Wednesday, February 19, 2014

This is Hard

Life is so messy. Why does something so beautiful have to be so awfully, heart-wrenchingly, terrifyingly messy at the same time?

I may have mentioned, probably around 5 years ago and never again since, that my father has stage 4 (that's the really bad type) colon cancer. Then I mostly stopped thinking about it--of course, that's not really possible but cancer is a sneaky bastard, particularly in this case, and allowed for long moments of coasting quietly through this roller coaster ride for life, and during those moments, I just tried not to think about "it."

"It" is complicated and maybe even more so when the relationship is complicated. My dad is an alcoholic. Not the terrible monster beating and molesting people type, just the selfish, indifferent, occasionally absent kind. Man, this is hard to write. Because it's not cool to say, right? About a dying man. About a dying, not-certifiably terrible man. So not only do I feel limited in speaking of my grief but I feel even more limited because who thinks like this? Who says things like this? What kind of jerk...? I want to delete that last paragraph more than you'll ever know. I want to protect him, and this awful side of me, from you.

There was a moment that I blurted this horrible personal truth out to my hairdresser (the keeper of my soulful secrets) and admitted that there was a time after his diagnosis, that along with our confusion and sadness, the rest of the family felt a bit like he just got a free pass now. Without much familial investment at all over the years, he was going to need us and it would be inhumane to not just drop our former issues and be the kind of people that we would prefer to be in this situation. To be that kind of family, the kind of family we all wished we were, with the devoted wife and children beating their chests and crying to the heavens over the injustice of our lost patriarch.

But again, life is messy. Particularly when any form of addiction is involved.

(And my hairdresser laughed and cried at the same time, hugged me, and told me her story was very much the same and that I should write a memoir of my grief, for people like us. But I think this will suffice. That is why she is the keeper of my secrets, though.)

He has had good times and surprising stretches of being sober where he is enjoyable, and he has had bad times. He can be difficult to be around (this is the diplomatic way of stating this point).

The last time he was in the hospital, we were alone when the doctor came in and lectured him about drinking after his story changed a bit about how much he'd been doing it.

Finally, the elephant in the room had been unleashed.

When the doctor left, my dad said he didn't want to live if he couldn't have a beer with his chicken wings, and I told him that it really was his life and he could live the rest of it however he wanted, but that if he chose that to understand that he was basically choosing suicide--a long drawn out version, but suicide nonetheless since the tumors on his liver left no room for messing around. I reiterated that it was his decision, that it wasn't my life, but that I wouldn't bother with all of the chemotherapy and experimental treatments if he was choosing to give up in this way. I said it with kindness and without judgment, just a matter of fact way to say he was welcome to do that but let's call it what it is.

He quit drinking. For a while.

Through this ordeal, this fantastically shitty ordeal, we are closer than we've ever been in the past. He calls to update me on the progress of his illness and treatment and when sober, he would call frequently and we would talk about how a beer is just not worth it. When he quit calling, I knew.

His doctor called my parents' home at 10pm on Friday night and said based on some blood work he was reviewing, my dad was in liver failure and needed to go to the hospital now. He thought he was having a shunt placed in his liver and when I visited the next morning, we chatted casually about the time of the surgery and hospital food. There was a bright yellow unsigned Do Not Resuscitate form on the bedside table that matched the pallor of his skin and the whites of his eyes.

Since the beginning of his illness, we have this verbal dance that we do. He likes to point out that he will die, I think needing to talk about it but not being sure as to how, and then gives an estimate for that. My job is to acknowledge it and then refute it.

"I could be dead in 6 months," he'd say bluntly, waiting for a reaction.

"Yeah, you could," I'd reply. "Or you could step out the front door and get hit by a bus this afternoon, or you could live another 5 years. They gave you 6 months to live almost 5 years ago, so who knows what other odds you'll beat. You have no way of knowing, no one does."

"There are only two forms of chemo left I can try," was another intro to this conversation. "I could be dead within the year."

"Yeah, that's true, and it's a scary thought," I'd say, taking my turn. "Or this round of chemo could hit the 'reset' button and science could catch up and you could live for years still." That was one of his favorites, we repeated that dialog many times in many different but strikingly similar forms.

But this past weekend they had decided that his liver was inoperable and his favorite nurse gave him a kiss and a hug and tearfully told him it would probably be weeks.

This news was delivered as I sat waiting for the Lego movie, and I left my kids and husband at the theater without a car and drove back to the hospital, all the while thinking, "What do you say to someone who just found out that they are under hospice care?" or even more importantly, "What don't you say to someone who has just found out they are under hospice care?" Don't ask me because I still don't know. I was also wondering on the way there, is there anything harder than seeing your dad cry?

And then I found out that there is.

It's seeing your dad scared out of his mind and trying not to cry.

"They said weeks, but how can they know?" He asked, forehead furrowed, eyes watering.

"They don't know. They said months 5 years ago. No one knows," I said my lines, knowing that they know.

"They said weeks but it could be months, don't you think?"

"You've been feeling great. It could definitely be months," I lied to the yellow man before me.

"But I guess months isn't a whole lot better than weeks," he said with an air of defeat that I hope you'll never witness in your own lives.

"Of course months is a whole lot better than weeks. Every additional day is better."

He nodded.

I told him it must be scary right now and asked if he would rather this or something unexpected and without hesitation he said he would rather this, knowing it was coming. I'm not so sure I agree. From the outside looking in, this is torture of the worst kind.

I pointed out that while he still felt good, he should think of things he would like to do. That we would make it happen.

He would like to work and be with his dogs. That's all. He said he was so glad that they would outlive him, because he couldn't stand to lose one of them--forehead creasing, eyes watering overtime at the thought. He has a tiny, nervous little Chihuahua mix and a Dachshund, to better paint the picture of this "tough farm boy" and his beloved pets.

We spent the rest of the afternoon talking about what money was in what accounts and how my mom will be okay and how weird and morbid funerals are and who to tell and how to tell them and the importance of accepting the help of hospice, like this was a perfectly average way to spend a Saturday with my parents, casually discussing the end of someone's existence with that someone.

In a surprising (and messy) story twist, the liver doctor came in at the end of the day and declared the cancer doctors to be full of doom and gloom and said let's give it a few weeks and see what happens. Told him to go home and have a drink if he'd like. Thanks, guy, good looking out. How's that Hippocratic oath treating you these days?

But he is happy to be at home and with his dogs. He is happy to have his hope for a "few more months" confirmed by an outsider of our regular routine. He is happy to hold on to what is most likely a lie. As far as I know, he did not have that drink.

And in the background the rest of the family has whispered and texted talks of hospice and palliative care and arranges for special food and tries to give him a good balance of space and company. He fell down on Monday while feeling weak and told my mom he thinks it will be days and not weeks. He seemed surprised.

Out of habit, I fell into my role and thought, "It could be weeks, no one knows."

As if days and weeks aren't awfully close as it is.

21 comments:

Sasha said...

Oh Ashley, I am so sorry. I'll be thinking about you and your family. ((Hugs))

Melaka said...

Ashley,

I'm so very sorry to hear about your father. Thank you for this post. Only those who live and love an alcoholic know how extremely difficult it is to tell someone the truth of it's destruction deep inside of your heart.

My husband almost died this last year from alcoholism. He is lucky for the fact that I called an ambulance in just the nick of time. And then an intern almost made sure he didn't survive either. It wasn't until the sheet was pulled up over his head that he decided to fight back for his life. He has made a full recovery and has stopped drinking. He is a new man or at least a better man than the one I married.

I sometimes look back and wonder if I would regret calling an ambulance. Oh the relief I would get if I had just let him pass away peacefully at home...or the gazillion times I though about waiting for the day he left me so that I could get on with my life...so many dreams set aside instead to care for a selfish man.

Our relief/grief is different. We've been taught that it should be seen as something else so I applaud you for being so profoundly eloquent with your words. There is no way I could have expressed these emotions as well as you have.

Thank you and may peace and quietness fill your soul.

Melaka

jenn said...

Ashley, I am so sorry. Families are weird, twisted, complicated jungles of emotions, but no matter what the circumstances, it is difficult to watch someone come to terms with their own death. My thoughts are with you. It sounds like you are striking the perfect balance of compassion and reality with him.

Nova said...

Oh Ashley. I'm sorry. I don't know what to say in a stupid comment box on a blog. Life is terrible and brutal sometimes.

Jennifer said...

This IS hard! We lost my brother-in-law in May of last year. Talks with him near the end sitting in hospital rooms and at home were HARD. What do you say? how do you say it? Do they *know* their time is short, death is near? Somehow words find a way to come and all the minutes and hours spent togheter are priceless. be sure to laugh during those time when tears are close at hand. Praying for peace and courage for both of you.

Nancy said...

Yah. Life is hard. And really lame sometimes. And these messy situations are never really completely filled with peace, and beauty, and perfect, and noble people like we'd like them to be. We had our first real experience with death this past summer. An aunt -- though, in truth, more like my mother; and definitely more of a grandmother to my children (who she spent time with near daily) than their real grandmas have ever had time or ability to be. Cancer. Hospice. All of the things you are looking ahead at. Messy. Terrifying. And the weirdness of talking about details -- being asked to speak for the funeral that hasn't yet come. And yet all this stuff? It just comes. That's what it does. It's, bizarrely, like waiting a birth -- the signs there, the moments getting clearly closer, but nobody knowing for sure when the transition will occur. And we muddle through -- making mistakes. Being angry. But also finding bits and pieces of love and good and beauty -- not everywhere, but here and there. We hurt and ache and deal with crap and soul search . . . and, strangely, all the while, normal life goes by -- blithely unaware that it should stop spinning while we catch our breath and cope. The Lego movie still gets watched, homework gets done, we even laugh at funny things. Sigh. It's something, isn't it? Life? Blessings and lots of wishes for smoothness as you and yours stumble through this. Stumble, I think, really is the only way one can. Hope to you that you'll be given the right things to keep saying; that you'll have the peace of mind to do what needs done without injuring relationships, etc. So sorry.

Kimberly Job said...

Life is hard. Hugs to you and thanks for being vulnerable.

Jamie McGinnis said...

Hugs <3

nobody said...

I'm sorry. Hugs to you and your family.

Preppy Pink Crocodile said...

Oh Ashley- I am so sorry! Sending up positive thoughts and wishes for peace for all of the time y'all have left together. And hoping it's many many months!!

KK

gamma said...

Your letter was such a tear jerker. I buries my dad February one year ago. The doctors do not know. My dad had stage 4 colon, met to the liver. Then a secondary throat and most likely a third to the lung. They would not say about the lung because3 insurance would no longer pay. he also had stage 4 COPD. He drank up until the Thursday before he passed on a Sunday. And smoked. He said repeatedly he would rather die smoking one than die wanting one. And I respected that. He was not going to live no matter what. We called in hospice two weeks before we lost him. I moved him in my home where he lived 8 days until the Lord called him home. On Sunday at 2:15 AM hospice told me he was not actively dying. He was gone a short 7 1/2 hours later. So call in your family, his friends, enemies or not and let everyone have their turn to say goodbye. When he is close tell him it is ok to go. You will be ok. And give him that beer!

Renee said...

You have the best blog followers ever. If I had 1,000 tears reading this blog entry, I have 3,000 reading the supportive comments here. I wish I could get on the next flight and come down there and hug you and take you out for fondue and wine and make you teach me yoga in private because I'm too scared to take a real class. I love you and I'm sorry you're dealing with this, but wow. You're dealing with this like. You really are.....dealing with it in a real, raw way. Big hug and big love.

Caitlin said...

Shit like this just all-around sucks. I'm so, so sorry for all the stress, sadness and heartache these situations invariably bring.

As an aside, this really is a beautiful, honest, heart-wrenching post. <3

binajabber said...

I feel thrown back seven years, back to when we were the ones sitting at that hospital bed - colon cancer, spread to the liver, inoperable. As heartwrenching and eerie as it may feel to talk about a funeral that you know is lurking around a corner, I found that there was some solace in arranging it; in knowing that it was just as she wanted it.

I wish you strength and love and may your kids fill your heart with joy and light during these difficult times.

Maggie said...

Beautiful and honest post, Ashley. Life and death are complicated. Real people aren't perfect. All any of us can do is be present. You're doing that. My prayers are with you.

Amanda said...

I don't have anything profound to add. I'm so terribly sorry; your post took my breath away and made me cry. Your father sounds very much like my father and you are living one of my worst fears. You're in my prayers.

Cassadie said...

Fucking cancer. It got my mom, too.

I'm so sorry for what you are going through, as I know it too well. Your words are raw and honest and (I bet) cathartic. Keep writing.

TH said...

Ashley--you are living my life from 2006. Right down to the "not-abusive-but-not-great-person" alcoholic. I'm so sorry. It's hard enough to watch a parent go through this...let alone with someone you have complicated feelings.

I wish I had gained some sort of wisdom after going through all of that with my dad. Some sort of wisdom or healing words I could pass along. I don't know that I did. The only thing I can say, is to spend as much or as little time with him as you want. Say or don't say what you want. Do things YOUR way. Don't be guilted or bullied into doing something.

((HUGS))

Cindy * Daisies and Crazies said...

So, I read this late. And then I didn't know what to say... But I at least want to tell you that I'm sorry you and your family are going through yet another big thing. I was in love with someone with addictions. It was confusing and sad and scary. xo

Rachel said...

I am catching back up on your blog and just wanted to comment and say that I am thinking of you.... I cannot even begin to understand or provide any insight but I pray for you, your family and for him to find a little peace and happiness in each day. It is a scary and incredibly hard journey. Thank you for your beautiful writing.

Lisa said...

The word "sorry" is so useless, but I am. For all of it. You know my dad is sick too, and doing relatively well at the moment, but it's all fleeting and who knows how and when it will end. He also has alcoholic tendencies, and that may or may not have played into his cancer. But I guess we're all killing ourselves every day in one way or another, don't you think? I'm sad for all of you. Hugs.