In keeping with the theme of the five stages of grief, let's look at one of my most recent examples of Stage 1: Denial, shall we?
I'll refer back, not that far actually, to my blog post of Friday, October 20, 2023, "Speaking of loaded questions...". Don't worry, you don't have to actually go back and re-read it, I'll bring the relevant parts here to refresh your memory.
It's in about paragraph 4. "Dad's doing alright, slowly regaining strength...[h]e doesn't seem to have suffered any great cognitive setbacks from having the 'vid and being bedbound for a couple of weeks..."
You see, deep down inside, my biggest fear when I first heard he had COVID and was being sent to the hospital was that he wasn't going to leave the hospital. Because I already knew that most patients with dementia don't die "of dementia" per se, but they succumb to secondary infections (like pneumonia, influenza, COVID) or other chronic conditions (like COPD, CHF, renal failure).
Shortly after writing that post, I was at my Mom's parents' house, spending a WFH day there to keep my Mom company and help out with a few things when I'm finished working (as I have been doing on a regular basis) when she got a phone call. I mean, she gets a fair amount of phone calls during the day now, at least when I'm there, and because I'm nosy and also because there's pretty much a straight shot from the kitchen to the living room, I could pretty easily overhear her side of the conversation (if I muted the TV and stopped typing so I could hear).
The first thing that raised my suspicion was that she moved to the office, which is slightly out of the straight shot from the kitchen to the living room, and struck me as odd and like she was either (A) going there to take notes and/or (B) going there so I couldn't hear. It made me listen even harder. I couldn't hear every word she was saying but the overall tone changed and I heard her say "hospice". Which made me forget everything else going on, instantly. "Um, what?" I said out loud, to no one. But I stayed in my seat. Hospice?? I'm pretty sure that's when Anger started, ha, ha (but not like funny ha, ha). Of course, you idiot, I yelled at myself. You are such an idiot. He's gone from a wheelchair to a Broda chair. A sit-to-stand to a Hoyer. Mechanical soft to pureed. You told yourself he was getting better but he's not. You knew better. The signs were all there. This one is totally on you. You suck.
I remember once, a few years ago, when he was first in a long-term facility -- it was when my mom broke her hip and he was at the VA for a while, and I told the VA social worker that, as a nurse I had recognized he was showing signs of dementia but as a daughter I was having trouble "reporting" them to my Mom, know what I mean? And I remember the social worker assuring me that was a completely normal reaction, because I'm not his nurse, I'm his daughter. It's not my job to assess him. She assured me over and over again that I shouldn't feel bad about things like that. But obviously, I still do. I feel like, if I can't even take care of the people closest to me, what good am I as a medical professional?
Anyway, back to the story, because I've only got 20 minutes of my break left. Usually after my mom finishes a phone call, especially one about my Dad, she'll come to the kitchen (my "office" when I'm WFH from her house) and update me, but this time she went back to the living room. And usually I'll let her wait until she's ready to come update me, but this time I didn't. I marched my little "Now I'm In Mama Bear Mode" self into the living room, announcing, "I heard you say 'hospice' -- what is going on with THAT?!?" And she said, "Just give me a minute, and I'll update you."
So I did. I went back to my "desk" (the kitchen table) and took a deep breath and went back to watching the Zoom meeting I was supposed to be watching.
LONG STORY SHORT: The attending provider and care team were recommending that my Dad undergo evaluation for admission (how many more words can I fit in here before I get to the ones I hate writing, ha ha) to the hospice program, because they felt that he "qualified" for it since he had declined "so much" since he had COVID. They "sold it" as a good thing for him, because he would get extra care with an aide coming to see him at least once a week, and a nurse coming to see him at least once a week as well, and that he'd qualify for extra benefits through the VA and yadda yadda yadda.
Now, I don't mean to sound so sarcastic with the words I put in quotes in the above paragraph. As a so-called medical professional, you better believe that I strongly believe in the vision and importance of a good hospice program. I whole-heartedly believe that is is so vitally important to focus on a person's comfort, happiness, and overall well-being, especially if they are in the end stages of their life on earth. Take away the unnecessary medications, keep them comfortable, support them and their family in whatever their wishes are as they prepare to transition from this world to the next.
But it is a completely different story reaction when you hear that word in association with your own family.
Even if you know it's going to happen at some point. Even if you know that point is going to be sooner rather than later. Even if it's something you may have even wished for, in some ways, because you don't want your family member to suffer any longer.
For the record, I felt the same way (to different degrees) recently when I had to review/sign some documents for my parents' funeral pre-planning arrangements, and when I learned that my mom had officially made my dad DNR (if you don't know what that means, ask me another time because I don't want to explain it right now). I agree, I just...seeing it in writing... it's becoming clearer now why Anger kicked in, is it not?
Anyway. I think that happened on a Wednesday? And the evaluation was to take place on a Thursday and Friday. I tell you what, I cried at least once every day after that. On the Sunday after that, the hospice team asked to meet with my Mom to go over their suggestions, and I asked to be there, too. Of course, their recommendation was to admit Dad to hospice. I'll spare all the details for now because it was just a lot of explaining by the nurse and the social worker, and paper signing (none of which was really new to me, because I'd seen it all so many times from the other side and just kind of zoned out so I could be The Strong One for my Mom) and me asking my mom if she had any questions because I didn't want to have to explain it all to her once the social worker and the nurse left.
The funny thing is, after the paperwork was signed and it was "official", I felt relieved. I wasn't expecting that. The overwhelming sadness and dread I had been feeling was still there but to a much lesser extent, and I just felt relieved. I'm still processing that one.
So now, instead of the "My Dad's in a nursing home" thought popping into my head at random times, making me sad and angry and confused, the "My Dad is in hospice" thought pops into my head at frequent and random times, and usually makes me tear up and makes me sad and angry and confused. I don't cry every single day anymore, but most days, I'd say. And usually triggered by some specific random thought now, instead of any old random thought. Like, at first I would have to force myself to think of other things or else my mind would just focus on that and I'd be a pool of sobbing sadness in a matter of seconds. But now, it's kind of the opposite. Most of the time, my thoughts aren't sad, but every now and then a thought or a memory will pop up for no apparent reason and I'll get teary-eyed. It's all part of the process, I know. The part One of the parts that sucks is that, for all of these times I'm going through all of these stages of grief, I know there is still going to be The Big One to go through.
Oh my gosh, I could write so much more about this. There are more things I want to share! Like how sad my Dad looked the first time I visited him after the phone call mentioned above, how I was/am completely convinced that he knew/knows what was going on even though my Mom didn't tell him, and how that image of him still sticks with me and makes me cry and makes me feel like it's my fault. Like he could read it on my face or something. Or my sister...don't get me started on that right now. But, I have to get back to work now.
I'll have to update you on Max sometime, too, because he's not doing any better.
So much I want to write about...so little time...
