Being an ALS Caregiver during the COVID-19 Pandemic

by | Mar 22, 2020 | ALS

EARLY STAGES IN THE U.S.

What a time to be alive. Everything just feels so weird right now. And that’s because it’s not something we’ve felt before. Pandemic. It just seems so crazy.

COVID-19 sounds so dramatic, yet coronavirus doesn’t seem to give the thing enough credit. It is dramatic. Pandemic is a word I’ve only learned for spelling and/or definition purposes. But this is not a drill. Shit got really real, really quick.

The first I’d really started hearing the buzz was the weekend my girlfriends flew in from Texas, which was 3/4/20. The virus was on our radars and everyone took precautions, such as wiping down surfaces on the plane, washing hands, etc.

That was two and a half weeks ago and so much has already changed. Schools are closed for a month, businesses are closed, food is scarce at the grocery store. There is no toilet paper, y’all. None! Seeing not just empty shelves but empty aisles of food are just weird.

Knowing what we know now, we might have called off girls’ weekend but hindsight is always 20/20. I’m just patiently waiting a couple more weeks to really feel in the clear. I’m trying not to overthink every single personal interaction from the last two weeks but my brain has a mind of its own! (buh-dump-chhhh!)

It’s not just my girlfriends, it’s everyone and everything coming into the house. At this point neither of us is going out unless it’s an emergency.

Once we saw things going down we ordered groceries and medical supplies to last for a bit so that things stopped coming in. We also decided that it would be best if we didn’t have our nurse come for the next few weeks. That hurts! That is much-needed help and rest that I get and without her, it makes things a bit more frustrating, as I’m exhausted and would love to let her take over for a few hours. That’s life though, ain’t it?!

There are lots of memes and jokes and we are all laughing right now but I know it’s going to get much worse before it gets better. (Though I blame no one for using humor to get through the anxiety.) I’ve been monitoring the CDC website and of course, I have a spreadsheet going. The data fascinates me and it’s changing by the hour. The good news is that we live in the age of social media, which allows the warnings to get out faster. Can you imagine if we didn’t have smartphones? Or TV? Or pigeons?! Gotta try and keep it light and find the jokes where you can, even still.

I started capturing data two days ago and the total number of deaths in the US (*cdc.com) was 150. They don’t report on the weekends but today is 3/22 and when I checked around 4 am on the web, various sources were reporting the number at 348.

At this point, we’ve got enough food and medical supplies for a bit, but there’s still a bit of a looming …something. It’s just nothing we’re used to, and none of us knows what to really expect. Unknown tends to freak us all out a little bit. Best we can do is hunker down, buckle up, and hang on for the ride.

I keep having flashes of the movie “Red Dawn” in my brain. My brother and I watched it dozens of times growing up. I feel that prepared me in some way? Plus all the camping and pioneering that Brian and I have done. Yeah. Right.

Then there’s the ventilator. Sometimes my brain goes down this overthinking path of that apocalyptic movie type scenario where I’m wheeling Brian down the road in his chair while I’m pulling a cart full of supplies behind me. Those supplies would become like gold to us if we couldn’t get them refilled. We could manage to reuse many of the parts for Brian’s trach, though the risk of other infections would surely increase by doing that. And if the power were to go out for an extended period, we’d need a generator and gas. Wow, went on down the rabbit hole there.

Yes, I’ve watched too many movies. Or Walking Dead! Still…in order to be prepared you need to think through all the possible scenarios that you can. As a caregiver, I now feel a bit neurotic, as I’ve got a quarantine area in the garage for incoming packages and things are cleaned before coming in. Can we be too careful?! Brian has made it almost ten years with ALS, we sure don’t want COVID-19 to be the thing that does him in.

While it’s a bit unnerving right now the anxiety is quite manageable and I am very interested to continue watching this unfold, as this is absolutely an historical thing we’re all experiencing. I’m sure that reporting is wonky right now but seeing the death toll double in two days gets me a bit on edge.

All the more reason to enjoy the bees and the sun (when it decides to make an appearance) and every little thing that you hold dear. Who knows where we are headed from here.

I hold much hope for a silver lining of more gratitude, love, and understanding across the globe. It’s showing up all over right now, that’s for sure. It’s something I’ve really enjoyed watching on social media, and that’s people helping each other. The love that’s being shown is so wonderful. It’s something that Brian and I get to experience regularly, and that is, people showing up for each other in amazing ways!

Things like viruses and vulnerabilities are what bring us together and remind us we’re all human and we’re all in this together.

Stay safe out there. Be vigilant and limit your contact with others. If you’re a caregiver like me, please don’t feel you’re being overly cautious or going too far with anything during this time. I’d much rather feel neurotic now than sorry later, wouldn’t you!? Easier said than done, I know. Just like the overthinking, right?!

Lots of love to everyone. I hope to write about this again in a week. Until then…

STAY HOME!!!

Jen
@jenlifeisgoodparker on Instagram

photo of couple brian and jen parker. brian has a tube coming from his throat because he has als

Hi there! We’re Brian and Jen

Here we share our journey with Brian’s ALS diagnosis, along with stuff we find interesting. We just started beekeeping and love to teach what we learn as we go. Life’s crazy, best to buckle up and enjoy the ride!

CHECK OUT BRIAN’S ART

Categories

LATEST POSTS

MORE FROM THE BLOG

Traveling Without You

A Weary Widow TRAVELING WITHOUT YOU Traveling without you is hard. That's me talking to my dead husband. We used to travel together all the time. When we met we were in...

I Miss the Old Me

A Weary Widow I MISS THE OLD ME I miss the old me. The one that could get it all done, that could balance so many things well. When Brian first died all I did was sleep....

error: Content is protected !!