Caregiving Was Harder [Sorry, Not Sorry]

Becoming a new mom was a big transition. It also opened me up to a whole new world both online and offline- where moms get together and discuss how hard being a mom is. Like all the time. In fact, it was to the point where I was  am irritated by the fact that all moms can talk about is how hard being a mom is. There’s never any pride in accomplishments (because you might make a mom whose kid isn’t doing that feel bad), no gushing over the laughs or the fun times…

None of the good. Just how hard it is. Every social media post, every discussion. And I’m sorry but for me…

Caregiving was harder. 

There I finally said it!!!! I’ve been carrying that around with me forever, making sure my lips are pursed and the words don’t come tumbling out online or worse, to one of my friends who have become new moms. Being a mom is hard. Don’t get me wrong, it is challenging in so many ways. But what did you expect of being in charge of a little human, who can’t talk and who literally needs you 24/7?

I think being a caregiver prepared me for motherhood. I literally got a preview of all the skills I’d be utilizing as a mom, except for an adult (which is also embarrassing, physically demanding, and isolating- because NO ONE wants to talk about how hard that is.).

  • diaper changes √   (and changing an adult is incredibly hard on the back)
  • feeding √
  • late night wakings √  (you think a crying baby is hard, try picking up a 140lb man off the floor at 2am by yourself, or having to lift him on and off a toilet half asleep)
  • constant worry √
  • social isolation/lack of social life √
  • wondering what the hell they want √
  • needing to plan outings √
  • being needed 24/7 √
  • pushing them on walks √ (the stroller is much lighter than the wheelchair)
  • needing tons of equipment √

I’m not trying to make moms feel like crap or anything, but I just feel frustrated for caregivers everywhere who have to experience all these things in isolation. I mean moms get to bitch all the time (and do). But caregivers, no one wants to hear about them experiencing the same thing. You know how many times I was asked about it by friends, family, etc.? Zero. No one wants to hear it. And that builds you know?

So yeah, being a mom is really hard. But whether it’s because I’ve already done these things with an adult, or because I’m just extremely grateful for the opportunity to be a mom (considering my husband almost didn’t make it), I just don’t really think about how hard it is all the time (or even half of the time). In fact, I enjoy it much more than I don’t. At least I chose to care for this little human, whereas caregiving was thrust upon me. And the point of this post is just to highlight that caregivers go through all these things too and don’t get to talk about it (because non-caregivers really don’t care). So as a mom, I’d just like you to think about that for a second. If you were going through all this, and had no one to talk to about it, because  no one wanted to hear about it, how hard would that be?

PS. I would like to clarify that this is fully an opinion piece, from a mom and caregiver.

 

 

Frustrating Assumptions Made About Caregiving

Those on the outside looking in often think they’ve got the right idea of what caregiving is all about. Unfortunately, since more often than not people don’t ask directly about what it’s like, their assumptions are usually wrong. Today I’d like to share a few of these assumptions with you, which I’ve encountered in my own caregiving journey. I’d also like to point out just how much they can differ from reality [honestly].

  • Full-time caregivers have a lot more free time than those who work.

No, actually we don’t. You see, for those who aren’t caregivers their schedules are compartmentalized; they have time when they are working, and time when they are not. Now granted, the time when they are not working might need to be dedicated to sleep, errands, etc., but as a general rule, they get to decide how they spend their free time and it is not working 24/7. Caregivers on the other hand, are not afforded ‘free time’. I’ve had several people make comments about the free time that I have and when they do, I have trouble keeping the rude retort I feel like making to myself.

I’m just so tired…cause I went to work today.”    *Insert eye roll here*

I am the primary caregiver to my infant, whom my husband cannot assist me in caring for. I have to care for three people in my household, manage finances/appointments/everything else and I never get days off (even a couple hours is rare). Caregiving is my job, all day, every day. To think that I have more free time than someone who works out of the home simply because I don’t, is ridiculous.

  • I need to learn to ask for help

Everyone assumes that a caregiver just doesn’t ask for help enough. It’s like the favourite of unhelpful statements that people tend to make, along with: “You need to take more time for yourself”, or “You can’t do it all, all the time.” Instead of telling a caregiver what they need to do, how about offering help? And not some platitude like: “If you need anything I’m always here.” If you really want to help, be specific. For example, offer to stay with a loved one so the caregiver can get out (give dates, times, details). To be honest, we don’t ask for help because too often we get these empty offers that are more like advice we don’t need.

It has dawned on me that sometimes I need help (no really). But if a caregiver doesn’t have much support in their immediate surroundings, who do you suggest they ask? How do you suppose they should get help and with what? Anyone can point out a problem without offering a solution…

  • When I share my struggles, I need it to be fixed.

Caregivers experience a lot of stress. If you’re a family member or a friend then we might share our burdens with you and the strong feelings we have about them. Please don’t assume that we are looking for you to fix it, or make us feel more positive. This is definitely not what we need. In fact, when you tell me to keep my chin up and that everything is going to be okay when I’ve told you I’m feeling low, to me the conversation just ended. You just closed a door, and made me feel like what I’m feeling is wrong. I don’t need to be told that everything is going to be alright, I need to just be able to express myself and have someone listen. Just listen, that’s it. Let me share and feel what I’m feeling and know that someone else empathizes with me. That’s all.

  • That we are stronger or better than anyone else. 

I find a lot of friends and family put me on a pedestal. They gush about how strong I am for being a caregiver. I can see how this could be meant as a compliment, but in reality, it’s a barrier. This is how people rationalize the difficult situation that is caregiving; that the caregiver is an incredibly strong person, above and beyond everyone else. And if they are that awesome, then you don’t have to worry right? You don’t have to ask them how they are. You don’t have to think about the daily struggles they have. You don’t have to bother with it because they’re strong. It’s a way of sweeping the whole thing under the rug. This way of thinking doesn’t foster empathy, or kindness, or love. To me, it’s ignorance and chosen ignorance at that. People don’t want to see hardship, so they choose not to. And this doesn’t help a caregiver one bit. I am no different from anyone else, I just do what I have to for my family.

I realize this post comes off as being brutally honest- and that’s because it is. These are things that just need to be said, not because I aim to make anyone feel bad, but because by not being aware of these things there are many caregivers out there who feel bad all the time. If you’re a part of a support system for a caregiver then your words and actions matter- so come from a place of genuine interest and kindness, not of ignorance and apathy.

As my awareness increases, my control over my own being increases. -William Shutz

 

A Caregiver’s Ramblings about Mortality

“You are not permanent.”

A random thought this morning as I mentally ran through my to-do lists and fed the baby. It’s like my mind just likes to occasionally remind me when I’m busy of this lesson that I have learned; that I am mortal and that my time, and what I do with that time, is important.

It’s easy to become so consumed with the details of life that we end up missing the big picture. We’ve had a pretty busy summer so far with appointments, visits with friends/family and all the usual day-to-day tasks. Being busy is not a bad thing, but sometimes when things get hectic you can lose sight of what really matters. Neglecting to ask the big questions, wanting to stay in our comfort zones and resenting the fact that we have to work hard for what we want. But when you consider that any moment could be your last and that your actions, even the seemingly small ones, can have a large impact on your surrounding environment and those within it, you come to really see what’s important and what’s worth your focus and effort (and what isn’t).

We worry about growing old, when so many around us (and possibly us too!) will never get the chance. It’s so easy to forget that every morning that we wake up with another shot is an incredible opportunity. And when we get hung on on the problems, the uphill battles, the assumptions, the worries, and our misleading perceptions of what we think life should be like…every day that we do that is not only a waste of our precious time, but also a waste of our talents, abilities, and our potential impact, as well as our power.

Though we must endure loss, pain, sadness, and many other challenging and dark experiences in our lives, we must not forget our resiliency, our ability to learn and grow, adapt, and the fact that every obstacle we overcome makes us stronger if we let it. And with this strength, we can make the world a better place by using it not just to further ourselves, but to help others rise and flourish too.

We are not on earth to rise along some ladder of status alone, we are here to plant the seeds and help others thrive so that we ourselves can grow along with them. In helping others, we help ourselves.

 

 

Pity or Inspiration?

This week my husband and I did a speaking event to raise awareness of brain injury and discuss issues that families affected by brain injury face in the community. There was some really great dialog and story sharing, and it is something we hope to do again.

Afterwards, one of the attendees approached us, and said something that really affected me. He said: “You know before I heard your story, I just felt really bad for you guys, being so young and everything… But now I feel like you just have so many opportunities.” 

It was a powerful realization;

  • That we are not limited by our circumstances
  • That our lives are not dictated by my husband’s disability.
  • That there is still so much that we can accomplish, even if we can’t do all the things we could do before.
  • That our will to make a difference and live life to the fullest is strong enough to overcome the challenges we face and still be happy

Though we know this, it is so amazing when other people can see it too. Too often all they see is the disability; the struggles, the changes…they define us by what we can’t do. And in doing so, they forget all that we can do. When people treat you like you are someone to be pitied, it’s not inspiring, empowering, or motivating… It drags you down and makes you feel inferior to the people around you, when you’re not.

Pity isn’t like compassion. When people are compassionate, they are willing to actually get personally involved. For example, a compassionate person doesn’t just watch a lady in a power chair fall into the grocery isle (and definitely does not take a picture and post it online). Instead, a compassionate person goes forward and helps them. Furthermore, families with disabilities don’t just need help from other people- we also need people to raise us up (just like families who don’t have disabilities).

Everyone benefits when people are kind, compassionate, empathetic and positive. That’s not to say that you should constantly have a smile on your face no matter what and try to fake happiness…we can’t repress the negative, because we need it in our lives for balance and to connect with others (as weird as that may sound). Without loss and struggle there would be no compassion, no gratefulness, no empathy…emotions that tie us to one another in strong ways and permit us to help each other heal and grow, if we let them.

So when you look at us walking down the street, don’t think of us as ‘pitiful’. Don’t think that just because someone is disabled that they have less options, or that they can’t live life as fully as you can. Remember that they are equals, fighting different battles, doing things differently, but at the end of the day, still equals. And don’t ask yourself what you can do to help them manage, but instead, ask yourself what you can do to grow as a person alongside them, or what you can do to make sure your community is completely inclusive.

When you can fully understand that we are all equal, regardless of our jobs, regardless of our wealth, and regardless of our health, then it’s clear to see that we’ve put these distinctions up ourselves that divide us, and they can just as easily be brought down to unite us. And that’s how powerful, positive change can be created.

Convenience vs. Seclusion

My daughter enjoys watching aquarium videos while sitting in her swing to relax before her nap. I set her up with the Xbox which lets us play Youtube videos on our TV. Every once in a while an ad will play and I’ll catch part of it while I’m doing housework and whatnot.

This morning they played an ad by CIBC. It was advertising new services such as cashing a cheque using your phone. The slogan was something like: “services that fit your modern lifestyle”.

I began to think about these new services. I have to admit, they are very convenient. I mean, any caregiver or mother or busy person in general (which covers most people) can appreciate the convenience of not having to go to the bank to cash a cheque. It simplifies things and takes one thing off to the to-do list.

But do you know what else it does? It secludes us even more.

Instead of going to the bank, being amongst people, chatting with the teller, we are sitting around on our phones. Like we don’t do that enough. It’s less time being amongst other people, less time interacting with other people, and this has serious consequences for our well-being. We are social creatures, and all this automation is only hurting us in ways we might not even be fully aware of. This presentation by Ben Colson gives many examples of this. Technology impacts our ability to be empathetic, our ability to be inclusive, our ability to be kind, and our ability to be happy.

  • How often do you find yourself frustratingly trying to get a person on the phone when x store doesn’t send you all the parts for your appliance?
  • How about the hurt you feel when you misinterpret a text message which causes a rift between you and a loved one?
  • Do you sit down at the table in the evening and find everyone is too engrossed with their phones to talk about the day?
  • Do you wish someone understood what you were going through sometimes?

Convenience is wonderful, I know. But we are paying a price for it. Our inability to really connect with others can lead to depression and anxiety , and prevent us from feeling happy, fulfilled, and loved. I have to say that despite enjoying the convenience on days where things get hectic, I’m not excited about where technology is taking us. I may be able to chat with my friends on my phone everyday, but if it weakens our face-to-face interactions is it really worth it?

I live a very rich life; not financially, but in terms of blessings. I have a true partner, a healthy child, an amazing home, an awareness that makes things so much more real, and an appreciation for the opportunities I am able to see and take.

If I had to add anything else to that list, it would be to know more people; truly know them and talk about more than just fluff. To be amongst a community, a tribe, to learn and help each other out- like we should. I would wish for less seclusion and more socialization. I would rather work harder to do things with people by my side, than have things be simple and easy yet feel totally alone.

How about you?