Expected death

Imagine if you got pregnant, and you weren’t told anything about what was going to happen to you. Or imagine if you were the friend of someone who got pregnant, and knew nothing. Neither of you had been through it or known anybody who had been through it. You’d not read about it even. When the contractions start to happen and the water breaks, it is going to be pretty scary. When the baby is born, you’ll both be freaked out.

But if you know what to expect – if you know that it is normal – then you’ll know what to do. You’ll stay calm and handle it.

Death is like that too. There are certain identifiable things that happen, and they are only scary if they aren’t known. They are different from how things are otherwise, and because they are different they can be unsettling. But they don’t have to be.

We’ve medicalized birth and death in Western society, and it is to our loss. We’ve forgotten what it is to go through these natural human experiences. We used to see birth and death in our homes, because we would all live together as a family, several generations together. We didn’t go to the hospital to give birth or die, with strangers or alone.

There are plenty of fine articles online where you can read up on the signs of death, so I’m not going to repeat their information. I will tell you that the more you learn, the more you’ll make a difficult situation easier.

Not learning about it won’t make it not happen. It will just make it harder when it does happen.

What hospice is and isn’t

I like the idea of hospice. They are trained for care, not cure. They help a person die a natural death, rather than unnecessarily prolonging life. They don’t do assisted suicide, but they don’t do feeding tubes and ventilators either.

But I don’t like it in a way. I don’t like that there has to be a division between them and the rest of the medical profession.

I have a friend who trained to be a nurse. She learned nothing about what the dying process is – what the signs are, what is normal, what to do. She’s asking me what the signs are, what happens.

There is also a misunderstanding about what hospice does. When my Mom was dying, I assumed that the very infrequent visits from the hospice team were because we were on Tenncare. I was used to us getting the short end of the stick, the last of the loaf. I was used to having to sit in clinics for hours for treatment for everything. So seeing a nurse for about thirty minutes every day seemed par for the course. Having a “bank” of time for a sitter seemed normal too. There was a total of 20 hours I could use, so I had to be careful how I budgeted it.

Turns out that is the way it goes. From reading up more, and from the stories from my mother-in-law having hospice care, we weren’t unusual.

When you call hospice, they are there to help, but the family members are the primary caregivers. They are drafted into service, shanghaied even. They do most of it. The nurses come by to change medicine if necessary. The rest of everything? That is on you.

They don’t sit with the patient 24 hours a day until they die. They don’t check them into a specialized hospital and care for them. It is on the family to do the heavy lifting, literally and metaphorically.

They might provide a handbook that helps. If you are lucky, all the pages are there. Sometimes they aren’t. Fortunately, these days, you can look up “Signs of death” online and get a lot of helpful advice.

Ideally, all nurses and doctors would understand that death isn’t something to be feared. It is a natural part of life. It is only scary if it is unknown – like everything else. Fear comes from ignorance – learn as much as you can and you’ll not be afraid.

Evil spirit?

So God is supposed to be all good, right? But what about these verses – God sends “evil spirits” to rile people up, to make bad things happen. Maybe there is something more to all of this. All Bible quotes are RSV.

There were a lot of judges in Israel before they had kings. Somebody had to make decisions. But then it seems that every now and then God stirred things up. Control was taken out of their hands.

Judges 9:22-25
22 Abim′elech ruled over Israel three years. 23 And God sent an evil spirit between Abim′elech and the men of Shechem; and the men of Shechem dealt treacherously with Abim′elech; 24 that the violence done to the seventy sons of Jerubba′al might come and their blood be laid upon Abim′elech their brother, who slew them, and upon the men of Shechem, who strengthened his hands to slay his brothers. 25 And the men of Shechem put men in ambush against him on the mountain tops, and they robbed all who passed by them along that way; and it was told Abim′elech.

Then God made Samson want a woman who was a Philistine just because God wanted to stir up a fight between the Philistines and Israel. God knew there would be a fight at the wedding.

Judges 14:1-4
Samson went down to Timnah, and at Timnah he saw one of the daughters of the Philistines. 2 Then he came up, and told his father and mother, “I saw one of the daughters of the Philistines at Timnah; now get her for me as my wife.” 3 But his father and mother said to him, “Is there not a woman among the daughters of your kinsmen, or among all our people, that you must go to take a wife from the uncircumcised Philistines?” But Samson said to his father, “Get her for me; for she pleases me well.” 4 His father and mother did not know that it was from the LORD; for he was seeking an occasion against the Philistines. At that time the Philistines had dominion over Israel.

Then God sends an “evil spirit” to King Saul, which stirs up problems between him and David, who God has chosen in his place to be king.

1 Samuel 16:14
14 Now the Spirit of the LORD departed from Saul, and an evil spirit from the LORD tormented him.

Here’s another example of God sending an “evil spirit” upon Saul.

1 Samuel 18:10-11
10 And on the morrow an evil spirit from God rushed upon Saul, and he raved within his house, while David was playing the lyre, as he did day by day. Saul had his spear in his hand; 11 and Saul cast the spear, for he thought, “I will pin David to the wall.” But David evaded him twice.

The same thing happened to Judas. He wasn’t betraying Jesus because he wanted to –he was made to do it by forces beyond his control. Satan, the very definition of an “evil spirit”, entered him.

Luke 22:1-6
Now the feast of Unleavened Bread drew near, which is called the Passover. 2 And the chief priests and the scribes were seeking how to put him to death; for they feared the people. 3 Then Satan entered into Judas called Iscariot, who was of the number of the twelve;4 he went away and conferred with the chief priests and officers how he might betray him to them. 5 And they were glad, and engaged to give him money. 6 So he agreed, and sought an opportunity to betray him to them in the absence of the multitude.

Here’s another take on the same scene.

John 13:21-27
21 When Jesus had thus spoken, he was troubled in spirit, and testified, “Truly, truly, I say to you, one of you will betray me.” 22 The disciples looked at one another, uncertain of whom he spoke. 23 One of his disciples, whom Jesus loved, was lying close to the breast of Jesus; 24 so Simon Peter beckoned to him and said, “Tell us who it is of whom he speaks.” 25 So lying thus, close to the breast of Jesus, he said to him, “Lord, who is it?” 26 Jesus answered, “It is he to whom I shall give this morsel when I have dipped it.” So when he had dipped the morsel, he gave it to Judas, the son of Simon Iscariot.27 Then after the morsel, Satan entered into him. Jesus said to him, “What you are going to do, do quickly.”

So what’s going on? This is pretty wild. God isn’t what we thought. What does this say about God and the nature of God?

Are we willing to let God use us like this? This is some hard stuff – wars being waged, innocent people being attacked and killed. All because God makes it happen by sending an “evil spirit”. God is in control of evil spirits? God is in control of everything.

What does this say about “free will”? It is out of the window. These people didn’t decide to be angry or crazy or start wars or betray a friend.

What does this say about bad times, about wars, about people attacking innocent people? David and Jesus were both innocent. They didn’t deserve to be attacked. They’d done nothing wrong.

Perhaps that is it. We need to trust that everything is part of a plan that we can’t see. The more we fight against it, the harder it is for us.

Maybe that terrorist, that road-rager, that narcissistic manager, that abusive parent is part of the plan. Maybe an “evil spirit” entered into them. Who knows? We can’t know. That is part of the problem. We want to see the whole picture, and we can’t. We don’t have the capacity for it.

God says that God is the Alpha and the Omega – the beginning and the end at the same time. We can’t comprehend that. It is like trying to play a DVD on a record player. Our technology, the human brain, lacks the capacity to process things like God does.

(All Bible quotes are RSV.)

You have to ask.

I don’t want to go to the hospital to watch my mother in law die. I will if I have to. I will if I’m asked. But I’m not going to second-guess my husband. I’ve spent ten years trying to guess what he wants, and doing things for him without him asking because it seemed like he needed me to. He seems to appreciate it, but I don’t think it is doing him or me any favors.

I’ve stood on this one.

Now may not be the nicest time to insist that he “use his words” but now is the time. He has to learn how to find his own voice, to know what he wants, and to ask for it. He also has to know how to say no to people and make decisions.

Part of making decisions is making bad decisions and standing behind them.

He’s made a hard decision recently, and we all supported him. Now it seems like he is going back on it, so he’s losing ground. Waffling, second and third guessing himself is part of his family inheritance. He’s going to lose face over this, and that is going to crush him. Yet another failure to add to the pile. I’m afraid that he’ll never stand up and make a hard decision again.

In part I’ve stayed away because I don’t want him to lean on me. I want him to stand on his own and make the hard decisions. I want him to grow up. I want him to become an adult. Having to ask other people’s opinions and approval all the time is not a sign of maturity.

This was going to be his crucible, his make-it-or-break-it moment.

I feel helpless, waiting around the house. I’ve done rituals and said prayers. I’ve done what I can to process this experience in a safe way so that it doesn’t hurt me. It is bringing back some memories from when my Mom died.

It has been since Wednesday night. Chaos, crisis, upset. Panic mode, emergency time. It is Sunday now, and she’s still alive, barely. I’m a little angry at her now, and I feel very selfish about it. She’s wasted our long weekend off together. Sure, there is some kindness in all this happening during non-work time, but it is still vexing.

This isn’t kind to say at all.

And it is very honest.

This isn’t life, her hanging on. It wasn’t life before, either. Home decorating isn’t giving back to the world. Vanity, selfish, image conscious – both of them. They just amplified each other’s narcissism until it became pathological. There was nobody to say “No”, so the psychic disease grew.

Her sons have spent more time with her now than she ever spent with them when they needed her. They’ve made sure she was better treated than she ever cared for them.

She wasn’t bad, or evil, but she wasn’t good either.

What an ugly death, and a bad situation. What a terrible legacy to leave.

And I’m angry at the medical establishment – we show more mercy to dogs.

Half life

We’ve all been living a kind of half life recently in my family. For the last few days, we’ve been waiting for a member of the family to die. What the nurses thought would be minutes or hours has turned into days.

There is no hope of a cure.

This isn’t life, and it wasn’t one before that.

Life is more than being alive. It is about being independent and about giving back. It is about being generous with your time and your talents. It is about having enough to keep yourself going and more to help others with.

Whether you are old and on your death bed, or you are in the prime of your life, the same rules apply.

I think about the story I read in “All Creatures Great and Small” about the vet who went to put down a farm dog. He’d gotten very sick and was suffering. He’d reached the end of his usefulness. The vet gave him the medicine, and after a day, he wasn’t dead. He was recovered. He needed some time to sleep deeply, and then he pulled through and was his old self again. He was back on the farm, working, in a matter of days.

I think about the person I knew in high school who was miserable and tried to kill himself. He didn’t succeed. He ended up damaging himself just enough that he had to be put into a nursing home. He never was able to take care of himself again. He required constant care. His bad situation got worse.

I think about a lady I know who is pregnant. Her belly is so big it looks like she is carrying a one year old. She should have given birth weeks ago. She’s tried everything to get the process started.

I think about the story I read in “Spiritual Midwifery” about a lady who was having a hard time giving birth. The midwives asked her if there was anything she was worried about, anything that might be preventing the baby from coming. The mother was worried about the father being a good provider. After they had a talk about it, she relaxed and opened up and the baby came. It needed to know it had a safe place to come to.

Why am I talking about birth while I am talking about death? Because they are the same in many ways. They are a transition, and they can’t be hurried. Well, you can give medicine to speed up contractions, and you can do a C-section. But generally, those happen once the labor process has already started, and that you have to wait for.

We’ve all put our lives on pause recently, some of us more than others. It has been a sort of negative holiday. Clothes aren’t being washed. Dishes aren’t being done, cooking happens in spurts. Meals are on the go. Naps take precedence over actual sleeping. Trips away from the house are short, and the phone is always on.

With a baby not coming, with a family member not dying, it is all a huge wait. It is delaying the inevitable. Waiting until the time is right just makes it harder on everybody else.

Maybe it isn’t about her, but about us. Maybe we aren’t ready for it. You never are, really. It is going to be a big mess to undo all of this once she dies. But her delaying it isn’t going to make it easier. If she somehow makes it out of the hospital, she can’t live on her own. She’s proven that in the past few months. There is only so much money to pay for caregivers. There is only so much time that can be taken away from work before they start to think about firing you.

It is selfish of her to hang on.

This sounds very mean and heartless.

In the past few days I’ve really been angry with her for not accepting that she is dying, for not accepting “what is”. Meanwhile, I’ve not been accepting “what is” – because “what is” is what is happening right now. This in between state, this flux, this not going on to the next step, is what is.

Do I want her to die for her sake, or for ours? Maybe a little of both.

Advice to caregivers

Your life is not your own when someone that you love is sick. When you are the caregiver you have to change everything you do. It is kind of like living under siege.

You have to make sure that your car never goes below at least a quarter tank of gas. In fact having half a gas or more at all times is really useful. You have to make sure that you have an overnight bag packed in your car or at least in your house at all times. You’ll need a two or three day supply of clothes. Actually, having it packed in your car is better because you might get the call from a nurse while you were at work, and you don’t have time to go home and get your supplies. You have to make sure that you have a three day supply of medicine with you at all times too.

You can’t leave any of this to chance or to the last minute. Taking care of someone who is terminally ill is a lot like living in a war zone. You have to do what you can when you can. There is no guarantee of any other chance to relax a refresh yourself. You have to take care of yourself so you can take care of them.

You can’t do without food. Eating snacks and drinking sodas doesn’t count. Nothing from a vending machine is food. You have to make a point of eating real food, even if you don’t feel like eating. In fact, you won’t feel like it, but that doesn’t mean you can do without it. Cars have to have gasoline in them to go. Bodies need food. Skip all sugars and caffeine – they will make you crash.

You’ll need to make a point of getting as much sleep as possible. This doesn’t mean oversleeping. But take the time to sleep when you can. Sleep is restorative.

Get exercise – go walk up and down the halls. Stretch.

Take a notebook and write. Writing helps process feelings and gets them out. Writing can help you understand what you are thinking.

All of your own personal chores have to be dealt with immediately. Don’t leave the mowing for another day. Don’t leave doing laundry for another day. You don’t have another day. That day is when you get called to go have to take care of somebody else’s problem.

You have to keep your own head above water before you can rescue someone else. If you’re not very good at swimming and you try and rescue someone else you will both drown.

You have to be able to shift gears. Sometimes the problem is shifting out of this emergency mode once you return to normal. Nothing is ever the same after you’ve taken care of someone who is dying. It’s like you had to grow an extra arm. So you don’t really know what to do with it once everything is back to normal. And of course it never is normal once they die. You are without someone you cared for.

Being a caregiver to a parent when the relationship was bad is extra hard. They have not taught you how to take control. They have not taught you how to be an adult. They have taught you your whole life that your opinion doesn’t matter. They have taught you your whole life that whatever you think is not okay. So now you don’t have the legs to stand on to take care of them. You can’t ask them what to do because they have reverted into being like a child. Now you have to be the adult, and you’ve not had any practice at it.

Death is the other side of birth

Our culture is so squeamish about death. Death is just the other side of birth. But we hide that too. We do both with strangers, in hospitals. We used to do them in our homes, with our friends and family. Both used to be a normal part of life. Now they both have been taken away from us. Or rather, we’ve given them away.

Just like people are starting to get the idea that a home birth can be a safe and fulfilling experience, so too can death. These aren’t medical procedures. There isn’t anything wrong. They don’t need doctors or nurses. They need trained helpers, midwives.

Fear comes from ignorance. Learn everything you can and it won’t be scary. Don’t know how to find the information you need? Go to the library. That is what the librarians are for. Google “Signs of death” and you’ll find helpful stuff too.

There are signs of approaching death, just like with an approaching birth. They are only scary if you don’t know them.

Fear of death just makes it worse. It isn’t a failure. It is natural, and it happens to everybody and everything. It is a transition.

It is leaving this body. The body is just a vehicle for the soul.

Nurses don’t get this. Doctor’s don’t get this. They are worried about giving an overdose of pain medicine to a terminally ill patient.

Why do we show more mercy to a dog than a person? Why does the person have to suffer to the bitter end?