact that he is family)

He seemed to start trying too at this point.  He started living his life. His new condo was the first normal thing he had done in a long time.  Before, he had been living an eccentrically "bare" life. Void of ALL things material. Even though he had more than enough money (he's very intelligent and makes good money) he lived in a crappy apartment, never bought himself any 'luxury' items (ie. FURNITURE! A BED!?!?). Even to this day, his 'new'(8 months) condo has only a bed frame and mattress pad(I have NO clue how he slept like that) with some drawers & a dining room table & chairs. No couch. No rugs. Nothing on the walls.  And he seemed to really not mind. He began to reach out to my mom again, through the poetry and the theater, I got involved too and enjoyed working with him on his amazing songs.  I will upload some soon so you can hear.  It's not in english but still quite beautiful melodically. His poetry is unlike anything I have ever heard.  He's actually writing a song right now (about me... flattered but don't know how to handle the emotion, as usual).  The lyrics are amazing. His brain works a very interesting way, even now in his weakened state. He's a total free spirit and very spiritually gifted.  I have always (even through the hard times) admired that in him.

And here came the biggest fail our little family has experienced to date.  He was in Slovakia with the theater group preforming their latest production. This was the trip of a lifetime - him and his sister together in their homeland again. And they were also traveling to Israel together for the play. This was a huge deal for them all. My parents have not been back to Israel since the summer of 1968 when the Russians occupied Czechoslovakia while they were there on a summer student trip and they were not allowed to return home. (That story is actually what the play that they were there to perform was based on.) This was an amazing experience for them to share.  But tragedy struck - they were out for a group meal and he fainted.  He was taken to the hospital where they diagnosed him with Glioblastoma. Then he was flown home, and I was "the only family he had"(my mom's words) in Canada, so I tried to help organize his medical stuff.  But he pushed me away, and told me, not to visit him in the hospital.  I mostly ignored him and went anyways for the most part but it was hard.  The hospital had the audacity to send him home after a day or two of observation.  And he fainted again.  And this time he never got back up.

My parents stayed to finish the rest of the theater's tour, and came home a few weeks later, and his condition got really bad for a while. My mom never saw him standing again after that.   For about 2 months the doctors were telling us he only had 24-48 hours to live.  It was really insane.  That went on for a while, but then he started to get more stable.

This was the start of the summer. His condition has since stabilized considerably.  Meaning, he is still dying, he is still completely paralyzed on the left side of his body, but there is no "deadline" now.
As horrible as it sounds, it is almost harder this way.  He is not living right now.  He's a beautiful mind stuck in a useless body. And he's starting to not realize that - his mind is refusing to admit that his body doesn't serve him anymore.

Part three coming tomorrow. 

Too much for words - Part one

Before you start reading this post, I ask that you please get into your most non-judgemental  state of mind.  I will be bringing up topics that are sensitive and hard for me to talk about and face. I actually wrote this three nights ago and have been battling with myself about posting it since then.  I have decided it's better to let things out than keep them in.

I have a really bad habit that I was hoping to break this year.

I avoid things that are too emotionally difficult for me.
Things that I should not be avoiding.
And I do it much more often lately because when I am physically sore I feel like I can't handle almost anything emotionally.
It makes me feel pathetic.

Because this is such a difficult (and long!) topic for me to write about, I'll split it up into parts over the next few days.

This post topic started with my feelings of  guilt surrounding my recent decline in visits to my uncle who has been in the hospital since June 2009.
He is dying of Stage 4 Glioblastoma (Brain Cancer).
He asks for me all the time (reported to me daily by my mom)

I thought it may help me to understand my recent reluctance to go there if I blogged about it (and got some advice from my readers?)


Before you decide that I'm heartless, judge me and sentence me to a life (and afterlife?)of living with guilt - I'll give you some background info.

My uncle moved to Canada when I was 11 years old.  Prior to this, I had been a happy-go-lucky girl, the revered (adopted)only child, and I think that at that point I still liked it. The world as I knew it revolved around me.  There were pleasant afternoons at the art gallery, zoo, harbourfront... But my little world changed drastically when my uncle came to live with us.  No longer was I the center of attention, and although I grew to appreciate the tiny bit of extra freedom that came with that, the arguments and disquiet that it brought to my home was not enough incentive to make it good.

My mom had raised him until he was around 10 or 11 years old and then she immigrated to Canada (from the former Czechoslovakia).She had been pretty much his sole care giver before leaving, as my grandma was sick and in the hospital or away for respite care for much of my uncle's young life.  My mom therefore has always kind of thought of my uncle as childlike, almost as if he and I were brother and sister, rather than uncle and niece.  Which meant, in theory, that I now had to share my mother with a much older (and comlpletely ADULT) brother - who, despite his age, acted like a sullen and resentful teen.

I am still not sure how I feel about that dynamic, but nonetheless, it is/was the way it is/ will be, and so I will explain my dilemmas in relation to that reality.

When I was growing up, in particular when he was first getting used to life in Canada, life was hectic.  There were arguments, there was resentment. There were a lot of things happening in my sheltered little life all of a sudden.  And then he disapeared for a few years. Completely gone from my life, from my mom's life, from our family's life.

And then he was back.
 (this part is all very abridged and vague, but I'm just trying to cover basics. If anyone, for whatever strange reason, is extremely intrigued by this dynamic leave me a comment and I'll write a post about that alone. It's too vast for this story. Which is already too long for it's own good.)

I love my uncle, but I have never really had a relationship with him. I mean, when I was really little and we were visiting Czechoslovakia he played with me and carried me around everywhere... but that was pre-immigration, and things changed so much during that time.

 We had just started getting to know one another before all of this tragic stuff started   If anything, I had once associated a lot of resentment and bitterness with him.  I was constantly reminded of all the times he asked if we could "move" a Jewish holiday because he already had plans with friends that night. Or move a birthday, aniversary, graduation celebration because it didn't fit in with his schedule. He missed countless birthdays, only putting a "sorry it's belated" card in the mail. In the mail. ( even though we live in the same city).And though there was always a little gift of money, and sometimes even a lot, I never felt a connection.  I felt he was doing it because my mother expected him to - not because he really cared.

As of late I have tried to get past all of these things because he's my uncle, because it is important to my mother, and because we seemed to in fact have some things in common. And I'm getting older and starting to really realize that in families sometimes the younger person winds up being the bigger, more mature person.

But lately I'm not doing so well at it.  And this time of need is exactly when I should be doing well at it and being there to support my mom.  But there are things holding me back.

Anyhow, I think that is enough for part one.  Check back tomorrow for part two.  I'll talk more about the time right before he got sick and explain some of my more recent discoveries about our similarities, differences and why I think I'm pulling back.