Friday, September 4, 2020

Hospice: Our New Normal

 Cathy has been in Hospice for five weeks now. It feels like forever. I am struggling with watching Cathy's gradual shutting down. She is at the point now where she is bedridden; her leg muscles can't support her and so any scenery changes she wants to make are done with nurses and a wheelchair. Her short term memory continues to fade, as well. People, faces, events and things are all crystal clear to her. But she can't keep up with her phone. In bed. She can't quite remember from day-to-day how to work it, either. She learns it in the morning, but by the evening, she needs help again. Hospice keeps telling me it's "disease progression." It's getting on my nerves. She's not sick, she's hungry. 

Her body is still alive; it wants to be. It's running the best it can on such limited calories. They give her food, and then two hours later, they have to pump most of it back out. She's not getting even all of the protein that's in the meager amount of food she's drinking. So she gets a little weaker every day as her body tries to pull fuel in from somewhere and unfortunately, it's taking it out of her muscles. 

She used to not be able to sit through a two hour movie. She had to get up, move around, always be doing something. Now she needs help going to the bathroom. I know she's angry and frustrated, but she doesn't yell or scream. She's always apologetic when she calls them in for help. I have to remind her to work through her feelings with the councilor who visits every day. Otherwise, she'd ask them how their day was. So, she's still Cathy, as much as she possibly can be. 

Me? I am a shotgun shell full of bile and broken glass. I have no place to put my inexhaustible rage, and so I have made the decision to stay as far away from people as I can for the time being. Also, I'm limiting my Internet exposure, for reasons I shouldn't have to explain. Finally, I am so in fight-or-flight mode that I have fallen back on my old failsafe of compartmentalizing. Yes, it's compartmentalizing, that wonderful coping mechanism handed down from father to son throughout the ages. Here's how it works:

Picture a paper bag in your mind. Now, from inside your own head, scream into that paper bag like you are falling into the abyss. When you're out of breath, simply gather up the bag and drop it into a box marked "shit I don't want to process right now" and put that box on the metal shelf in your mental garage. That's it!  Now there's no more crying! No more yelling at the television! Displaced aggression? Forget it about it. It's compartmentalization! And it's good for current events, inexplicable tragedies, and any kind of trauma you've not processed as an adult. Compartmentalization: Try it Today!

I'm not kidding. I can't seem to function without running into Cathy-Thoughts, and it derails me for up to an hour sometimes. Working the business without her seems particularly invasive, a betrayal on my part as I try to make sense of where we are in this ongoing fustercluck with regard to re-opening the theater. I have to do my part, and then think about what Cathy would be doing, and it feels like I'm writing a letter with someone else's hand. I hate it. 

This New Normal is just that; this is our life right now, and it's effectively on hold. While it's on hold, I have decided to get a head start now on making sure I don't follow my wife six months later. Starting next week, I will be on a medically supervised diet to get this weight off as quickly and as safely as possible. My health has gotten worse since all of this started, and I am frankly worried that I am setting myself up for a major problem that I can't come back from. Also, Cathy is worried about me and has mobilized several of her friends and family to check on me to make sure I don't wind up face-down in a bucket of bean dip.

I am telling you this because I will be talking and posting about this often, and I don't want this to seem like it's coming out of the blue. In truth, this has been on the table since 2018, before our world became Oncology 101. l don't regret one second of it; I made the right call. But I also put my own health at risk and I can't do that anymore. Especially not now. 

I know some of you are worried about me, too, and I appreciate it. That's why I am doing it. You must be exhausted worrying about us. It's gone on for long enough. This has been a long time coming. I need a distraction, and y'all need a little peace of mind, and this kills two birds with one stone. 

The girls, chilling at home, years ago. 


Christopher Gronlund said...

Obviously, I hate all you and Cathy are dealing with. I wish you could make all of it physical and beat the shit out of it and be like, "Well, whew...okay, that was a thing!"

I also wish you all the best with dropping weight. I'd say if you need a buddy to email progress updates to, I'm working on the same thing, but a doctor is much better than I'd be.

Love y'all! (Cynthia sends her love, too!)

Jim Adcock said...

Tell Cathy that you have friends who care about you and we'll keep an eye on you when she can't.

You have an open invitation to get your ass to Austin to hang out and talk comics and movies and TV and all the nerdy stuff, but given the logistics you're also welcome to hang out virtually and nerd out anytime. Distraction is a key component of compartmentalization!

jcrawfie said...

We are standing by Marko. If a 70 yr old med tech can help you, i am ready. I have a good idea what your mental state is ( Kathy has IBM). And my katana is sharp.......if you need anyone killed. Other than that obstruction.
Please take care of yourself.


Charles Gramlich said...

Man, I'm so sorry. this has got to be the toughest thing you've ever dealt with. And for her, of course. I'm thinking of you, brother.

elisha fraser said...

Tough times. The toughest. I have no words of wisdom. I know you are doing as you need to do, for yourself, for your wife - even for us.
Best I can do is to remind you, if you need reminding, that we, that collective we, are out there. Some, like me, are as here as you need us to be, a message away. Or a phonecall.
My best, always.

SethS said...

I think I say this with every post, but I can't imagine the stress and hell you two are going through, brother. I'm always grateful to read the updates just to know how it's going, and I know they're hard to keep posting. So I'm rooting for you.

Doug Potter said...

Mark- It's not so much worrying about you guys. You seem to be dealing with this in as adult a way as you can.
What it is, for me is feeling helpless thinking about what you're going through. I know that's just the way it is, but that doesn't help and I know we, all of us, wish we could.

J. Juday said...

Hello, Mark. Thank you for checking in. You are right about there being a lot of people thinking of you both and wishing you strength.
I am here to cheer-lead on that focus on your own health. Every journey like that is different, but having done my own work on that over the last few years, I can at least offer cheer-leading and sympathy and such, so know that you have that form this listener. If it's time, it's time.
Wishing you strength and fortitude.

Unknown said...

Start with walking. Just walking. Walk as far as you can and then walk back. Use that time to un-compartmentalize some rage and walk faster or stomp your feet or kick rocks and run after them. Let you mind wander or don't think at all. Walk for your mental health and your physical health. with love, Missy from the gym

Beebe said...

Prayers continue for endurance. We care because we want to care. Never think you guys are burdens. What a joy and blessing you both are.
And yep..walk. Maybe 5 min. But walk fur her. Shed want that.
Love you both dearly

DeAnne D. said...

I'm here, I'm listening, and I'm available for y'all anytime you need anything. You're always welcome to The Pond, and the bunnies would love to see puppy, they miss being chased since Boo passed. I love you dude, and I'm here if you need me.

Jeff Fair said...

You and Cathy are in our prayers and on our minds. I’m glad to hear of your weight loss plans and look forward to updates written in your inimitable style.

Kimberley said...

Ohmigawsh Mark, my heart is breaking for y'all. I just happened to get on Brett's facebook page and fell down the rabbit hole. I'm going to light every candle in the house for Cathy. Love and light and healing energy your way! xoxoxoxoxoxoxo

Nahteboy said...

There's not much that can really be said that you probably haven't already heard time and again. I'm sure it feels like a black hole is just draining all your energy and life force as you just have to sit and watch. Somewhere, she knows you're there for her, Mark, even if she forgets things on a daily basis, she knows...

As far as your health goes, the stress of this situation definitely isn't helping, but seeking help is wise. You know you need to improve your health, and those of us that consider you a friend, want you to improve, as well.

Best wishes to all of you. I doubt if Cathy remembers me after all these years. Think the last time I saw her was my last time at REH Days in 2010, perhaps. Regardless, give her one more hug for me along with my love for the both of you.

nephite blood spartan heart said...

I’m sorry Mark, prayers for you two.