Episode 256 : The Caregiver's Guide to Hierarchy of Information Sharing in Tough Times

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Episode Transcript

When I share cancer news with friends I love or when things aren’t going well in regards to my husband’s health… It breaks my heart.  I feel extremely responsible for dragging them back into the world of cancer they don’t normally live in anytime he needs a surgery or there’s an intense moment of not knowing.

Let’s talk about how to share…

I feel an intense responsibility for the potential to ruin a friends day by sharing with them when cancer or caregiving becomes really serious or heavy for me.   Not because I can tell how much it hurts them to hear someone they care about is going through a scary time. Not because cancer always causes fear. But because I feel I ruin their reality a little bit more each time. Let them in on how unfair life with cancer can be and give them a glimpse of what feeling like the earth will drop from underneath them at any time feels like. I don’t take for granted how hard it can be to experience that and how much I love them for coming along with me when they can.

Not everyone I know get’s information all at the same time when it comes to my husband’s health. I have levels of sharing what is happening in our lives with cancer. I don’t know if you even realize you might have them too, especially if you’ve been a caregiver for a while. I found early on that sending an email or text blast that my husband has cancer was the worst thing I could have ever done, but that’s exactly what I did when he was first diagnosed. 

I was freaking scared and my instinct was to tell EVERYONE he has cancer because I thought the more people that knew the more comforting it would be for me. But it wasn’t. One text message to one person meant I had 10 more texts from that one person. So I tried sending a text to a group of people who all knew each other and that turned into 100 messages. 

It was overwhelming, and I very quickly, but all too late, found the caringbridge site. Even still I then had to tell people to start checking out the page I made for my husband which, 11 years ago, was not a very common thing to have to do. CaringBridge a decade ago was in some respects ahead of it’s time. FB groups weren’t really a thing back then and no one but photographers were on Instagram. 

Yeah… remember those days when social media didn’t really take up all of our free time? When we got that dopamine hit from… real life. 

Anyway, I remember telling people to go to the CaringBridge site and they’d take it as a brush off. Like I just didn’t want to keep them updated personally and they were very right… I didn’t because I couldn’t keep up and there were more important things to do. Even back them people felt entitled to by the second updates and I realized I wasn’t a cancer alert machine so I stopped and updated the people who I felt needed to be updated in person. 

Over the years I have realized there has always been a hierarchy of who and how I let people know how things are going with my husband. There is a direct correlation between how stressful my husband and I want our lives to be and who we tell at any specific time. We’ve learned that there are people you tell right away and others who will find out from caring bridge updates if they happen to see them. 

Quite frankly… everyone doesn’t deserve to know right away when something has changed in your loved one’s health. 

The hierarchy was organically created and informed by what we felt were mistakes we made… and in we I mean me because I'm the one who is the press secretary of the family. Didn’t know that was an additional role you played? It is.

You probably have something similar to this… I will tell very close friends, a few family members and my daughter when we have six month tests. If everything turns out ok I’ll tell them first and then I’ll share with everyone on caringbrisge that we did 6 month checkups and everything is ok and then I’m done. 

If everything is not ok then, quite honestly we wait until the Dr’s visit and to have a plan before we tell almost anyone, because, as you know, everyone has follow up questions that you won’t have the answers to. Sometimes that’s actually good because it helps you think of questions you can take to the Dr but most times all it does is make you more anxious. After we figure out what is going to happen next we roll out the news.  

First we let very close family members and friends know, then kinda close friends and co-workers and then caring bridge. Sometimes there are days and/or weeks in between each group. It really depends on how serious the information is. Neither one of us has the energy to talk to a big group of people that loves us all at one time. 

So when you have big news to share, good or bad, be realistic about how much energy you do or don’t have to share with other people. Once you open the floodgates everyone will have follow up questions and want o check in for more updates after they know there’s a surgery or new treatment plan in place. You won’t have the energy to keep up with that and most likely will wear yourself out making other people feel better about what you are living with. Not a task you should be responsible for when you have bigger things to handle. 

My personal plan is a little different than the overall family plan of information giving. Most often the first people I talk to are very close friends and, on purpose, that is a very small group of people. Max 2 people really. They are people that have been in my life for at least as long as my husband’s had cancer and quiet honestly have been able to withstand being my friend through everything I’ve gone through. A lot of the time they hear about things before ANYONE else does.

There is a certain amount of responsibility I feel, however,  in how much I can mess up their day by sharing bad news. I know full well that when you share bad news with someone who truly cares about you and your loved one you pull them into your disease world… that of cancer, Alzheimers, dementia - whatever it is you are helping your loved one through —— and I try to do that with some care… because there is a difference between knowing your friend is a caregiver and understanding what living as a caregiver is like.  There is a difference between knowing your friend is worried or stressed out about upcoming appointments or treatments and actually feeling and living that reality. They will, hopefully, always be on the outside looking in. 

But that also means they haven’t had to do the work to learn how to adapt and deal with the crushing blows and sometimes iI know t makes hearing bad news extremely difficult for them.  

It’s very easy for a lot of people in our lives to hear your loved one needs surgery, say holy crap that sucks and then remember they have to pick their child up at school and forget about what you have to live with the rest of that day. It’s easy for someone to hear about news that is crushing for you, feel sad for maybe a minute and then go on with their lives. And as much as I know that pisses some of you off it is the way humans work and is probably a healthier way for them to respond.  

So when I have bad news to share with a close friend I do it completely understanding that I will ruin their day because they care more than most and I don’t take that for granted. These are women in my life that see me completely. Who don’t disappear when life gets hard. Who are used to sitting with me in uncomfortable feelings either because they need it or I need it. I couldn’t have asked for better people in my life. 

But how do we as caregivers balance out the need to have this support while still providing the same support to the people who love us?

Sometimes I feel bad for pulling them into my world more than most days and I am completely aware of how much of themselves they give up on days like that to me. I completely understand that they didn’t sign up to be a visitor in my cancer world. I know they don’t think of cancer and how it effects my life as much as I do… as it should be. They have all their own personal issues to deal with. They have their own lives to live. But when I need them they jump back in with me without hesitation. 

We’ve all had bad responses from people we might have felt were close enough to share a caregiving moment with. We’ve had people respond in really shitty ways when we let them know something has changed for the worse in our loved ones lives. We’ve had people completely disappear when you felt you needed them the most. We have selfish friends, and friends that always want to compare their hardships with yours when all you want is for them to just listen. 

Those friendships suck the life out of us in moments we really need someone to be there to at least listen. But not all friendships are equal. Maybe the person who doesn’t want to hear about your mom’s dementia is the one that you have fun going to the movies with. Maybe the one who compares your husband’s illness to their chid’s health issues is someone you enjoy going to yoga classes with. 

What I’m saying is, not all friends earn the right to hear what’s going on in your caregiving life. 

I think it’s important for us to think of it this way. Because the opposite way of looking at this is… My friends don’t care about what is going on in my caregiving life. That isn’t it, though. If someone doesn’t know you well enough, doesn’t have the emotional bandwidth or have the empathy to care enough they don’t deserve to have have caregiving conversations with you. 

Some friends didn’t sign up to be a caregiver supporter. In fact, If there happens to be a new friend that has gotten to know me since the last time my husband’s cancer was a big deal in our lives then I’ll let them know a little bit of what is going on and see how they react before I decide how much I’ll share.

There are some warning signs or at least cue’s that a person is not going to be a good caregiver supporter that I’ve learned to notice.

They act annoyed that I did’t tell them my husband has cancer earlier on.

They don’t acknowledge how difficult it must be for me to share that part of me with them.

They start to cry or tear up making me feel like I have to make it better for them.

They completely brush it off and change the subject. 

Let’s be clear, this doesn’t mean they’re a bad person or that it’s not worth it to continue to be friends with them. It just means that they aren’t the type of person you’re going to want to confide in when you need caregiver support. We all need people in our lives that don’t give a shit that we’re caregivers. It isn’t a bad thing to have people see us outside of our caregiving world because they can remind us that we are our own separate people, not just caregivers. In reality it’s good when people show us who they are and what kind of friend they can be… we just have to listen to them and understand when someone doesn’t or can’t be involved in that part of our lives. 

Friendships are a relationship and sometimes we all suck at relationships. But I have learned 

There should be a solid give and take, 

The understanding that the support you give and get from friends is never in balance but shifts over time, 

You can’t be too proud to say sorry and thank you,

And how important it is to tell your friend how much you appreciate them in your lives.

Of course we all wish that there was one person we could dump all our issues on at a moments notice and not have to take into consideration support they might need and have them always give us a good response back without inserting any fear, tiredness or irritation into it. But that isn’t a friend that’s a therapist. Something we all need and sadly very little have.

We need to keep in mind that our friends are people who have their own hardships they are living through. We have to know that they aren’t always going to be able to be as supportive as we would want them to be. They may have things going on in their lives that don’t allow them to be there for our really hard moments.  

That’s ok, even through it can hurt. 

We can’t force a person to be available to help us handle our own problems. 

Friendships take work, we have to want to give as much as we get from this special group of people in our lives. Just like anyone else, if we only take or expect a person’s support without reciprocating then we are actually the friend that isn’t good for them. 

We need to acknowledge that telling a friend the cancer is back isn’t the same as complaining to them about how mean someone was to you in the target parking lot. 

We have to understand that them being in our lives supporting us does’t not mean they have to fully understand what it feels like to be us. And understanding that everyone shows up to relationships as they can, with the baggage they have accumulated over their lifetimes allows us to clearly see what kind of friendship a person is actually available for. 

After all that, having someone who will show up for you and be there to support you as a friend who is also a caregiver is a gift. 

So if you haven’t taken a moment to thank them or acknowledge how important they are to you, consider doing that this week. 

Thanks for listening