Episode 220: Unveiling the Power of Resilience: Defying Strangers' Attempts to Shame Me as a Caregiver

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Episode Transcript

A few months ago I posted a simple video that I thought was just silly. It was one that I took driving into a parking deck at Mayo Clinic in MN with the caption “POV: when it’s time to bring your husband home from surgery and you know you won’t sleep for 4 months straight!” It also had a video of Dwayne Johnson saying don’t cry, don’t cry in the corner.

I remember when I made it and how much I giggled when I posted it. I’ll share the link on the website page for this episode and will share it in the newsletter. If you’d like to sign up for the newsletter go to loveyourcaregivinglife.com and click on newsletter.

Anyway, I loved how I was able to catch a feeling I have every time I bring my husband home from a cancer surgery. I know I’m not the only one who is in caregiver mode 100% of the time for a while after they bring their loved one back from the hospital. In fact I prepare the house and myself before we leave for cancer surgery so when we do get back I don’t have to think much to do anything. I know I’ll be so exhausted even deciding on dinner will be hard. I always expect at least a week of waking up every 2-4 hours at night to make sure he stays on track with all the medications they send him home with. I usually sleep with my head on the opposite end of the bed so he can elevate his end as high as he needs to and, I’ll be honest… I’m too old to function without a good night’s sleep. 

So I thought it would be fun to capture this very real aspect of caregiving and share it because I know I’m not the only one who experiences this but maybe one of the only ones that will share it. 

I didn’t expect what happened next. When I woke up the following day and checked my instagram account I realized twenty thousand people had watched that video. For a second I was irritated, because I have a lot more valuable posts on my account than this one. Then I thought it was funny so many people had watched it. 

I noticed there were comments waiting for me to reply to and right before clicking to read them I thought, wow I found a way for caregivers to have a conversation about something a lot of us can joke about because we all feel the sentiment in this video in some way. 

I was wrong. The comments weren’t from caregivers. They were from people judging me sharing my perspective on my caregiving. 

Let’s read some of them…

The first one read “Terrible wife, being sad for having to take care of the husband that takes care of you everyday.”

The next person wrote, “Imagine being the husband and having to deal with this attitude though.”

It kept going. The third comment was “Imagine being the person who actually went through surgery and the pain he’ll be in for weeks maybe months.”

Then, my favorite, “This is the low quality woman my mom warned me about. Phew good thing I won’t be getting my wife from the west.”

One caregiver bravely commented, “I was a 24/7 caregiver for my sister, in my home. I get it! 

I read these comments, put my phone down and walked away. 

I am completely aware that having this podcast and posting on social media opens me up to situations like this. But I was pissed off that strangers were judging my thoughts about caregiving. They were telling me I was a bad person because I was poking fun at a part of caregiving that is difficult for me. I was expressing myself as a caregiver and almost all of them said in their own way, how selfish of you, you aren’t the one that’s sick.

Strangers tried to shame me because I posted about sleepless caregiving nights with Dwayne Johnson trying not to cry. 

So I sat down with my husband, told him what happened and asked if he would like to hear the comments. As I read them he started laughing. He thought it was hilarious that people who don’t know me could feel they have the right to judge me. He laughed because of how wrong they were about how well he feels I care for him and he confirmed what I already know, I am a kick ass caregiver. 

However, these comments stuck with me because these strangers were judging me as a caregiver. I’m secure in knowing the value of what I do, but not all of you are. I almost just walked away without commenting back because after being mad for 5 minutes.  I was over it but realized that only one caregiver commented to support me and that made me remember, most of the time caregivers are worried they’ll be judged.

You might worry people won’t think you’re doing enough. Maybe you're trying to decide if you should put your loved on in a facility because you really can’t take care of them anymore but don’t know how the rest of the family will react. You could be exhausted and resentful that you’re a caregiver sometimes, or all the time, and don’t feel you can share that with anyone.

So you hide it. You dismiss it as soon as it pops into your head. Why? Because you don’t feel you have someone on your side. 

I felt that with those comments. 

My 5 minutes of irritation turned into 10 minutes of disappointment. I know out of the now over thirty thousand people who have viewed this video some of them were caregivers and only one felt brave enough to let me know she saw me.

Now this is putting a lot of importance on a 3 second video and a very small percentage of comments based on the number of views. I know this. 

However, it gave me the opportunity to feel what it’s like to be judged, harshly. To be honest judgement was one of my biggest fears when I became a caregiver years ago. You know, under the fear of my husband dying and a couple other real fears I’ve shared over the years on this podcast. 

I know some of you have experienced this type of judgement first hand by people you know, which is far worse than hearing it from strangers. 

I find that all of us, no matter if we’re caregivers or not, fear the judgement of others. It subconsciously dictates how we make decisions. The clothes we wear to a doctor’s office, wether or not we actually answer back truthfully when a person asks how we’re doing. It’s all based on how we want people to see us. 

We all do it. 

I instinctually guard the things I share with a friend based on how well I think she understands me and my style of caregiving. I did this almost all the time when I first became a caregiver because it’s hard for a friend to help you process the fear you have of your husband dying or how pissed off I was that this was happening to me. The first would make them extremely uncomfortable because people who love you want to make things better and there aren’t a lot of good responses to the fear of death. The second would test their ability to accept me and the difficulties caregiving caused me without trying to make me see things could be worse in an attempt to try to make it better. Worse yet they could you the words “at least”

So I kept things like this to myself, until I started telling them to you. 

It makes me really angry that there are so many caregivers in the world but this fear of judgement keeps us from sharing, voicing our needs and trying to change our realities to accommodate our happiness because we worry what people will think. The people that matter in our lives should be trying to find ways to listen to us. They should seek to understand how caregiving is affecting our lives and try to help us the best way they can.

People need to stop telling caregivers to give them a call when they need help and actually step in and help. Shit, it isn’t too hard to drop a bouquet of flowers and a cup of coffee on a doorstep, bring a meal that wasn’t asked for or simply show up to give them a hug. 

It isn’t too much to sit down with us, look us in the eye and say how are you really? I’m here to listen.

The whole time we are constantly worried that someone like “da_ghost_squad” from instagram is going to say you’re a terrible spouse for commenting on how you don’t look forward to the lack of sleep you always have to survive when you bring your husband back from the hospital. 

You shouldn’t be worried about what people will think if you have professional caregivers and nurses come to your home to help bathe your mother. 

We shouldn’t wish we could tell a friend about how sad we are or how difficult caregiving is but don’t because they won’t understand. 

Other people’s opinions shouldn’t be a factor in our caregiving decisions, yet for many of us, they are!

I don’t usually respond to hate comments on social media but to these I did.  Some people might’ve thought it was a waste of my time. I didn’t do it because I had to prove a point or stick up for myself. I don’t care about that, I don’t know these people. 

I commented because I didn’t want a caregiver to go to the comments, see these judgmental words un answered. If any of us are judged on how we care for our loved ones the instinct would be to hide. Hide our feelings, hide what we’d like to say and definitely not try to stick up for ourselves and our decisions because that would lead into an argument or a discussion based on our need to prove we’re good enough, which is ridiculous. 

I didn’t want a caregiver to read these comments and see them unanswered and then think, see, that’s why I never say anything. So may of us think it’s easier to stay silent.

So we swallow our words, we push our feelings down deep and we feel shame for even thinking we’d love to just have a day to ourselves, or just to take a nap. 

So I commented back and they read..

Imagine 52 million caregivers feeling this same thing and hiding it because of people like you.

This is why people like me share what caregiving is like. Because comments like this are why caregivers hide their feelings.

And my favorite,.. to “da_ghost_Squad” my husband has had cancer for 10 years and he thinks this shade from you is funny.”

Most importantly my comment to my concrete dove “thanks for the support”

Let’s do our best to support each other because we know what caregiving feels like, we know how it changes our lives. Let’s be there for each other so when someone who isn’t a caregiver decides they have the right to judge us we will be there to support, bolster, show up for that person and help them remember how kick ass a caregiver they are!

Because you are a kick ass caregiver. I don’t care how you feel about yourself right now you need to know that anything you do as a caregiver makes you the most important person in your loved one’s life. 

It’s a rough road to go down and it’s thankless. Just know I’m here to cheer you on, block the haters and support you in anyway I can. 

You can find the post here : https://www.instagram.com/reel/CsE7c7Ktp4M/?utm_source=ig_web_copy_link&igshid=MzRlODBiNWFlZA==