Support resources for families dealing with cancer and other serious illnesses

vividsailor7 said:Gastropathy caused by portal hypertension—basically high pressure in the portal vein—is what’s driving the ascites and those dilated veins in the stomach and esophagus. He's showing low platelet counts, which likely points toward a vitamin K deficiency.
Cholecystolithiasis means he's got gallstones.
Malnutrition is also an issue here.
He's dealing with Stage III/V chronic renal failure.
The ascites is making it hard for him to urinate properly.

So, getting him on Kalinorm would be a smart move. I'd also suggest something like Ensure or Prosure to help tackle the cachexia.

Kimberly Wright said:did Ostojić just claim on FOX that this is the century of hospice care?
What is he even talking about? 😕

Tell me which show that was on, I'm genuinely curious. Was it on The Washington Post?

Unfortunately, I ended up in this group 😢. My mother is in the hospital, and her condition is just devastating. She’s on oxygen through a nasal cannula and receiving a glucose infusion with other medications mixed in. Her skin feels strange, almost tacky, and the color looks several shades darker than the hospital sheets. She is refusing all forms of assistance. Yesterday morning, she pulled everything off herself—the oxygen, the IV, the needles... they actually had to restrain her limbs, so now she's getting her IV through a vein in her leg. Her diagnoses include COPD, heart failure, a broken hip, and she struggles with suicidal ideation. I'm not sure what to do; maybe there isn't much I can do? Just wait for the end? The hardest part is that she rejects any help at all.

crimsonfox5 said:Unfortunately, I ended up in this group 😢. I was at my mother's hospital bedside, and the situation is absolutely gut-wrenching. She’s on supplemental oxygen via a nasal cannula and an IV drip for glucose mixed with her other meds. Her skin looks strange—almost tacky or sticky—and the color is several shades darker than the hospital sheets. She’s refusing every bit of help we offer. Yesterday morning, she ripped everything out of herself—the oxygen, the IV, the needles... they actually had to restrain her limbs, so now they're running the IV through a vein in her leg. As for diagnoses, she's dealing with COPD, heart failure, a broken hip, and she's struggling with suicidal ideation. I honestly don't know what to do. Maybe nothing? Just wait for the light to go out? The hardest part is watching her fight against the very help she needs.

I am so sorry you're going through this. She’s probably on sedatives. Look, there isn't much you can do. You are exactly where you need to be to support her as much as possible. Hang in there.

Angela Wright said:Could you tell me which show that was on? I'm actually pretty curious. Was it on The Washington Post?

Yeah, it was on The Washington Post. They had Ostojić and Milinović as guests.
I just couldn't quite wrap my head around the context when Ostojić brought it up—was he framing it as a campaign promise, or was it just some random comment that didn't really connect to anything else? 🤷

Angela Wright said:So, looking at the situation, taking Kalinorm would actually be a solid move. It’s a good idea. It’s also about using something like Ensure or Prosure to deal with that cachexia.

I wrote Vitamin K, not potassium! Adding potassium to something like Aldactone is a recipe for disaster—you'd be looking at fatal hyperkalemia. Besides, Vitamin K is typically administered intravenously anyway. On that point, I completely agree.

Angela Wright said:Can you tell me which show that was on? I’m dying to know. Was it on The Washington Post?

The full interview is right there on the FOX website; what they showed on the news was just a tiny snippet.

crimsonfox5 said:Unfortunately, I ended up in this group because 😢.I was at my mother's hospital, and her condition is just horrific! She’s on supplemental oxygen through a nasal cannula and an IV drip for glucose mixed with her other meds. Her skin looks strange—almost sticky?! And the color... it's several shades darker than the hospital sheets! To make matters worse, she's rejecting every single bit of help offered. Yesterday morning, she ripped everything right off herself—the oxygen, the IV, the needles... they actually had to restrain her arms and legs, so now she's getting fluids through a vein in her leg. As for diagnoses, she's dealing with COPD, heart failure, a broken hip, and she's struggling with suicidal ideation. I honestly don't know what to do. Maybe nothing? Just wait for the end? The absolute worst part is how much she fights against any assistance.

She likely has respiratory insufficiency as well. But honestly, that broken hip is the real killer here. It makes it nearly impossible for things to take a turn for the better.

vividsailor7 said:I wrote Vitamin K, because combining potassium with Aldactone is a recipe for disaster—you'd end up with fatal hyperkalemia. Usually, Vitamin K is administered IV. I'm with you on this one.

🤦 Every time I see "K," my brain jumps straight to potassium.🙈 I totally saw that "vitamin" typo coming... It's hard to type accurately when I've got my little one tucked in my arms while I'm typing.😁

Angela Wright said:🤦 Every time I see those potassium levels dropping, I’m rushing straight to the Kalinorm.🙈 I totally called that "vitamin" nonsense coming. Honestly, this is just me typing away while I have my little one tucked in my arms.😁

Look, there's no need to panic.
🙂

vividsailor7 said:The full interview is actually posted on the FOX website; what they showed on The Washington Post was just a tiny snippet of the whole thing.

What exactly did he mention regarding the Hospice? That there isn't such a thing as a flat rate?

Kimberly Wright said:Did Ostojić just go on FOX and claim that this is the century of hospice?
What exactly is he getting at? 😕

Look, we’re living in the 21st century. In the Western world, things like Hospice have been established for ages. We live in this era of an information explosion—we have the internet, smartphones, and enough tech at our fingertips to skip a trip to the doctor for every little sniffle. Technology is supposed to streamline everything, from outpatient clinics to specialized hospice care. But here? We're stuck. By failing to mention these services, they're indirectly pointing out how much this administration has dropped the ball. They took on the obligation from the European Union to have a proper Palliative Care facility up and running by 2007, yet here we are, years later, still waiting for something that should have been a given.
That’s exactly how I saw it.🤷
Dr. Ostojić is actually a highly regarded physician who really knows his stuff.

Angela Wright said:Of course, we just don't have that here, which basically points to the failures of this administration—they were supposed to step up and meet their obligations to the European Union to establish our first dedicated Palliative Care facility by 2007, yet here we are, years later, still waiting for something that simply doesn't exist.

It’s quite a shame, really.😢

Kimberly Wright said:how tragic 😢

To put it simply, I’ve heard rumors about this new regulation. Is it true they plan to cut down on nursing home residents? Apparently, elder care is being shifted toward geriatric day centers and visiting nurses, while nursing homes are slowly being rebranded as Palliative Care centers?

Here’s the link to the initiative page—my apologies if this has already been posted somewhere:

http://www.ostaniuzmene.com/?p=854

Dr. Lončar’s take on the regulations. Are we ever going to see light at the end of this tunnel?
http://www.ostaniuzmene.com/?p=921

A quote from a presentation on that same site (from back in 2008):
"Palliative Care facilities exist in cities like Chicago, Houston, Atlanta, Denver, and Phoenix."
http://www.ostaniuzmene.com/wp-conte...e-medicine.pdf
Another quote for you: In America, over 30,000 people need Palliative Care, yet only about 200 actually receive it. To make matters worse, family caregivers don't even get sick leave to look after their loved ones at home.

@swiftgardener/">@@swiftgardener
thanks so much for those links 🙂

I can't help but worry that instead of reforming the system, the government might just let public nursing homes shutter, which would only pave the way for more private facilities—those places that are often absolute nightmares where the state simply chooses to look the other way 👎

I actually stumbled upon a link for the Friends of Hospice group yesterday, so if anyone feels like reading up on their work, here it is

vividsailor7 said:There might be some respiratory insufficiency as well. Honestly, the broken hip is likely the worst part. It seems unlikely things will take a turn for the better.

Some new issues have come up.😛She’s having trouble swallowing and is refusing her medication—unless it’s through an IV, since she can't really control that—because she feels like "they want to poison her" or are performing some kind of dark magic on her. I guess they aren't quite sure what to do anymore; her mental state is declining alongside her physical health. She probably needs to be in a facility that combines psychiatric care with internal medicine. Does a specialized center like that exist here in the States?

The issue isn't about finding physical space for more Hospice facilities. It’s much easier to just build a house or repurpose an existing building—I mean, look at how some of those new hospitals end up being used as nothing more than storage warehouses.
The real bottleneck is the workforce available to staff them. Palliative care is its own distinct medical specialty, separate from preventative or curative medicine. We only recently established a dedicated palliative care department at the major medical university in Chicago, so we are currently facing a massive shortage of specialists. This applies to doctors, but it’s especially critical for the medical technicians who actually spend the most time working directly with these patients.
You can't lump geriatrics in with palliative care. The needs of an elderly person reaching the natural end of their life are fundamentally different from someone battling a terminal, aggressive disease.

Nobody here was actually poking around the intersection of palliative care and geriatrics. The discussion regarding nursing homes only came up because we were talking about the possibility of repurposing them into palliative care facilities. I just chimed in to point out that the whole situation with senior living centers is already a mess, thanks to those unregulated private operators, so we really ought to protect our state-run retirement homes.

Kimberly Wright said:No one here was actually touching on palliative care or geriatrics. The nursing homes were only mentioned regarding the possibility of converting them into palliative care facilities. My point was simply that the situation with senior living facilities is already a total mess thanks to those unregulated private operators, so we really need to protect our state-run retirement homes.

That wasn't my implication at all. I made an independent observation regardless of what you wrote, because there's this common misconception that people skilled at working with the elderly are automatically equipped to handle palliative care.

aha. ok.