I am not doing well.
Every day that I grit my teeth and push through, I feel more of my health bar burning and turning to ash, sizzling down toward the end. That is Andie I am giving up of myself to keep moving forward, despite the depleted reserves and frazzled nerves. Between hits, I have scarcely a moment to triage before tossing myself back into the fray, head off another day.
A few weeks ago, I got the unbelievable blessing of getting to go to my church in person. There were scant few of us there, observing social distancing guidelines and wearing our masks, chairs scattered about in the dark as we watched service remotely on a live stream. Sitting there allowing the hymns to swell my heart, I could acutely feel every crack and scar that these last few months have left. I became painfully aware of how broken I had allowed myself to become. I was so very grateful to UCC for making it possible and to God for allowing me, even for such a short time, to realize how essential coming together with our brothers and sisters in Christ each week is. How much I had been taking it for granted. If I walk away from this nightmare of a year with nothing but the health of my family and the knowledge of how lucky we are to worship God together, then this year will not have been a complete loss.
I am tired...all of the time. Regardless of how much sleep I get, it never feels like enough. The noise level in this house is so constant, so relentless that every sound feels like a physical blow and I flinch like a beaten dog at each sharp note. The simple act of feeding myself, even deciding what to eat, is just an absolute chore--nothing sounds good and I am not hungry. My existence feels like an ongoing fragility where any event, no matter how minor, could send me over the edge and I will just break down and cry again.
And you know what? I think you feel it, too.
Caregiver burnout is not something many people have had to face before. It is a spectre that perpetually lurks in the periphery of families with special needs (of any variety), threatening to overtake us should we fail to keep it at bay. The burden of round-the-clock care for one that cannot care for themselves often falls to a family member because the cost of assistance or hiring out is so astronomically high that it remains out of reach for most households.
As I sit here, my chest heavy with the enormity of another day’s responsibilities, my heart goes out to all of you that are struggling right now. I wanted to give a name to the hurt you are feeling, and to give you hope because you are not going through this alone.
Maybe I’m way off base. You’re sitting there reading this on your phone, the smell of another perfectly baked banana bread making your stomach growl as you sigh in contentment at another perfect day. Your kids are all clean and dressed and didn’t fight even once today, certainly not over who stepped on who’s empty shoe or who’s turn it was with the vacuum cleaner attachment they’ve deemed a weapon. Coffee was hot and makeup was on fleek and you are -crushing- this global catastrophe thing.
In which case: friend, I am happy for you and not jealous at all. Good on you, you high-functioning unicorn.
This post is slightly less for you, then. Maybe you can store the information in the back of your mind alongside your encyclopedic knowledge of “Tiger King” in case it benefits you or someone you know down the road. Or maybe it’ll just give you a glimpse of the struggle some of us are going through right now, give you a reason to be a little more patient, a little kinder to those around you because Lord knows we all need a little more kindness right now.
No, this post is for the busted down jalopies of human beings struggling through another day. You absolute disasters that served a meal best described as “it’s food—eat it” because you didn’t make it to the store (which reminds you to tell the kids to hold it because there wasn’t any TP on the shelves last time). Those that are considering lining the children up fully clothed in the backyard and spraying them down with the hose in a master shower/laundry sesh of multitasking. The ones that sat down on the floor and cried because it’s 2 o’clock Cry Time and you are so damn sick of everything.
People like me.
As with all topics, I am so far from being an expert. But I hope there is a nugget of something here you could use. If there is one thing that resonates, I think that would be enough.
I actually learned about caregiver burnout when I attended a seminar a few years ago on the topic so I could report back to REACH what I had learned. The seminar was hosted at Abilene Regional and was geared toward those that care for elderly relatives suffering from dementia. A lot of the information was applicable to us as well, though we had to adapt it for our special circumstances. It is okay; we are used to modifying resources to suit unique individuals (Ay-oh, SpEd joke; get ‘em while they’re hot.)
It is estimated that caregivers provided over $216,000,000,000 in cost of care last year, though of course they are not compensated for their time. I would be curious to see the numbers posted next year while untold households across the nation were affected by this pandemic. They are responsible for all duties “assigned or not assigned”, which basically means “the everything” relating to another person--they assist with everyday activities such as cooking, cleaning, driving, managing prescriptions, paying bills, health management, appointments, etc.
Starting to sound a little familiar?
Stress levels, physically, mentally, and emotionally are reported very high; most suffer from anxiety or depression or both.
They offered a couple of benefits like engaging you mentally and giving you something to do when you otherwise might not have much, but these are geared toward those in retirement. I am in the prime of my life, watching as I whither away and age before my time under the duress of constantly being needed. But there is one big benefit I have identified.
Spending time with the kids is undeniably a blessing. They are so funny, smart, wonderful little goblins, even when they are acting like downright sociopaths. The fact that I -can- stay at home, even stretched financially as we are, to care for them is a gift if for no other reason than I am getting this irreplaceable time with them to watch them grow and learn. There are many people in the world, but no one can care for your kids as well as you can--that is just facts. You know them better than anyone, they are a part of you.
The ugly truth that keeps coming up when discussing caregiver burnout is that there is no cure. A couple hours away, treating yourself to some self-care like getting your nails done or going on a date is not enough to undo the damage that has been accumulating for so long.
But…
There are some things that are proven to lessen the load. Kind of mitigate the damage as it occurs so there is less to deal with in the aftermath.
One of which is skills--establishing routines that you don’t deviate if you can help it. I know, it sounds so simple and frankly constricting. But the routine gives everyone expectations and can make an insecure world feel more secure. I encourage the routine to include both essential tasks of every day, like brushing teeth and taking meds, as well as those that you know are good for your soul but you put off. That looks different for a lot of people. Maybe it is taking a run, watching a show you enjoy, or putting on make-up and jewelry. For me, it is reading to my cat Oscar, playing a game with Mike, and writing in my dark closet. Things that don’t take a lot of time but remind you, even when you are most on the fritz, that you are a unique and special human being that has likes and dislikes, things that make you feel whole and like a person. It is a lifeline to who you were before and who you will be again when things get back to some semblance of normal.
Another skill we are coached to embrace is called Caregiver Grief. It is okay if you are not feeling grateful for this time together. You need to be able to feel upset that you are not getting to do the things you like to do, to miss having adult conversations and social interactions. To miss the freedom of being able to go where you want and do what you want. You are entitled to feel your feelings. Even if those feelings are “I want to throw the dirt in your face for the way you hold a dustpan” when you look at your spouse. Feelings I am sure everyone has had. We can’t always act on those feelings, but if we ignore them and feel like they don’t exist then we end up with a disconnect, wondering why everyone else is doing so well and we aren’t.
There are suggestions like reading about how to diffuse tense situations (I sing absurd parody songs that confuse and confound, take kids outside, make them run off energy—basically anything I can to keep tempers from flaring too hot), ask for help when you need it, take moments for yourself.
Treat yourself with exceptional kindness. You are going through a lot and sometimes, you’re the only one you’ll have on your side. Use gentle thoughts, be patient when you struggle or stumble. Don’t beat yourself up for what you didn’t get done, for losing your cool or for not looking your best. Your body’s job isn’t to look good or be productive—its purpose is to house a spiritual being. So today, it did an excellent job. And so did you.
The last suggestion is find your support.
Isn’t it wonderful that we have communication abilities even despite all that is going on? Nothing beats a face to face with someone you love, but it does the heart so much good to be reminded of all it keeps beating for. Call or text your best friend. Send stupid memes to your coworkers, or pictures of things you think they’ll like. Make social media posts that get people talking and engaged, or write a letter to someone you want to know better. Each connection is a string making up the rope that you are holding on to, pulling you through each moment to the next until you can stand on your own. When everything around you is uncertain, always remember:
We are all pulling for you.
—Andie
