Thursday, May 30, 2013

Day 5 with Dad (Sunday, April 21, 2013)


Dad is declining, slowly.  Sometimes his hands and feet are warm, and sometimes they’re cold as ice.  I know this is a natural process and I appreciate the comfort, confidence and calmness of all the staff here, I just wish it didn’t have to hurt so bad watching Dad fade away.  My heart physically hurts, but I promised I’d stay.

Yesterday we stopped by Dad’s assisted living facility and the Executive Director happened to be there.  He asked about Dad, I said he was doing well, but declining.  He said he’s had people graduate from Hospice as many as three times!  In a way, I wish he hadn’t told me that, I’m all for people beating the odds, but now I was beating myself over the head and questioning if I was doing the right thing.

All other information in my head seemed to vanish, all the conversations I’d had with Dad’s doctors, the stats, Dad’s health history the past several years, my own certainty and knowing, all the news of his seizures…gone…I panicked…heart racing…

Richard and I stopped to get a quick bite to eat at a drive-in burger joint, but I was in deep despair, my mind churning in turmoil, I wasn’t hungry, yet needed to eat.  I was already plenty short on sleep, my body needed some assistance, even if it was in the form of a mere hamburger!

I looked over at the fancy car that had pulled in a couple spaces from us.  The two ladies in the front seats perfectly groomed down to their nails, the nice dressed, disrespectful kid (tossing trash out the window) in the back.  They were laughing AT us, seriously, they were.  I was born and raised here, I know about the materialism first hand and it’s never impressed me.

I was too worn out to be angry or disgusted; I looked at them with a strange curiosity.  They’re laughing at us and my Dad is dying.  The two scenarios just didn’t mesh, I felt sorry for them yet a part of me wanted to go over them and tell them whatever they’re laughing at doesn’t matter, grow up, my Dad is DYING!  I’ve been at this place in life before, where all that trivial shit gets under your skin in no time.  Please don’t bother me with the things that don’t really matter.

I still couldn’t stop thinking about what the Director had said.  This was not a time for making mistakes.  Was I doing the right thing?!  I was trying to eat without feeling guilty, Dad is on his death bed and I’m eating a burger.  Some things in life just don’t go together, yet its life.

By the time we were back at Hospice I was pretty numb and exhausted from my mental and emotional gymnastics.  Richard decided to head back to his motel room early and it was just me and Dad.  Every once in a while I’d get a phone call, but for the most part, I long since made a ritual out of counting Dad’s breaths.  It was my comfort, yet also my adversary.

At the end of each exhalation I counted 1-one thousand, 2-one thousand, 3-one thousand, 4-one thousand…oh how we’re taught to fight for life!  This felt so unnatural.  I am so conflicted!  I want him to breathe, but also kind of don’t.  I’m lost.  It was my decision to move him to Hospice, OMG, had I made the right decision?

I turned on the TV for some distraction; my how the world becomes so tiny when you’re at this place in life.  Nothing worthwhile sinks in, the political banter and negativity did not appeal, I turned it off.  I sat there alone, watching Dad breathe, feeling like I’m carrying the weight of the world.

For some reason I felt compelled to tell Dad about being able to reach out to the military community, specifically veterans who come back with TBI.  I knelt down beside him, held his hand and told him because of my experience with Brain Injuries and our family’s experience in the military it was natural fit.  I said it was weird; it’s not something I would have planned!

I thought he should know his life of continual service to his community, church, and country made a big difference in my life.  It’s my intention to carry that legacy forward and I was honored to be there for him, and that I was honored to be his daughter.

[I then sat back on the sofa to think.  I realize it’s strange to have dual feelings like this because I am grateful for his service…but, I also have a lot of issues with a Dad who was both abusive and allowed destructive domestic violence to take place in his home.  Nonetheless I go back to counting each inhalation and silently agonize about my decision.]

A quiet, respectful, low-key nurse comes in to check on Dad.  She’s new to me, so I try to make small talk but it’s hard.  Words don’t seem to matter right now.  I am about as uncomfortable as a person can be with all the thoughts, doubts and questions running through my head.

I mention to the nurse my wondering if I’d made the right decision or not.  Her answer stopped my exhausted contorted acrobatic mind in its tracks.  She said the decision had already been made a long time ago…there was no decision on my part.  She had my attention; I was stunned, but also humbled.  A simple, laser precise truth got through.

And, she said, if it were the case that my Dad actually improve if it’s not his time, then they’d treat him as an out-patient.  I had known this before, but it got whisked away.  The truth.  It was not my decision, it never was.  I got back to the place of peaceful knowing.  I was here for my Dad.  If he got better, I’d fight for him and go with him to rehab, but, if it was his time, I’d help him go.

I’m pretty sure she was an angel.  The gift she gave me with her words, comfort, gentle knowing, restored me to peace.  I could sleep without the weight of the world, and, I would never agonize deeply again.  Remarkable.

Tuesday, May 28, 2013

Day 3 (continued) and Day 4 with Dad



[Please note the actual events happened on the days and dates in parenthesis.  I really had great intentions of communicating this to you, dear readers, but like many thoughts lately, it’s there and then, poof, it’s gone!  I’m sorry for a distinct lack of clarity; I appreciate your patience, understanding, and support while I stumble around in this intensely dark fog.]

Day 3 (continued from Friday, April 19) and 4 with Dad (and Saturday, April 20, 2013)

Richard and I arrived to Hospice Friday evening, the staff was quick to welcome us, help us feel at home and supported.  One of the staff had asked how I was doing and I said I was better before I’d listened to my voice mail this afternoon.  I sobbed!  They listened, were compassionate and kind. 

With that off my chest, they said they’d make a note in our chart that I needed extra support.  How validating, calming, and reaffirming was that?! 

They moved on to tell us Dad rode in the ambulance without incident though he did become a little agitated.  I wish I’d had the foresight wisdom to have ridden with him.  I told him before they moved him that he was going to ‘new digs’ to which he did not respond.  I specifically used that phrase because it’s the same phrase Dad used when proudly showing us his ‘new digs’ at the assisted living facility last summer.  I had hoped for a response, but there was none.

The nurse quickly brought me up to speed how things work there; they are completely patient-centric.  They have no voice mail, no messaging service.  If people call and there’s no answer, then they simply need to call back because the staff is taking care of the patients.  That really warmed my heart.  I gave a list of names and phone numbers of people I okayed to call the staff and get updates. 

What a huge gift to take that off my shoulders too.

They told me they stopped the medications he did not need.  He would get small doses of morphine to help with pain, and, it’s really good to help breathing. 

We had to don gloves and gown up just like we did at the hospital because Dad had C. Diff. and Pneumonia, as a courtesy to their other patients, we had to be cautious. 

Want to know a cool thing?  Within three hours of Dad being at Hospice he already looked better, even his skin appeared to be healing; he no longer wore the pained expression on his face, but instead looked very peaceful and comfortable.

The nurse’s assistant showed me where bedding was so I could get some rest.  He said some people find they can’t do this and that’s entirely okay.  That was one of those few moments where I secretly wondered if I could do this too.  I’d never done it before, so how would I know, LOL?!  That was the only time I questioned myself about staying.  I’d made a promise to Dad and I had to keep it.  For some reason, “No man left behind” kept running through my head.

I don’t know where this sense of protecting Dad or taking care of him came from.  I felt like his watcher, and I was quick to be grateful for the Hospice staff. 

They were so good at seeing the entire patient, if he needed lip balm as he did, they took care of that.  I asked for lotion because his skin was drying out, they provided that.  I sensed a calling for all employees at Hospice, and, would come to envision these folks as fellow warriors looking out for the best interests of Dad.

What a relief from feeling like I had to fight for everything Dad needed at the hospital.  I asked if I should forgo wearing earplugs that night to be sure to wake up when Dad needed something.  Get this – the nurse’s assistant said that wouldn’t be necessary, that’s their job.  Wow.  That melted my heart.

They suctioned the phlegm in Dad’s throat, just like they’d done at the hospital, and in the same manner, he bit down on the tube.  It was a painful process for him, one nurse at the hospital took 20 minutes to do that relatively small procedure (I was trying to help Dad open his mouth…but he hated it and so did I).  It was okay for him to say he was done with that.
 
I slept in the gown and gloves, just as I’d done at the hospital…no one told me otherwise at the hospital!  So, Saturday morning I awoke and felt like I needed to lie back down again.  Later, waiting for Richard to arrive to go to breakfast I started feeling nauseous.  Richard arrived and I said I needed to lie down, then I said I felt like I was going to throw up…please get the nurses.

How embarrassing!  One of the nurses said she noticed overnight I was still gowned up (they lovingly check on family members), when they have to wear the gowns they say they start to sweat in like 10 minutes, they couldn’t imaging sleeping in one!  So, lesson learned.  I was fine, we got some breakfast, I drank a lot of water and was none the worse for wear. 

We returned to Hospice and shortly after, Dad’s Sweetheart called.  (I now call her Dad’s Sweetheart instead of ex-wife because that has negative connotations for the most part in our society!  They were only divorced on paper.)  She, her son, and daughter wanted to come say their good-byes.  We waited for them in the Living Room, they came in, and we hugged and briefly chatted.  I showed them to Dad’s room, and said if they wanted me in there I’d go in, or if they wanted time alone, that was okay too.  They said they wanted me in there.

Dad had a special relationship with his Sweetheart’s granddaughter; it was so sweet she could be there.  She drove home from college just to be able to say goodbye. I cried!  It was really sweet, they each said what they needed to…but I really lost it when his Sweetheart kissed him on the forehead (through her mask), said, “Hello, Love.  The Azaleas are blooming, you should see them, they’re really beautiful.”  She said a few more words and then said good-bye. 

Both the granddaughter and I turned away in that moment; it was so utterly painful to bear.

That night (Saturday, April 20), I decided to wear a hospital gown to bed instead!  It was pretty funny; the staff mentioned they’ve not seen a family member do that before.  I joked with Dad we were wearing matching outfits; I even took off my socks to be fully authentic! 

Saturday, May 18, 2013

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…

Sunday, May 12, 2013

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.

-------------------------------------------------

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…

Thursday, May 9, 2013

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 90th 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 20th, we left abruptly Wednesday, April 17th 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.)  :)