Episode 120: Things They Should Have Told You About Caregiving Part 2

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Transcript

Welcome to Part Two of The Things They Should Have Told You summer series where I take you back to the 4 most important episodes for caregivers to listen to no matter how long they’ve been a caregiver.  If you missed part 1 you can find it here.

When we became caregivers we had to tell family and friends about the reason we had to become one. It may have been a diagnosis of a disease, an accident that created a disability or realizing a parent could no longer live on their own. No matter why you became a caregiver the days and weeks of having to give people the news was most likely draining at best and crushing at worse. I know I stumbled along trying to figure things out when telling people about my husbands cancer diagnosis and when I finally crated a system that would keep me from the drain telling people would cause I was already close to the end of the notification list. 

If a nurse or someone would have told me I should consider having different levels of communication with different types of people in my life, how group texts would not make it easier and to be warned that some people would selfishly overreact in front of me it would have made things a lot better for me. But I didn’t have that luxury and I’m hoping this will help you is you’ve just become a caregiver or it gives those of you who have been caregivers for a while a way to create a system to give people updates as time passes. 

In my opinion updates are important. Oftentimes we don’t let other people know how things are going and then we get bitter and angry that no one is helping out. So I’ve learned to give updates anytime there is a doctors appointment or surgery so people can have an idea of what our world is like for that moment. I also do it to advocate for my husband. His cancer is something he should be able to live a long life with. However, like any chronic disease it isn’t visible, except the multitude of scars he has, including one from a sternotomy he had to have a year ago. His cancer affects his daily life but he goes on trying to live the best life he can as hard as that might sometimes be for him. So I work to make sure that the people who care enough about him to read updates know that even if they see him in the office or at BBQs and he looks just fine that it takes extra work for him to be that way. 

So if you aren’t making updates I’d suggest you consider it not only so people know when you need a little more or a lot of help but also so they know what your loved one is going through. 

Let’s listen to You Don’t Have Cancer

I don’t know if it was because I had to go into a mode of protection and action when I found out my husband had cancer, but my tolerance to the reactions I would receive when giving people the news became increasing difficult for me to endure with grace.

I understand that hearing the word cancer is a shock for anyone that hears it. It creates an intense reaction when you learn someone you know has been diagnosed with it. You instantly go to the worse case scenario which is - death. Some kill you faster than others. Sometimes people can find themselves to be cancer free and others can live with cancer inside of them. It’s all scary and confusing. I get it. 

I also understand that there is no way for me to soften the blow of my words when I say it. I can’t work it into a sentence. I can’t give you worse news to make the real news better because I never could think of something worse than having cancer. Most times there is no good way to bring it up in the middle of a conversation. To tell you the truth I didn’t have the energy to filter the message after the first couple of times saying it. Every time I had to say it I broke down a little more, it became a more real each time. 

There was no good way of telling people, believe me I’ve tried them all. When I tell people in person I don’t give them a chance to react privately and a second to filter the look on their face or the tone of their voice. I feel that telling someone in person is the worst in terms of how much energy it will suck from you to say it.  The second worse is on the phone mostly because I was telling people who are important to us but not close enough in distance to tell in person. You would think it would be easier to do but it wasn’t. When telling someone in person I would know I had to have an extra layer of armour on to say it however, the assumption was I could let down my guard a little on the phone which made it harder and more of an emotional experience. After a few in person and over the phone conversation I realized I couldn’t sustain the process that way. Giving the news over and over again and having to re-live that experience was too much. So I thought the best logical way of telling people was via text. So friend groups would get a group text because in my mind I thought that was more efficient however, I didn’t take into consideration the exponential number of texts back and conversation starters within that text group once I sent it out. I couldn’t really deal well with having to take on this task while still trying to figure out how to deal with what my husband’s cancer meant for the three of us.

I loved that I had so many people in my life that truly cared about us. People who truly felt pain and sadness when they heard of my husband’s cancer. It would have been sad if they were indifferent to the news. I’ve learned that telling someone your husband has cancer brings about a lot of knee jerk reactions. Most people equate cancer with death and rightly so. That fear brings on emotion, as it should. There seems to be stages of having this information sink in that I started to see a pattern of. First, crying is a normal reaction or at least tearing up. Then people start shooting out questions or express indignation. So seeking information or becoming angry is usually the next step. Then pity or concern for me. Followed by - let me know how I can help you. Tell me what you need..

I couldn’t handle the extreme reactions. Some people reacted with explosive crying that spiraled and seemed would never end. I have to be honest, that pissed me off. Here’s why. When people cried hysterically at the news it automatically put me in a position where I felt they expected me to console them. Now think about it. MY husband has cancer, I tell you he has cancer and then your reaction makes me feel I have to help YOU. The news isn’t about the person I tell it to. It shouldn’t turn into being about them at any point of that conversation. They don’t have cancer! Also, when people would cry that much it sent the message that they were sure he was going to die. I didn’t have time for that crap. Dying wasn’t and isn’t an option and I wasn’t telling people so they could make me feel like there was no hope left in the world for him. I don’t need that. I am also not a therapist and I didn’t have or need to have the skills to help them process what was going on with my husband. My purpose wasn’t to make them feel ok with the diagnosis or give them hope that things would be ok. You see, me telling someone about my husband’s cancer made things much more difficult for me when they reacted this way. Wether they knew it of not, what they were asking of me was unfair. It would make me angry that they weren’t seeing they were making things worse for me.

Every time you tell someone your spouse has cancer it takes away a small piece of strength you have that you need to get through it all. It steals energy you are in very low supply of. It makes you doubt your ability to get through it all and it makes you question if your spouse will even make it. 

I could talk myself up and make myself confident that we were going to get through this but every time I had to tell someone of his cancer it would pull me down into a sea of doubt.

This has been a constant issue for me over the years. My husband will always have cancer but on the outside there is no visible sign of it, unless you catch the scars on his body. I don’t go out of my way to tell people either. I feel that if you aren’t close enough to know about my his cancer then there isn’t a reason for you to know. We don’t hide it. When we have to go in for scans every 3 or 6 months depending on how good of a year we are having we don’t keep it a secret. You also lose track of who knows and who doesn’t. So maybe when I am talking to a parent of my daughter’s friend and they happen to ask me how my family is doing I just assume they know about the cancer which can make for some pretty awkward conversations. The thing that gets me is when someone is annoyed that they weren’t told. 

Over the years I’ve learned that everyone has a right to react in their own way. It is also my right to react to your reaction and I’m really over trying to make people feel good about finding out my husband has cancer.

It sucks for you to hear it, imagine what it is like to have to tell people about it and live with it!

This series will be continued into the August issue of Caregiving confessions the digital magazine for caregivers. If you haven’t subscribed find all the information at loveyourcaregivinglife.com/confessions. The August issue will expand on the episodes you will hear this month and will include a live session with me and other caregivers to answer your questions and connect. Join us at loveyourcaregivinglife.com/caregivers.

Thank you for listening.  

 Download a free version of Caregiving Confessions Here!