Monday, April 6, 2015

Dear Dad.

I have spent the majority of my life being a caregiver.  In one way or another, I have spent more than two thirds of my life being responsible for the livelihood and wellbeing of another in some shape or form.

For this, I am thankful.

I have been taught many lessons in life at a young age because I have been a caregiver.  I have been taught humility and humbleness.  I have been taught grace.  I have been taught about forgiveness and about strength.  In somehow finding hope even when it seems impossibly buried under that last rock you'd left unturned in a quarry full of stones.  To be patient and kind.  In being faithful to your family.  In being resilient for no other reason than you have to be.  To survive, to make it to the next day with the same challenges and struggles, you must be.  Not everyone can do this, to survive this, so I am thankful.

For all of these reasons, I chose to be a nurse.  I chose to give myself to others in their most vulnerable times of need, when hope seems lost.  When humility is out the door.  When strength seems impossible. I know all too well all of these feelings and can empathize with families and patients and hope to bring them even the smallest bit of comfort in their times of need and celebrate with them the victories, big and small, along the way.

My Dad suffered in many ways throughout his battle with Huntington's disease.  He finished this fight, this war within himself, two weeks ago tomorrow.  March 24th, 2015 at approximately 10:00pm his heart stopped beating.  His family surrounded him and sent him off with our blessing to the next part of his journey.  To be at peace, to be free of a diseased body and mind.  To leave the grip of the disease that took his existence away.  Huntington's disease changed him in every possible way.  The zest for life he carried with him that I remember as a child was gone many years ago.  He had become but a hollow shell, simply a body that used to house the spirit of a man once full of smiles and laughs was replaced with anger and hostility toward those around him.  This is the disease that consumed him.

He had been in a nursing home going on seven years this fall.  The day we had to tell him it wasn't safe for him to live at home anymore was one of the very worst days of my life.  To help take him and his belongings to the place that would become his new home, without any of us, was heartbreaking and gut wrenching.  But it had to be done.

I would visit every Monday after class and bring him lunch.  He knew it was Monday if I came.  We'd share a pizza or some sandwiches, talk about school and the patients I got to do cool nurse-things to the previous week.  My jam packed schedule and waiting tables.  The new boy I was dating who I'd marry 6 years later.  The days and months and seasons of life seemed to blur together for him and for us.  Life went on.  Visits home were few and far between for him; it was too hard to take him back and he didn't want to go either.  I didn't blame him.

After being in and out of a psychiatric facility after an outburst, he landed at Spring Meadows where he would finish the last few years of his life.  It was perfect for him.  Out in the country, with a patio he could sit in the sun and look at the pond.  Not all the patients needed as much nursing care as he did but they could manage him there, no matter how angry he got or difficult to manage.  It was a saving grace for him.  People who could give him what he needed when we simply could not.  His disease was progressing, he was in a special chair full time, too weak to hold himself up in a wheelchair.  He would lay on mats on his floor for a change of scenery and watch his TV in his room.  His world became very small.  It was difficult to visit him without someone else there to talk with because he didn't say much anymore.  He would look at you with his blue eyes and smile most of the time.  It was almost as if he was looking through you. He'd only manage words in moments of anger.

My step-mom Jody is an angel on earth.  She truly took their wedding vows to heart and stood by his side no matter how ugly it got, no matter what he'd yell in a fit of rage fueled by a disease he had no control over until death parted them.  So often in Huntington's families the spouse cannot handle the person they married and what the disease was changing them into.  Jody faithfully visited, brought him milkshakes and told him about the things going on in the outside world.  My grandmother, his mother, was there often.  She was unable to fathom him being alone for any major holiday or event despite the fact that he didn't know that it was Christmas or his birthday any longer.  The thought of it was unimaginable to her and I can't blame her for wanting to be with her son, her only remaining child.  She has buried her husband and both of her children. I can't imagine how her heart feels.  She looked at me during the funeral and told me "I'm no longer a mother.  I don't have children", and my heart shattered into pieces I didn't know it had left to break into.  That pain.  That hurt.  It's not the way things are supposed to work in life.

March 24th started like any other week day.  I had a dentist appointment and chatted with the hygienist about our wedding and showed her some photos of the day.  I got a text from Jody that my dad wasn't doing well.  I planned to go to Columbus that weekend for a bridal shower and told her I'd be up to visit in a few days.  I clarified what "not good" meant and she said he was not responsive.  He hadn't taken anything by mouth with the exception of the sublingual morphine and ativan the hospice nurses were giving him to help make him comfortable.  His breathing was fast.  His heart rate was up.  He was requiring oxygen.  I decided I would go the next day, we've been through ebbs and flows of his illness that he sometimes would have these really bad days but be okay after a good sleep.  It didn't cross my mind that my father would die that day.  Just hours from this time.  I sat down for a meeting at work and broke into tears.  He wasn't doing well.  I was just processing it and what this might truly mean.  21 years of his illness gives a lot of time to prepare for the worst.  To prepare to say goodbye. But it's never truly enough time when you are actually faced with it.  I got another call just moments later saying the hospice nurse said she didn't think he'd make it through the night and to get my brother Tyler and come up right then.  So that's what we did.

We arrived around 4:45pm to find him completely unresponsive with his eyes rolled up in his head, not quite completely closed, and with oxygen in his nose.  His breathing was rapid, about 35 breaths a minute from my unofficial count.  I have enough nursing experience to kind of guestimate things like that just by a close eye and not needing to truly count.  I knew walking in that door that he for sure was not going to make it through the night and I was not going to leave.  I've seen enough people die to know that it was coming.  My grandma was there, Jody, and cousin Kathy.  Tyler and I stopped to get everyone sandwiches because I refused to eat nursing home food and we were out in the middle of nowhere.

I sat down next to him and kissed his head.  I held his arm and told him I loved him very much.  Jody was on the other side of him and whispered in his ear "it's okay honey, we're all here, you can go".  My sister also arrived and we all were chatting about different things, mostly telling stories and memories of Dad.  Mamaw and Kathy went in and out to smoke a few times, the nurse in and out every hour to administer the morphine and ativan and hopefully slow his breathing to make him more comfortable.  He had been on so many medications for so long to help with his mood and agitation it hadn't surprised me they'd already increased the doses three times that day to help him be more comfortable.  

In the 8 o'clock hour my sister went back in to our aunt's house to tuck her kids into bed for the night.  Around 9:15 Jody was saying Tyler wanted to go home for the night and she was going to take him, wanting to know if anyone needed drinks or snacks to hold us over for the night, knowing we wouldn't be leaving.  We were deciding what sounded best and it was like a movie - it was 9:30pm and he opened his eyes.  He had a film over them from where they were half open the whole day and so very dry.  He looked around the room - first at my grandmother who was on the side his head had been leaning toward.  "Hi Phil - hi!  I see those blue eyes!  He's opening his eyes…"I walked around to see for myself.  I knew this was it.  I knew that this can happen right before someone dies.  That final moment of clarity.  Jody said it out loud, "this is it".  It was.

His breathing suddenly slowed.  We all kissed his head.  We told him we loved him so very much.  That he had been the very best Daddy he could have been.  His eyes again almost closed, but not completely.  His color began to change, his mottled arms and legs crept into his core and face.  He kept breathing, slowly, slowly. The color in his face had changed and I knew he was gone.  I felt for a pulse and there wasn't one.  He was always so stubborn and in true fashion, he continued to have a breath every few minutes until right at 10:00pm.  Tyler stepped out, he couldn't handle those breaths.  He had told me he didn't want to be there when Dad died on the drive up.  That's the thing about life and plans and intentions - they aren't always what we think they're going to be.  Nothing happens on our time.  He stepped out into the hall, with tears in his eyes.  No 19 year old should see his father die.  No 19 year old should have only one or two good memories of the man who was supposed to teach him how to be one.  But that's life.  That's what happens with Huntington's disease.  That's what happened to him.

The nurse came in and listened with her stethoscope for almost a full minute and shook her head at me as I was shaking mine at her.  We both knew he was gone yet neither one of us said it out loud.  Jody sat crying at the bedside, a martyr of a wife.  She hated that he had started to get cold, she just wanted him to be warm.  At least before, while he wasn't fully himself, he was alive and he was warm.

We all stepped out of the room and went in one by one to say goodbye to him.  To say things that we needed to say to him.  I apologized for not being there more, but I knew he would only want me to live my life.  To not spend my days trapped with him in that nursing home.  To be successful, to be significant. That's what I know he'd want for me, but I apologized for my absences anyway.  I told him how much I loved him, about how I'll remember all of everything.  For what he'd taught me about working hard and never giving up. About dedication and perseverance.  About love and compassion.  I told him how happy I was he got to see me in my wedding dress and selfishly that's all I really wanted the last few years was for that to happen.  I kissed him again and wiped my tears, leaving them in the room.

My sister came back and brought a bottle of rum and we had a drink in his honor.  Every one of us around his bedside toasted this man - a son, a father, a husband, a grandfather, a cousin - and knew he would be appreciative of the sentiment.  We decided to have the visitation that weekend and called the funeral home for them to come.  Tyler and I just wanted to sleep in our own beds that night so the family told us to go ahead and go.  It was like my feet were cemented to the ground and it took everything I had to will myself to leave for the last time.  The last time I'd ever see his face.  I didn't want to leave but knew there was nothing left for me to do.

The next few days were like a fog.  I was in charge of the music to be played at the visitation.  Two hours of his favorite songs were burnt onto a CD that I knew he'd love.  Classic rock mixed with the Jackson 5 and Hang on Sloopy.  Every song with a memory.  Saturday came and we drove north to meet our family.  There were so many beautiful bouquets of flowers all around and small tokens of love from others.  Photo albums were around the room and the slideshow of photos were full of the best times.  Photos of my Dad and Aunt Lisa as kids, Dad and Jody's wedding day, trips to Florida, graduations, the photo shoot I was gifted shortly after nursing school, pictures of smiles from good days over the past few years, and from Laurel and I's weddings.  The deterioration of his body as the photos went on was so evident.

The parking lot filled up and so did the side streets.  Dozens of well wishers coming to pay their respects.  I heard countless stories of from when I was little from his buddies, of things they had done together.  It was a packed house, it was as if the whole town was there.  That's the beauty of small towns, they come together.  The line was to the door and there were more people than chairs for the service.

And just like was all over.  The words were spoken and the hymns were sung.  The prayers were prayed. No more Huntington's disease.  No more trips to the nursing home.  No more Dad.

As the days go on, I find just that to be the opposite of true.  I feel him near me so often throughout the day.  Maybe it's because I know he is free of the body he spent the last 20 years trapped inside.  I find myself telling him every time I think of him that my only hope is that I have made him proud and will continue to do so.  That I hope I've made the right choices and I take the right path.   That I love him and I miss him and his smile.  That I'm thankful that every morning when I get myself ready that I can look at myself and see the eyes he gave me and always have that little bit of him in me.

My greatest passion in life is to do what I can to help find a cure for Huntington's disease, and that has never been more intensified as it has become in the last week.  Two other friends have lost parents, one the week before me, and one this week.  That is simply unacceptable.  We have to do better.  I plan to continue fundraising and volunteering, maybe even making a career out of fighting this disease.  I have hope.  I got that from him.

Rest peacefully, Daddy.  I love you so.

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