Episode 59: Your Value

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I have to admit when I sat down to write out this podcast episode I thought I was firm in what I was going to write. As I wrote, the argument began to fall apart and it became more of an exercise in pinpointing what my experience as a caregiver has been. I spent almost a week working on it and thinking about it. I posted questions in my caregiver FB group to get their opinion. I read through caregivers posts to see if there is something that I was missing in my experience as a caregiver that others were having. 

I put 300% more energy into this episode than any other before it.

Then I decided to scrap it. It felt too difficult. Too vulnerable. I wasn’t 100% sure if what I feel now will be what I will feel later. I didn’t want to alienate any of you. I was certain I would piss some people off. 

Then I asked myself why I do this? Why a podcast for caregivers? 

The biggest why is to let anyone who listens know that they’e not alone. That all of us are trying to figure things out as we go. The one thing I want is to create a place where we can come together as a community to support each other.  I want to create a place where we can see ourselves in other people and to be able to have conversations like this one. The ones that we have to say…wow, you know what, I need to sit with that for a while to understand how I feel about it.

I know that you might not have the energy to do anything but listen to this, but if you have the energy, I would like to continue to have a conversation about this once you listen to it. I would love to have you come to the FB group or email me and say Hey Charlotte, I listened to the podcast and I think you’re missing something from the argument you made. 

Because I am just like you. I’m still figuring things out. 

So here it goes…

Many times I hear from caregivers that they are unhappy because they are misunderstood. They feel they don’t get the support they need because no one really understands what they do and what they are going through. 

It makes them feel lonely and invisible.

When I started writing the original episode for today I was all on that. Yes! no one understands how emotionally draining it is to be a caregiver. No one understands what I do in a day when I care for my husband. No one understands the stress we are under and how hopeless we feel when we are so overwhelmed we can’t think straight enough to make decisions. 

Yes! We are a misunderstood group of people and that is a big source of our unhappiness.

I started working on that argument so that we could all come to a solution at the end but things just kept breaking apart. You see… I don’t think anyone really understands what it is to be me, or you, and that hasn’t really made me unhappy in the past. Before becoming a caregiver I was a full time Yoga teacher. I didn’t think people outside of the yoga world really understood what I did. What it was like to be a teacher especially when my body does not fit the stereotypical look of a yoga teacher. Before that I was a full time stay at home mom. I didn’t even think my husband understood what a day in my life was like. 

You know what? I didn’t really care if people understood. When I didn’t feel good about my life, as all of us do at some point, it wasn’t because no one understood me or the roles I assumed. 

The one thing that I did feel emotional about is when a person asked what I did and their reaction when I told them. If they immediately shifted because they didn’t think what I did had value it pissed me off. Being a stay at home mom or being a yoga teacher, in their eyes,  had no worth and they let me know it. But that didn’t ruin my day. I didn’t feel like I needed for them to understand what it meant to do those things so they could change their opinion. I didn’t care that they didn’t understand but I did care that they didn’t value what I did.

I think it isn’t being misunderstood as a caregiver that causes us to feel lonely and unsupported. I feel that we feel this way because caregiving is undervalued. 

Here’s why.

I have no idea what a thoracic surgeon really does. I know it is a title of the doctor who keeps my husband alive. I feel they get paid a lot but I really don’t know that for sure. When they walk into the room I sit up a little taller and try to hear everything they have to say. Their opinion matters to me and there is a great deal of respect for what they do. I just don’t know what that is exactly. 

I don’t have an idea what it’s like to be a garbage collector. I know they pick up my trash but I don’t know how difficult a job it is. I have no idea if it’s dangerous or not. I don’t know anything about it. In fact they don’t even come to mind until the truck wakes me up in the morning. I sure value what they do especially if for some reason they don’t pick up my trash on the day they are supposed to. Somehow my world will come tumbling down if I have to organize two weeks of trash!

Two very different professions. I have no idea what it feels like to have either  job. But I know I value what they do and if I met them at a party I would love to learn more about it. 

Being a caregiver holds little value in the societies we live in. 

Sure people don’t understand what we do. They don’t know how difficult it can be. Until, of course, they become one themselves. 

None of us really understands what it’s like to be another person anyway. I live with my husband and I have no idea what it’s like to live with cancer. I never will. But I have respect for how he lives his life. And actually there is a lot of social respect for a person who has cancer. People don’t know what it’s like but they know it’s life threatening and scary and they want to show their support. 

We don’t feel valued as caregivers and that is why we feel lonely and misunderstood. I think it’s just hard for us to pinpoint what is causing this tension between us and the rest of the world. With the little bit of mental power we have to think things through sometimes the easiest thing for us to come to is that we feel this way because no one understands us. 

No one really values what we do. If caregiving were valued we would have support systems set up for us that would allow us to do the important parts of our role. There would be more therapists available that specialize in caregiver specific therapies. We would have training programs available to us to learn how to cope with the stress of being a caregiver, how to perform minor medical tasks like stripping drains and wound care or education sessions for the specific health issue the person we care for has.

In fact let’s start at the beginning. 

  • If what we did had value in the world doctors would send us to our own care coordinator to, at least, give us an idea of what to expect, how to handle the emotional struggle of caregiving, and information on how to find support and help outside the house for the things we need. Or at least a freaking pamphlet!
  • If our role was valued we would be eligible for a subsidy especially if our caregiving meant leaving  a job to be able to do it. 
  • Churches and community centers would all have caregiving support groups along with all the other ones they provide to their communities. 

If we lived in a world that had that we wouldn’t feel as guilty as we do right now when we want to do something for ourselves. If we asked someone for help they would be proud to be able to help us or at least have the social pressure to want to do it. It would be unthinkable for family members to disappear when caregivers needed help. If someone asked you what you did and you told them you are a caregiver their faces would light up and fill with pride and respect for what you do. All the time no one would understand what caregiving is like. It wouldn’t cure the person you care for. It wouldn’t change the sadness, hopelessness, worry and anxiety that you would feel as all caregivers do. However, the world you lived in would value what you do.

I think that is what we are really looking for. 

The other part of that equation is, most of us don’t see ourselves in other people. There are so many caregivers in the United States alone that we pass by at least one other caregiver throughout our day. We might live next to one. We might work with one. But we don’t group together. Being part of a group helps a person feel heard and seen. You don’t feel invisible when you know a group of people who are going through exactly what you are going through.

Being able to make connections with other humans is important for us to do. Often times we are just too tired to even think of meeting for coffee with a group of other caregivers or going to a support group. I think we need to somehow find others like us. Because being in community with people who understand your world is what you need. 

When I was a stay at home mom and my daughter was little I was a part of a moms group. We were able to talk about the issues we were having or complained about things that were going on in our lives. One of us could say - my daughter is scared of fingers now and even though to anyone else that seems illogical all the moms would jump in to support them and try to help out because they know how that feels. Being part of that group validated my experience as a parent who stayed at home to care for my child. I didn’t care if anyone else understood me because I had a group of women who did. 

As a yoga teacher I have a group of other teachers who I can talk to about things and feel validated by them as well. But as a caregiver, especially in the beginning, I didn’t have that. I didn’t know any other caregivers. FaceBook didn’t have groups and looking online for support wasn’t really a thing in 2013. So it was the first time that I took on a challenge that I felt completely alone in doing. 

That was the first time I felt misunderstood. I had things that I felt I couldn’t really talk about to anyone else because they wouldn’t understand. It isn’t easy to throw into a conversation with your friend man I couldn’t sleep last night because I couldn’t figure out what I would do if my husband were to die. That’s a heavy conversation to have with someone who can’t also say oh yes I remember those types of nights. Here’s what helped me.  

No, your friend would think in her head Holy Crap this is what we’re doing now?- and then probably say something they thought would help but might have made worse because it wouldn’t validate your experience.

If, in the beginning, I had a couple of people who also were caregivers that I could talk to, I think my experience would have been very different and a lot more positive. I would for sure feel like there was someone in the world who understood what I was going through. I think having that validation would have given me the confidence to move forward as a caregiver and make decisions. I wouldn’t have second guessed myself. I wouldn’t have judged the stress and the worry. I would have had the ability to see the value of what I was doing. 

To find validation caregivers need to find ways to connect with other caregivers, which these days, can be fairly easy to do.

To feel valued is the harder one and the topic of the next episode.

In the meantime I’d love to hear what you think. For you, is it the need to be understood or valued? You can find me in the FB group or you can send me an email.


 

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