I'm looking for a general practitioner covering the wider Brooklyn, Downtown, or Trnje areas. Honestly, after what I went through yesterday, the comments regarding the replacement doctors were just a total disaster—the mindset and the way people were talking was so off. For me, having broad medical expertise is the most important thing. Everything else is secondary, I guess. I really need someone who will issue referrals for acute pain and actually wants to help people. Ideally, they should be close to a subway stop, too. And maybe someone who isn't afraid to express their own opinion? If they happen to have an EKG machine in the office, that’s just a huge plus. I know some offices used to have them. I definitely want to avoid one specific health center in Brooklyn, but any other place would be fine. I think the real issue started when I voiced my concerns while my bedridden patient was already in such a critical state. The home health agency barely knew anything and kept meddling in everything, which just made things harder for me. It would be great if it's possible to walk in without an appointment and get basic referrals, because based on yesterday, I don't know how else to describe it... it just felt like they didn't care about me at all.
I didn't cancel on them at all. When I was scheduled, I showed up and waited for an entire month. I really don't see any point in being bitter about it, but if anyone else has gone through this, maybe you could share what your experience was like?
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.
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.
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.
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.
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.
So, there are these Fresubin nutritional drinks you can get with a prescription. At least, they used to be easier to get if it was listed on the discharge papers, and then you’d just order them through the pharmacy. You can also pick up Prosure in those little tetra packs quite easily—most pharmacies carry them. I stopped giving it to my mom because it was causing her diarrhea, but she had already recovered by then, so it wasn't strictly necessary anymore. If you are looking for a specific type of Fresubin, I guess you should really check with the doctor first, since there are so many different kinds. They aren't just different flavors; the actual ingredients vary too, so the doctor can have the pharmacy order a full supply tailored to what's needed. As for that over-the-counter Prosure, it isn't too expensive. It comes in chocolate or vanilla, and maybe you could just buy a few individual packs first to see which flavor he actually likes.
I had one really bad experience over at St. Catherine, and honestly, I don't think I'll be going back there. I've actually been present for several instances where people were voicing complaints about how they operate. It’s right across from General Electric, where the staff is always polite and actually seems to care about the patients. But at St. Catherine? Not so much anymore. I mean, sure, they have some good doctors and their new equipment is fine, but they just treat everyone like they're on an assembly line. They lack kindness, and they definitely lack patience. If they aren't feeling up to working on a specific day—and I waited a whole month for my appointment—then they shouldn't have scheduled me for that day in the first place. Regardless of whether they feel like working or not, you're still paying for the consultation. They talk about patients behind their backs, like "oh, this person didn't show up," they push certain tests on you, and sometimes they even seem to mock people. I've been to two smaller private clinics, and I swear, nobody behaves quite like the people at this place.
Does anyone happen to have a recommendation for a neurosurgeon? Specifically one who specializes in cranial issues rather than spine work. I think I've heard the best specialist is at St. Catherine, but I really don't want to go there. Does that doctor practice privately anywhere else, or maybe you could suggest another neurosurgeon who focuses on the head?
Commode chair. It’s a little awkward to admit, but I was just doing some routine searching online. If anyone happens to have incontinence pads available, feel free to shoot me a DM to buy them. Honestly, they're a much better solution than just using thin toilet paper. Or maybe even those baby training pants. I wouldn't normally go looking for these things, but I have some left over from caring for a bedridden patient, and they might actually come in handy for me.
I’ve honestly never heard of that specific ointment before. I guess you could just head over to a Walgreens and ask if they still carry it. Sometimes you can even place a special order if they don't have it on the shelf—or at least they can tell you if there's a shortage or if it's been pulled from the market entirely. Usually, those pharmacists really want to make a sale, so if it's possible to get it, I imagine they'll try to order it for you. I remember once at a pharmacy, they were pushing so many different products on me that I actually felt a little awkward saying no. I kept thinking, maybe they have something else I actually need more, so I might as well let them order it. In a big city like Washington, D.C., there are plenty of pharmacies to choose from, so you should have some options.
shadowbison75 said:Dad is fully aware of everything, yet he’s completely helpless...
He hasn't put any food or drink in his mouth for three months now; we have to feed him entirely through a feeding tube. It’s just... he was a man who truly enjoyed food, my mom’s home cooking, all those little things... and now, he can't even take a sip of water. 😢 And on top of that, he can't speak at all... I think that’s what’s killing him even more. If there’s something he wants to tell us, he just can't.
It is incredibly hard for me to come to terms with this, really, deeply hard...
We don't show any weakness in front of him: we laugh, we talk to him like he's still his old self, recounting how our day went, but inside, we are just breaking apart.
I am so sorry you are going through this. It is just so difficult. It has been eight months since my dad passed away. He couldn't swallow liquids either. There wasn't a specific reason, other than maybe just old age. He didn't have cancer or a stroke, but he was 88. My mom was 68 and in a much tougher state, dealing with sepsis in the hospital, but while she was conscious, she could normally swallow water and tea. Dad was also fully aware. He watched me the whole time. He fought until the very end. It was just that the nasogastric tube just didn't work for him. It felt too short, and it kept shifting every hour. In my opinion, those are only meant for hospital use. But they sent him to the nursing home with that kind of tube and even said the staff there had to manage it. Honestly, rarely did any nurse at the facility have experience with that. I didn't dare try to do it myself because, well, I was just so afraid of everything.
It’s the same with General Electric. I mean, they always went out of their way to help me, and you could tell they actually cared about making things right. I have nothing but respect for them. Honestly, it's because you just don't see that kind of effort everywhere else.
Thanks for clarifying that. I really didn't mean anything by it. She was older, you know, so she probably didn't have all the answers quite like you do. I unfortunately lost touch with her. Even back when she was still living at home, I used to go visit her, even while I was still in school. She meant so much to me... she felt like family. But then my nephew took over some of the caregiving duties—I think I was about 17 at the time. She ended up staying in a nursing home for a while after that.
Rockefeller is also a great hospital; they really helped my grandmother back in 2003. She had lung cancer, and they did her CT scans, but they didn't even need to use a urinary catheter. They have pulmonary palliative care there too. I actually tried to get my dad admitted there for two weeks through a referral, but maybe they just didn't have the space because they were completely full. Please, don't speak about things you don't truly understand. There was this one elderly gentleman last winter who was actually saved at Rockefeller because the Infectious disease ward wouldn't help him. And back in 2014, I personally had to take my dad from the Infectious disease unit over to Holy Spirit on the very day he was discharged. It wasn't until we got to the urology department there that they finally gave him the antibiotics he needed for home. They explained everything so clearly to me, which was such a relief, because the Infectious disease ward had basically just kicked him out and told me to go find another hospital. It feels like our seniors are in such a terrible position here, but I guess you shouldn't judge if you haven't lived it. I called Rockefeller last summer, too, and they mentioned they don't handle emergencies. At the Infectious disease ward, the only people who were kind were the nurses; they actually seemed embarrassed that a certain doctor would just toss out an elderly, semi-mobile patient like that.
If we're talking about an immobile patient dealing with rheumatism, then I guess it’s definitely better if they aren't at Dubrava Hospital, but instead over at Holy Spirit Hospital, where they generally take much better care of patients who can't move around. I actually knew this elderly lady once who was also immobile because of her rheumatism; she ended up in a nursing home mostly because that was a long time ago. Her condition actually took a turn for the worse after she went to a spa retreat. I suppose those treatments just didn't sit right with her, even though she was still mobile before she decided to go to the spa.
I’m not saying every department at Dubrava Hospital is terrible, but the pulmonary ward for standard lung patients? It’s a total disaster. Looking at the staff list, there were plenty of nurses, including one young woman who stepped up this morning and said, "We're on it." Well, they did absolutely nothing. Everything was sitting there unopened—even the creams—and she actually had the nerve to tell me to send more creams. They insisted on running invasive tests on him, which felt completely unnecessary since there was no point in putting an immobile patient through all that stress. At the other hospital he was at a month ago, they wouldn't have even dreamed of doing those kinds of tests. They just focused on supportive care; he was on oxygen and receiving IV antibiotics, but they didn't push those invasive procedures.
If it were possible, I would go back to Holy Spirit in a heartbeat. They were always so kind to him, even with his immobility, and to me while I was by his side. We went there for regular urology checkups and even emergency internal medicine visits; they truly tried their best to help. They were diligent and hardworking—they even changed his diaper once while he was under observation because we had been waiting so long for medical transport to get us home. One time, they even drew blood, which I wasn’t even expecting, but they did it because of how advanced in age he was. My experiences at the ER of this other hospital in the same city were... different. They sent him home with a fever—three separate times! It wasn't until the third attempt that they actually kept him, and by then, he was already in such critical condition. My resilient dad, though, he survives it all. Honestly, I was terrified being alone with him; even though I have nursing training, I can't be expected to administer IVs or change catheters at home, and most of the home health nurses aren't very skilled with medical procedures anyway. At that other hospital, based on where we live, they suggested he go to a care facility. I asked which one, and they dressed him and sent him off, but honestly, the pulmonary ward at Vinogradska Hospital is excellent. However, the facility where he stayed for the last month falls under the jurisdiction of Dubrava Hospital. So, the doctor from the facility gave a referral to that hospital. The ER staff there were fine, except things were a bit chaotic. But those seven days at Dubrava Hospital? A living nightmare. They just don't care about immobile patients. They wouldn't even change his shirt for an entire week, even when it was 98 degrees out in the summer. I had the option to call private transport and take him to a different hospital, but I listened to that facility doctor instead. Because he wasn't considered life-threateningly ill when he arrived at Dubrava a week prior, they basically let him go to the facility just to die. Please, if you have someone who is immobile, do NOT send them to Dubrava Hospital. They told me they provide great care, and I believed them. It didn't feel like they were lying to me. Everything just seemed to fall apart. There were no visitors allowed.
If you go through a referral, they’re actually very kind. They really seem to want to help, and they'll likely point you toward whatever follow-up testing you might need at the Holy Spirit Cardiology Clinic. They’ll review all your results and probably ask about other health issues, too. It isn't crowded—maybe just a few people hanging around later, around 1 p.m.