Baby in reverse.

Taking care of a dying person is like taking care of a baby, but in reverse. They become less and less able to take care of themselves. They spend more and more time asleep. They start to make less sense.

It is important not to be afraid by these differences. This formerly active and vibrant person that you knew is changing right before your eyes. She will show less signs of being interested in anything other than what is happening right in front of her.

It isn’t anything personal. It is simply a normal part of the dying process. Consider that it is like hypothermia. When the body gets very cold it will conserve all of its energy. The body will automatically start taking energy and heat away from the extremities. Death is like that, but it is social and spiritual.

It is a time where they withdraw from their external activities and all of their attention and energy is refocused and re-centered. They will begin to show less and less interest in their friends and in their family. They may have unfinished business they feel that they need to do. And they may start trying to control things more. This is a normal behavior for people who have felt very nervous throughout their lives. People tend to die the way they live.

You may see a dying person “working”. They are working in any way they can. They may pick it their bedclothes. They may move things around. As long as they are not doing anything dangerous let them continue to do it.

Dying people may see people from the other side. I do not believe that these are hallucinations. I believe that they have one foot in this world and one foot in the other. Again, as long as they are not causing any harm to themselves let them continue. If it is not making them anxious, there isn’t a problem. Do not argue with them. You do not want to agitate them. You want them to have as easy a transition as possible.

When my mom was dying I saw my helping her during this time as my gift to her. She took care of me when I was a baby and when I was sick. I figured that it was my duty to take care of her when she was dying. Fortunately we had a good relationship, so that made it easier.

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Signs of death.

A natural death doesn’t happen like it does in the movies. It is a slow, gradual process, and it is fairly predictable. It is all normal – but it isn’t normal to you if you haven’t seen it. Reading about it will make it easier to deal with.

The main goal is to keep the person comfortable and for you to remain calm.

These are some things that are likely to happen. Every person is different, so these may happen in a different order, or not at all. I have compiled these from various sources online and my own personal experience with dying people.

Be advised – the dying process can take around a week.

—- Loss of appetite
The person’s energy needs lessen. She may not want to eat, or want to eat only simple foods. Follow her lead, and offer liquids at least. You can use a lip balm on her lips to keep them from cracking.

—–Excessive fatigue and sleep, and increased weakness.
Because of her lessening energy needs, she will sleep more and more. Do not rouse her unnecessarily. Assume that she can hear everything that you say.

Do not talk about her in the same room.

— Mental confusion or disorientation
The person may not be aware of where she is or what is happening. Remain calm. Let her know who you are. Speak gently to her.

She may see people who aren’t there, especially people who have passed on before her. Do not argue with the person about this. This will make her agitated. She has one foot in this world and one in the other. What she is experiencing isn’t unusual – it is just something you aren’t experiencing. This doesn’t mean it isn’t real.

She may pick at her bedclothes. This “work” represents unfinished business. As long as the person is safe, let her do this.

— Breathing changes
It will get harder and harder for her to breathe. Oxygen may help with this, and sometimes a gentle fan blowing on her face will help too. The goal is to make the person more comfortable and relaxed. The person doesn’t need as much oxygen as before.

Later on, her breath may change to something known as Cheyne-Stokes. She will not breathe for a bit, and then sge will breathe in suddenly, gasping. It is distressing to hear, but not for the dying person.

Around this time the person will have difficulty swallowing, and there will be increased secretions in her throat. It will sound like gurgling or like marbles are rattling around. This is what is called the “death rattle”.

One option that I’ve seen is to use a Scopolamine patch. It will dry up the secretions, as a dry mouth is a side effect. These have to be prescribed.

It may help to have the person propped up or have her head tilted slightly to the side.

It is believed that the person is unaware and unaffected by the secretions and the different breathing.

—–Social withdrawal
The person may not be interested in doing anything with anyone. This is a very intimate and personal time and requires a lot of inward focus. Don’t take it personally if she doesn’t want to see you. Dying is hard work. However, she might be interested in some company, but not be able to reply.

Some people may get to the point that they can only answer yes/no questions. Be mindful of this, and change your interactions accordingly.

Sometimes there might be a burst of energy a few days before the person dies. She has saved up her energy and then it will appear that she is going to get better. Cherish this experience if it happens – it is fleeting.

—-Changes in urination
There will be less and less urine, and it will be more concentrated. Hospice may choose to use a catheter to keep the bed unsoiled. Loss of bladder and bowel control is normal.

—-Swelling in the feet and ankles
This is a natural result of the kidneys slowing down. This is normal.

—-Changes in the extremities.
Just like when the body gets colder, the extremities start to lose circulation minutes or hours before death. Hands and feet will become cooler and paler (or bluish) The veins may become mottled.

Talk with the person gently and calmly. Assure her that she is loved, and that you will remember her. Let her know that her life mattered. She needs to know that you will be able to go on without her.

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?

Recovery, auto-pilot, and Jesus

I keep trying to worm out of being a servant of Jesus.

So, should I visit my mother-in-law, who is in the hospital? Jesus says yes, that is on the list of things I should do. No question about it.

But what if I really don’t like her very much? Jesus says to love your enemies.

What if I just intend to visit? Nope, doesn’t count. He’s pretty firm about this.

And I say that isn’t fair. It doesn’t take my feelings and needs into account. She’s really not that easy for me to be around. It isn’t her physical sickness that is the problem. It is her life-sickness, and I don’t mean the fact that she is dying. I mean the fact that she never lived.

I’m not very good around people with problems. Sadly, that is a lot of people. I can barely put up with my own problems, much less carry someone else’s. I have taken classes on how to be around sick people in a healthy way – a way that is safe for them and for me. I still don’t know what I’m doing.

Sometimes sickness isn’t just germs. Sometimes it still spreads anyway. Sometimes a person’s mental sickness can drag you down just as surely as a drowning person is a danger to a lifeguard.

I “hide” people from my newsfeed on Facebook who are very needy and broken. I can’t read about their constant boyfriend troubles, or addictive behavior, or sinus headaches. I think, save the whining for something real, like a broken leg or a divorce. Constant complaining isn’t something I can handle.

If a friend is constantly saying how drunk they are or how they couldn’t stop themselves from eating a whole bag of Lay’s sour cream and onion potato chips and two Oreo Blizzards from Dairy Queen, they get hidden. I don’t want to read this. Because the next posts are always about how sad they are that they have gained weight, and they don’t have a boyfriend, and they feel miserable.

I can’t watch people drown.

It reminds me too much of myself.

I remember those days. I remember feeling lost and stuck in that cycle. I remember feeling like life just happened to me, that I was a passive agent. I remember not liking myself very much.

I’m grateful that I started to wake up and take care of myself. I’m grateful that I learned what it took to build up my flame.

I’m far enough into my recovery that there isn’t a great risk (there is always a risk, don’t fool yourself) of a relapse. Recovery isn’t just about getting over abusing drugs. It is about getting over abusing the gift that is life. Not exercising, eating poorly, feeling like life just happens to you – these are all addictive, mal-adaptive behaviors. These are all ways of not dealing with the situation at hand, and the situation is life.

Someone who is new into recovery can’t really go into a bar safely. Someone who is long in their recovery could go in for a bit, but there is still a risk of taking a drink.

Being around needy, broken people is my bar.

I want to fix them. I feel helpless watching them fail and fall. I offer advice, and they don’t want it, they ignore it, they get angry at me. I want them to be free of their pain. I want them to live.

My addiction is sometimes named codependency. It manifested as not taking care of myself. I smoked pot so I wouldn’t feel other people’s pain. I had started to take it into myself, to name their pain as my own.

Some people would say that my problem is that I’m empathetic. How is that different from codependency? If I feel that your feelings are my feelings – that isn’t just empathy. That is a lack of boundaries. That is codependency. Even if the other person isn’t “dependent” on a drug, you can still be codependent with them. If you feel like you are responsible for their feelings, happy or sad or in between, then you have a codependency problem, not an empathy problem.

Mislabeling someone as an “empath” just delays the healing, because the disease is misdiagnosed.

So back to whether I should visit my mother-in-law.

I want to rescue her, to give her healthy attitudes towards death. She’s dying, really. She may or may not have come to terms with this. I doubt it, having noticed her prescription for an anti-anxiety drug recently. Sadly, that is the Western medical way of dealing with anything – there’s a pill for it.

I was the one who counseled my Mom on death, who talked her through it. I was her midwife for death. Thankfully, God had lead me to read certain books the year before I needed them, before we even knew she was going to get sick. Thankfully, I had the balance in my head and in my life that I could talk her through how to land this plane that is life – how to land it safely on the ground and not crash.

Because that is what this is.

So many people fly through their lives on autopilot. They get in, and they go where everybody else is going because they haven’t thought about it. They do what everybody else is doing because they haven’t thought about it. Then, when things get so real that they can’t ignore them anymore, they go up to the cockpit and learn the pilot is gone.

They have to fly the plane themselves. And they don’t know how. They’ve spent their whole lives letting someone else fly their plane. Now it has gotten real, and now they are on their own.

They often freak out. Sometimes they manage to figure out how to work the radio and call for help. Nobody can fly their plane for them, but they can talk them through how to do it, as long as they are calm and focused.

Sometimes they have enough energy to fly on their own, to fly to safety. Sometimes they have enough energy, enough power, to fly anywhere they want.

But sometimes, the plane is almost out of fuel, and they have to land.

Death is landing. You can either do it easy or hard. You can coast in gently, or you can crash and burn.

I had to do this for my Mom. I had to talk her through this. I had to be the person in the radio tower. I had to because I lived with her. It affected me. Her freaking out spread a foul odor throughout the house, colored the air, set off air-raid sirens.

But this lady? I don’t see her. She isn’t here. I’d have to go into that battle-zone. I’d have to voluntarily enter into that lion’s den.

And she hasn’t called for me.

She cries that I don’t visit, but not to me. Other relatives think I should visit, should “make peace”, but she hasn’t asked me to visit. They don’t say anything to me, but to my husband. Nobody is talking to me. But that makes sense, because nobody has been listening to me all along anyway.

There isn’t a war. I just can’t be around this madness.

Over a year ago, when she was first diagnosed with pancreatic cancer, with a year at most left, I asked her what she wanted to do.

Her answer? “Live”.

I said “Of course, but that isn’t an option. Say you were going to go on a vacation for a week, and there were all sorts of things you wanted to do, but only time to do ten of them. You have to pick what you want to do. Your time is limited. Think about what are the most important things you want to do, and do them.”

There is a difference between being alive and living.

Her answer? She wanted to decorate the house. She’d spent her whole life decorating her house. There were over forty cans of paint left over – gallon cans – when she and her husband moved from Georgia to here.

I gave up.

Over seventy years old, and she has nothing to show for it.

What else does Jesus say? “Let the dead bury the dead.”

The escape artist.

It was a very hard time when my Mom was sick. There were a lot of very difficult things that needed to be done, and only me to do them. I was in my early twenties and my family and friends had bailed on me.

I wasn’t prepared for any of this. My Mom wasn’t supposed to die at 53. I didn’t know how to deal with chest tubes or administering medicine every four hours for months at at a time. Just because I’m a daughter doesn’t mean I’m a competent caregiver.

So I separated myself. I believe it is called dissociation. I was there, sort of. I did all the stuff that had to be done, but I didn’t think about it. My mind wasn’t there. It was too hard to deal with but I couldn’t run away from it like my brother and father did. So I ran away in my mind. It was kind of being like an escape artist, like Houdini. I smoked a little pot to take the edge off. Years later when I had the time I went a little crazy because I’d not had the ability or time to grieve. There is nothing like learning how to deal with grief like being in a mental hospital.

There isn’t any training for this. It is hard enough to watch your mother die. It is hard to be a caregiver for someone who is dying. It is impossible when the dying person is your Mom.

It is very intimate caring for someone who is dying. It is very intimate to be with them in the middle of the night when they start freaking out about all the things they haven’t done, or about the afterlife. It is very intimate dealing with bodily fluids and pain.

In a way it was my gift to her. She gave birth to me. I helped her die. There is a strange balance here.

She didn’t die well. She had spent most of her life avoiding thinking about the future or anything really important. She didn’t plan ahead. She had no retirement fund. She didn’t take care of her health. She never got any education past high school. As for her soul, she ended up getting her religious education from me.

It is very weird being your mother’s teacher. I had read quite a bit about religious matters in the previous years, and had returned to church at 20. It was the same church where she was married, but hadn’t gone to since. The minister I found for her was from the Episcopal student ministry I was part of. He didn’t know much about how to prepare someone for death, so I got to do it. Something was better than nothing. At one point I gave her a copy of Stephen Mitchell’s “The Gospel According to Jesus.” The priest thought it was watered down. He didn’t approve of that translation. He wanted her to read the Bible. I pointed out that she didn’t have time to read the original. Sometimes you aren’t able to eat big meals, and all you can handle is baby food. This was the Gospel in a distilled version, just the words of Jesus. Easy to digest. Baby food. It got the point across in a way she could handle.

But there was nobody there to train me. There was nobody around to tell me how to deal with the heaviness of my Mom dying and the heaviness of dealing with the strangeness of dealing with the very real and very gross nature of dealing with someone who is terminally ill. I prayed a lot. God helped.

One “friend” wrote to me to tell me how sad she was that my mother was dying. Her advice to me was to “let Jesus into my heart”. I can’t stand Christians sometimes, and I am Christian. I was really angry when I read that letter. She didn’t know that I’d gotten confirmed years earlier. She didn’t know that I went to church every week on my own. She didn’t know that I’d helped create the Episcopal student ministry. She didn’t know because she didn’t ask. She’d been a friend in high school but we’d grown apart. She assumed that the answer to my problem was Jesus, not knowing that I was already a Christian. She would have taught me more about Jesus if she had shown up and helped. “Letting Jesus into my heart” didn’t get the laundry done or the groceries bought. “Letting Jesus into my heart” didn’t help when my Mom needed more pain medicine or a Valium at four in the morning.

Houdini died from being punched in the stomach. He had a trick that he did where you could punch him in the stomach as hard as you wanted and he wouldn’t be hurt. The deal was that he had to prepare for it first. He had to know it was coming. The person who punched him the last time didn’t know about that and just hit him.

We are like this. We need time to prepare for heavy things. We can handle quite a bit if we have some warning and training. But when we get blindsided, we can get really hurt.

This experience didn’t kill me, but it did teach me a lot. It taught me about my own strength. It taught me that there were a lot of people I couldn’t depend on. It made me grow up fast, a little faster than I was ready for.