The Human Giver System

Transcript: The Human Giver System (Episode 35)

Hi there, I’m your host Kay Coughlin and you’re listening to From One Caregiver to Another. This is episode 35.

I’d like to start this episode with a question. Why does it seem like the recipients of care are always supposed to come first and like they are at the center of everything all the time? Well it’s because there actually is a system that makes sure it happens. This system makes sure that caregivers feel obligated to always put care receivers first. And I am for sure including parents in this definition of caregivers.

I’m going to call this system the human giver system. It’s why we are stuck with human giver syndrome. And if you haven’t listened to my episode on that yet, that’s episode 31, and you can also check out my website to see when my next webinar or talk on human giver syndrome is happening.

So the episode about human giver syndrome is about what’s expected of the human givers, and this episode today is just going to scratch the surface about why the syndrome exists.

Basically the human giver system is the machine that ensures that we give priority to the needs of the care receiver, who can also be a child of any age. A good example of human giver system and the way it plays out in the United States anyway is the way children can now be covered under their parents’ health insurance until the age of 25.

I’m not saying that’s wrong or that we shouldn’t do that, because certainly young adults need access to healthcare, but I’m saying it’s a systemic approach to providing that care. In other words, it’s up to the parents to make sure it happens even once children become of legal adult age.

The human giver system places a higher value on the activities and the wants and the emotions of the care receiver, and it’s as if there is only one person involved in that care providing relationship. What that looks like in practice is that the care receiver or the child is put at the center of all decisions and even the distribution of resources, and this is by default. And when I say resources I mean all of them. Time, money, space, energy, food, and emotions too.

So I have to say that I do understand the logic here. Nobody wants to neglect people who need care. It’s an important high-level value for many of us to be generous towards people who need us. But I think what has been happening for as long as we have written history, so thousands of years at least, is that this system was designed to be lopsided. Care receivers are prioritized no matter the cost.

Caregivers are put to one side or considered as an afterthought only because it’s just too hard to work against the massive size of human giver system to figure out how to meet our needs too as caregivers.

So please don’t hear what I’m not saying. I am not saying that we should not prioritize people in crisis and that we should leave vulnerable people to care for themselves beyond their capacity. I’m a caregiver for my mom and a mother to two teenage boys and I’ve been married for 25 years, so it’s not just that I have dedicated my career to helping caregivers improve their own lives but I live and breathe this stuff myself personally, every single day.

Because after all, one of the functions of family is to provide care for one another. But when it’s seen as a default and not as a choice, well that’s a system at work there and that’s what I’m talking about today. One example of this that’s pretty obvious is the way caregivers are overlooked in medical settings, and this became a lot more clear during the pandemic just how lopsided this is when caregivers were suddenly forbidden to stay with care receivers during exams and in-hospital stays. It really just became so dramatically one sided.

And here’s a way you can picture this and just how lopsided this is. You can actually see it when you look around an exam room in a healthcare facility where there might be only one chair for a caregiver to sit in and it’s probably crunched into a corner and it’s made of very uncomfortable plastic. There’s no place to set down a bag or put your glasses if the care receiver needs to take them off. So caregivers end up just… We sit there and we just hold things in our laps. And in any hospital rooms then if anybody needs to stay overnight, any lounge chairs are uncomfortable at best, uncomfortable to sit in much less to spend the night in if you are a caregiver.

When my own dad was in the hospice wing of a hospital during the week before he passed away I turned the deep window cell into a bed, but I was only able to fit into it because I’m short. It didn’t actually help my sister and my brothers very much because they’re taller than me. And in fact when I look back across the past decade of my life I can see that the last two weeks of my dad’s life is one of the times that stands out as a real demonstration of the human giver system working exactly the way it was designed to work.

I have written about this time in my life before but I’m going to tell a little bit different side of the story here. And this was back in 2014, my dad had a stroke. His prognosis was quite good and he started to recover, that happens a lot with strokes nowadays. But then a couple of days after his stroke he had a complication, a really serious complication, and suddenly it just became clear that his chances of recovering at all in any way weren’t good.

If he lived he was likely to be practically helpless. He probably wouldn’t be able to talk or communicate in any way anymore. So in a matter of about four days everything with my dad went from manageable and something we could probably figure out to just basically hopeless. So it was bad enough just in that way, but then the hospital’s extreme bias for the care receiver, in this case my dad, this bias came into conflict with his wishes not to keep him alive through extreme medical interventions in this exact situation.

So despite my dad’s legal paperwork, despite the fact that he had told my mom and me and my siblings on a very regular basis that he did not want to be kept alive in this situation, and his wishes were in large part so that he wouldn’t be this giant, long-term burden on my mom and on us. In spite of all this the doctors kept trying to force us to allow life extending care for him.

This was excruciating for us as a family to have to say no over and over and over again when they would offer these life-saving treatments for him. And this went on for two solid days and nights, the hospital administration was so hell bent on providing care to my father even when he had made the decision to refuse it. And he made this decision long before his stroke ever happened. They kept sending these people who were higher up the pecking order to talk to us as a family, to try to convince us to change our minds. Their bias for my dad, the care receiver, was so strong that they were even willing to ignore his legal paperwork.

And looking back now, with the hindsight that I have I can see that it was a giant clue that we, and that was my mom and me and my siblings, we as potential caregivers had no value in their decisions or in their system. I was the one who put an end to it after two days of them trying to browbeat us into doing things their way. But I’ll be honest, I pretty much had to cause a scene to get it to stop. And I was pretty hard to ignore at that point between the tears that were just streaming down my face in the absolute steal and resolve in my voice.

And my scene was backed up by the sobbing and the frantic nodding of heads that was coming from my mom and my siblings as well. And then when we requested a hospice room for my dad, because it was so clear to us that he had so little time left, the hospital then told us there wasn’t much they could do to help us by way of a hospice room, that there wasn’t room for him.

You see at that point they had written us off as a family because we had acted against their very strong bias, their system that they wanted us to buy into. And then really they just didn’t want to have anything more to do with us.

So once again, since I had already caused a scene and I figured I didn’t have much more to lose, I caused another scene about dad getting a hospice room. And I kept that scene up for a good day or so. Finally, gosh, you know no matter how many times I talk about this I remember the pain of this. So finally the hospital managed to find us a hospice placement in the hospital. My dad… He did pass away very peacefully in his hospice room a few days later but we were traumatized, and interestingly we weren’t actually all that traumatized because he had a stroke, but it was because this human giver system, with its inherent bias for the care receiver and against our needs and wishes as caregivers, it came at us in full force and it hit us like a tidal wave.

We did manage to withstand it but it took a lot. It took so much out of all of us, and especially me because I had to tell people over and over that they had to let my dad die. I had to say that to these doctors and these nurses and the administrators, “Yes, my dad is going to die. We have said let him die.”

And in order to do that I had to cause a scene. I literally had to cause a scene before they could see me and before they could hear me. I had to act the opposite of invisible. I’m a small person so I had to stand up when everybody else was sitting down and I had to wave my arms around, and I had to raise my voice and repeat myself over and over and over again. I understood then by some instinct what had to be done. Now I understand it on a more intellectual level as well and I would know how to do it again if I needed to. And you can bet that I will.

Here’s the thing about the human giver system. It exists for the good of the system, not for any individual person. Using my dad’s end of life situation as an example I think I can safely say that the human giver system is not even really good for the care receiver. It can’t possibly be good for the care receiver can it, when a caregiver has to cause a scene and risk alienating the people in the system in order to get somebody to pay attention?

I know some of those doctors and nurses were furious with me for embarrassing them and maybe they thought I was shaming them. And I don’t know, maybe I did. I was exhausted and I was overwrought, and so maybe I did shame them. But you know what happened was they were avoiding me.

So even though I was one of the primary caregivers in that situation they didn’t want to have anything to do with me, that cannot have been good for my dad. And what makes human giver system so very overwhelming for caregivers is that it works most effectively for the system and maybe most effectively for the care receiver too when there is a single person, just one person who is essentially the primary manager for the needs of the care receiver, who can also be a child as I’ve said, because that way one single individual bears this massive burden of navigating these systems that the care receiver needs access to.

And that manager or human giver is pretty much expected to create a personalized bubble to protect the care receivers and everybody else from having to expend energy and be exposed to those systems and protect them from having to handle them too.

I think that’s one of the reasons the systems that support care receivers are so confusing and time-consuming and generally awful to navigate. If we are relying on one individual at a time to figure them out and deal with the frustrations, then as individuals it’s hard for us to band together to get things fixed. Think about… In the U S anyway, Medicare, or the Veterans Administration, or even health insurance.

These systems, they are monstrously complex, they are beastly, and so we either give up by choice or because we get bad information from somebody within the system. And this makes it a lot harder for people to be able to compel the system to provide whatever it is that that system is supposed to provide. Now there are some organizations out there fighting for change, but they too are up against the sheer size and complexity of the human giver system.

And let’s be real. The human giver system is not a broken system, it works exactly the way it’s supposed to, unfortunately for caregivers. It’s built into the economy and politics and family dynamics which I haven’t even really talked about today, how this shows up in individual families.

One of the ways that it does show up in families is that when a family takes a hit this designated caregiver, this person, will step up to take the brunt of the new situation and whatever it throws at us. Now, while human giver system doesn’t apply only to women, if we look at what happened to employed females during the pandemic, particularly female parents, the numbers are drastic. Well over 2 million women in the U S alone have left the workforce in just a little over a year. Many of these women have taken the hit for the sake of their families. Human giver system you see, treats caregivers as collateral damage, barely worth noticing and certainly not worth devoting any large scale resources or systemic resources to helping them.

And the message to caregivers is very clear. You are expected to bear this burden of caregiving alone and you’re expected to do it at the level of an expert, but the human giver system is going to direct resources away from you. You literally by design can’t have access to the people and resources who might be available to help, and yet you’re going to be held responsible for anything that goes wrong even though you as the caregiver have been deprived of the resources to handle it. You can’t even get a chair in an exam room.

This is a recipe for miscommunication, misunderstandings, and certainly for mistakes when it comes to both the care receiver and the caregiver. So the end result, what’s come out of all of this is human giver syndrome, and I talked about that a little at the beginning of this episode. And again, listen to episode 31 if you want to hear more.

Human giver syndrome is the belief that caregivers should focus on supporting care receivers and should not focus on their own lives. The very lives of human givers are expected to support other people because the human giver system just requires a person to make a massive commitment to navigating the system but for the sake of the comfort and care of other people.

I cringe every time I hear a mother, and in this case it usually is the mother, say, “I decided to stay home for a few years after our kids were born because after paying for daycare I would only be bringing home a total of $250 a week.” Who in the world decided that it’s the mother’s job that will pay for daycare instead of that expense being seen as split evenly between the income of two partners?

Well whoever decided it, the unfortunate result is that the human giver system reinforces it. And my heart breaks every time I read a post in a caregiver group that says anyone else putting their life on hold to care for a parent? Because the most heartbreaking thing about these posts is not the post. On the contrary I am so glad that people are reaching out to ask for help, but that each time hundreds of people will reply that they too are in the same situation.

This is the human giver system playing out, relying on the complete sacrifice of a single individual to do literally everything for the care receiver because it’s what makes the system run most efficiently and unfortunately the most cheaply. There’s a glue that holds the human giver system together and it’s an incredibly toxic mix. This glue is made up of the stereotypes about what a good caregiver does, biases for the care receiver and biases about how caregivers should behave as if they don’t mind their duties at all.

Another part of this toxic mix is guilt that caregivers are supposed to feel and honestly that we do feel when we can’t figure things out. Then there’s the shame that’s heaped on caregivers when we can’t navigate the details of providing care. There’s these giant corporations, including healthcare corporations, that don’t include caregivers at all in their processes. And there are laws and rules and governmental programs that are so loaded with bureaucracy and waiting lists that they can’t be understood at all or are essentially useless.

And then of course the primary toxicity of human giver system is that the needs of the caregiver are simply less important, always less important, and caregivers? Well, we should just shut up and just take it on the chin. So what can we do then, you and me, about human giver system if it’s so big? Well there’s a lot really, we can’t fix the system as individuals, and I’m here to tell you that unless you feel called to do it, it’s not your job to fix it or change it.

But for ourselves we can learn to notice when the system is at work. And when you notice it you can remind yourself that it’s not a universal truth. It’s not the natural order of things even though it’s been going on for so long that it seems that way. You and me, we can remember that even as caregivers we have a right to have needs like rest and health and help, and that we have a right to have wants like romantic relationships and careers and vacations.

We, you and I, we can remember that at all times we get to have a choice and possibilities, and we can learn to set boundaries. We can work on our own interpersonal skills and our relationship skills and our emotional health so that we can begin to create the life we want for ourselves instead of being conveniently set aside in a corner no matter what the human giver system says we are supposed to do.

Thank you so much for listening. You can learn more about me and about all of this work at facilitatoronfire.net. That’s facilitatoronfire.net. And there you can also sign up for notifications about new podcast episodes, and that will be in my newsletter. And that’s also called From One Caregiver to Another.

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