Dad isn’t waking up. Please help…
Hey, Reddit. I’m going through a really tough time; tougher than when I lost my mother as a teen. My best friend is my father who just turned 90. 5 ft 9. Weighs 245 lbs. Some SLIGHT dementia. He’s currently in the CICU
Anyway, I’m partly doing this to calm my mind down, partly because there actually may be some proper insights from you (thank you deeply, in advance), or at least questions I can ask when I see the palliative care team in the next 13 hours. Please excuse the manner in which I write; all jumbled… I’m panicking.
He has been the best father anyone can ask for. Both when mom died and when I got sick longterm, he was there with me through everything. Stopping neither emotionally nor financially to help support me when I became bedridden after a workplace accident that I got nothing out of except medical costs (now I’m bedridden only some days).
Perhaps it is naive of me, but I’m making this post because I DON’T want him to die - I mean that I am meeting with palliative care tomorrow, yes, and I know they will discuss him potentially dying, but my understanding is that the doctors, while very cautious about giving me false hope, have stated it’s possible for him to live.
But it’s not looking good. He came in with a massive blockage in, I believe, his LAD artery. That was fixed via a stent. I was so happy. So relieved. But he developed pneumonia from aspirating on water a week earlier and was dealing with both medical issues at the same time… That wasn’t looking good. But now it’s pretty much being handled… they think he could recover from THAT specifically (heart and lungs).
Here’s the problem, though… he’s been intubated for 10 days. He started on 95% ventilator dependency and is now 35% (with SPO2 at nearly 97-100%. Breathing around 25 breaths a minute, sometimes it shoots up to 32 if he’s positioned suboptimally) and I believe they’re confident they can get it down lower and lower, since he’s managing the oxygen well. Enzymes show up with some liver and kidney damage, but they’ve told me it’s not that bad. However, they’re also juggling HIT and a (hoping for insight here) HUGE bloody blister the size of an American Quarter in both length and depth below his right ring finger. Just sprang up yesterday. His right wrist and hand is quite purple. I’m guessing it’s related to the HIT issues and them juggling (anti) coagulants?
The other (biggest) problem, is he is not responsive to commands. They essentially see a way forward to recovery if he was just responding to commands. His brain is not bleeding; he has not had a stroke; there’s no serious abnormalities with it at all, is what they say. They did an MRI and CT scan already. “No new issues”, they say. Neurology got him to open his eyes half way by yelling at him as they press his chest in a painful manner. But that result wasn’t repeated the next couple times they tried... They just “Don’t know” why he’s not “waking up”. Note that parts of his body are indeed responding to stimuli like his eyes respond to the tissue test (touching his eye). It will close on its own if you open his eyelids, too - his eyes kind of go back and forth gently before he forcibly closes his eyelids if you’re holding them open after about 8 seconds. He doesn’t follow movement at the moment. He does bite down on the suction tube and mouth cleaning utensil and moves his jaw during that several times, but they’ve mentioned this is likely just a physical automatic reaction … he moves his head side to side quite often (every 15 seconds or so). The neurologist says he’s not in pain, but likely in a deep sleep where he’s likely not even dreaming. ALL of the doctors (CICU Doctors; The Neurologists; Cardiologists even (I think) have said they don’t know why he isn’t waking up. They keep saying to wait a day at a time… see if tomorrow he opens his eyes. However, been 10 days intubated… and their tone sounds increasingly worried, and the fact they’re sending palliative care to talk to me in 13 hours has me freaking out. But that’s the thing; a tracheostomy could give us some more time, but obviously the longer he’s on it, the weaker he will be - right?? But he could also awaken and gain consciousness??
He’s likely going to die, right? (Sorry, unfair question - especially with such little information given… but I’m trying).
The doctors told me there’s no wrong answer in what we choose, but we should respect his wishes. He and I have spoken about a hypothetical like this happening years ago. His wishes were to do what it took to give him some semblance of normalized once again, but NOT a life where he’s in constant suffering, intubated permanently.
This is an above-average large hospital he was flown to by helicopter, when my local one didn’t have the ability to do the specific type of stent they needed to do (again, that was a great success). But it’s not a university teaching hospital like Stanford. I guess what I’m asking anyone with this type of medical knowledge for insight….
Do I keep fighting to give him a chance (tracheostomy)? What do I ask the palliative care team in 14 hours, the doctors (that I likely haven’t already)? or perhaps someone has some insights??
I just don’t get why he’s not waking up. Is it as simple as he just needs more time? They have said “sometimes it just takes 90 year olds extra time to recover and awaken”. I believe what my other family members want to do is to give him a few more weeks time (with tracheostomy) to see if he can recover in some meaningful way (I want this, and believe Dad would, too) Or at least gain consciousness enough to where we can talk to him and ask him. Is 3 weeks too little? Too much? I mentioned giving him more time, like a month and a week, but my family members mentioned quality of life. That if he improves it will be over two weeks or not at all in a realistic way. I’m kind of doing this on my own, since my other family members work a lot and so it’s only been me by his side 36 hours then sleep and repeat (except for a 5 day period when they visited). Thanks very much for any insight… I know I have to do right by Dad…
Thanks.
And for anyone reading this, please never put off spending time with your parents or doing that thing you’ve been planning to do with them. I’m kicking myself for missing several of those, even though I’ve been by his side daily and told him I love him daily… one thing that has been helpful is that I did have the wherewithal to put my phone down in “voice memo” mode years ago and have recorded 2 hours of him just talking about random stuff like family. It’s helping listening to him… but damn, this is so tough. Almost unbearable.