Selfish? More Like Self-Preservation: Embracing Self-Care as a Caregiver
I used to think that being a good caregiver meant running myself into the ground. I thought that if I wasn't completely exhausted physically, spiritually, and emotionally, then I wasn't doing enough for my mom or it meant that I was probably caregiving the wrong way if I had any semblance of peace. But you know what? That's just a one-way ticket to Resentment City, population: me.
It took me a long time to realize that my mom doesn't benefit from me being a martyr. When I'm burnt out and barely functioning, I'm not the caregiver she needs. I'm short-tempered, impatient, and honestly, kind of a jerk (okay, not kinda, I AM a jerk). And let me tell you, the guilt that comes with snapping at your loved one who has no control over their illness? It's a special kind of torment that can take me to a really dark space very quickly as someone who struggles self-hatred as a result of trauma in my past.
I had to take a hard look at myself and admit that I was becoming resentful of my mom for how empty I felt, even though it was never her job to fill my cup – not before her diagnosis, and certainly not now. That resentment was a big, flashing neon sign that I needed to start taking care of myself, too. That I needed to create the joy that I needed, because Lord know joy doesn’t come as easily and naturally like it used to.
But self-care? It's a tricky thing, especially when you're a caregiver. Actually, as a woman I think that self-care is a tricky thing. It's easy to get caught up in what social media tells us self-care should look like and I feel that this ideal is especially catered toward women. Massages, fancy manicures, shopping sprees – that all sounds great and looks great. I mean who wouldn’t want those things? Unfortunately it's not exactly realistic when you're knee-deep in doctor's appointments, adult diapers, playing 20 repeat questions every 5 minutes, and you’re holding onto your sanity by the skin of your teeth. When you’re in caregiving survival mode, even self-care feels like another demand on your time and energy that you just don’t have it in you to give. I know I can feel this for myself still, even though I’ve gain progress in building in my own practice. I mean, I do it, but that doesn’t mean I always want to. The getting started is always hard for me, but I can honestly say that I’ve never regretted it after I was done.
I had to get creative with my self-care, because I gotta be real, I'm not exactly rolling in disposable income (which is another new normal that I’m still navigating). I’ve had to start small, with things like waking up earlier instead of sleeping in so that I could read some of that book I bought that I was so excited about, or forcing myself to stop what I was doing to take a few deep breaths when I felt like I was about to lose my mind. And you know what? Those little moments of self-care started to add up. They didn’t create this huge paradigm shift or anything and it didn’t even make doing self-care easier for me. What these little things did was provide space for me to remember myself, to come back to me, to be present in my own mind and body, and served as a little “How are you feeling, Andrea?” check-in with myself. I need these moments and so do you. I often go into turbo caregiving mode the moment my Mom wakes up and the I’m just on autopilot the rest of the day, just living for when it’s bedtime and I can kind of having some peace again (though, we all know even sleep isn’t ours anymore in this life!).
It's not always easy to make time for yourself when you're a caregiver. There's always something that needs to be done, and the guilt of taking a break can be overwhelming. But we have to keep encouraging each other to prioritize self-care, because if we don't, we risk losing ourselves completely to this role, which is just as much a tragedy as the disease that’s stealing our loved ones from us. Nobody wins from you martyring your entire identity, so much so, that when your person’s fight with this disease is over, your vision for your own life dies with them. This is one of many things at stake here. This is why we must remember ourselves.
Sometimes self-care looks like locking myself in the bathroom for five minutes of peace and quiet (while checking the cameras in my apartment), even if my mom is trying to escape out of my locked windows and asking for the thousandth time where her purse is. It's not glamorous self-care, but it's real in-the-moment self-care!
So, my fellow caregivers, I want you to know that self-care isn't selfish. It's absolutely necessary. I’m sure that many of you have heard the saying that sounds something like “You can't keep pouring from an empty cup and expecting to have anything left to give.” which I totally agree with, but I think we can reframe that a little more because a little outward focused. Focusing outside ourselves and centering ourselves around what we have to give is easy, it’s creating space on what we can keep for ourselves that’s hard. So I’d like to rephrase that saying a little to bring us into focus a little more by instead saying "Caregiving is like pouring from one cup to another. But don't forget, your cup needs to be filled too, or you'll both be left empty." Yep. I think I like that a little better. Takes this anthem for self-care up a notch.
We have to make self-care a non-negotiable part of our lives, even if it's just a few minutes a day. I gave you a couple examples of ways that I’ve had to build self-care into my day, but there’s a few more that I’d like to share as well. Remember, self-care is specific to what fills YOUR cup and don’t get hung up on the idea of needing to spend money to start practicing pouring into yourself. The most important thing is that you just DO IT! So do the quickest, easiest, most convenient thing so that you don’t have an open door to put it off for another day.
Here are some simple self-care ideas that have helped me:
JOURNAL, JOURNAL, JOURNAL! I will preach this practice every day of my life. I’ve been journaling since I was 7 yrs old, which is when my Mom gifted me my first journal. I have filled boxes of them ever since. My journal is the ultimate best friend and confidant. Honestly, no human knows me like my journals do. The amount of transparency that I pour into my journals has me nervous to die and have them left behind (not that I’ll be here to care!) but it is what it is because I need someplace in my life where I don’t have to suppress my emotions at all…. and my journal is that place. I highly challenge you to journal too if you aren’t already. No need to complicate it, watch YouTube videos on it, to get caught up in having the perfect journal with the matching pen, no need to even buy a new notebook! It’s not about the thing… it’s about the connection to self… and that can be done on printer paper stapled together. Just start.
Find ways to make every day experiences feel like a luxury moment. Like putting a little lamp in your bathroom, so you can turn off the overhead lighting and take a low-lit shower (this is something I’ve shared on my Instagram account). I swear by this! It makes something that I do already, feel like such an intentional and intimate moment with myself. My energy shifts with the low light from “Gotta hurry up and get out!” to a more relaxed “I’ve got time…” headspace… even when I don’t actually have time lol.
Step outside and feel the sun on your face, even if it's just for a minute - because sun therapy is free and it works! For artificial sunlight, get yourself a Happy Light. I purchased one this past Winter and it helped me fake it a little more until I made it. I have seasonal depression on top of good ole regular depression that I have to manage, and so anyway I can minimize the scaries, the better.
Put an earbud in one ear and listen to your favorite music, podcast, or audiobook while you cook or clean. I love music and podcasts, and I used to listen to them daily, but that has been something that got squeezed out of my life more and more. Kind of like how watching TV shows and movies I like have gotten squeezed out as the disease has progressed and my Mom’s reality blurs too much with what’s on the TV. I started to feel like I was losing things I loved. Now I’ve reignited my love for music again (I love making playlists like I’m some pubescent 13 year old!). I cook and listen to some music I can pop my booty to while still having an ear free to hear if my Mom plugged up with toilet with a sock for the 5 millionth time.
Schedule self-care like you do your loved-ones medical appointments. Block out the time on your calendar and give it the same attention and commitment you would if you were headed to see a doctor. I mean, it kind of is a healthcare appointment - except you’re practicing care on yourself! My scheduled block of time is in the morning from 6am-7am. It sometimes starts earlier and sometimes lasts longer depending on the day or my state of mind, but 6am-7am is always mine… and I guard that time with my life because my life depends on it. With it, I still feel like a mess sometimes. Without it though, I’m a trainwreck. I can see and feel the difference in the days when I decided to prioritize giving that time to my job or something else instead. I’ve learned that doing that is a no-go for me.
Decluttering is my jam when it comes to self-care. I know it might not sound like self-care, but hear me out. When I'm drowning in a sea of stuff I never use, it's not just taking up space in my house; it's taking up space in my head. And as a caregiver, I need all the mental and emotional energy I can keep.
Just to clarify, decluttering isn't the same as organizing. Organizing is just shuffling the junk around, trying to make it look prettier. But decluttering? That's about getting rid of the junk. And let me tell you, every time I let go of something that's just been collecting dust, I feel like I can breathe a little easier.
My motto is pretty simple: if I haven't used it or worn it in a year and my life has been just peachy without it, it's probably not doing me any favors. So, out it goes! But here's a surprising side effect: decluttering has also been teaching me how to let go of control. And if you're a caregiver, you know how hard it is to loosen that death grip on trying to manage every little thing. But by practicing letting go of physical stuff, I've been inadvertently learning how to release control in other parts of my life.
So, yeah, decluttering might not be the most glamorous form of self-care out there, but for me, it's been a lifesaver. I’ve got lots still that I’m still working on getting rid, but even the small progress I’ve made has helped in making space for a clearer mind. And when you're a caregiver, that's the kind of self-care that money can't buy.
Eat something that doesn't come out of a bag or a box. Bonus points if it's actually green.
You know what's ironic? We caregivers can be so diligent about making sure our loved ones eat well, but when it comes to our own grub, we're often scraping the bottom of the barrel. It's like we've got this double standard where they deserve the best, but we'll settle for whatever we can shove in our faces between crises. As an emotional eater, this self-care practice doesn’t come easily at all, but I keep it in the rotation to remind myself that my nutritional nurishment = mind + body + spiritual nourishment… and I need all 3 for this wild ride!
Let your loved one just be, without you entertaining them or fussing over them for a few minutes. This has been a game changer for me. I am a helicopter caregiver by nature. I have control issues, anxiety issues, and I’m still working through functioning without my Mom’s attention - which I’m embarrassed to admit as a 40 yr old woman but I blame my only child status for that. Moral of the story is that letting people just be is not my strong suit! Granted, I want you to just let ME be, but I want all your attention LOL. Oh goodness, I am truly an only child hahaha. ANYWAY, as you can possibly imagine, this can really take away from time to just care for myself if I’m consumed with needing to keep an eye on, be next too, entertain, my Mom. So I’m created some boundaries in this area that have super rough and blurred edges still but compared to the nothing I had before, these boundaries are still progress.
When my Mom is having a moody moment and basically treats me like I’m her mortal enemy, I create some separation. I make sure she’s safe, that everything that needs to be locked is locked, I pull up my Blink app on my phone, go into my room with the door open and work on something that matters to me while she hopefully forgets her irritation and I regulate my emotions if needed… which always happens eventually. I’ll also sit on the couch with her and will just scroll on TikTok for a few while she’s content watching TV so that I have an opportunity to do something mindless for a few minutes. Also, I do not always indulge my Mom in her every Alzheimer’s whim. What I mean by that is when she wants me to “Come here…” dozens of times a day because she wants me to whisper to me that “the ladies” took her shirt or she wants to show me a piece of lint on her blanket, I don’t always in that moment jump and go. I first read her mood. If she’s afraid or anxious, I will attend to her need right then because not doing so in that state of mind can create a state of emergency very quickly, but if she’s calm she’s not urgent, I’ll respond “Okay, give me just a couple minutes and I’ll be right there. I just need to finish this up a moment” and if she’s in a calm state and it’s nothing pressing, she’s good with that because I said I would be there.
Now, this may not get everyone’s buy-in, which is ok, but I found that even though I don’t do this often, it’s a good form of self-care in that it reminds me that I don’t have to treat every Alzheimer’s whim as the highest priority item. She’s always going to obsess over lint and there’s more than enough lint in the world to give her opportunity to obsess over and want me to pick off! At the end of the day, it’s okay to give my Mom space to navigate some small things solo. Of course it’s something that’s dependent on where your loved one is in the disease and what their capabilities are, so you’ll have to use your own discretion, but this could be a great little source of self-care for someone who needs it.
Let’s throw it back to the D.A.R.E days (for those of us old enough to know what that is) and just say "no" to things or people that take more than they give (or just take energy when you need to save energy at the moment), and don't apologize for it.
I have, even the day of, texted friends and let them know that I’m so exhausted and would like to cancel or reschedule plans due to needing to recharge. Now, I don’t make a practice of cancelling plans the day of because I do want to be respectful of people’s time, but I am saying that I HAVE done it before. There have been times I’ve been dead depleted and I was really trying to rally because I felt guilty about not seeing friends often enough, but then the day came and my body just said “NOT TODAY, SIS!” and honestly it’s like I didn’t have a choice. It was like I was having to choose between friendship and health, and I chose health. Yes, you risk offending people, but the real ones will get over it eventually if you are transparent with the need and also, as long as you’re not abusing it because we don’t want to burn bridges with our friends just because they love us. There’s a fine line, but get comfortable with saying no and being attuned to when you need to decline plans.
Move your body, not for diet purposes, but just for your mental health. Talk a walk, put on a YouTube workout video, do some bicep curls in front of the TV, or work up a little sweat dancing. You just running around for your loved one doesn’t count. This movement is for you and about you! The great thing about this is that you can kill two birds with one stone if needed - help your loved one more their body while you move yours! I did this a lot when I had a gym I could use at my apartment community before I relocated. When I needed to get a workout in I packed a little bag for my Mom with some water and a couple magazines, put her on the recumbent bike, and did my thing. I knew she’d only be good for maybe 30 minutes but I learned how to make the most of those minutes. Sometimes she’d just sit on one of the benches and watched the TV and sometimes she’d want to do a little workout with me. Either way, it was a win win.
Taking care of yourself doesn't make you selfish – it makes you smart. It makes you resilient. It makes you a warrior. So let's stop wearing exhaustion and martyrdom like badges of honor, and start embracing self-care as the bold act of self-preservation that it is. Our loved ones need us, but more importantly, we need us. So let's start showing up for ourselves, one small act of self-care at a time.