Stages of Grief: anger

I am thinking of the songs that comfort me in grief.

And thinking about the stages of grief. Five, right? Denial, Bargaining, Anger, Grief and Acceptance. My sister said, “They left out Revenge and Acting Out. ” She died of cancer in 2012 at age 49. Six days after her birthday and the day after mine.

Anger songs for grief. But denial is first, right? Not necessarily. These are not stages you move through in a certain order. This is more like a spiral, where you go from one to the next and back to the start, from day to day or even hour to hour.

I’ve already written about My Name is Samuel Hall. That is an angry song, unrepentant, that my sister wanted the last time that I visited her. I knew that she was furious about dying and leaving her husband and daughter. And me and her friends.

My mother sang:

“Nobody loves me, everybody hates me, I think I’ll go eat worms. Big fat slimy ones, little tiny wiggly ones, see them wiggle and squirm. Bite their heads off, suck their guts out, throw the skins away. I don’t see how anyone can live on three meals of worms a day… without dessert….”

She also taught us this:

“I don’t want to play in your back yard
I don’t like you any more
You’ll be sorry when you see me
Sliding down my cellar door”

My parents had songs for every mood I can imagine. There were moods they would not speak about but they sang them.

My favorite angry groups are The Devil Makes Three, Hank Williams III, The Offspring, and Sweet Honey in the Rock.

Sweet Honey in the Rock? Yes. They sing about death a lot. This song is not about death: it’s about a “bad” woman, wanted dead or alive. But listen to the song: they are singing about a real event and a woman who fought back against a rape. On the thirty year album of Sweet Honey in the Rock, the group says that their first “hit” was this song, played by news stations. “It was a hint that we were not going to be top 40.” The song is Joanne Little.

So here are three songs by the others:

The Offspring: Why don’t you get a job?

The Devil Makes Three: All Hail

Hank Williams III: My Drinking Problem

And how do families show anger? They fight. They fight with each other. They fight about how someone should die, what should be done about mom, whether dad can live alone any more, about the right way to grieve. They fight about small things or big things and they even sue each other. Before you wade into the fray, step back. Remember, families grieving are always a little bit insane, very stressed and it’s all grief.

Hank Williams III: Country heroes

Blessings on the people I know in hospice right now and on their families and loved ones. Third one today. Sending love.

 

 

 

Songs to raise girls: My name is Samuel Hall

The last time I visit my sister in hospice, my cousin is sitting by the bed when I arrive.

My sister looks terrible and like she is suffering. She is in renal failure and her eyes are slitted against the light. She is in a hospital bed and barely eating. It takes me three days to figure out how to make her comfortable.

But when I first arrive, I say hello and hug her. She laughs and it is dark.

She doesn’t want to talk. “Shall I sing to you?” I ask.

She nods.

I start singing a lullaby: I gave my love a cherry.

She shakes her head: no.

I study her. “How about Samuel Hall?”

She smiles and nods.

“My name is Samuel Hall,
Samuel Hall, Samuel Hall.
My name is Samuel Hall
And I hate you one and all
you’re a bunch of buggers all
damn your eyes, damn your eyes
you’re a bunch of buggers all
damn your eyes.”

Another song to raise girls. We adored it, because it is unrepentant, horrible and had swears.

I killed a man tis said
and I left him there for dead
with a bullet in his head
damn his eyes

My cousin’s eyes widen. “I haven’t thought of that song in years.” he says. He starts singing along, remembering.

They took me to the quod
They left me there by God
With a ball and chain and rod
Damn their eyes

My cousin has two children. I guess he is not raising them with the dark songs we were raised with….

The preacher he did come
And he looked so goddamn glum
As he talked of Kingdom Come
Damn his eyes

My sister is smiling, eyes slit against the light, angry.

The sheriff he came too
With his boys all dressed in blue
They’re a bunch of buggers too
Damn their eyes

To the gallows I must go
With my friends all down below
Saying “Sam, I told you so.”
Damn their eyes

I see Nellie in the crowd
I am shouting right out loud
I shout “Nellie, ain’t you proud!
Damn your eyes!”

“Let this be my parting Nell
Hope to see you all in Hell
Hope to Hell you sizzle well
Damn your eyes!”

And my sister laughs and then she sleeps for a while, angry, angry at death.

My name is Samuel Small: http://www.wtv-zone.com/phyrst/audio/nfld/02/sam.htm
My name is Samuel Hall: https://www.youtube.com/watch?v=iSpk1t4WYNY
My name is Samuel Hall: https://www.youtube.com/watch?v=pxiPCw21T-w
and Johnny Cash: https://www.youtube.com/watch?v=Ss_KyPfM1es

This is not the suffering photo. I can’t bear to post that….

Four myths about death

Currently I see myths about death and dying in the United States. These myths are very strong and lead to a disconnect between medical personnel and non-medical. The medical personnel talk about end of life and want the answers to certain questions. But we often fail to address the persons deep fears and concerns because medicine sees them as myths, and so there is a disconnect between what the patient and the medical person see as important about the discussion of death.

Here are the four questions and fears:

1. How can I avoid being kept alive on a machine?
2. How can I avoid dying in pain?
3. How can I avoid having too much done, too many resources used, and dying in a hospital?
4. How can I avoid dying of starvation or thirst?

1. How can I avoid being kept alive on a machine?

The myth here is that we can keep someone alive on a machine. We almost never can. Comas are extremely rare. There are a very few people who survive a high spinal cord injury, like Christopher Reeves, and can be kept alive for a period on a ventilator. Or people with a disease that leads to the failure of the breathing muscles: Steven Hawkings with ALS has outlived all predictions.

But for the most part we can’t. I have tried: I have had two patients in 25 years with brain death who had signed organ donor cards. When brain death is established, an organ donor team will fly in to a rural area. Meanwhile, I was to attempt to keep the patient’s body alive. One lived long enough and the other did not. I could not stop the death with machines or drugs and that person was already on a ventilator.

Part of this myth is fear relating to hospital settings. ICUs, intensive care units, frighten people. There are alarms going off and machines with blinking lights and it is brightly lit and quiet and alien. Why? If a person is on a ventilator, they are sedated. Otherwise they will automatically pull the breathing tube out or the urinary catheter or the iv or all of them. It is instinctive. They are sick, may be delirious or injured, they are not in their right minds, they are not logical. So they are sedated. Most of the alarms are rightly ignored by the nurses: most alarms are going off because the patient has moved and the machine is not picking up. The nurses learn to filter automatically which alarms are trivial and which alarms do need attention and are an emergency.

I wanted to see an elderly aunt. When I arrived, my cousin said I couldn’t because she was in the emergency room. I said that I am pretty comfortable in emergency rooms and thought I could talk my way back to see her, since I am a physician. We had to wait in the lobby for a couple of hours, but then they let me back.

Part of the drama and horror that shows up in ICUs is the family’s feelings. Family members may feel guilty or angry or afraid and they often lash out at each other. Families are both at their best and their absolute worst when someone is critically ill. I have a friend who still doesn’t speak to a sibling after their father died in hospice three years ago, because they disagreed so strongly on how he should be cared for. The hospital staff and nurses and doctors and maintenance people and laundry people and dietitians are used to families crying or arguing or even yelling at each other. We try to support the patient and the family. But we cannot make them agree and don’t try.

We will return to the “in hospital” death later.

2. How can I avoid dying in pain?

Wear your seatbelt, wear helmets, don’t drive in blizzards, change the batteries in your smoke alarm, don’t text while driving….

That seems like a joke, but not really. Accidents are in the top ten causes of death in the United States currently. People do die in pain if shot, in car accidents, in falls. If we can’t get to them and get pain medicine on board in time.

When death is coming, the fear is that we will die in pain from, for example, cancer. However, most people that I have seen dying of cancer DECREASE the pain medicine rather than increase. There are at least two reasons. One is that they want to be awake. As the kidneys fail, the pain medicine lasts longer. They may not need as much. If they are in hospice and have family present, my experience has been that they say “Turn it down. I don’t want it. I don’t need it.” They want to be awake with their family.

The second reason is that it really may hurt much less. When people stop eating and go into ketosis, some pain receptors are turned off. This is very interesting. I have been using it in clinic: my patients with osteoarthritis who try a ketotic diet say that the joint stops hurting when they become ketotic. One patient said that when her right hip stopped hurting entirely, she realized that the muscles from the left hip were very sore from limping. “After two weeks, I tried one piece of bread,” she said, “And the right hip joint pain came right back.” So a person with end stage cancer or end stage dementia, who does not want to eat, may have little pain or different pain.

Lastly, the most important pain when there is not a sudden violent death, is emotional pain. We may not want people to feel it, but it is better if we can stay present and let them. Stay present, stay kind, listen, do not shut them off. If we shut them off, it is because of our OWN fears.

3. How can I avoid having too much done, too many resources used, and dying in a hospital?

First, fill out a POLST form: Physician orders for life sustaining treatment. The first question is the one medical people want you to answer: if your heart and lungs STOP, and you are dead, do you want us to try to revive you? If someone is over 80, I don’t want to do CPR. I will break their ribs and if we DO get them back, they WILL have damage. People often say, “Bring me back if I will be ok.” I joke that we don’t have the little turkey pop up that says “Too late. Done.” But it is minutes until brain death. If you want to be revived, your best bet is to die in the emergency room in front of the emergency room staff. They can move very fast. The security guards in Las Vegas are also very very good at putting AEDs on people who drop dead from a big win or a big loss.

Living wills are better than nothing, but they often say “If two doctors agree that I am terminal within six months, no extraordinary measures.” This is entirely too vague. What do YOU mean by an extraordinary measure? A ventilator? Aspirin? An iv? No one has ever defined what an extraordinary measure is.

The other questions on a POLST form ask specifically about resources. Hopefully the medical person will explain a little: what is a ventilator, when would we use it, would oxygen be ok, are antibiotics ok, have you talked to your family about this? The POLST form can’t cover everything but it does give us an idea of what someone wants when they can’t talk to us. And it takes some of the burden off the family: father DID say what he wanted and it is in writing and he talked to his doctor about it. If you are the family, how are you going to decide what an extraordinary measure is?

Now: dying in a hospital. Our culture currently pays lip service to dying at home. Sort of. A survey of Veterans revealed THREE DIFFERENT IDEAL DEATHS. One: the Hallmark death, in hospice, at home, surrounded with friends and family making peace with the world. Two: Sudden death, no warning, no attention. Three: fight to the death. This person won’t go, will fight, a miracle is possible and they are NOT at acceptance. Do EVERYTHING.

And dying in a hospital. In residency in Portland I had two patients dying on my medicine rotation. One was a young man in his 20s, surrounded by family and friends, of HIV. He was in the hospital because that is where he felt comfortable and safe and could get immediate help. The friends asked if our team was tired of wading through a crowd to check on him each day. I replied, “No. I am so glad you are here. I have another person dying, and he has no one, an elderly man. He is alone except for me and the staff.” So we, the hospital staff, are the ones who try to comfort the elderly alcoholic dying, the cancer patient estranged from her family, the lost and depressed and solitary and addicted. And we don’t care what they did to get there, the sins committed, the regrets, the mistakes. We try to help as much as we can. I do addiction medicine in part because I felt so sad watching people with addiction die alone. So dying in the hospital is NOT a failure. Sometimes it is where the person feels safest or they don’t have anyone. And not having anyone is a failure of our culture, not of medicine.

4. How can I avoid dying of starvation or thirst?

When someone is dying of cancer or dementia or another slow disorder, they want to stop eating at some point. Sometimes the family gets them to continue eating and the patient will do so out of love for their family. They have no hunger or thirst. Renal failure sets in and the rising creatinine takes them into a gentle coma and then into the great mystery. This looks like a kind death to me: the brain is quietly sedated and put to sleep by the body, by the rising creatinine. Let them go. We will offer food and drink to anyone, but sometimes they are letting go….let them.

And here is a book I want and haven’t read yet: http://www.tc.umn.edu/~parkx032/AD-OUT-NET.html

Egg

E for egg and Easter egg. I was up very early this morning, excited about returning to work tomorrow, and am dying eggs. When my mother was in hospice in 2000, she said, “This will be the first time in 42 years that I have not dyed eggs.” My sister and I looked at each other and went to buy dye and eggs. My mother was staying in bed most of the time, but she got up and came to the dining room, to dye one egg. We hid the eggs and baskets on Easter and she watched out the window while her three grandchildren searched for the eggs. My daughter was two, niece was one and 1/2 and my son was seven. My mother died in May. I remember her every time I dye eggs.