I had another meeting scheduled yesterday afternoon (Friday, Oct 30, 2026 at 3p) with three of Gene’s senior doctors and two members of his supportive care team. Unfortunately, I was unable to attend because I’d become ill after the strain of the past week or so.

I’ve been pushing myself pretty hard, running on too little sleep and not giving my own body the rest or nourishment it needs. I picked up something rather nasty during my recent visits to Gene at the hospital (specifically Tuesday night). It inevitably caught up with me.

I’ve spent the intervening days recovering at home and finally feel better, but I haven’t been sitting idle. I’ve used the time to take another deep dive into Gene’s medical records, recent test results, procedures, and the many moving parts of his current health situation. I wanted to make sure I had as clear an understanding as possible of where things stand and what still needs attention.

Although I couldn’t be there in person yesterday, I sent Gene’s lead doctor an email outlining my concerns, requests, and the direction I want the medical team to follow in Gene’s care going forward. That way, my position, and the instructions I am communicating on Gene’s behalf, are on record even in my absence. I’ve included that email below so you can see exactly what I have communicated to the team.

I also want to take a moment to acknowledge Nina for something especially thoughtful and helpful.

The pocket-talker device mentioned in my email, along with the special earphones selected for Gene’s particular situation, given all the tubes and medical equipment he has connected to him, is being made possible through Nina’s generosity. She also helped provide an extra set of rechargeable batteries and a charger.

As many of you know, Gene’s situation has become financially demanding in ways that are difficult to keep up with. Much of his medical coverage has stopped covering key aspects of his critical care, leaving me to manage increasingly burdensome co-pays. On top of that, the cost of traveling the hour between my home in Valley Glen and Cedars-Sinai Medical Center in West Hollywood several times a week, often by Uber, continues to add up.

So when I reached out to Nina last night (Thursday) and asked whether she could help me get a device that would allow Dad to hear the doctors and nurses caring for him, she responded within minutes with the resources I needed to order the equipment.

That may seem like a relatively small thing, but it isn’t. Gene’s hearing difficulty has made communication one of the biggest obstacles in his care. Giving him a better chance to hear the people around him could make an enormous difference in his ability to understand what’s happening and participate in his own care.

Thank you very much, Nina. Your kindness and willingness to step in so quickly mean a great deal to me, and I know they will mean a great deal to Dad as well.

With appreciation,
Alexa

---

Email to Gene’s Doctors, Oct 30, 2026

Subject: Gene Oaks (MRN 202274526): today’s 3p meeting and a proposed plan

Dr. Lee,

With apologies for having to reschedule our meeting today, but I’m still feeling too under the weather to have come in as planned. And my cough makes it very difficult to get through more than a few sentences, so a call or Zoom wouldn’t have worked either. But, never one to waste time or not learn something new, and especially given the critical circumstances at hand, I’ve been using my convalescence downtime to further research and study my dad’s situation and the possible care paths ahead. Here are some of my research observations and thoughts regarding the same.

My decision for now: I’m not going to sign the POLST or move my dad to hospice at this time. I’d like him to remain Full Code with full restorative treatment while we give one specific problem a fair test: his hearing.

I know how sick he is. I’ve listened to every concern you and Drs. Mamzhi and Finch have raised about the dialysis, the ileostomy and TPN, the trach, the infections, the wounds, and the risk of readmission, and I don’t take any of it lightly. But the reason I keep hearing for why he won’t improve is his mental status, and I believe a large part of what looks like confusion is a man who can’t hear what’s being asked of him.

When he can follow what’s said, he follows it:

• On Tuesday evening I brought 23 large-print signs. He understood every one and responded appropriately.
• Dr. Mamzhi wrote on October 19 that his “mental status [was] notably improved today, answers questions appropriately when written down but remains unable to hear. Fully oriented.” ENT found him oriented x3 and answering written questions the same day.
• On October 21, Dr. Mamzhi noted he was oriented x3 with a writing pad and “appears to be completely or nearly completely deaf.”
• Psychiatry wrote on October 26 that his mentation was improving as the Seroquel came down.
• When you called yesterday, you told me he was following the doctors’ and nurses’ cues and cooperating without the typical incidents we’ve come to know.

He has also told me plainly that he wants to recover and keep living. On October 21 he told me he wants to go back to his facility, which Dr. Finch recorded. He does not want end-of-life care.

What I’m asking for is a two-week trial, through Friday, November 13:

1. Hearing support at every interaction. I’ve ordered a Williams AV Pocketalker, special earphones, and extra rechargeable batteries that should arrive Saturday or Sunday. I will bring it in and teach my dad how to use it. How can we make sure that staff use it for every exam and conversation with him going foward? Would I be approved to place a sign over his bed to remind staff of his hearing loss and use of a pocket-talker? In the interim, till said pocket-talker device arrives, if the care unit has an amplifier to lend, he could start today?
2. ENT follow-through. On October 19, ENT recommended a high-dose steroid taper for his hearing, plus an audiogram after discharge. I don’t see the steroid taper in the notes I have. Was it started, or ruled out? If oral or IV steroids aren’t safe for him, would ENT consider steroid injections directly into the ear (intratympanic) instead?
3. A fresh cognitive and capacity assessment once he can hear, with the amplifier in place and his speaking valve on. If he’s able to take part in his own goals-of-care conversation, he should be in it.
4. The video swallow study. It was canceled on October 23 because of his oxygen, not because he failed it. Now that his oxygen needs are coming down, could SLP reschedule it with the amplifier in place so he can follow the instructions? I could schedule to be there to help him feel calm if that’s best.
5. A review of sedating medications. Psychiatry’s October 12 consult noted that “medication accumulation, particularly gabapentin in ESRD, warrants attention,” and he’s still on 300 mg twice daily. Could pharmacy and nephrology look at whether it can be reduced or stopped?
6. Keeping the NG tube in. Would a nasal bridle be an option? Fewer pulls would mean fewer reinsertions and, ideally, less time in restraints.
7. Language. His first language is Russian. While he speaks, reads, and writes English with 98% fluency, I’ve learned that a bilingual or multilingual individual can temporarily revert to their native language upon waking from heavy sedation or general anesthesia, though the opposite can also occur due to drug-induced disruption of language control networks, with the native language often being the less energetically demanding default during emergence. I know that in recent years, when he’s been tired or stressed, he would sometimes randomly switch to speaking Russian with me in common conversations, so perhaps a Russian interpreter or written Russian directives may also help him follow instructions better.

I’d welcome palliative care’s help with his comfort alongside all of this. I understand that’s different from hospice.

If, by the end of the trial, he still can’t communicate with the amplifier in place and isn’t getting stronger, I’ll sit down with you and revisit everything with an open mind. I’m only asking that we judge his mind after we’ve given his ears a fair chance.

In the meantime, my understanding is that he remains Full Code under his current orders, which matches what he has told me he wants.

I’d like to meet in person as soon as I’m well, ideally Wednesday, November 4, with my dad included if he’s able. Until my voice comes back, email is the best way to reach me.

Thank you for the care you’ve given him, and for calling yesterday. It meant a great deal.

Alexa Oaks
Daughter and health care agent for Eugene “Gene” Oaks
424.303.2187