Monday, April 15, 2013

In the Waiting

Dad is still in the hospital and we are waiting, just waiting.  Over the weekend I re-read Dad's Living Will/Advanced Health Care Directives.  I cried.  Last time I read it, I got choked up and put it away.  There is no putting it away until I can handle it, ready or not, the time might just be now.

Should he be deemed terminal or comatose by two physicians, Dad wishes for no food or fluids to be administered.  At this point, the legal determination has not been made as we waited over the weekend for his regular doctor to return.

Right now we're paying $150 a day to keep Dad's private room at rehab, and, we'll still be paying his rent at his assisted living community until direction is found soon.  This is clearly just for a season.  Fortunately Dad has good health coverage through his previous employer and that will help only with the hospital bills.  That's a huge godsend.  Everything else is out of Dad's pocket.

Dad's doctor over the weekend told me they have given Dad some fluids, not much.  They have not given him any nutrition at this point.  The Cardiologist signed off, Dad's heart is STILL good.  

So we wait.

My Sister-in-Law's Mom called, I have not spoken with her in years.  She has dealt this kind of stuff with her own family and is now taking care of their elderly neighbor.  She walked me through some of this journey and suggested I ask the doctors for clear instructions about what the next step will be.

She did well to calm my fears and guilt about not being there.  Up to that point I was ready to bolt (fight or flight).  She said sometimes we can be of better use where we are.  That sunk in.  I am the one on the paperwork end of things, and would need to take my computer, all Dad's files, find some place to stay out there, deal with the traffic, the difficult emotional side of this and still try to function well with a TBI. 

She helped me see the benefit of those who are in this line of work of elder care and hospice to allow them to do the loving and caring support they're called to do.  It was a very beneficial hour conversation from someone I would actually listen to, who doesn't tell you what to do, and, she is probably one of the sweetest and yet most authentic, people I've ever met. 

She also mentioned how at the beginning of each day we get a budget of energy to work with.  I laughed and said, "Welcome to my world!"  I told her I still have about 4 good hours to get everything done I need to in each day.  Just hearing these words from someone who relates helped to melt the jagged edge of guilt, helplessness, regret, and self-imposed pressure.  Her  husband had a TBI years ago, shortly after my TBI...he and I used to compare notes about this crazy new invisible world we lived in.

She also spoke of the difficulty of maintaining two separate households, two separate bill paying systems, dealing with mail, and all the paperwork.  It is a lot to handle.

So for now, I stay.  I am the hospital point of contact now, my Dad's ex-wife was removed as she's sick with Shingles and doesn't need that stress and overwhelm of being the first person called.

Naturally, it is difficult to take care of myself at this time, I am trying though, TBI requires high maintenance anyway.  There's a lot to this situation I cannot change, so rest when I can, but also, I don't feel bad for not being able to.  It's hard to sleep anyway, but with this, even more so. I've spent an inordinate amount of time staring wide-eyed at my digital clock watching the minutes tick away. 

The opportunity to catch up with naps during the day hasn't quite been there.  I lie down out of exhaustion, but the phone rings and I can't ignore it.  I know this, too, is for a season and I'm okay with it. 

This all feels overwhelming, scary, it brings up a lot of issues laid to rest and yet we have to just wait.  I try to learn to let the feelings stay, to accept the discomfort.  This is just not meant to be an easy process and I am even okay with that...and trying to be okay with the waiting.

I know, without the shadow of a doubt, I don't want to die like this.  I don't want to put anyone I know through this, the anguish is huge, nearly unbearable at times. 

Friday, April 12, 2013

It's Fried-day!

It has been a long week with Dad going from rehab back to the hospital to rehab and back to the hospital again.  As of this moment, he has been in ER all morning, having just gone back to rehab yesterday afternoon!  I spoke with his nurse just about an hour ago.

It’s seizures again (not sure why he’s having seizures only at rehab and not at the hospital), no one knows what’s causing them.  Dad is able to move all extremities, open his eyes, but he is not responding to questions.

He is very restless when he does wake, he’s on Valium and is sleepy, but when he wakes, he tries putting his feet off the side of the bed and starts pulling at things.  They expect to move him out of the ER sometime today, they’ve run all sorts of tests and everything is normal or in the good range.

Reluctant Heart brother has needed to call the Attorney to update Dad’s Will and documents for quite a long time, despite serious urgings.  Of the four of us adult children it goes without saying, we know three of the four of us have Dad’s best interests at heart.  Rebel Heart is the one outstanding…so, we will see how this plays out.

I emailed the Attorney letting him know what’s going on with Dad.  I asked if Dad’s current will would be void because Dad wrote on it, dated it and initialed it but never made legal changes, he said a judge would have to decide that.  But, in the event it is invalid, state laws mandate the estate would then pass to his children.  That was a welcome relief…hopefully meaning Rebel Heart won’t have need to sue.

Myself, I’ve had a huge headache all week.  I spent a little time Saturday in the garden.  That was all it took, I was in bed all day with several ice packs and finally took something for it when it refused to lessen on its own.  Saw the Doctor on Tuesday to re-do the saddle-less stirrups Cervical cell swab (the tests came back inconclusive last time…damn it!  Once is enough!)

I asked my Doctor about my neck and we looked into my file which showed I did have an MRI done last year?  The Neurologist believes it’s TMJ so, first is Physical Therapy.  I’ll be starting next week and then go back to see my Doc in two months.  My Doctor said she could give me a shot to get me out of this flare up, I declined. 

The MRI I had in 2009 I do not remember that Neurologist telling me about TMJ so I’m curious.  According to last year’s test, there is significant malformation like Arthritis.  Hmm….not so sure.  I often have excruciating pain when I bend over like when I clean the kitty litter boxes or garden.  Wowza!  But I never have jaw pain at all.  We’ll see.

I haven’t done much else than make phone calls, pay Dad’s bills, and get buried in paperwork.  But, there was something neat that happened yesterday.  A little Pine Siskin hit the window, Richard went out and saved it from the kitty, held it and put some water on its beak.  It drank the drops of water but didn’t move much.

We were afraid it has broken a wing.  Only in t-shirt, jeans and socks, Richard said he was going back in the house so handed birdie sunshine to me.  I held it real still, talked to it and was a wind breaker since it’s been cold and windy.  I tried putting him/her down once but it looked like the little fella was shaking, so went back to holding him/her.

I watched as those tiny eyelids slowly closed as the birdie slept in my hands, what a huge message of trust.  It was quite beautiful.  They say a bird in the hand is worth two in the bush, but I’d say a trusting bird in the hand is pretty priceless!  I thought of how important rest is to any living thing that has faced trauma.

After some time the little bird woke and was much more alert, I lifted my hand into the warmth of the sunshine and waited.  He/she climbed up the incline of my fingers and flew away.  To be connected to life like that is a rarity in this shut-in world of mine.  Definitely a highlight of my day/week.
How are things in your worlds???

Thursday, April 4, 2013

Of Dreams and Nightmares

I decided against leaving this event, or events, to the ages; nothing is quite as unsettling as nightmares based in reality.  I wasn’t sure I would want to remember.  But then, I thought if this happened to someone else, what would I say, how would I encourage them?

If this had happened to someone else I would say that this is triggered by dealing with Dad’s affairs and being forced to work with (or whatever…) my family.  Sigh.  Indeed, it is true.

I have three older brothers, all of us adopted.  When people would say I was the ‘Princess’ and they protected me, I’d laugh and say, “No, I learned how to fight.”

The youngest brother, 18 months older than I, I’ll call Rebel Heart.  The middle brother, 8 years older than me I’ll name Religious Heart, and the eldest brother, 9 years older, I’ll title Reluctant Heart.
In this mix of differing personalities and experiences, Rebel Heart was the one I dreamed about last night where, in back to back nightmares, I was trying to get away from him, as happened in reality, my life was at stake.

In real life, he was Dr. Jekyl and Mr. Hyde personified a hundred times over, kind when he wanted something and nothing short of a monster when angry.  It was one of these enraged times I yelled back at him, “Go ahead.”
“Go ahead and what?”
“Kill me.  You know you want to.”

It is a strange, bewildering place to grow up with a violent human being with whom you’d once been so closed to that people thought we were twins.  To what extent does someone ‘get over’ acts of blatant cruelty?  I wonder if there is indeed healing for some things in life.

So, dealing with Dad’s health and affairs a LOT of stuff is bound to come up.  Dad and I have NEVER been close, I can’t say he’s ever had friends, but, Rebel Heart and him are quite a dynamic duo of toxic abuser and enabler, even with my Dad at 90-years-old.  Personally I can’t relate to living in anything but being terrified all the time.

When I was in junior college I would get up before everyone, go to school and hang out in the Student Union Building, go to classes and then stay at the campus library until it closed around 9 or 10 pm.  Home was anything but.

Twenty years later, I’m still running away from him, just in my nightmares that are always just as violent and disturbing.  I struggle with a lot of feelings especially when Dad did nothing to protect me but acted like a hapless victim too…so somehow that made it sickly alright and allowed it to perpetuate.

I find it ironic my Dad’s life is in my hands, and that when he suffers I can’t sleep at night.  Weird, huh.  He never lost sleep over anything in my life.  Ever.

These feelings, so many things bubbling to the surface.  It is grief.  It is unresolved pain.  And perhaps, there are lessons to be learned and wisdom to be gained.  Perhaps I can look at them as Pema Chodron suggested to a childhood friend of hers, that when she dreamed of monsters, she was able to look at them instead of being chased by them.

Perhaps, by abiding with the nightmares and not trying to shove the emotions back down in deep storage, maybe I’ll grow a little stronger…

There is still something deeply disturbing about growing up with someone close to you who is capable of cruelty to animals and humans.

If I were on the outside and a friend was sharing this experience, I’d tell her how remarkable it was she survived it all, didn’t commit suicide and didn’t go the route of causing other people harm.

And, I’d say, it was probably her own natural instinct of self-preservation that made her get sick every holiday season the family would get together.  That’s a hell of a lot to go through and then have to act like some god-damned floorroom-shiny-Christian-we’re-perfect-there’s-nothing-wrong-with-us ‘family.’

I’d say good for her for never giving up, for discovering her own Resilient Heart in the harshest of circumstances.

Amazing Video!!

I tried to re-blog this from http://lifewithheadinjury.com/2013/04/04/amazing-video/ here, but seems I can only re-blog directly via WordPress.  Please share!  :) 



http://resilientheart.wordpress.com/2013/04/04/amazing-video/