Support for families dealing with cancer and other serious illnesses (Part II)

Secondly, try smaller meals that are nutrient-dense; just let them eat whatever they can manage. My patient was also quite thin—I think that goes hand in hand with being immobile and spending so much time in bed, because you just lose all that muscle mass. I'd suggest trying to get them to sit up at least once in a while, maybe by propping some pillows behind their back for support.

While he was waiting for radiation, we were mixing up all sorts of foods at home, supplementing everything with Prosure / Ensure. We try to give him plenty of fruits and veggies—basically whatever he asks for—even if swallowing is such a struggle... he still asks for food and shows interest...
We're feeding him through his G-tube several times a day.
But he’s definitely losing weight... I know there's no magic wand to just suddenly "fix" a patient like this...😢

I have this feeling that the Fresubin is actually better because it’s prescribed for such specific needs. I honestly can't say for sure which exact one it was, though, since I just couldn't track down that old discharge summary. It comes in different varieties with different ingredients. My patient was once given a specific type based on his discharge papers—I guess they just wrote out the whole formula on the prescription and had the pharmacy order the full kit. It seems like a higher quality preparation than the Prosure in the tetra packs, especially since it comes in those plastic bottles. Interestingly, they never specified that particular one on his discharge papers again, even though he was still quite weak back in 2017, not just during that period in 2015 when they explicitly noted which Fresubin to recommend on the paperwork.

Maybe you could reach out to the palliative care team and ask if they can stop by for a visit? I guess they might be able to offer some solid advice regarding nutrition.

We’ll reach out to his doctor once he’s done with radiation to see about getting home health or palliative care set up...
He’s only home on weekends now. During the week, he’s at the clinic for radiation...

They might send home health aides if the doctor isn't available for house calls, but honestly, in my experience with patients this critically ill, those aides don't know much. They’ll write a prescription for diapers, send over some meds or dressings, and that’s pretty much it. Getting an IV infusion is a different level entirely. In my opinion, home health should be able to handle an infusion, but clearly, they weren't equipped for it. If you have access to a palliative mobile team, you should definitely have them come out. Using home health for infusions was... hit or miss, at best. They’re just so overwhelmed, and with everyone being on vacation—it was last summer, and it’s so easy for a patient to get dehydrated in the heat if they don't get that IV fluids in time. Even the private nurses I tried calling were all away on vacation. You can always provide water through a G-tube. My loved one ended up with a nasogastric tube, but by then he was already in a nursing home. Though, a G-tube is actually better; those NG tubes are too short, they constantly slip, and I spent so much time arguing with the staff at the facility about it. They just wouldn't switch him. He was conscious, and I'm certain he could have eaten pureed food; the only real struggle was getting enough water.

I ended up buying the IV fluids and the infusion kit myself. It wouldn't have been such a huge deal if it weren't for the fact that the local pharmacy staff didn't really know what they were looking at—so I had to wait for a medical technician to go out and pick everything up. Once that happened, though, I finally figured out exactly what supplies we needed for the setup. Honestly, since it's summer right now, if he's having trouble swallowing, just make sure to give him water through the gastrostomy tube. Having that option is such a blessing, because trying to manage an IV setup at home... man, it was incredibly difficult for me. You have to wait for the technician to head out, then things get delayed, and suddenly nothing happens until tomorrow morning. I eventually just decided I couldn't do it anymore and that he’d have to go to a care facility. But even there, things weren't exactly perfect either.

How is everyone doing with their fathers? No one seems to be posting anything. I really hope things are going relatively well. If anyone has any questions and I can help—or if I think I might know the answer—I’d be more than happy to assist. You can even shoot me a private message.

mistyjackal842 said:How are your fathers doing? No one is posting anything. I hope things are relatively okay. If there are any questions and I can help, I will... feel free to DM me.

Dad is still getting radiation. It's on schedule. He only missed one day because the machine broke down. No major side effects from the radiation itself yet...

He’s gotten so weak, really... especially since being in the hospital.
I truly hope we can somehow get him back on his feet once he's out of the hospital...
I hope...😢😢😢

Things are going pretty badly for me. It’s just one thing after another, whether it's the illness itself or the side effects from chemo. I’m back in the hospital again with an infection—that makes five times this year.

ruggedgardener74 said:Things are going really poorly... it’s just one thing after another, whether it's the disease itself or the side effects from chemo. They're back in the hospital with an infection—that's the fifth time this year.

I just got word that it's sepsis.🙂

shadowbison75 said:Dad is still undergoing radiation. It’s going according to schedule. He only "missed" one day because the machine broke down. There haven't been any major side effects from the radiation itself.

He’s become so weak, just so weak... especially since he was admitted to the hospital.
I really, truly hope we can somehow "get him back on his feet" once he's discharged!!!
I really hope so...😢😢😢

I am so sorry you're dealing with this. If he's spending most of his time lying down, they really should be helping him sit up in a chair at least occasionally. Staying prone leads to losing muscle mass. Once he's home, try to get him into a recliner or a chair with good back support and plenty of pillows. Proper seating is actually vital. My dad ended up running a fever after being bedridden for three days because I didn't have anyone to call to help lift him up while I was away on vacation. Even the home health aide told me on Monday that she wouldn't assist with sitting him up. Which is ridiculous—it's such an easy task, and she seemed exhausted enough as it was. I ended up washing his hair and bathing him myself just so I wouldn't have to ask them for help. They finally sent a different nurse the following day who had no problem helping him sit up, since that really only takes a few minutes.

ruggedgardener74 said:They just notified me now that it's sepsis.🙂

If this came from a urinary catheter, they really ought to pull it out immediately and start IV antibiotics. I guess... maybe they should have acted faster. With my mom, they just kept waiting and waiting. But then again, there was a strike going on at the hospital back then. If you’re visiting, please, just react right away. Ask questions. Maybe it's best if just one person takes charge. There shouldn't be any waiting when dealing with patients that weak.

It’s pneumonia. They have them in the ICU right now. They're on three different antibiotics, getting transfusions, and a whole laundry list of other treatments. But nobody is giving us a straight answer on whether there's actually a chance they pull through. The situation is grim.

ruggedgardener74 said:It’s from pneumonia, and they have them in the ICU right now. They’re being hit with three different types of antibiotics plus blood transfusions and all sorts of things. But honestly, nobody is giving us a straight answer on whether there's even a fighting chance; the situation just looks grim.

Well, sepsis itself is incredibly dangerous, even for someone in perfect health. When you factor in chemotherapy, everything becomes significantly more complicated. Hang in there...

ruggedgardener74 said:It’s pneumonia, in the ICU. They have him on three different antibiotics plus transfusions and everything else... But nobody’s telling us if there’s actually a chance he pulls through. The situation is bad.

How's your dad doing? Any updates?...🙂

The numbers are starting to drop. Based on today’s results, it looks like the therapy is hitting the mark and things are trending in the right direction.
Dad is winning another fight. 🙂 At this point, we just keep praying and stay proud of how much strength he’s showing.

Bravo, bravo, bravo to Dad!!!
A true fighter...

ruggedgardener74 said:The numbers are finally starting to trend down. Looks like the treatment is actually hitting the mark based on today's labs...
Dad seems to be winning another round 🙂 at this point, we just pray and take pride in how much of a fighter he is...

How’s your dad doing? Any updates?

Slowly but surely, things are looking up. However, I can't say for certain if the underlying condition has worsened since they're still in the ICU. All we can do is wait and see how they fight through it...
How are things on your end?