The Donor

Jane had no reason to suspect Craig was the reason she was always sick. He was her joy. He cheered her up when she was down. He bought her flowers and turned them towards her saying she was the sunshine that they fed on. He noticed when she paused over a piece of art and bought it months later as a surprise. She often thought to herself that she’d never had such a kind and considerate boyfriend her entire life.
He never minded that she was often cranky because of the pain. The chronic feeling of un-wellness kept her up at night, made it hard to spend time with friends. Often all she wanted at the end of the day was to curl up on the sofa with a book and let her mind escape into the pages. At least there she could forget the dull but ever-present pain that ruled her days.
She drank anti-inflammatory tea by the gallon, did everything her therapist suggested, and still she had no relief. She had come to believe that pain was part of who she was, just as much as her bunions and her curly hair. She could no longer remember a time when she wasn’t at least a little achy, since a little had been a lot for so long.
It had started when she was in college, the year she met Craig. Under hypnotism much later she realized it was the very night she’d first seen him at a frat party that the aches had begun. They were mild at first, like the ache from being hung over. Then it continued, like she was getting a summer cold. Then it never left.
She had been dating someone else then, but Craig caught her eye and they had chatted. It was a few months later before she ran into him again, and by then she was single. The last relationship had left her a little sour on the idea of dating again any time soon, and she had told Craig so when he inquired. He understood and respected her space. There had been no question about it – he honestly and sincerely accepted her feelings. There was no hidden agenda of pretending to wait just so he could date her later. It was the first time in her life she’d ever felt like a potential suitor actually cared about what she wanted.
She’d decided to date him after six months, after she’d had enough “me” time and wanted “we” time again. Maybe it was the lack of pressure. Maybe the pain was wearing her down. Or maybe the hex sign he’d sketched out between her shoulder blades had done it.
She’d never noticed at the time. How could she? That evening had been a little hazy, what with the kamikaze she’d consumed. It had tasted so good on that hot summer afternoon, sitting on the front porch of the frat house. Her friend Fish, a resident of the house, had mixed it for her and it was a little stronger than she liked. So when Craig offered to give her a back rub when she mentioned how her shoulders ached, she thought nothing about how he warmed up with some delicate tracery on the bare skin between her shoulder blades. She didn’t know he had traced a sigil. She didn’t know it was a sigil of marking, of ownership. She didn’t know that his attitude of indifference afterwards was just an act. In that moment, she was tied to him for as long as he desired, and that was for as long as she was useful to him.
He had been born normal, like any other child of the Midwest. Nothing exceptional had happened that would have raised any red flags. No one would have ever suspected a thing until Bebhinn saw them together years later. She was a friend of a friend, really, not connected to either one. This made her objective, like a reporter. She was a curious about them as a couple since she’d noticed them at the Yule party three years ago. Sure, they had been at other parties before then, but this was the one where she had finally seen them, seeing the energy between them, and it wasn’t good.
Electric blue lines streamed from Jane to Craig, but none the other way. Bebhinn had seen that only once before, and it was in her native Ireland. A man had drained his wife’s life from her, bit by bit at first and then more and more as he grew hungrier and she grew weaker. The less she was able to give, the more he wanted until there was nothing left.
The town priest was secretly an exorcist. This was in spite of the official church statement that such activities were not in keeping with the rites and canons of a post Vatican 2 faith. He named the cause of the poor woman’s death, having seen it many times before in other guises in his native Nigeria.
The dire priest shortage in Ireland had meant that he’d had to transfer to this backwoods village a long decade ago. Bebhinn wasn’t pleased with the change in accent most of all, finding his heavily accented sing-song voice at odds with the native lyricism of her people, but what other option was there? So many parishes had closed or merged when their priest had finally died and not been replaced. So few young men chose to be priests these days. She should be grateful her parish’s doors were still open, even if the doorkeeper was almost unintelligible. For a while she decided to pretend that the mass was in Latin again, and just let it wash over her. After a few months she started to make some headway in understanding him. She decided to try to befriend him, to help make him feel at home in this wild, wet land, so different from everything he knew.
It was during their weekly lunches together that he confided to her that he could see spirits. She was the only parishioner he’d told and the only one he would ever tell. He knew, with the same sort of knowing that had led him into this clandestine club, that she had the same ability. Over the years he taught her all that was safe to teach a layperson. It was these skills that Bebhinn used now.
Jane had stopped going to church when she entered college, the same as many young people. Unlike them, she still had an interest in God, but didn’t have the time. Most quit because they no longer had to go as a prerequisite for free room and board. If she had continued to attend, her pastor might have seen the biggest change in her – the light slowly leaving her eyes. There wasn’t a spring in her step or song in her heart anymore. The change had come on so gradually that it would have been impossible for anyone to notice if they’d seen her every day.
Craig had been draining Jane for years before Bebhinn noticed her at that party. He was sly about it, withdrawing only tiny bits of energy at a time. He had to be sly – otherwise she might notice and leave, and then he’d have to groom another donor. For that’s what she, and at least 60 other women before her were – donors. Unwilling, unwitting, certainly, but donors nonetheless. They’d not signed a card or registered with any agency, but a part of them was being removed nonetheless.

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The hidden stress on female caregivers.

So many people are embarrassed to admit that being a caregiver is not part of who they are. That makes the whole experience that much harder. They labor along under the expectations of society, meanwhile taking care of someone who is very ill.

Women are expected to selflessly drop everything to take care of a sick relative, regardless of ability, interest, or skill. Simply being female doesn’t mean that you are also a cook, a nurse, a counselor. These are skills that must be learned. You don’t suddenly know how to care for someone who is terminally ill. Nor do you suddenly have the desire to, just because it is expected of you.

What about your income in the meantime? You don’t still get to take in a paycheck when you quit your job to care for a relative. There is the Family Leave Act – but that only ensures that your job can’t fire you for going on leave. They have to give you a job back. It may not be the job that you had, however. It also does not mean that you will get paid in the meantime. It is leave without pay.

The caregiver’s closeness to their relative is irrelevant. The mother is abusive? Father raped her? Brother stole, lied to her? Mother and father in law are dismissive and treat her like she is stupid? Doesn’t matter – your duty is to tend them, because you are a woman.

This is unreasonable.

There is a reason that my “Death Guilt” post always gets a lot of hits. People don’t talk about this stuff. We should.

When a man is well enough to go home from the hospital but not well enough to take care of himself, he’s sent home if he has a wife there. When the same thing happens with a woman, she’s sent to a nursing home to recuperate. It is assumed that the wife will know how – and be able to (mentally and emotionally) take care of him. It is assumed that a man will not. This is insulting to both sexes.

I’ve heard from people who work in nursing homes that they judge a family that doesn’t visit. They think they are selfish. They don’t know the history of the relationship. They have no way of knowing how abusive (mentally, emotionally, physically, psychologically) the person was to their family members. The effects of this abuse remain even when (if) the abuse stops. They may never go away.

Sometimes the abuse stops because the person is no longer able to be abusive – not because they don’t want to. It is far harder to hit someone when you have Parkinson’s disease. It is far harder to insult your children when you have dementia and can’t even remember that they ARE your children.

Being a caregiver should be a gift, not a demand. It should be because you want to, not because it is expected.

Just because your parents gave you life does not mean that you have to take them into your home and care for them when they get old. They chose to have you. You did not choose to have them. This is an unequal relationship.

When you marry, you marry that person – not their family. You make a legal statement that you will stay with them regardless of their health. You do not make the same promises to their parents. There is nothing about the marriage vows that obligates you to sacrifice yourself to take care of them. This is an unspoken assumption that is damaging and must be called out.

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.

Taking care of your parents when the relationship is bad

There is nothing about being an adult child that means you want to take care of your parents. There is nothing about the situation that says you even know how to.

You didn’t enter into this relationship voluntarily. Nobody asked you if you wanted to be the child of these people, and nobody asked you if you wanted to take care of them as they got older.

Just because they raised you doesn’t mean you are obliged.

What if they did a poor job of raising you? What if they were abusive? What are your obligations and responsibilities then?

Sure, there is social pressure and Christian guilt to deal with. Society expects you to drop everything and take care of these people. Forget the fact that you barely have enough time money or energy to take care of yourself.

Getting married is a legal commitment. You swear before your friends and family and a witness that you will take care of each other, no matter what happens. You make no such commitment to your parents. It is all passive. You are born into this family. You have no choice, and you haven’t promised anybody anything.

But yet you are expected to drive them around when they can’t anymore, to cook for them, to spend the night at their house when they are afraid…the list goes on and on.

Taking care of your parents is like taking care of children, but in reverse. As they grow older, they grow more needy and less able to care for themselves. As they grow older, they grow less independent and more dependent.

The really big problem is that unlike children, they remember being independent, and they don’t know how to receive help. They certainly don’t want to get help from their children, regardless of their age. They feel that something is wrong with this situation, and that they are losing control and power. That only makes the situation more difficult.

Another problem is that nobody trains you, the adult child, how to take over responsibility. Nobody tells you that now you are the parent and they are the child. So it is hard for you and for your parents.

If there is a history of abuse or neglect it is even harder.

People who had a great relationship with their parents cannot understand this.

Get me away.

It is very hard for me to be any part of the madness going on with my husband’s family right now. I write about compassion and serving people like they are Jesus. I also write about boundaries and dysfunctional families.

These two things don’t go together very well sometimes.

Dealing with them is like dealing with alcoholics. It is as if I have a friend who is a drunk. I say “Don’t drink and drive, because you might have a wreck” and they think they know better, so they drink, and drive, and total their car. And then they say “Hey, I don’t have a car anymore, can you drive me around? Or lend me money for a new car?”

They aren’t drunks. They are just needy, and manipulative, and making bad decisions. They want things done for them that we don’t have the time, energy, or money for. They want things done that I told them we would not provide, yet they are getting them anyway.

The only trips they took my husband and his brother on were of the guilt variety. Lots of abuse – physical, verbal, emotional. It is hard to muster up the desire to take care of someone who harmed someone I love. It is hard to want to help them when they have not admitted to or apologized for the damage they did. They continue to manipulate and control, even now.

And I just have to get away from all of this. It doesn’t require the skill of a prophet to see where all of this is headed.

I told them not to get a house with a yard when they moved up here. I pushed for them getting an apartment. They are both old and not as able to take care of themselves, much less a house with a yard. Plus, when they die or have to move into assisted living, that house will have to be dealt with. That mortgage will still have to be paid.

By us.

I told them that my husband barely has time to take care of our yard and house, and they said that they wanted a yard because she wanted to garden, and he needed the exercise. Neither has happened. They call my husband or his brother over to work on their yard and to maintain their house. Electrical switches, plumbing issues, hedges trimmed. So work doesn’t get done at our house.

A year ago my mother in law finally started to admit to herself that her cancer diagnosis was terminal. In the meantime, my father in law’s Parkinson’s has gotten worse, and he’s starting to get dementia.

I said they need to move into assisted living, ASAP. Nobody listened to me. They are toughing it out at their house –their house which is too big for them. That house is impressive, a show. It isn’t practical. It is bigger than they need. This is normal for them, always having to impress people, always having to have the best.

She’s in rehab right now. She passed out, hit her head, got a concussion, and broke her leg. Rehab, to teach someone how to walk again – someone who will be dead in probably three months because the cancer has spread to her lungs.

They are not thinking ahead. They are about to leave a big mess for us to have to clean up.

See? They didn’t listen, wrecked the car, and we are having to pay for it.

I’m trying to be Christ-like in this. What would Jesus do? What should I do?

But then I remember that Jesus didn’t have to deal with his parents in law, or even his parents. Jesus never got married, and died before his parents did. He raised people from the dead. He didn’t have to watch them die or bury them or sell their stuff. And he certainly didn’t have to do any of that while working a full-time job.

I finally realized that my parents-in-law or my husband or his brother, or even his wife – none of them have been the caregivers for a dying person. I’m the only one who has. I’m the only one who has also handled an estate. I’m giving advice on what to do next because I’ve been there, and they are ignoring me. They think they know better. They are pretending like this will all go away.

Meanwhile, everything that I said was going to happen has happened. I can see the train on the tracks, headed right for us.

I’m trying to stay out of it. I can’t handle any of this madness.
I hate it.
I’m angry and sad and tired.

I want to do the right thing. I also don’t want to be seen as a hypocrite – someone who talks about Jesus and compassion and service and then bails when the going gets rough, when things get real.

But there is also codependency and enabling to consider too.

If I rescue them, if I essentially say that it is OK for them to screw up their lives and drag us down with them, that isn’t being very loving.

Sometimes there aren’t any easy answers. Sometimes there aren’t any answers at all. Sometimes there isn’t a happy ending. Sometimes it just sucks.

Torn. Thoughts on #Yesallwomen

I’m really torn about the #Yesallwomen tag. It is starting to sound like an airing of grievances. I have my own list, trust me. I thought about posting it. But how will this heal us? Men and women are both feeling alienated and misunderstood and threatened. What can we do to teach boundaries and compassion and respect? How do we build a bridge? What can we as a community, as a culture, do to stop the psychic pain that causes these outbursts of random violence?

This isn’t about gun control.

It would be stupid to think that banning guns will do any good. The cat is already out of the bag. If we ban guns, then only the “bad guys” will have guns. That isn’t safer. That is actually more dangerous. I’m not saying everybody needs to have a gun either. I’m saying that it is too late to even talk about gun control. In the last two examples of mass murder a knife was used. It isn’t about guns. It is about violence. What pushes someone to the point that they kill?

We need people control. We need self respect, and respect for others. We need for everybody to learn how to establish and enforce and respect boundaries in themselves and in others.

This isn’t about mental illness either.

Involuntarily committing people just because they are odd or different is a very dangerous idea. There are reasons why people have to present a clear example of being a danger to themselves or others before they are involuntarily committed. It is to prevent someone being essentially imprisoned without cause.

If we committed every person who was different, fully half the population would be in a mental institution. Who would get to decide what is “normal”? Who would be in charge? If you vote differently, don’t make enough money, go to the “wrong” church or no church at all – you are different. In you go. Sure, the idea of committing all the “crazy” people seems like a good idea, until you are the “crazy” one, according to someone else’s standards. You haven’t done anything wrong, but they think you might.

See how this sounds?

Speaking from the perspective as someone who has voluntarily committed herself twice, mental hospitals aren’t a great idea. A mental institution is not a place to learn how to be healthy. It is not a place where you are taught good coping skills and how to deal with the “real world.”

It is more like a holding cell. It is a place where you get medicated to the point of being a zombie. Of course people stop taking their medications when they get out. They don’t see the point of them. They make them feel terrible. The medications often make it harder to be a human being, not easier.

It would be better if mental hospitals taught people how to prepare healthy food for themselves, how to choose an exercise routine they can stick with, and how to interact with other people in a healthy way. If you can’t handle life before, you certainly can’t handle it when you are on drugs that make your thinking processes fuzzy. It is better to teach people how to be people first.

We need to rethink everything.

We have failed our boys. We have failed our girls. We have failed as a culture. These no longer random acts of violence have taught us this.

How do we change? What can we do to heal this rift?

Death guilt – on the relief you feel after a parent dies after a long illness.

There is a lot of guilt that comes when a loved one dies that we have taken care of. If you have been the primary caregiver, you are suddenly relieved of the majority of your duties. You duties don’t end totally – there is most likely an estate to settle – but they change. You aren’t “on duty” constantly.

There is part of where the guilt comes in. If your loved one has been sick a long time and you have been the main (or only) caregiver, you are worn out from that constant work. Sick people take a lot of attention. They are often sick at very inconvenient times. The middle of the night is a common time for things to go south. Everything is harder to deal with when you have just a little sleep. It is even harder to deal with when that has been going on for weeks. Or months. Or years.

Very few people talk about this, but there comes a time when you look forward to your loved one dying, because that means you are free to start living. It sounds cold to say this, so people will say that they want their loved one to “pass on” or “transition” so that they can be free of pain. They want that too, of course. Part of the pain of dealing with a very sick loved one is seeing them suffer and knowing there is little you can do for them other than bring them food and fluff their pillows. Death is a release and a blessing at times.

In reality, death is a release and a blessing for the patient as well as the caregiver. When the patient dies, the caregiver is now free to live. The caregiver no longer has to stay by the bedside of the sick person. She no longer has to sleep on the sofa, hurting her back. She no longer has to call in to work, using up personal leave or vacation time (if she has it). She no longer has to do double duty of taking care of her parent’s home and her own.

There is something to be said for having families live together. The more the nuclear family explodes into satellite units, the more problems are created when a member needs help. Also, why have three households who have to buy three sets of lawn equipment, when you can have one big one that shares? I wonder if this is part of the “commune” idea. Instead of having friends living communally, start at the source and have families live that way. But I digress.

Sometimes the reason children leave the household as soon as they can is because they don’t really like their parents. Just because someone is your parent doesn’t mean that he is a good person. Becoming a parent isn’t the same as being an adult or a mature person. Sometimes “parent” just means someone who has reproduced. The parent is little more than a maladapted child himself.

Our society doesn’t speak about this very much. We laud parents. We think that parents are all knowing and all powerful. They aren’t. Nothing magical happens when they have a child. They don’t suddenly stop being neurotic or needy. In some cases their problems just get deeper and darker. So when such a parent-person gets sick enough to need help, the child is conflicted. They are expected by society to help. They are expected to drop everything and take care of their sick or dying parent. The only problem is that the abuse that the child received is often never revealed. Sometimes even the child is not aware of how mistreated she was. She just knows deep in her gut that she doesn’t want to take on this task. It isn’t because she is selfish.

It is a double bind. The child was taught her whole life to serve the parent. She was taught that she deserved to be treated badly. She was taught that her own needs didn’t matter. So when the parent is terminally ill, the child is expected to drop everything to take care of him. Then she feels conflicted.

It is hard enough to take care of a really sick person. Nurses have training for this. The average person does not. You don’t just wake up with the know-how to be a competent caregiver. When that sick person is your parent it is extra hard. When that parent was abusive it is nearly impossible.

When your parent is very sick, you have to become the parent. You are in charge. There aren’t classes for this. We don’t talk about this in Western society. I’m not sure any society talks about this, but I know this one sure doesn’t. But Western society rarely talks about anything real anyway.

For years, the child is subservient. Even if the child has become an adult and has a family and household of his own, he is expected to defer to his parents. That role never stops unless he establishes boundaries. The only problem is that there isn’t training on this, and there isn’t a lot of social support for it. If his parents die before he has established these boundaries and stood his own ground, he has a lot of ground to make up.

Even if none of this is going on, even if the relationship is healthy and sound, there are conflicting feelings when the parent dies. One of those feelings is relief, but that feeling alone causes guilt. You aren’t supposed to feel relief when your parent dies. You are supposed to be sad. Often you are sad. Sometimes you are angry too, at them having left you. Sometimes you are frustrated about all the mess they left you to have to clean up. But sometimes it is relief, because it is a lot of hard work taking care of a sick parent. Sometimes it is relief because now for once you can live your life your way without being second guessed by your parent.

It is healthy to feel whatever you feel when your parent dies, regardless of what you feel. Your feelings are yours, and they are valuable. If they have died after a long illness where you were the caretaker, your feelings will be even more complex. Don’t ignore those feelings, and don’t feel embarrassed or ashamed. They are natural. It is healthy to feel them and express them. You may not have heard other people talk about the relief they felt because they thought they shouldn’t talk about it – but it doesn’t mean you are alone. Sometimes just sharing this feeling with others who have been in a similar situation is very healing. This is why I’m sharing this with you.