Day 3 with Dad

Day 3 with Dad (Friday, April 19, 2013)

I wish I had happier news that Dad had turned the corner and things looked up, but that was not to be.

Reluctant Heart had promised to meet with Richard, Dad, and I FIRST thing this morning to decide on Hospice; he chose not to show up until late morning.  He told us he wasn’t ready for Dad to go, I was standing by Dad’s side, holding his hand, looking at his unresponsive body and said, “But Dad is.”

Richard spoke up stressing the need to honor what Dad wanted; it was not up to us to decide.  Richard shared about how his own brother denied their Mother her wishes, and when she was in her final days garnered all her strength up and asked him, “Why are you doing this to me?”

Reluctant Heart grew defensive saying Richard wasn’t part of our family and didn’t know our Dad the way we do, Dad has always bounced back.  As he got up from his chair, Reluctant Heart said, “I’m not going to play God” he said my name, and then murmured the decision was now ENTIRELY mine…OMG

I was asked to wait until Reluctant Heart talked to our uncle who was planning on arriving in 6 days to see Dad, and before he left he started crying, I started crying and I agreed to wait.

But I knew.

I had stayed in Dad’s hospital room overnight, listening to the gurgling in his throat, hearing the painful coughing.  They were pumping him full of fluids his body could not process and then tried to drain it out of him.  He was swollen, unresponsive, unmistakably suffering.  They’d already taken 15 pounds of fluid from him his last hospital visit.  This is the very definition of insanity; doing the same thing over and over again hoping the results will be different.

I knew.

I knew.

What was I waiting for?

The pain of letting go and the fear of the unknown were entirely overshadowed by the pain of watching him suffer.  Who was I to ask him to stay because I wasn’t ready or couldn’t let him go?  The piercing truth I told Rebel Heart over the phone prior to our arrival rang in my head like church bells; we’d never be ready.

Not too long after Reluctant Heart left, I asked the nurse if we could initiate Hospice.  A dear lady from Hospice met with Richard and I, gave us all the time in the world to ask questions, discuss it, make sure.  I looked at the Healthcare Power of Attorney and I was able to make the decision with my brother, or, by myself.

I knew it was the right thing to do.  I’d weighed it in my heart for years.  We had our miracle five years ago when Dad wasn’t supposed to have survived his heart problems.  But he did…at such a painful, painful price…and maybe, just maybe, because of the suffering I’ve had with TBI could I see the invisible struggle he was living in at 90 years of age.

Dad was moved to Hospice the same day, they had a bed available (one out of only have 15 beds), they are the only Hospice for two of the largest counties in Washington State.

This Hospice was the same place I’d taken a pivotal, healing, grief recovery class at many years ago.  That healing is a foundational part of my life to this day.  I had the benefit of unshakable, peaceful knowledge; they would take excellent care of Dad.

Knowing Dad was moving to Hospice, Richard and I left the hospital so I could shower, nap, eat and then return to the hospital for his move.

I awoke from the first good rest I’d had in weeks to a terrible, terrible voice mail from our uncle.  “I’ve gone to great lengths to get out of Boston, please don’t kill my brother before I get there.”  Yes.  He said that.  It’s still on my voice mail.

I know about the Boston bombings.  I cried, I was horrified, as was the rest of the world, but, the hospice worker yesterday told us Dad was living his final days…how is it right of me to ask Dad to continue to suffer, go against his legal wishes, because this doesn’t fit into his travel plans?  Wow.  I traveled from Montana as soon as I could and even with that, I knew Dad could have died before I got there.  If so, the poor planning would have been on me.

Dad’s doctor had actually signed the release papers yesterday (Thursday), I didn’t know that.  They knew.  Dad’s sister knew.  As God as my witness, I was not killing Dad.  It was in God’s hands in accordance to Dad’s wishes.  I knew no other way of honoring him than doing that which hurt us the most.

Who was I to tell Dad to stay and suffer because I couldn’t let him go?

I didn’t know how many hours or days Dad had left; neither the doctors nor I had the insight on which to rely.  We took it one step at a time, one painful breath at a time.

My conscience was clear, but feared a war was about to start…

That voice mail sent me into a crying spree I couldn’t stop.  As if I wasn’t already feeling the weight of the world…

Days 1 and 2 with Dad

Day 1 with Dad (Wednesday, April 17, 2013)
I was relieved and glad to get to see Dad myself, there was no peace of mind like it.

Dad has been through a lot, his eyes were not shiny blue as we knew them to be.  They were  overcast and that may have been due to head trauma from the seizures.  Dad knew I was there, I watched his breathing change as did his eyes.  He was still in there, just unable to talk.

Wiping drool from his mouth I watched him mouth ‘thank you.’  I also watched as the nurse put a tube in his throat to clear out the phlegm, I could tell it was painful to him because how he moved his legs inward as if to cringe.  I watched as he moved his weak right arm upward after the nurse had turned away, I mentioned it to her.  She asked if his face itched and she scratched it for him and adjusted the tubes.  She asked if that was better and he seemed settled.

I called his Sister, who had been a nurse in WWII, because she wanted to say her good-bye to him.  My Reluctant Heart brother didn’t want to do it, couldn’t do it, or whatever.  I didn’t either, but did it anyway…definitely one of those difficult life moments.  Dad showed no signs of response at my holding the phone up to his ear so she could speak.

I knew he was still in there.  It was wait and see.

Dad’s doctor called me this morning saying today’s EEG showed no change from yesterday.  He said we should initiate hospice anyway, and I received a call from hospice, Reluctant Heart and I will sign papers tomorrow (Thursday at 3pm).  Dad will stay at hospital until a bed is available at hospice.  They’ll move Dad tonight, around 11pm to another floor, his care will be less intense because he’s at that stage where he doesn’t need intensive care.

As long as life holds him here, I’ll fight for him.  When it’s his time, I will help him go.

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Day 2 with Dad (Thursday, April 18, 2013)

Rough day with Dad, he was clearly in pain when coughing and is extremely weak.  No real change, we opted out of another EEG after meeting the rep from hospice this afternoon…he asked in a far kinder way than I can remember…would having the test results change any of the outcome for Dad?  Probably not.  The hospice rep also said in his opinion, Dad is in his final days.

So we sort of decided on Hospice.  This is the most difficult decision.  Ever.  Reluctant Heart brother needed time overnight to decide but most likely will be agreeing to send him to hospice first thing in the morning.  I know it’s not the end of the world, it just feels that way.  Reluctant Heart brother said he’d call Dad’s brother tonight.  I asked Richard what he would do and he said we have to go back to what Dad asked for in his Living Will/Advanced Healthcare Directives.

My heart and mind are heavy.  It’s hard for me to breathe, I wonder if they can put me on oxygen and sedate me!

Richard and I were in the room alone with Dad after our meeting with hospice rep and I asked if I could have a few moments with Dad alone.  I told Dad we’re going to help him, if it’s his time to go, we will help him go.  If not, then I’ll fight for him, after all, we are a stubborn lot!  I said just think of who you’ll get to see if it is your time (probably stupid of me in retrospect!)  I said other things I can’t recall right now…I started crying, and he started crying.  This was the SECOND time I saw him cry today, the first was when he was coughing hard, but this time he opened his eyes ever so slightly.

Exhausted as I was, I stayed overnight in Dad’s hospital room.  I told him I’d be there whether it’s his time to go or stay, and, I told him it’d be okay for him to let go.  We’ll be okay…

Hospice care removes all life support and offers small doses of morphine, so he will not be in pain.  I so wish God would just let him pass away in his sleep.  This is the most difficult thing I’ve ever experienced.  I’m taking my phone and charger to plug in overnight, I doubt I’ll be getting much sleep.  Hospice allows family to be there 24/7 from what I understand.  Gulp…

The decision has been made, in my book, we just have to honor it and follow through.  Calgon, take me away…

Ready to Write

A lot has happened since I last wrote.

Dad had been in and out of the hospital well over one month after he celebrated his 90^th birthday.  My brother (Reluctant Heart) called with updates; I took frantic notes just as I’d done in the past.

This time, in addition to his existing major health issues like Congenital Heart Failure, Dementia, Incontinence, and everything else he’d come to live with in the past, a terrifying new landscape emerged: C. Diff, Pneumonia – and then – Seizures.

I spoke with Dad’s Neurologist; there was no sign of stroke, no fluid on the brain and no way to measure the damage done to Dad’s brain.  They ran several EEG’s, there was little, if any, change.  The only other thing they could do to find the cause (for someone Dad’s age and with Dementia) would be a spinal tap.  I could not agree to make Dad go through that painful procedure.

I grew restless.  Reluctant Heart brother sounded hopeful over the phone since Dad rebounded after his first seizure, but that was it.  The seizure activity grew to where he could no longer talk on the phone.  I couldn’t stand it.  I had to go see for myself, especially with a heart and mind deeply etched with devastating Brain Injury experience, I was on high alert.

I couldn’t sleep.

I paced.

I stared out the window.  A lot.

Who was I kidding?

I wasn’t doing a darn bit of good here, I was already there; I might as well just get my body there too!  I took my Sister-in-Law’s Mom’s advice to heart about being helpful from a distance and thought she was right, but the inner message was unmistakable and unrelenting, I HAD to go.  No reason or excuse could override this crystal clear, deep sense of knowing.

Shortly before we left, my Rebel Heart brother had me on speakerphone in Dad’s hospital room, I told Dad I didn’t know how or when, but I’m on my way, I have to be there.  My brother said Dad coughed and opened his eyes a little; we believed Dad knew what I’d said.

I told Richard I needed to go, he could stay and care for the animals, but I have to go NOW.  He said whenever I want to go, we’d go.  I looked at the calendar, with appointments scheduled for the next couple of weeks and thought quietly about logistics.  Easy.  I’ll just postpone all my appointments to the first week in May.  Done.

Remarkable speed and focus getting the house prepared were on our side, we had a mission, and there was no way Richard would let me drive it alone.  Wise man!    Richard asked a friend to look after the cats and horses, he told us to not worry about the animals…that was such a huge gift.

I called Dad’s Assisted Living facility since my Reluctant Heart brother told me he read that they allow family members to stay overnight for free.  I spoke with the Executive Director was gracious, kind, and understanding.  He welcomed us to stay and even have meals there if we wanted.

Instead of us heading out the weekend of April 20^th, we left abruptly Wednesday, April 17^th around 3:30 am!  The 12-hour drive was quite uneventful, for which I’m grateful.  A distinct lack of excitement was quite a nice respite.

We went straight to the hospital, I was eager to see Dad and completely unafraid of what I might see…

(To be continued…a lot happened over the last few weeks and I want to be sure to honor the insight, truth, and beauty in this story by allowing this message to unfold in its own time.  Thank you in advance for your patience.) 

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. 

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???

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!

Reblogged from Life After Traumatic Brain Injury:

Not a word said, but it will leave you in awe! Make sure you watch it to the end.

Thought this might spark your heart and spirit like it did mine. Many thanks to Mark for sharing. :)