Archive Notes: This is an English translation and rewritten version of a blog post originally published in Japanese on October 22, 2019. [Japanese version]
Yesterday, I received a phone call from the neurosurgeon in charge of my father at the hospital where he is currently admitted.
He was calling to let me know that the referral letter for our local family doctor—which I had previously requested, complete with his brain CT scans—was finally ready.
However, what truly caught me off guard was when the doctor added, “By the way, if you decide to go with a gastric tube (PEG), we can perform the procedure here before his discharge.”
Perhaps it was just a thoughtful gesture, considering that a gastric tube might be easier to manage at home than nasal tube feeding.
Still, I’ve already made it clear: we do not want life-prolonging treatments.
So, I politely declined the offer.
Lately, every single day brings a fresh wave of heavy decisions that need to be made right away.
I sent an email to the care manager asking to set up a home visit so we could specifically discuss what nursing care supplies we need to prepare, but I haven’t received a reply yet. I’m pretty sure it was read immediately, though.
I got tired of just sitting around waiting, so over the past two days, I went ahead and ordered items like sleepwear and a pulse oximeter online.
Since these aren’t everyday purchases, just ordering a single item takes quite a bit of time and effort.
Last night, I went to bed around 10:30 PM and fell asleep quite easily. But once I woke up around 3:50 AM, that was it—my head became so completely flooded with endless thoughts that I couldn’t fall back asleep at all.
It is brutal.
It really, really hurts.
I feel terribly sleepy during the day, but with the constant thought of “I have to get to the hospital” running through my mind, I can’t settle down enough to take a quick nap before evening comes.
Once 4:00 PM rolls around, panic sets in because I know I have to bring dinner to my dad.
And when I try to talk with him, the intense stress makes me feel like I’m about to develop a stomach ulcer…
When I reported to him, “The hospital wrote the referral letter for us, so I’m going to go pick it up,” his response was completely bewildering:
“Why on earth do we need something like that?”
“They’re just trying to charge us extra money again!”
Wait, what?!
Of course we need it! We absolutely do!
I was so stunned by his absurd reaction that I couldn’t even find the words to reply.
I am utterly exhausted.
Exhausted beyond words.
I just want to scream at the top of my lungs!
When I arrived at the hospital, the nurse was waiting to give me a hands-on caregiving lesson. Honestly, I had already mastered everything she was showing me.
My dad was breathing quietly, so forcing a sputum suctioning felt unnecessary, and I decided to skip it this time.
Instead, I focused on cleaning his mouth. Doing mouth care for someone who refuses to open their mouth is surprisingly tough, isn’t it?
Fortunately, there was no bowel movement today, so changing his diaper was smooth sailing.
Since he cannot urinate on his own right now, he undergoes catheterization three times a day. While I prefer to keep him free from tubes as much as possible, if his condition doesn’t improve with medication after a urological checkup, a re-insertion of a catheter might be unavoidable.
It seems that most people feel they wouldn’t want life-prolonging treatments for themselves if they ever became bedridden with an incurable condition.
Yet, when that moment actually comes, it isn’t the patient who communicates with the hospital—it’s the family. And in most cases, family members find it nearly impossible to make the painful decision to pull the plug on life support.
My only real fear right now is whether my own body can withstand this grueling, overwhelming routine.
