Month Four

We are going into month four now. Four months living in a world without you in it. I wouldn’t really say I was a daddy’s girl. We didn’t even often see eye to eye. I disagreed with many of your choices and you disagreed with a lot of mine. But we always respected each other. And loved each other, even if we didn’t ever really say it. We knew.

I never wanted life to go on. I felt like the world would never be the same without you in it. I guess it’s not the same and I guess life really does go on. Here we are. I’m living proof.

I went to your grave today. It looks lonely. Your headstone still hasn’t arrived. The flimsy, temporary paper place card doesn’t look like something you would have liked. It looks cheap and disposable. You were never one for cheap or disposable. It has your name spelled out on it. Black and white and Courier New..and the day you were born and the day you died. Your life in 25 characters. There’s a little bit of grass on the ground where you are buried. Life that wasn’t there the day they put you in the ground. I left some fake flowers in a cheap plastic vase while we wait for the permanent one to come in. I don’t even know if you liked flowers. I know you liked plants and veggies and hummingbirds, but I don’t know if you liked flowers. I doubt you would have liked fake and plastic. But I guess you can’t really complain. I put a hummingbird feeder out today, just like you would have done. And I cooked up some squash, with extra bacon.

I told you I’d take care of mom. I don’t think I am doing a very good job. Mom is still taking care of me. It is hard to flip those roles. I did have a birthday party for her. I think she liked it. I can imagine it is hard for her. Her first birthday without you. So many firsts without you. But I guess that’s how it goes, and soon there will be seconds without you.

It’s spring time. Signs of new life everywhere. You would be about to plant your tomatoes. April 15, that’s the date of the last frost here. Hopefully I can get some going and maybe we will even have some by the 4th of July. Tomatoes by the 4th, that’s always the goal. Mom doesn’t want to plant anything at your house. She is sad that people are mowing the lawns and planting their gardens. It reminds her too much of you.

We talk about you a lot. How it just wasn’t fair that you didn’t even know what was going to happen to you. That everyone knew that you were going to die except for you. Our little dirty secret I guess. I don’t know. I am pretty sure that somehow you knew. At least in the back of your mind you knew. I hope you did anyway. I hope you knew.

False Hope

False hope. Hope – faith, trust, believing, expectation. False hope, there was so much of it along the way. In the beginning, at the very start of this ugly diagnosis…my dad had a colonoscopy. He was 58. Sure, he was supposed to start his preventative screening earlier than this. But no doctor had pushed for it, and he wasn’t one to volunteer for medical tests. He went in thinking it was a routine test. And when he awoke he quickly discovered the test could not be completed. There was a tumor so large it blocked the way and the study could not be done. The doctor said it didn’t look good. A doctor he would never see again. The nurse assured him colon cancer was easily treated and he had nothing to worry about. Perhaps if they had discovered it early, perhaps stage I or II cancer this might be the case. But this large tumor had already spewed its malignant reaches into dad’s lymphatic system, washing his lungs and liver with poisonous cells. The false hope started with a nurse speaking out of turn. Probably in attempt to reassure, but dad only clung to the fact that he would be fine.

And it continued, the false hope. With the oncology team. People are living so long now with stage IV colon cancer. Five, even ten years. There are so many things to try. Never mind the five year survival rate of stage IV colon cancer still hovers around ten percent. Even though 90 percent of people in his shoes would be dead before the end of five years, maybe my dad will have ten. Maybe he will be the one. Nevermind he had a particularly aggressive form of cancer where the tumor had a specific gene that made it notoriously more difficult to treat and more resistant to the standard chemotherapy. There is still so much that might work. One day, you might beat this. Just a little more poison in your veins. Just a little more nausea, vomiting, incontinence, diarrhea, neuropathic pain, anorexia, exhaustion, just power through because you will be the one where this noxious cocktail might actually take hold of these cancerous cells and buy you time. Nevermind that time will be riddled with confusion and fatigue and your life won’t be a thing like it is right now. You should try this out, it might work.

And on to Johns Hopkins. When my mom first called the colorectal surgery office, the physician said there was nothing he could do. Imagine that. A surgeon who won’t cut. You’d think that would be enough to convey hopelessness. But they fought. They got into see the oncology team for a second opinion who somehow convinced the surgery team to take my dad’s case. Even though stage III colon cancer was usually the worst case they would operate on. And there it was. A beautiful glimmer of false hope. They lopped out a huge hunk of rectal tumor, of rectum, of colon. They hacked off 70 percent of his liver. They took so, so many lymph nodes they created a leak in his lymphatic system where fluid drained and drained into a plastic grenade my mom had to diligently empty every half an hour. Almost two weeks in the hospital. They hacked him up. And then they told him he was cancer free. Cancer free. Imagine that. A body riddled with cancer and now he was free. He endured radiation, extra, extra strength clinical trial level radiation, strong chemo, hours and hours of surgery. Pain and pain and pain. Rides in the car to Baltimore and back over and over and over again. MRIs and Ct scans and Pet scans, but all because there was hope. Hope that somehow he would come out ok. Hope that all this treatment would buy him some quality time. Time to tie up loose ends and to live and to love and to make things right.

But only a few months later, the scars still running deep. The bag on the side of his belly a constant source of irritation and embarrassment, the scans show the cancer is back. It was never gone. And his liver is worse, and now it’s filling his lungs. And the scar tissue on his liver is now stuck to his diaphragm and between the tumors and the scar tissue it was so hard to breathe. So back to Hopkins, to sew up the bag and hack up part of his lung to chase the tumors that are still spreading like wild fire and to zap his heart to kill a few crazy cells that are making the beats irregular and uncomfortable. But there is still so much to be done. Continue on with your chemo. You look great. All is well. I asked to the doctors to help dad with pain meds and with some Ativan to help him relax. No need, he doesn’t need Ativan. No morphine needed. Try some Tylenol and a muscle relaxer for the tumors that suffocated your organs. Surely, you are not dying. There is so much left to do.

Back to the chemo. Weight was dropping off. Not ten or twenty but over 100 pounds. And the confusion and the incontinence. Life was without dignity, and full of embarrassment and loss of pride and loss of self. Something formerly unacceptable is now just a way of life. And dad was so confused. He stopped eating. Clearly he was dying. He was slipping away. We asked the doctors. Of course he wasn’t dying. There was so much more we could try. They prescribed TPN. Artificial nutrition pumped through the port in his chest right into his veins. He will not eat. His body is shutting down. But we will make it take nourishment. There is so much left to try. Never mind the burden on my mom. The house that has turned into a mobile clinic. She has no emotional support. Anxiety is through the roof. There is no preparation for what is to happen next. No one know what happens next. She gingerly and eagerly and lovingly poured the viscous, sticky white honey thought his veins. To keep him alive. There is hope.

Dad is dying. He doesn’t know the day. He doesn’t know it is Christmas. We ask the doctors again. No, he’s not dying. There is so much more we can try. They stop the TPN. His body is railing back. His belly and lungs filling with fluid. He can’t continue the artificial nutrition. He is confused. He falls. We take him to the hospital. The oncologists come. They say maybe he has malignant meningitis. Maybe cancer in his spinal fluid explains the confusion. But, there is more left to try. We can try a spinal tap, do more scans and then radiation. Radiation on a body that is almost a corpse. How do you transport someone to radiation five times per week who is too confused to sit still? Dad is dying. But he still doesn’t know. There is so much more to try. The doctors from Johns Hopkins are long gone. They have retreated, given up. But neglected to speak up. Just faded into the background. There was nothing left, but they didn’t have the courage or decency to say. The appointments were canceled without even a goodbye.

Dad was dying before my eyes. Can we please just go home? With hospice and morphine and a hospital bed and help and support from nurses and a social worker and a chaplain. No, just home health would be fine. Dad is not dying. There is so much left to try.

They finally told dad he was dying. Two days before he died. They told him and he gave up. Went to sleep and never woke up. Maybe that’s why they waited. That false hope was keeping him going. That false hope helped allay the fear and anxiety that waited ahead. That false hope kept him from making amends and tying up loose ends. Was the false hope good? We all knew he was dying. But he didn’t know. He just knew to fight. To fight. To fight for all the things left to try and all the things that were to come. The false hope helped to bury the fear. I don’t know. Maybe the false hope helped soothe the deep wounds. But it also left so much unsaid and undone. It is hard. It is really hard to tell someone there is nothing left to try. There is no hope. To take away the belief the hard disease is beatable, curable. The mistake of the nurse trying to soothe, the misguided advice of the doctors trying to be humane. Trying to shine a light on a situation clouded in midnight. I don’t know maybe false hope is the answer. Maybe it is. Maybe it is.

Mad world

Mad world

And I find it kind of funny
I find it kind of sad
The dreams in which I’m dying
Are the best I’ve ever had
I find it hard to tell you
Cause I find it hard to take
When people run in circles
It’s a very, very
Mad World

 

I woke up yesterday morning after a night of not sleeping so well.  I had to take my love to surgery. I guess I was more nervous than he was because he was snoring away next to me for most of the night. I checked my phone after the alarm went off.  My littles had been sleeping away at grandmas.  Mom had texted me in the middle of the night saying my daughter was sick.  She had a fever and a sore throat and a cough.  She needed to know what to do.  I begrudgingly texted her back with motherly instructions, got my lazy and sleepy self dressed, and proceeded downstairs and out the door into my warm garage and waiting SUV to head out to the hospital.

I sat next to him as we waited.  I had the lucky advantage of being a nurse, of knowing all the steps that were to come next.  Some of the staff recognized me and maybe treated us a little bit better because I was one of their own.  But at the very least, I was able to explain to him the things he didn’t quite understand because staff were a bit too rushed to answer questions or thoroughly explain things with the explanations that needed to be undertaken with extra care due to the stress and confusion and extra drugs swirling around his head.

He was finally whisked away to the cold unknown of the waiting operating room and I was escorted to the surgical waiting room where a grumpy volunteer promised to keep me updated. The signs on the door proclaimed loved ones would be provided with updates every thirty minutes, a fairly lofty goal when considering all the folks waiting around for their loved ones inside packed surgical suites.  My anxiety was rising. Thirty minutes passed, then an hour, then two, and almost three without an update.  The surgeon said he thought he would be done in about 40 minutes. Who knew what was taking so long.  But I figured if something had really gone wrong surely I would be alerted and no way he could be lost and forgotten back there.  The surgeon came and pleasantly greeted me.  The familiar jargon of one healthcare professional to another. The brief update and discharge instructions as other waiters curiously looked on.  Observed our interactions.  Wondering why he was speaking on and on about specific tendons and bones and trauma incurred during surgery and what the possible aftereffects might bring.  The old bat of a volunteer finally called me back to the recovery area.  The first she had spoken to me since we checked in. I am mildly annoyed that her so called 30 minutes lasted longer than three hours.  She asks me if I am ready to go see Roger.  I don’t know anyone named Roger, but sure I’d go back.  And my wet palms were suddenly dry and still.

I sat with him until he had recovered and helped him back into the car. We got home and settled inside and my mom met me at urgent care with my daughter.  I was mildly annoyed and a little bit stressed.  Slightly anxious over money and finance, the copayment for surgery and meds and now more doctors and meds and on and on and on. I was mildly annoyed that I had to take time away from my recovering better half to run to the doctor for a slight childhood illness that likely did not need a trip to a physician but just some TLC and chicken noodle soup.

And then while I am waiting a mom and a child about the same age as my own wandered into the urgent care. The family was Hispanic, didn’t seem to speak perfect English and inquired at the desk about the cost of a visit for someone who was uninsured. The receptionist replied that the cost for an office visit was $185.  The mother smiled and said thank you and walked out the door.

I should have stepped up.  Here, have my money.  Surely there was no reason in the world that a child with the same symptoms, the same age, many of the same circumstances as my own child should be denied the same treatment my own kid was getting.  He was just a kid, same as mine, it didn’t make any sense. But I didn’t step up.  Just sat there in my own little world.  Worried about my own kid and trivial circumstances.

Yes, my other half was just home from surgery.  Sure he couldn’t drive for a while on account of a broken foot.  My kid was sick with the flu and would need an adult to stay home with her for a week while she recovered.  But I had a job with the flexibility to take off when my family needed me.  I had a mom and a mother in law close by that could help with chores and driving and errands and child care and just emotional support.  I had good health insurance and money in the bank to pay for appointments and medications and unexpected aftercare. I wasn’t worried about how I could afford to get my sick kid to the doctor or having to choose to pay for water or electricity or medicine a loved one needed, I wasn’t afraid I would be fired or retaliated against for taking some time off to care for family members, and I even had plenty of sick time to use so that I would not only keep my job but get paid for the time I needed to be away from work. 

It just made me so incredibly happy and sad.  Happy and fortunate to have all that I do…  And so incredibly sad that the little boy so much like my own walked away that afternoon without access to healthcare or medicine that my own daughter had.  Sad that I felt annoyed at the inconvenience of it all instead of grateful for all that I had.  Sad that I know there is much more I could do to help, but I don’t do it.  Ultimately I am selfish.  And even if I did it would never be enough. 

Yes, it’s a very mad world. A mad world indeed.

 

And I’m looking for you wherever I am

Hoping to find you between the sheets

In the bed

Under it

Hiding in the shadows of the dark closet

And I’m looking for you in the food I shove in my mouth

That slides down my throat.

In the drink that swirls in the bottom of my glass

And I’m looking for you in love and lust

In arms and legs and tangled up parts.

In work, in fun, in play.

In childhood dreams

In the brightness of day and darkness of night

And I’m looking for you

But I cannot find whatever I am seeking

Comfort, that fleeting sense of security.

Trying so desperately to please– to find relief

In others’ opinions

In a fantasy that is at odds with all that is real

And I’m looking for you

Sweet comfort

Sweet relief

A cowardice move in a plot not complete

And I’m looking for you like a mother’s arms

And I’m looking for you

And I’m looking for you

 

 

 

Zanzabar

I went back to my psychiatrist yesterday.  Once upon a time I was crazy.  Once upon a time seemed like a lifetime ago.  Things have been relatively stable for so long. Sure there have been battles here and there with depression, lack of energy, not having the will power to interact with people or get out of bed or even take care of my babies. Depression, I’ve heard it called the common cold of mental illness.  And it pretty much is.  As much as a cold or the flu keeps you in bed, slightly incapacitating at times, but mostly just an annoyance that keeps you from enjoying life and work and home and everything in between, it doesn’t break your grip on reality and as annoying and uncomfortable as it is and at the core of it, you are still you.

I usually only go once a year.  Check the box.  My head is okay. Come back next year. Since dad died I’ve gone a little extra.  Extra head checking. Extra box checking.  I’m sitting in his office waiting yesterday.  All the crazy floods back. I watch the girl waiting across from me.  She is obviously not quite right.  She smells funny…her hair is greasy. She looks like it’s been some time since she’s had a bath.  She talks quite a lot.  Inappropriately friendly and interjecting in conversations she hasn’t been invited into.  You can see the side effects from the meds all over her.  The thinning hair, the weight gain, the hormonal shifts oozing out of her oily pores, the jittery limbs of an akathisic body on poorly regulated psychotropic meds.  It is so very hard to tell where the disease starts and the medicine begins. I think how that used to be me.  The one sitting there and it was so easy to tell that there was something not quite right about me.  And I felt a bit nostalgic and a bit proud knowing I had been in this very seat for twenty one years. And I have worked hard to not be an other and to be more like everyone else.  For better or for worse.

Now it’s my turn.  He comes out.  He is ready to check boxes.  A little, not too bright and only a little more motivated medical student comes with me.  She is there to shadow.  To watch how he checks boxes. He is grumpy today.  Distracted by other duties.  Distracted by phone calls from the inpatient unit, by nurses needing orders, by social workers needing placement, by administrative folks and faculty.  Despite being an awesome doctor, today he is distracted.  He has no time to assess, to examine, to contemplate, to forge the patient, doctor connection.  Today, he is merely concerned with clicking away at his computer.  Making sure my boxes are checked and enlighting the student with a tiny morsel of knowledge that she ferociously scribbled in a notebook; nothing google couldn’t have told her just as well.

He asks me the handful of required questions about sleeping and eating and mood.  He half listens and he clicks away.  I tell him I felt better about dad.  That this current issue isn’t related to dad.  That yes, maybe it was triggered by his death, but that I didn’t see a clear relationship between my off kilter head and dad dying.  He says that’s what everyone says who is grieving and has a concomitant mental illness. That there is no relationship.  That the mental illness is a distinct beast apart from grief.  He says it’s not true.  He says this is no relapse.  He says this is grief.  I’m not sure.  It doesn’t feel like grief to me.  But what do I know?  Today I’m just the patient.

He is distracted.  Not listening.  He asks me if I have any questions.  Any questions about what?  We barely spoke a minute or two.  No, no questions from me.  I tell him no, nothing. But before I go, just FYI, I’m hallucinating.  He seems unmoved.  Typing away on his computer.  He tells me I’m not hallucinating that I’m not psychotic.  If I know I am hallucinating, I have insight, and this means I am a ok. No worries. Hallucinations are apparently no cause for concern. Good.  I feel so much better.  He asks no more questions, about the type, the duration, the frequency, the content, the situation in which they occur.  I don’t know, as a healthcare professional all the things I would likely ask a patient sitting in front of me.   But, I am not a doctor.  Like I say, today I’m just a patient. He’s typing away.  He says take these.  Types his prescription for antipsychotics into his computer and it transmits quickly to the pharmacy.  I protest.  The side effects – the weight gain, the hormonal changes, the headaches, the sedation, the depression, oh the sedation, the lack of motivation, the apathy.  I don’t want any of it.  He ignores my complaints.  Simply says, you’ve worked too hard.  You have too much to lose.  Has to be done.  No room for debate.  Paternalistic medicine at its best.

I feel defeated.  It’s like a death sentence. I cry.  Seven years weaning off these damn drugs. Hard, hard years of no sleep and feeling nuts and alternating between manic and depressed and psychotic.  All to start back again.  But I do what he says.  I am a good patient.  A couple days on these things and I feel worse than before I started.  The fatigue is crippling.  Driving is treacherous.  Thinking is so slowed.  My head feels like it is being electrocuted.  One tiny circuit and hair follicle at a time.  My brain is angry.  A million volts of internal energy begging to get out but not able to fire at all.  The dead and disabled body not able to respond to internal stimulus.  Just a corpse with so much pent up frustration dying to get out.  Already I am not myself.  Already I am not my own.  And what is a hallucination or two compared to the sick, horrible feeling these drugs impose?

How do you know when the meds stop and the disease kicks in?  How can you tell the dysphoria and sedation that come from the drugs from the negative symptoms of a schizophrenic disease? Who knows? Today I am just a willing participant.  Today I am hoping for normalcy in a world where it does not exist.

Private Joker, do you believe in the Virgin Mary?

Been thinking today about something the priest was saying at mass this weekend.  The mass I went to was said for my dad, so I think that made me pay extra attention.  It’s sort of strange.  My mom is a really devout catholic, and she raised me to be catholic, too.  But dad was never a religious person.  Toward the very end of his life, he was baptized.  I don’t know if he really wanted it, or he was just scared and covering his bases.  But whatever the case, when he died he was catholic and that at least brought mom some peace.  I guess they say that praying for people in purgatory or saying a mass for them helps to get them to heaven. I don’t know where my dad is other than in the ground, but hopefully the masses and prayers get him one step closer to the pearly gates if he is lingering around in limbo somewhere.  I hope he is content.  I hope he has found some peace.

Religion has always played a big part in my life.  When I was at my craziest and couldn’t sleep I spent my mornings at daily mass and was at church as soon as they opened the doors.  Hyper religiosity was a part of the psychosis.  So in a way sometimes I am cautious to be too religious as it is a kind of door way into the supernatural and the semi insane.  At least the rituals and routine always have felt like home to me.  And of course there is always some doubt in the back of my mind.  What does all of this mean? But what is faith without doubt?

But anyway, back to what the priest was saying.  He was talking about how all sin or weakness or vice boils down to three tenants of the human condition— a need for bodily pleasure, a need for attention, and a need for control.  Thinking about how right he was.  I think about food.  When I’m stressed, I eat. When I’m happy, I eat. When I am sad, I eat. I had been getting better about it.  Before dad died.  Finding more healthy ways to deal with emotions. Stress and joy and sadness and angst and anxiety…eating or drinking or eating and drinking don’t work…sex, only a temporary fix.  Pain, tattoos, piercings, there is only so much one can do without drawing too much attention. I don’t know there’s always something to fill the hole, to fill the void.

According to him, everyone has one of these vices, but I’m fairly certain I have all three.  A need for bodily pleasure, a need for attention, a need for control.  Attention is a weird one.  Most of my life, I have dodged the spotlight.  I’ve been shy.  I’ve been self-depreciating.  I don’t like myself and don’t expect that others do either. But I’m pretty sure there is a part of all of us that demands attention.  That finds pleasure in being acknowledged.  That feels fulfilled when validated by others.

The need for control.  Isn’t that the truth?  It is so hard to believe that something is out of my control.  I demand instant gratification, instant answers, instant satisfaction, and everything in my environment is under my perview.  The driving obsession with control is definitely a constant source of stress but also comfort so deep down.

It makes me look at all of my vices, all of my little flaws, all of my self-loathing, all of the good things and the bad things that make me who I am.  Who am I anyway?  At my core I am a pleaser. All I ever want to do is to do good and make people happy.  I am a self-sacrificer. I don’t know if that is a good trait or a bad trait.  Making everyone else happy will at some point cause hurt feelings for not making everyone happy all at once and leaves me in a place where I am never quite happy with myself.

I am smart, I am kind, I am loving, I am empathetic, I am giving, I am strong, I am powerful. I am a mom, I am a friend, I am a nurse, I am critical of others, I am forgiving, I am loving, I am cynical, I am hard, I am incredibly soft, I love until I break, I am a bottom liner, I am intolerant of poor performance but tolerant of everything else.  I am loving and I am cold I am drama and I am calm.

I love everyone else and I hate myself.  I feel like I am not good enough at anything.  I am smart, But not smart enough, I am not strong enough.  I am weak, I am indulgent.  I cannot say no.  I am consumed with vice I cannot get over.  The words in my head…I am fat, I am ugly, I am stupid, I am shy, I am weak, I am nothing, I am not enough, I am a bad mom, a bad everything.

I don’t even know where I am going with this.  The human condition.  Self-reflection.  I don’t know.  The search for meaning when maybe there is none. The mysteries that lines all that you think you stand for.  The values that just scream why bother.  I don’t know.  The bereavement lady told me to write. Even if it goes nowhere and doesn’t make sense, so I write, senseless or sensible.  I write. Maybe it helps gets me through things.

Gunnery Sergeant Hartman: Private Joker, do you believe in the Virgin Mary?

Private Joker: Sir, no, sir!

Gunnery Sergeant Hartman: Well, well, Private Joker, I don’t believe I heard you correctly!

Private Joker: Sir, the private said “no, sir,” sir!

Gunnery Sergeant Hartman: Why you little maggot, you make me want to vomit!

Gunnery Sergeant Hartman: You Goddamn communist heathen, you had best sound off that you love the Virgin Mary, or I’m gonna stomp your guts out! Now you DO love the Virgin Mary, don’t ya?

Private Joker: Sir, NEGATIVE, sir!

Gunnery Sergeant Hartman: Private Joker, are you trying to offend me?

Private Joker: Sir, NEGATIVE, sir! Sir, the private believes any answer he gives will be wrong and the Senior Drill Instructor will only beat him harder if he reverses himself, SIR!

Gunnery Sergeant Hartman: Who’s your squad leader, scumbag?

Private Joker: Sir, the squad leader is Private Snowball, sir!

Gunnery Sergeant Hartman: Private Snowball!

Private Snowball: Sir, Private Snowball reporting as ordered, sir!

Gunnery Sergeant Hartman: Private Snowball, you’re fired. Private Joker’s promoted to squad leader.

Private Snowball: Sir, aye-aye, sir!

Gunnery Sergeant Hartman: Disappear, scumbag!

Private Snowball: Sir, aye-aye, sir!

Bereaved

So I thought it might be a good idea to visit the bereavement counselor.  I know that hospices have to offer bereavement services for those left in death’s cruel tracks. I’ve been on every side of death and dying.  I have been an oncology nurse, holding hands with those who are brave enough to fight the ugly fight that comes with a life altering, lifesaving, life ending, anxiety provoking illness.  I’ve sat next to those who I have administered toxic drugs into their crying veins and wiped their foreheads as they heaved their guts out into pink emesis basins and blue puke bags.  Rubbed the backs of those in pain; watched and provided presence to the ones who I wouldn’t even touch because just a light caress would cause a pain more immense than I could ever imagine.  I’ve shared in the joys that come when the bell is rung, and the chemo is finished, and one’s battered body has at least temporarily won the fight.  I’ve shared the deep sorrows that ominously arrive when the news comes down that the cancer has spread, the cancer has come back, there are no more options left to try.  The fear in one’s eyes when the realization that this illness will be the cause of their demise has finally settled in.

I’ve been a hospice nurse, rushing in when death is very near.  Rushing in too late, when symptoms are out of control, when pain is too much, when breathing is too disrupted, when fear is heightened and out of control. I’ve been ushered calmly in, when those brave folks who have decided to stop treatment, or to never start it, have determined to make the most of the seconds and minutes and days and months they have left.  I’ve been there so many times at the last breath, at seconds after, holding my cold stethoscope against a lifeless body, proclaiming that life was indeed gone.  Dressing a body with muscles tight with rigamortis, with old, bloody vomit dried in hair, with thick secretions matted into jaundiced skin, with dry eyes fixed in an open state, with old blood, and bodily fluids staining sheets and mattresses that once made a bed of wedded bliss and trying my very hardest to make a body without a soul look like more than a pallid mannequin all decked out for Halloween. I’ve been there myself in death’s cruel wake providing support and understanding in a situation where there is nothing to make sense of.

I’ve been a hospice inspector, determining regulatory compliance with all the rules and regulations and stringent laws that hospices and nurses and healthcare professionals must follow.  I’ve been an advocate for families to make sure that agencies are following the rules they are supposed to be following.

I’ve scrubbed and scrubbed the rotten scent of death off skin.  That smell of decay that never seems to dissipate. I’ve taken home the pain and anxiety of patients and their families.  I’ve cried into my pillow at night for your children who will feel the pain of losing a parent at much too young an age. I’ve tossed and turned with no sleep for the feeling you will have when your spouse, the only love you have ever known will be done and gone and your world will be turned upside down. I’ve made myself sick with anxiety when a patient my own age will soon be gone from this world and she is so, so much stronger than I could ever be.  And my own pain and angst will not even hold a candle to anything your family is going through.  I will sacrifice time with my own children, my own family, and my own interest, to be support for you. But, that is only the smallest little sacrifice I can make at a time when a world upside down will never be turned right side up.

It is Lent right now, and I guess a time of soul searching and looking for meaning and ways to give up things, to give alms, to relieve yourself of bodily pleasures.  I think that being a hospice nurse is the most rewarding career I have ever had.  It is a bit self-indulgent, because by helping you, I realize that every single moment I have is precious.

But anyway, I am going through it all myself right now.  Dad never really accepted death, we never really had a relationship with a hospice nurse.  We just had a blur of the last few days, with a truly horrible nurse who never even learned dad’s name.  He was just a number to her.  Room 4009.  I was a busy nurse on a floor. I worked grueling 12 hour shifts where I never peed or ate and cried in the parking lot before I went home.  And even though I gave it my all, I gave all of my six patients every ounce of energy I had.  I can believe that many shifts had passed where I only knew you as a room number or maybe a last name.  I never knew your hopes or dreams or desires.  I never knew the love you had for your family or your career.  I never knew much beyond your allergies and medical history and how to keep you alive.  And I am truly sorry to you.  Whether it was my fault, or I was just a flaw in a meaningless cog in a broken wheel of a healthcare system, I am sorry.  From the other side, when your own father is nothing but a number, it is painful, it is raw, and it is misery in action.  The clash between the machine that is healthcare and the personal, horrifying experience that is a death denied for so long is the most dysphoric thing I have ever experienced.  All the things I never wanted for him.  The false hope, the over treatment, the over promising, the chemo days before death, the poison in his veins that caused side effects no one should ever bear, the lack of time.  Time for repentance, for making amends, for making sense, or making rights, for living, or loving, and forgiving, it was all stolen from you in a whirl of true American grit.  Of promises of fighting to the end, even when the fight is futile and sure to be a losing battle on all fronts.

So I went to see the bereavement counselor.  To bereave – to take away by force. I guess it was by force, dad definitely did not want to go gently into the cold night.  I hoped that she could offer some insight.  Some small comfort from the other side, I’d hoped she would let me know that I would come out okay.  That life would one day go on.  That the dreams, the nightmares that come would somehow subside.  The last visions of my dad.  A once powerful patriarch devolving into a man in tears, a man afraid, a man holding his daughter in a way he had never done.  A man with synthetic opiates pumped through a metal port implanted in his fragile chest.  A man with artificial tubes draining his dark, almost nonexistent urine and pumping dry oxygen though his blood.  A man swollen with fluid leaking from his veins, so malnourished that there was no protein inside to suck the fluid back in and keep the swelling down.  The man whose lungs were slowly filling with fluid making breathing difficult and noisy.  The man who never accepted help but was now totally helpless, depending on others for even repositioning his limbs on pillows.  The man who always held his head high, but now could no longer summon the will to lift his head from the pillow.  The man whose strong voice had now faded into oblivion and the only sound left in the room while we held vigil was the pumping of the morphine, the breathy flow of the oxygen, the deep rattling in his lungs as he breathed.  The ticking of the clock counting down the time left in life. I was hoping she would give me permission, finally permission to not be the healthcare provider, to not be the oncology nurse, to not be the hospice nurse, to not be the medical inspector, permission to be the bereaved– the one left behind.  The one mourning, the one taken by force.  But I guess it wasn’t all that I expected.  I guess she cannot provide comfort or give me permission to be what I need to be.  She can’t stop the hallucinations that have come running back full force. The voices that tell me I wasn’t enough.  That I am never enough.  Maybe my problems are too deep seeded for her.  Maybe I know too much.  Maybe being on the other side and coming back is just too much to be able to help.  Maybe I just need to walk alone until I find my way.  Maybe I need to help someone else to help me help myself. I am not sure.  It is month three and the numbness has transformed to pain.  And the pain is deep.  And the pain is hard.  And the pain…And the pain…

 

 

Sunday haiku 

Eyes meet, trancelike pools

Lips lock, passion overflows

Electricity.

***

It is a cold day

Death is a welcomed escape

Bleak eternity.

***

There is a void where

Love used to be. His brother

Is named apathy

***

A new day is here

Embrace the warmth that kills night

Happiness is yours

***

Hard work is treasure

Not found but earned in trenches

A strong man burns bright

***

An angry hero

Is a slave to no one but

His own sharpened blade

****

Sweat beads on forehead

Hot breaths tangled in young lust

A thrust will not do

***

Your face is like home

A warm blanket in the sun

The place that you know

***

Leathered and musty

Skin wrinkled, hugging against

Old bones and lost youth

***

Secret rendezvous

Stolen moments lost to time

Night melts into day


Lasts Part II

After all the last times in the lives of a loved one comes the long line of final traditions and rituals.  Dad took his last breath on the evening before New Years’ Eve. Mom was sitting by his side holding him in a last embrace. A first and a last, the medical examiner was called due to a fall in the hospital prior to his death, and we awaited the approval to allow the funeral home to take away his body.

How many times have I participated in this last ritual as nurse? Cleaning the body.  Not preparing it for burial, but preparing it for a journey of a place of healing and hope to a place one step closer to finality.  Every time is a little bit different, though always reverent and thought provoking.  Preparing the body. An intimate last goodbye.  We wash the face, try to caress the lids shut, but rarely do they stay. Clear the mouth and the tongue, but usually the mouth won’t stay closed. Style the hair, wash the body. Attempt to position the limbs in a natural, sleeping position.  Dress the body.  Keeping the corpse warm in outside air that always seems to chill. I have dressed bodies in pajamas, in t shirts, in nice clothes and dresses.  I have helped scooch heavy bodies onto funeral home gurneys and gingerly swooped up old women who seemed to have the weight of a paper doll.  I have escorted parents holding their small bundles of joy to the awaiting hearse. Lovingly saying their last goodbyes and watching the black limousine disappear into the night with their hearts outside their bodies.  But this time was different.  Mom helped the nurse dress dad.  I am not sure if anyone washed his body at that point.  Two old men, hunched over and grey came to escort him onto the stretcher.  I helped them wrap him in a white sheet after folding his arms over his body.  We hoisted him onto the stretcher, seatbelted him in. Covered him with a tattered, red velvet blanket.  I said goodbye. I said a prayer. I wanted to open the window, but the windows in the hospital don’t open. And he was carted away to the funeral home.

I try not to think of what happened to him after that.  The laying in the cold all alone. The embalming process. The draining out of all the blood and replacing it with strange chemicals.  The blood down the drain.  It doesn’t even need to go in any sort of biohazardous waste bin, it just trickles down the drain like water.

Funerals are another last ritual.  Planning the funeral was stressful to say the least.  Family discord became family drama.  Again, thank God for mom, who was stronger than any of us every thought possible. The viewing was so strange.  So many people came. We all stood in a line.  Endless hugs and mandatory handshakes. Forced socialization. “You look great.” “Thank you” “I’m sorry” “Let me know what I can do”  I don’t even know.  It seemed so odd. Meaningless hugs and touching people you haven’t seen in years or ever.

The funeral at the church celebrating a faith that he maybe sorta believed in. The flowers.  The real flowers that are not far behind in death.  The burial.  The lowering the body into dirt.  Full of artificial blood and artificial everything. Dad had a cut on his hand from falling.  It was rather superficial. They filled it in with silly putty and paint.  It was a rather terrible recreation of living skin.

The food.  I guess we have finally come full circle.  We comfort the dying by force feeding and comfort those they have left behind by the same. Maslow’s hierarchy.  Physiologic and most basic needs – air, water, food. What we all need and want the most.  It fills the hole when the holes are empty.

The lasts. The last memories, the last actions, the last thoughts.  The last rituals, the last things we do for the dead are the first things we do in our new lives without them.  And there it is, the circle of life.

Lasts

I guess plenty of grieving people wonder what they could have done differently, wonder if they had done something differently would the dead still be alive.  I don’t really think there is anything different I could have or would have done differently with dad.  I am not even really sure it is productive to think about, what is done is done and in the past.  All the would haves and should haves and could haves are really purposeless. They won’t raise the dead and just cause angst in the living.

But I do think about the lasts. I try to pinpoint the last time I saw or interacted with dad when he was coherent.  Dad was only unresponsive for a day or so, and before that he was walking and talking and conversing mostly appropriately.  But, the shadows of confusion had been around clouding things for months.  He was so good at faking it.  So good at convincing everyone around him that things weren’t quite as bad as they were.  I’m not really sure when the very last time was when I talked to dad when he was dad.  And as I look back, I wonder just how confused he was and for how long.  I wonder what he knew, what he didn’t, and how much was just denial hiding things away deep in a psyche that couldn’t face the truth.

The last food he ate or meal I made him. The night he went to the hospital, I force fed him a few bites of frozen beef stew.  On Christmas, he ate a bite of the turkey he carved and some shrimp.  On Christmas Eve, I made him some fish tacos and he ate a couple bites of Mahi Mahi and some black beans. Two days after Christmas, the last day he was awake, I hear he ate some eggs from the hospital. If I knew it was his last meal, would I have made it more special, with more care, with more love, tend to every detail?  Probably not, we could never figure out if or when he was going to eat anything or what he really wanted.  My saint of a mom carried a protein shake and Capri sun around to every room of the house for dad to complain about and sip on.  She lovingly kept him alive one sip at a time.

The food. Wow, that was such a hurdle.  As a hospice nurse, I can’t even tell you the number of times I have had this conversation.  The body is shutting down and no longer needs food. Lack of appetite is part of the natural dying process. Excess fluid intake can cause more distressing symptoms at the end of life. It is okay not to eat.  No need to force feed someone who doesn’t want to eat.  But the other side of the conversation is so much different.  How exactly did we know he was dying, when he was so good at faking that he wasn’t? How can you ever know if you are withholding food from a person who might have months or years ahead of him? The doctors were surely no help in guiding us with a prognosis. The glass was always half full in their eyes.  Even a clearly dying man might have a chance. Their false hope kept ours alive. And even if we were now focusing on comfort, what is food, if not life’s ultimate comfort?

The last words he spoke. I am not sure what they were.  Should we have recorded them, kept them in a book for all time? Somehow I doubt it.  The last words I spoke to him.  I think might have been I love you, good bye, I’m going to work now.

The last time I asked his advice.  The last time I borrowed his wisdom.  The last time we laughed together.  The last time we worried together. The last time we grilled out or cooked together.  The last time we watched TV together. The last time he drove me somewhere in his truck.  The last time I drove him anywhere.  The last time we went to the beach or listened to music or I rolled my eyes at his black and white world view and not politically correct humor. I don’t know when any of these were. I know he had a good life and we had a good life, and the lasts are really no more important than the firsts or all the in-betweens. The sum of all the actions, I guess that’s all that matters.