Posts by mistyjackal842

I reached out to palliative care at the beginning of summer because Dad was struggling to swallow liquids, yogurt, or anything soft. But all they did was call in home health services, and he only received an IV drip for two days. It’s like once you set up the IV, they just disappear. There aren't enough staff members, and I guess during the summer, they have to cover such a massive territory. I don't understand why the home health nurse didn't just come first thing in the morning to administer the infusion—she's a head nurse, for heaven's sake, she writes about infants! She literally knew nothing about wound dressings, either. She would show up with this junior nurse who, honestly, eventually admitted to me that she had absolutely no clue how to handle the dressings; she was just acting important in front of the supervisor. Generally speaking, there seems to be so much medical incompetence around here. It feels like nurses who actually know what they're doing are a rarity. I honestly don't get what they're learning during their clinical rotations. Not a single nurse I encountered actually knew how to insert a new nasogastric tube; when you call the hospital to ask for help, they basically tell you that it’s something that has to be handled at the nursing home. In the end, Dad went into a skilled nursing facility because I was just too terrified that I wouldn't know how to manage that tube myself.

That’s exactly why I never even wanted to apply for caregiver status for my dad—not that I would have even qualified for it, anyway. Honestly, you have no idea how many malicious people are out there. I get it, finding a job is tough right now. But to suggest that someone needs to be constantly supervised? It’s just awful. A person is born to be free and live their own life. Maybe I was being a bit too blunt at times, and this one woman who acts like she’s so important didn't exactly take my feedback well. But you really have to realize that you encounter all kinds of personalities. She was absolutely livid with me. In a way, I think she even tried to get back at me. In the end, I was actually worried about running into trouble because it was clear her intentions weren't good.

It feels like you have the Department of Social Services breathing down your neck your entire life... they’re always watching, always running assessments on you. I guess I just could never handle someone constantly monitoring my every move like that.

I don't want to pry into anyone else's medical business. But my mom... she dealt with frequent venous thrombosis, including a pulmonary embolism once, so she ended up back in the hospital every few years because of it. Then in 2007, she started dealing with arterial insufficiency—blue foot syndrome, claudication, all that. On top of everything, she was managing kidney issues and thrombocytopenia, yet somehow she still managed to work for three more years after all those setbacks, right up until 2010 when she passed at 65. She would have kept going much longer if she could have. Her job was high-responsibility, mostly sitting, but she had to make it in every day. She was lucky, though; people truly respected her at work. Since she was the most senior, she got first pick for her vacation time. After I lost my parent, I felt this urgent need to just jump straight back into working. I actually got a call about a job before I even had a chance to handle my dad's final arrangements. I was rushing through everything just to get there, though I guess they probably didn't even expect me so soon. They told me on Wednesday that they needed someone by Monday. It was the middle of the month. I pleaded with them, asking if I could just have one more week of freedom. Looking back, I realized I needed to slow down. It was mid-September and the heat was intense; I had been through such a massive shock, and I think that’s why I felt so physically weak. It feels better now that the weather has cooled off. But I suppose a person fights as long as they can—you don't just give up. It's just that those higher-paying roles... they're so hard to land. And honestly, I feel like every worker should have at least every other weekend off. It doesn't seem right to me for someone to be working 16-hour days. I mean, I've worked 9 or 10-hour shifts a few times right before a vacation, but I always had my weekends free.

My mom worked right up until she hit sixty-five, even though walking was getting pretty difficult for her. I honestly thought... well, I figured it would be easier for her once she could just relax at home. But it wasn't like that at all. She couldn't settle into being at home because she’d spent her entire life working. My situation was different, though. I had such a hard time finding work—unless someone gave me a referral—and even then, it was usually just temporary gigs. Since I was living with my parents, it didn't feel like such a huge deal at the time. But of course, I was frustrated. Seeing my mom, who was already older and getting weaker, heading out to work every morning while I kept getting rejected from jobs... it sucked. And I know I'm not the only one who has dealt with that. Now, things are much harder since I lost my parents. They provided this sense of security that's just gone now. It's truly sad. I actually looked into caregiver benefits because my dad was bedridden for six years, but I ended up deciding against it. First off, you can't really claim that status for your own parents, and besides, I kept thinking if his condition got any worse, I'd have to put him in an assisted living facility for a while. I mean, I'm not a nurse, and the home health aides we had didn't seem particularly skilled to me... they mostly just acted important for no reason whenever they showed up for their visits.

Either just dive into the work however you can manage, or honestly, just look for opportunities abroad. I’m just... I'm so incredibly exhausted. Losing my parents has left me completely drained. It’s been so hard processing the way they passed—it feels like they were both victims of really negligent medical care. I find myself spiraling over it at night, which means I barely sleep. I know I have to push through all of this, and I still need to go in for more medical checkups, though I really, really don't want to. I suppose I'm doing these tests for my own sake, just so I can stay healthy enough to keep working. And ever since I lost my family, the heat has been almost unbearable for me. Finding work was always a struggle before, too. But, I guess there's always some kind of way forward in life. Personally, I would love to move overseas for work. The best times in my life were when I lived abroad, even if I never actually held a job there. People tend to be kind where you go, even if you always feel like an outsider. I dealt with so many rejections looking for work here in the States, even for jobs I was perfectly qualified for. But, you have to keep hoping. Everything is harder now because of the pandemic, but I still think if someone truly wants a job, they can find one. Like Bunjac wrote, it was such a good point. He isn't having a bad time living in Ireland. Even if you're always seen as a stranger wherever you land.

The weaker Voltaren gel actually worked wonders for me—I used it on his back before getting him settled into the stroller, since he’s been having such a hard time sitting upright lately. He’s just so stiff. I guess if anyone else out there needs some advice regarding a bedbound patient, I’d be more than happy to help.

Dad really liked taking effervescent magnesium and potassium supplements, and his potassium levels always stayed within the normal range. So, I didn't bother giving him Calinor at home. He also enjoyed drinking mineral water and rosehip tea from Spar. Of course, that was back when he could still swallow easily. Eating became much harder after that. Usually, he’d have polenta with ground meat, eggs, or maybe some scrambled eggs—I’d finely chop up boiled chicken soup for him. He also ate cheese, pudding, and yogurt; I made sure it was always thick yogurt since swallowing was getting tougher. Sometimes he'd have a zucchini casserole from the oven. On days when I was just completely exhausted, I’d order takeout, though I always tried to make sure it was fresh. Occasionally, I’d make spinach in milk, and he really loved nectarines. The local farmer's market was too far away, so that wasn't really an option. Otherwise, I would give him fish, although I suspect fish is much fresher by the coast. He also enjoyed store-bought treats or muffins I’d bake from a box.

There is also that Cicradina hyaluronic cream, but it didn't really do much for my dad's surface skin damage, I guess. He actually found the Bepanthen lanolin cream from the pharmacy much more effective. Or even that Hippov lanolin cream in the tube with the green cap you find at Muller or the local Drugstore—that stuff was great for minor skin irritations and small wounds. You have to be careful with those dressings, though. They just didn't work for him; his skin couldn't breathe under them. The Granuflex extra thin kind wrinkled up immediately, and honestly, Granuflex hasn't been great for him lately... maybe because his skin has just become so much thinner as he's aged. You really have to watch when you peel off Granuflex so it doesn't tear the skin. In my opinion, Mepilex border light is a lot better since it's thinner. For a little while, it worked well for him and actually helped heal small wounds by encouraging skin regrowth. But eventually, it started peeling off, so I stopped using it. Plus, it was just awkward because of how he had to sit in his chair. It was never hard for me to take care of Dad, really. Changing him was just part of the routine, especially since he was bedridden for six years. I couldn't exactly rely on anyone else to come over and help if I needed something, so I just managed on my own. It was much easier with my mom; she didn't need any dressings at all, and she was much younger, able to turn herself around easily. I didn't even need a hospital bed for her. It was easier because Dad helped me out so much. Mom never spent a single day in a nursing home.

Well, a neurologist reads the results, right? I assume everyone knows how to interpret those. It's just basic stuff. It’s kind of like an EKG, which a cardiologist would read. But, I don't know, this seems a bit more complicated to me than that.

In the hospitals I've been to, I usually only saw old ultrasound machines, but whenever I went to private clinics—either by myself or with family—they always had the latest models. Even at the Community Health Center when I went with my mom, the Doppler machine felt kind of broken. She spent forever just trying to get it adjusted. I mean, the doctor is actually really wonderful, and the equipment is just what it is, but I honestly can't get that nurse out of my head. It felt like she was almost enjoying my discomfort, which is... well. Maybe it's better that I didn't go there. Though, looking back, I know how silly that sounds. It probably sounds incredibly foolish.

Everywhere you look, the prices for a private EEG are around $100. I guess the equipment at private facilities is usually a bit better. As for what they have at the Community Health Center, I haven't actually been there in a while, so I can't say for sure.

It’s not just that, though... that doctor was just so incredibly nervous. I honestly don't know how they even manage to conduct any kind of testing with people in that state. And I've read where others have said they don't even bother doing them at all. People have been suffering through days of intense headaches because of it. So, I guess Jankomir is definitely the better choice—it feels more modern, and they seem to have much better trauma programs there. But this place... it's enough to make your head spin. You can't say anything to them without them getting defensive or offended. It seems like I'm not the only one who's had these experiences, either. Given that I was already going through such a massive shock myself, the way they treated me just made everything feel so much worse. They aren't really there to help you; they're just there to pass judgment. I wouldn't recommend them at all. The doctor is quite young, so maybe that's why I spoke up—I thought maybe she just didn't know better. But then the nurse from the home health service told me she once ran into trouble herself just for saying something regarding a patient, even though it was just standard general practice in her case. The nurse was truly kind and approachable, though. She actually told me not to worry, because I was more than just shocked by how the doctor acted. Honestly, maybe that doctor needs some help herself.

I just sent you a private message with my response.

If anyone is looking for some solid recommendations, there are these really sensible doctors who run a program specifically for trauma survivors. For me, it’s about dealing with the recent loss of my dad. They actually seem to know how to approach someone who is grieving. I’m actually heading there privately next week. If anyone wants more details, feel free to shoot me an inbox message.

In case anyone is wondering, there's currently a 13-day wait for an EEG through State Farm. I decided to book through them since it’s the most convenient location for me, $100 including getting the actual results interpreted. I feel kind of bad about skipping the Community Health Center because I could have used a referral to avoid paying out of pocket, but honestly, I just can't bring myself to deal with that nurse there, even though the doctor is actually wonderful.

The Bauerfeind Sen standard plus Air Large adult diapers are actually really high quality. Starting back in March of last year, I’d just email my doctor every three months to request an electronic prescription. I didn't have to go anywhere in person; they’d open the email immediately and send the order straight to General Electric, so the diapers and pads would usually arrive at our home by the very next day. It used to be such a hassle having to physically visit the doctor just to get a script, but this electronic system makes things so much easier. If you're caring for someone who can't move, just remember—no one is going to change them as often as you will. I spent so many nights changing my parents. There were times I had to strip the bedsheets for Dad in the middle of the night. I was doing it all on my own, and honestly, it just exhausts you. It wears you down. The stress is massive, but I guess when you know a bedridden patient is relying entirely on you, there isn't really any other choice.

Definitely pick up some saline nasal spray for an immobile patient, just so their nose doesn't dry out—and I mean plain saline, not those sea water sprays. You can find it at any local drugstore. Also, get some lubricating eye drops like Proculin tears or something similar; my dad's eyes were getting so incredibly dry that I had to apply drops several times a day. It might also help to grab those large baby pads; using them with saline solution worked well for me to quickly clean or rinse small wounds before applying antibiotic ointment. Make sure your doctor sends over some Myrobact antibiotic ointment; it’s always useful to have on hand. You can use sterile gauze to clean wounds, but I sometimes used the baby pads and it wasn't an issue. You should also get some child-sized nail scissors from Muller, and those smaller pads from Muller were great supplements for me to set aside since Dad has quite a bit of urinary incontinence. It’s enough to run a CBC, CRP, and a simple urinalysis—basically urine sediment. We used LabPlus Laboratory, a private lab from the Suburban area, where a technician comes right to the house to draw blood and picks up the urine sample on the way, so you can see if there's a urinary infection present. Just report the results to the primary care physician so they can prescribe antibiotics. I've mostly been handling all of that via email lately. If he developed a fever, we had to react immediately; usually, I’d call emergency services if it was the weekend. If it wasn't the weekend, I’d call a private medical service just so they could take us to Holy Spirit, because I had much more trust in their ER. You’ll pay $67 and wait about two hours for them to arrive. But then again, you have to wait for the ambulance too. The paramedics just decide whether to take him to the hospital or not, and they usually end up at Vinogradska, where they actually held a grudge against me because I wrote a formal complaint regarding my mother’s negligent treatment. They obviously held that against me since I was asking for an official hospital accountability report. So, yeah, regarding Dad and his health... maybe it would have been better if I hadn't written that letter about Mom. As for myself, I'm not afraid. Even though I ended up in an outpatient clinic for a sort of urgent procedure back in 2009—but that was before my parents got sick—nobody ever sent me back to Vinogradska based on where I live, nor did I even want to go there because I didn't trust that department. For regular checkups, it isn't an issue; my doctor scheduled Dad's appointments through the central referral system with a urologist at Holy Spirit. The doctors and nurses there were always so kind and professional, but unfortunately, for emergency hospitalizations, we had to go to Vinogradska Hospital. Once, back in 2014, Dad was kept for treatment at the Infectious disease hospital, but after that, they always sent him back to Vinogradska.

If there is anything else I can do to help with advice or medical knowledge, I’d be happy to. There is one specific ward where both my mom was back in 1999
, and Dad was this summer, which is the pulmonary ward at Vinogradska, and it is truly excellent. The nurses try so hard; they change the patients, there's a strict feeding schedule, and they even placed a feeding tube for Dad when he was on oxygen. They really monitor everything, including bowel movements; it’s honestly a top-tier ward. And the doctors are good—one was a bit unfriendly because she was busy working on the computer so I couldn't ask her anything, but other than that, everything was wonderful. Visiting was allowed this summer, and the information was provided once by a specialist resident, though she didn't seem particularly knowledgeable.

If you have a patient who can't move, you really need to massage their back to help get the circulation going. I used to use that Hypov lanonil cream from Muller—it comes in a tube and absorbs really easily, I guess. For his legs, soak them in a basin first, then apply the cream; for me, that blue one from Muller worked best. When he’s sitting up, make sure to put socks on him. During the winter, try to keep him covered up and maybe turn the heat up a little higher if possible. I actually picked up a space heater just in case the main heating ever goes out. It was just a basic coil heater from Elipsa. It really came in handy during the spring and fall. As for clothes, I think cotton is definitely the way to go—simple t-shirts and sweatpants. I mostly picked everything up at Kika. Even those long-sleeved cotton shirts for the transitional weather were from Kika. I did grab some thicker shirts and a sweater from Pepca and Kika though.
I bought those sheets with the character print from Our home. They're high quality and seem to last for years. We actually used my mom's old wheelchair, though Dad found it pretty uncomfortable to sit in. In the spring, summer, and fall, we would head outside with the physical therapist. She’d usually bring along some juice or a cookie for Dad to have while we sat on the bench. He wasn't much of a drinker, though, at least while he was still able to swallow. I suppose it's good to stay on friendly terms with the general practitioner so they can call in an antibiotic if needed. Someone who can't move gets sick so easily. For blood work, we used to call LabPlus Laboratory over in the Suburban area. They were incredibly fast and accurate; the results usually hit our email within a few hours. They've always been very precise and professional. Regarding hospitals, my only positive experience was with Holy Spirit Hospital. We went there for regular urologist checkups, and even recently when Dad had lung issues. They were helpful—they did a chest X-ray, diagnosed early-stage pneumonia, and they even gave him some paracetamol via IV right there in the hallway along with some saline. Then they called an ambulance to transfer him to Vinogradski to be closer to where we live. That’s where things got complicated, because they only kept him there for observation on oxygen, giving him IV antibiotics for two days. The oral antibiotic prescribed by Flexid was just too weak for him; Dad's fever kept climbing. I ended up calling emergency services, and they were very kind.
They told us his life was in danger and that he'd have to stay in the hospital. There was this moment where it felt like they were taking him off the oxygen he desperately needed... I don't know, almost like they wanted him to pass away at home. Since his temperature kept rising, I ended up calling emergency services twice in one night. In the end, they did keep him for six days in the pulmonary ward at Vinogradski. That department is truly excellent; the nurses work so hard. They change patients regularly, keep an eye on whether they've had a bowel movement, and stay on top of changing urinary catheters. While in that ward, Dad was on oxygen and had a nasogastric tube inserted for the first time. But the nurses there actually know how to handle a feeding tube; they follow a strict schedule, and visits were allowed for 15 minutes as long as you wore all the protective gear. Honestly, that was the only ward where the tube didn't seem to bother him.

And please, don't let yourselves suffer like this—your parents wouldn't want that for you. Life just has to keep moving forward. I keep thinking back to what my grandma used to tell me whenever she was trying to cheer me up, since I was always such a nervous kid: "I know, I will, I can." I guess the sky's the limit, especially if you're smart enough to actually think for yourself.