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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About Resilient Heart

TBI x3, that's me! If you had a Traumatic Brain Injury (or Injuries!) and knew you might not remember dates, events, people, etc., would you live each day differently? Would you give more, forgive more, heal more? I am. The statistics for me developing Dementia or Alzheimer's is a high possibility - one, because of the TBIs, and two - because I'm genetically predisposed. Come with me as this present moment is all we know we have... Wishing you all the best - today & always. Blessings, Love & Peace, RH
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14 Responses to In the Waiting

  1. I know that feeling watching my mom’s last few months and especially the last two weeks. Boy, I never want my family to go through that.

    I was so exhausted when it was all over that I had a melt down. I thought I grieved when I knew beforehand that her illness was terminal but the real pain was after, for me. I know everyone goes through the grief differently.

    I am in constant admiration of your courage. There are no words to express how much. I am sure I am not alone; you are an example of how to be brave for everyone following your story. I love your heart. ((((hugs))))

    • Gosh, thank you so much, I appreciate your heart and deeply meaningful words. This has been quite a journey and I am working on my first post to bring everyone up to date.

      Grief is definitely strong medicine, as are meltdowns. It’s a shock even when it is expected, whether the person is gravely ill, or elderly. Our reactions are as distinct and different as our fingerprints.

      Thank you, I’m glad you find courage here – it is reflected back to those who live it and give it most. 🙂 Hugs dear one. 🙂

  2. You have a right to do that with the living will and all.
    I don’t want my family going thru a long time of it, however, my second wife told me that if I went on life support, she would give it one week then she would have them shut everything down. Regardless – one week. We, of course, aren’t married anymore – that didn’t help.
    Scott

  3. I have done such a waiting and been with friends too. It is such an in-between time. My hope is you have support and good books to read. Many blessings.

    • Thank you, Carol, it is quite the in-between time, that’s a great way of putting it. It is as unchangeable as the tides, thanks so much for sending blessings. The support was lovely, I’ll blog about it soon. 🙂 Hugs to you.

  4. sending hugs, i wish i could help xo

    • Thanks so much, it’s a process none of us would ask for, yet it’s a big part of life. We’d do well as a species to talk about it more, with more dignity, beauty, freedom, and grace. Hugs!

  5. Above all take care of yourself. This is a difficult time and all the more reason to ensure you are well enough to be resilient through it. 😉 … Thinking of you … Dorothy

    • Thank you so much, Dorothy, for your heart and kind words. Yes, self-care is the only way to make it through this particular path. I’m grateful for your friendship, support and spirit. Hugs!

  6. You are in a tough place, but then you don’t need me to tell you that. As one TBI individual to another, we know what added stress does to us. Please get all the rest you possibly can and eat right plus remember our friend, the water bottle. In these times of severe stress, it’s so easy to let the things we know slide by, but we only have a few univeral tricks that get us through the day. Please try to hang onto those.

    As time permits – I’ve nominated you for the Very Inspiring Blogger Award. You may pick the award up at my blog: http://sheridegrom.wordpress.com/2013/04/17.

    • Sheri, thank you so much for your wise counsel on self-care and reminding me to stay hydrated. My water bottle went everywhere with me, I thought I’d lost it once, but then again, I was feeling like I’d lose my mind if it weren’t attached! Phew boy, talk about challenging…

      Bless your heart and thank you kindly for the award, that is so very thoughtful, I’m deeply touched!

      Hugs to you, dear one. 🙂

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