I say “pseudo-caregiver” because my dad can mostly take care of himself…at least, I think he can. We suck at getting to the bottom of things in this family, and it’s something I’ve brought up a few times before, many months ago.
Well, I’ve spent weeks trying to get over throat issues and chest congestion, and figured it was just me. Now dad’s been dealing with chest congestion, and I have no idea how bad it is.
To get the gist, I need to backtrack a bit and say that I’d been his caregiver before, when he got laryngeal cancer and had a feeding tube and trach tube and couldn’t talk, several years ago. I had to make all the phone calls, I couldn’t go to work, I had to talk to insurance companies, pharmacies, and didn’t sleep deeply for months in case I missed that little “reception desk” bell I put by his bedside. The first night he came home I had my door shut and he was in major pain, ringing the bell for pain meds.
I crashed on the couch–5 feet from his door–for a week, and didn’t sleep more than 20 minutes a pop for three days, so I wouldn’t miss the sound. I had to train myself to just sleep with my bedroom door wide open and not feel weird about it for months.
That first night terrified me, and I’m sure he didn’t like that I was doing my best not to hover after that first frightening week. I tried to give him his privacy and all when I could, and gradually expanded outwards, away from his immediate needs to give him some dignity (of course, the bell was always there).
Dad said he’d only do chemo once. Partway through it, he told me that if he ever got cancer again, that was it–no chemo, nothing. He’d just stay home without all that poison in him. Considering I’d never seen the man so weak and helpless, I just told him I’d support that decision and wouldn’t let anybody bully him into doing chemo.
He knows how much he can handle; and he can’t handle chemo again.
The trouble is, he’s as bad at asking for help as I am…maybe even worse.
The radiation fried his throat; he’s down to a 35% airway. He has good lungs and a good heart, but the air can’t get where it needs, as much as it needs. When he had pneumonia, he’d get winded just putting on his clothes.
The scariest horror novel written can’t compare to the shiver that goes down my spine when I see that dad can’t get his air. Thursday morning was the most recent since his pneumonia attack a few months ago. He went to his favorite chair, and he looked like he was trying to calm down and I could hear him try to suck in air, slowly. His eyes were wide and he made harsh noises that sounded like he was sucking air through a straw.
He looked freaked out. Dad doesn’t get scared, but it’s clear he was.
I didn’t try to make him talk, obviously, but I just sat there, about to put my shoes on, waiting. I was at the point that I couldn’t tell what the hell I was supposed to do. His chest was really moving, like he was trying to get as much in one swoop as he could, and that was tricky as hell. I was waiting for a gesture or something and when he was calm enough to do indicate he was somewhat okay, I asked if he thought the nebulizer might help him out a bit.
It was a little weird that he hadn’t thought of it, or tried to go for his emergency inhaler. Then again, for all I know, that’s his usual go-to when I’m NOT there. It’s not like he tells me if he uses that stuff, and he hates being on medication.
But it was startling that he hadn’t even thought about that, that he hadn’t considered using the neb til I mentioned it. That freaked me out a little–would he have eventually come to the conclusion that he oughta try using it if I wasn’t there?
At random times he’ll be rather fatalistic about the way things are going. I don’t bother to ask “how are you feeling?” when I see him. When I see him after a bad day, I ask “feeling better than usual or same-old same-old?”
I swear, Gibbs from NCIS is more chatty than my dad these past few months.
I think we’re just trying not to annoy each other. And I tried to stay away from home so as not to give him my chest cold.
Either I gave it to him, or it was him going out there in the yard to mow that did it, with all that stuff flying around in the air. I’d hoped he’d put a dust mask on at least, or bandana, but it seems he didn’t. He did short bursts on the riding mower, a mower I’m hesitant to drive because I’m not used to it.
And the last time dad drove it, he ran into the side of the garage and pulled up some of the siding. I figured he’d call my uncle to give him a chance to chat, hang out, and use the mower.
That’s one of the reasons I really haven’t messed with it. I just didn’t expect dad to jump on it (and I kept thinking it would rain). More than that, I hadn’t been near it in months and didn’t know how to drive it. Dad’s not very patient when it comes to explaining how something works, especially when he’s already short of breath.
But he did, and maybe it’s the humidity come back, but last night he actually asked if we had some congestion meds. I had some, but not enough to last. So I went to the drug store first thing this morning to get some for him, liquid that he could put in his feeding tube, and left the house.
I stayed yesterday and was so profoundly bored I fell asleep in the middle of the afternoon, reading a book. I knew I had to get out of the house today, and just told dad to call me if he needed me.
He won’t, but now comes the guilt. I feel I should stay just in case, but I just couldn’t bring myself to stay home with him.
I hate being home, but I’m guilty and anxious being away.
It’s hard because for the most part, dad does for himself. He makes tea to put in his tube, feeds himself, goes to the bathroom by himself…but he just has breathing trouble sometimes. Dad’s day begins with getting up, making his tea, sitting down in his lazy chair, and other than trips to the bathroom, that’s where he stays between 12 and 16 hours a day.
So, I don’t know if he’s resigned that he can’t do anything else and is depressed and fatalistic, or he can do other things, but has no interest whatsoever.
But now he’s sitting in a chair with a congested chest and I just hope like hell it doesn’t get worse.
I feel guilty because if all he does is sit in that damned chair, getting angry with FUX news every day and watching old movies…has he given up? And if he has given up, why is he still hanging on?
Hell, that sounds bad, doesn’t it? I guess that requires some explanation.
It’s hard to see what’s really wrong with my dad because outwardly, except for looking a little grayer, he looks like he’s generally okay. But the human body is so tricky and I am constantly uncertain as to how he’s really doing. I mean, let’s face it: the human body can exist weeks without food, days without water, but only minutes without air.
And our focus is on the air part.
I feel like I should stick around more and be there at home, but he acts like he’s okay all the time, or other than some fatalistic jab (not intended as a joke, as far as I can tell, and pisses me off to hear), I don’t hear anything else.
The guilt part comes in because I wonder if he’s hanging around for me.
I hope not. I get sick of him doing me favors, or taking over things I’m trying to do so I don’t have to struggle.
That sounds narcissistic, because for all I know he’s okay and that’s why he’s not gotten any worse that I can tell (this week excepted). I don’t want him to die, but I don’t want him living in pain longer than he wants to, either.
We’re a crazy little pair in this house, and it’s no wonder I’m suffocating from rage (against myself), anxiety and guilt. Two fatalistic, possibly suicidal people living in the same house, trying to prop each other up. Dad doesn’t know about my own fatalism, though, and dammit, I don’t want him to know.
But the last time he gave me a credit-card lecture (he started paying for one of them, really pissing me off) and told me not to spend anymore, he said he wanted that balance to be down to zero before he kicked the bucket. I just stood at the door, settled for scoffing in disgust at that statement (part of me wanted to scream “WTF?”), and left.
He brings up “kicking the bucket” out of the blue a lot, and I just know I don’t like hearing it. I’m not in denial about him dying some day; it’s more that he’s not forthcoming about if he’s getting worse or anything like that, so I don’t know if he’s feeling like he wants to die or just doing that “in the event of” thing (very badly, I might add).
I am starting to think he wants to hang on at least until I get out of credit card debt. For one thing, the way my hours are being slashed, that’s going to take a while. For another, it’s horribly ironic the way I look at it:
If dad’s hanging on til my credit card debt is zero, it’s because he wants me to not have to struggle so hard to make ends meet with a mountain of debt under my belt and I can re-start life with what he leaves me.
On the other hand, when I was at my lowest a couple years ago, the only reason I hadn’t committed suicide yet (other than my Sister By Choice) was that I didn’t want anybody having to pick up the tab for my debts. I wanted to pay them off before I even considered dying.
Strange how debt is keeping us stubbornly alive right now, if my theory is correct, and dad doesn’t even know it.
I have plenty of depression and guilt to go around, namely in my own lack of life. I spent a few hours writing in my journal this afternoon, trying to shut up the cacophony of theories and feelings in favor of sorting them out. My depression comes out when I realize that all this “gotta stick with dad and help him out, even if I hate being at home” thing is partially a crutch…a huge, huge crutch.
I don’t know how to live alone, never had the opportunity. I don’t know how to find my own way in life. Living with dad, and dad living, means I can delay that thought process a while.
That also means I have a ton of changes to make in the next few months, namely with work. I have two jobs and no hours to speak of. Even though I’m getting some kind of income, I’ve been little miss reasonable for too freaking long at one of them. I’m not getting work hours, not enough to make a living on, and it’s time to make changes.
I’m also getting increasingly withdrawn from my colleagues anyway. My jobs are becoming bastions of loneliness. I’m at a front desk–alone, except for clients–most of the day in one; staying up all night–alone–at the other. And at my weekend night-job, I’m either a decade older or younger than most everybody there. I don’t have much to bring to the table, conversation-wise; their interests are so different and I have no clue what they’re talking about. Things changed so fast that I don’t feel like I’m part of the team anymore.
I’m the latchkey kid, all grown up and still going home after school, no friends or anything…and I’m almost 35 for crying out loud. A new job might just open up those opportunities to meet new people and make new friends.
I knew my depression was getting worse when I imagined just letting myself drop off the face of the Earth, just quitting that weekend job and never going back, never contacting any of them again. I’m sure they’d notice, but only because I wouldn’t be there to make good coffee and stay up all night so they wouldn’t have to take turns doing so.
I’m aware most of this is Depression talking, but I have to wake up and realize that, whether dad’s here or not, I HAVE to take strides and make my own life, with and without him. I suppose it’s my Anxiety and a voice in my head (which sounds a lot like dad) insisting that I shouldn’t be out so late or shouldn’t drive downtown Houston or whatever that’s stopped me the most. If I met someone and was madly in love, how would dad respond to me being out all night (or not coming back til morning)?
As his boring, latchkey-kid daughter, he’s never had to worry about me… so it’s never come up. But my anxiety of “what would dad think?” has stopped me over and over again. I almost let him talk me out of a once-in-a-lifetime, paid-for-by-grant opportunity to travel with my Geography class because he was all “what if you get kidnapped at the border?” (Thank God I went–I saw some great stuff and learned so much). But I never left home because it was more practical, more logical to save money and stay with him instead of paying rent.
But does that mean I’m never to leave? I must make serious changes to my mindset, and make efforts to get a better job, earn more money, and meet more people.
That can’t happen if I’m so crippled by the “what if’s” and “question marks”. And the biggest question mark of all–is it my guilt keeping me where I’m at the most, or him guilting me into staying? I think it’s subtle, but now I wonder–if I were to leave home, where would that put him?
I want to bash my brains against this nice wooden table so I can stop thinking about it. Depression for Dummies, here I come.
(Not kidding, got a copy right under my elbow as I type this–time to take notes and breathe).