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. 

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