I’m about to make a long story short…
My dad ended up on a ventilator two weeks ago today.
Quick Q and A:
Q: Did he have COVID? A: Nope.
Q: How long was he ventilated? A: Just a couple days (fortunately).
Q: Is he okay now? A: I’m not sure I’d say okay, but he’s back home. I am still pretty concerned about what the next steps might be, and I have this feeling in my stomach when my phone rings.
He was in a hospital about 2 1/2 hours from me, and I did a few trips back and forth, staying at a hotel (thanks to free Marriott points) near the hospital for two to three days at a time.
There was a day after the ventilator was taken out that he was refusing to stay in bed (even though he was unsteady on his feet) and the hospital put a camera in his room to keep an eye on him. They would have had a “sitter” to make sure he didn’t fall, but they couldn’t find one.
When I asked how he was doing, he said, “I am being spied upon.” And he was. He was on camera when he was using the commode by his bed.
To be fair to my father, he refused to stay in bed because he urgently needed to use the commode and couldn’t wait 10 minutes for someone to answer his call light. And then he got lectured by well-meaning nurses.
As for me…I was there…but sometimes not there. I found myself keeping up with various aspects of my job by finding creative places to zoom and take what I considered to be important phone calls (although they weren’t that important–all things considered).
When my dad was in the ICU, a nurse slammed the glass door of his room shut because I apparently exceeded the accepted volume level on my zoom call. If you know me, you are probably not surprised by this. I only have one volume and it’s loud. I felt awful.
A physical therapy assistant took pity on me and introduced me to a conference room that was used mostly for storage. I did a 40 minute presentation to a Lions’ Club on Rotary there. Then next day it seemed to be occupied, so I zoomed from the NICU waiting room. I was told no one ever hangs out there. Oh, and one afternoon I was zooming while sitting on the floor of the vending machine room.
The great thing about COVID (as if there is a great thing…) is that we’ve learned to make things work when we aren’t in the ideal place to work.
When my dad was asleep, which wasn’t often, I would do anything to not talk in his room so that he could continue to sleep. When was awake, he seemed to enjoy listening to me work whether it was troubleshooting a parking issue at the dementia simulation house or answering a student question. I found that my work conversations tended to entertain him more than the Winter Olympics, although he got pretty engaged in curling.
I dropped some balls at work. I apologized to my college students for being a couple days delayed on grading their assignments. One emailed me back to tell me NOT to grade their papers until things calmed down. My students are the best. THE BEST.
I am not eliciting sympathy here. I am not unique. I am walking the same journey millions of Americans walk every single day. And I understand that I am, in many ways, privileged in how I walk this journey. I have a ridiculous amount of Marriott points. I have gracious colleagues (a million thanks to my dementia simulation house right hand, Megan) that covered for me when I was gone and were willing to adjust meeting times so that I could be at the start of the visitor COVID screening line and get into the hospital right at 9am. And, I have some knowledge of resources because of the field that I work in, although I quickly learned that my knowledge of resources isn’t that impressive when I have a father who is resistant to accepting assistance.
Balancing work and caregiving is a necessity for many. Some of us can quit our jobs when a loved one needs significant care, but the reality is that most of us cannot.
Whether it’s a loved one with cancer, Alzheimer’s, Parkinson’s, Huntington’s Disease, or schizophrenia, the world around us continues. Our jobs continue. We can’t give up our health insurance. We have to pay our mortgages. And we have responsibilities other than our loved one, even when we consider our loved one to be most important responsibility.
So we continue. We take work phone calls from the ICU and pretend everything is normal. We make plans for Monday meetings when we worry that our loved one will decline….and we won’t be able to make that Monday meeting. We have colleagues (like Eran, David, Megan, Susan) who are understanding. We have colleagues who are less understanding.
We are supposed to have these two separate lives–our work lives and our personal lives. But your work life bleeds into your personal life. And your personal life bleeds into your work life. And you realize you are on a zoom meeting sitting next to your 75 year old father who has only been breathing on his own for 18 hours–and he’s asking questions like, “Do you have insurance on the dementia simulation house? If someone gets hurt, can they sue you?”
My dad was on the ventilator last Tuesday but doing well enough to be taken off. They allowed his sedation to wear off. He was wide awake while we waited for a respiratory therapist to arrive for the process. I was trying to keep his brain busy. I showed him some pics of my pets. I mentioned that I would stay the night in town, even if we had to cancel a dementia simulation house the next day. He started waving his hands in the air. I couldn’t figure out what he was trying to tell me, so I grabbed a notebook and pen out of my backpack.
In nearly undecipherable chicken scratch, he wrote—–You need a better name.
I didn’t get it at first. Then I got it.
He was telling me we needed a new name for the dem sim house.
And we do. So as they pulled out the ventilator, I talked about naming rights…because I was out of stuff to talk about and I felt like I needed to keep talking.
My experiences are different than yours, and I know my journey with family caregiving isn’t over. In fact, it is just beginning, and I may be in for some adventures over the next few years.
But we all gotta do this.
You have to face a situation where a loved one is sick, struggling, and needs you. In the moment, you’re in a crisis and life seems a bit surreal. But you call work or check in with a colleague. You send an email and let your coworkers know what’s happening. If you’re as lucky as I am, your coworkers are also your friends. They ask what they can do to help and what you need.
You answer a quick work call here and there. There are big, seemingly important things you have to do but once you are doing them you realize you don’t remember what you’ve been doing the last 20 minutes. You realize Wednesday you didn’t answer an email that someone sent Monday, and you apologize, even though considering the circumstances the email seems pretty insignificant.
If you’re me, you realize your laptop charger is 2 1/2 hours away and you have to give a zoom presentation in two hours. Best Buy tells you that you can’t buy a charger because you have a Dell and you have to order a Dell charger from the company. You panic and buy a new Chromebook. You feel guilty you spent $118 because you forget your charger, but your new Chromebook is pretty sweet.
You just make it work.
I made it work.
I would have preferred to not to be in this situation, and it was exhausting…and I am about to say something you aren’t supposed to say.
I am proud of myself.
I managed to frantically juggle a million things and modified a hundred meetings and plans, but after a couple of weeks, I felt proud. I am not saying I could have keep this up forever because I probably couldn’t have kept it up another week…yet I did have a sense of pride for making it work.
If you are a blog reader who has cared for a loved one with dementia for years, please don’t think I am comparing myself to you. I am not–and this isn’t a contest. I am saying that you are amazing. I would love it if you took a deep breath and took a moment to realize that. Every day, you make it work. You get out of bed and you make it work.
You are doing it. Maybe not perfectly. Maybe not without tears. Maybe not without a few margaritas. But you are doing it.
And we continue to do it.
From the bottom of my heart, I see you. I see how you care for your loved ones and how you manage other roles and responsibilities and just life. I see you, and I appreciate you.
And I need a better name for the dem sim house.