Support resources for families dealing with cancer and other serious illnesses

Mom is doing a little better. She managed to eat some breakfast and seems to understand everything. It just feels like they have her sleeping all the time; I guess that pill her nurse gave her after breakfast was meant to make her drowsy. She’s peaceful and isn't bothering anyone, so I honestly don't get why she has to be asleep constantly. She drifted off within about thirty minutes of taking that medication. She still has the drains in, and the doctor told me today that the bleeding from the wound is perfectly normal. I haven't been able to check for any Pressure ulcers because she's in a diaper. The nurse mentioned I don't need to worry about buying Granuflex patches for Pressure ulcers right now since they have them on hand. We're already trying to figure out what happens after she's discharged, because I think they'll let her go pretty soon. We were thinking about putting her in that nice assisted living facility, Ćorluka in Gajnicas, for maybe a month while she gets back on her feet. They have their own physical therapists, doctors, and nurses there. So, they can handle things like IV drips or changing her catheter if needed. I just wouldn't know how to do those things at home, and my nurse only stops by once a day at one in the afternoon.

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Hey mistyjackal842, glad to hear Mom is doing better. I've heard this facility is actually decent, so I think you're making the right call with it for now. Hang in there!

We're heading out tomorrow to check out the facility, and then we'll stop by the hospital to see her. I honestly never intended for her to move into a care home permanently. My thought was just to have her stay at the Ćorluka center for about a month while she gets back on her feet. Once she can sit up on her own, all her wounds have healed, and she’s feeling a bit stronger, we'd bring her right back home. I'm just... I don't know how to break the news to her. She is so incredibly against the idea of nursing homes. Neither Grandpa nor Grandma ever stayed in one, so she’s really resistant to the whole concept. Maybe I should just tell her she's going there temporarily for rehab or something like that. It might be easier that way.

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mistyjackal842, you'd better explain it that way to Mom. I know it’s gonna be rough on her, but make sure she understands she needs to recover there because you guys just can't handle it at home. Ask the nurses at Villa Brezovica to tell her the same thing. Let me know how it goes.

So, I’m at the hospital with Mom today. She's getting her first two units of blood because her anemia is just really bad. I could tell she wasn't doing well yesterday afternoon, but the nurse mentioned she just seemed sleepy.

We also checked out that Ćorluka facility today. The issue is, there aren't any openings right now, even with how expensive it is. A spot might open up in about a month once we pay the deposit, but that's a long wait. Honestly, I haven't heard anyone recommend any other place quite as highly. For me, the most important thing is that the staff is actually good and truly cares for the patients. Maybe a spot will clear up sooner, but I can't count on it. Does anyone know of another good care facility in Washington, D.C.? I'm not entirely sure how long she'll be stuck in the hospital, but I need to have a plan in place. It’s going to be so hard for me to manage everything at home given her current condition. She only has me—I'm an only child.

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Unfortunately, I don't have a lead on a good facility either. I heard there was one near the Staples Center where people actually seemed happy, but I don't have their number to check. Maybe try searching online? Hope you find something—and seriously, I hope your Mom feels better soon. I know what it's like being the only one looking out for them, because I am too.

Thank you so much. Honestly, she’d much rather just be back home. I'm just torn because I don't know if it's better to let the Pressure ulcer heal on its own, or if it might be safer for her to have a catheter at home while that heals up. I remember the nurse who visited us after her first surgery said it's actually better not to use a catheter at home, but then again, she didn't have a Pressure ulcer back then. I guess I'm also wondering if those Granuflex films allow urine to seep through. I did read somewhere that you can actually shower with them since they're waterproof. I'm not entirely sure what the status of the Pressure ulcer is right now; I asked the nurse, but they haven't removed the film yet. I'm honestly a bit terrified about her having a catheter at home—what if it gets blocked right after the nurse leaves? That's why I was thinking maybe she could go to a rehab center for a little while, just until she's strong enough to sit in a wheelchair again. At home, we can get a physical therapist here in five minutes, whereas at a place like a specialized clinic in a suburb near Chicago, she might see someone twice a day. Though, I've heard the rooms there are pretty cramped—some don't even have windows or natural light. During flu season, I imagine that could be really risky. Even so, everyone I talk to says the staff there is wonderful. Since there aren't any openings available immediately anyway, I have to start looking into backup plans. It feels like, in the end, she'll probably come home regardless. I haven't even ordered a hospital bed yet; I have no idea how many days delivery takes. I'll need to move her old bed outside too. She hasn't needed a hospital bed until now, so we haven't gotten one yet.

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mistyjackal842, I can tell you from my own experience caring for someone completely immobile at home. First off, Mom is entitled to full home health nursing care through Medicare, which includes daily visits lasting about 45 minutes since she’s bedbound. In our case, the nurse would often stay much longer and just do whatever else needed to be done. On top of that, my wife visits her every day after work to help with care. If you want, I can give you her contact info so you can call her. We also had a physical therapist come by three times a week who really worked with her. Whenever a diaper leaked, the therapist would even step in to help me change her. Regarding pressure ulcers, she didn't develop any major ones, but the skin over her tailbone would get dangerously thin from lying down so much. We tried using Granuflex, but it kept peeling off; honestly, we found that Hansaplast spray and Dermazin ointment worked best—the wounds would heal in just a few days. One thing that is absolutely critical for home care is a hydraulic hospital bed equipped with an anti-decubitus air mattress and a built-in compressor. You can usually rent these through local medical supply services for about $300-$133/month. Another option is checking with charities or hospice support groups to see if they have anything to loan. Along with the bed, you definitely need a commode chair on wheels. For Mom, that was way more practical than a wheelchair for moving her around the apartment. I could just sit her on it in the bathroom to shower, or wheel her right over the toilet so she could go directly into the commode. It meant everything for her psychological well-being, and frankly, it made my life a lot easier because there was less cleaning to do.

Hey mistyjackal842, I really hope your Mom is feeling better. If you're looking for a facility, there's one called Villa Brezovica—they handle people who are immobile, semi-mobile, and they even have hospice care. It's a big three-story building, basically a private nursing home for that kind of full-time care. From what I hear—and don't quote me on this—it can be pretty pricey, maybe $1833 or more per month. I live right near there, so I know the deal; they've got physical therapy and nurses on staff. Just Google them to see their side of things, or just give them a call and ask exactly what you need. Regarding that pressure ulcer, you've gotta treat it immediately—use some Decubit cream or Dermazin, and honestly, the more air it gets, the better. If there’s anything specific you want to know about that home, let me know and I can ask around since I pass by it every single day—just shoot me a DM. Bye!

Angela Wright and Ježić

You both are honestly wonderful, and thank you so much for getting back to me so quickly. I’m going to look into both of those options you mentioned. I’m writing this from my phone because I barely have any time to get to my laptop, and I'm not even sure if I'll be able to send you a private message since my connection is acting up a bit.

When Mom lost her right lower leg at the beginning of this year and was discharged from the hospital, she was in pretty rough shape—she couldn't even sit up at first. She isn't old, she's only 68, but she's just so frail; she's lost weight, and one of her arms has been a bit stiff for a while now. So, she doesn't really have any strength in her hands. She wasn't even using adult diapers initially, but she had to switch to them constantly. At first, we had a visiting nurse five days a week who handled the surgical wound on her leg and would ask if she needed help changing her diaper. She didn't get bathed by the nurse; we paid someone from the local home care service or maybe someone like Zorica to do that separately. A couple of times she did bathe in a tub, and for those occasions, we paid a young nurse privately to come over. After about a month and a half, our coverage through Medicare was reduced to three times a week, and they sent a different nurse who felt more like a certified caregiver than a medical professional, since I could tell she didn't know all that much. She has never had a Pressure ulcer at home before; she developed one in the hospital after just a few days because the ward she was on just doesn't provide very good care. She’s in a different ward now where the care is better, but I honestly don't know what kind of state the Pressure ulcer is in right now.

I have a question regarding Granuflex. Would Granuflex Boarded be better for her at home? It doesn't need to be cut into smaller pieces, even though it's specifically designed for Pressure ulcers. That’s what they told me today at the pharmacy. Apparently, only Granuflex Thin is meant to be cut up, but that isn't really intended for Pressure ulcers. She currently has blisters on several small areas of her skin.

Mom had a physical therapist five days a week, but it didn't help much because she just wasn't very motivated to do the exercises. In the beginning, he managed to prevent contracture in her left knee, but eventually, it developed anyway.

The therapist never helped her change clothes; if I happened to be dressing her, he would just wait in the hallway until I was finished. Now, things are so much harder because she has lost her other leg as well. I am truly terrified about how I'm going to manage taking care of her all by myself at home. It's good that I have Dad, but he’s mostly just there for minor help. Most days, I’ll be alone with her because no nurse is going to be here all day long.

As far as medication goes, I feel more comfortable being the one to personally administer it to her. It's the actual physical caregiving that scares me more. Since she has kidney issues, I’ve often been the one changing her diaper in the middle of the night. I don't think any facility is going to change her diaper during the night.

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Casey Booth3 said:Dear mistyjackal842, I'm so glad to hear your Mom is doing better. If you're looking for a facility, there's one in Brezovica called Villa Brezovica; they take patients who are immobile, semi-mobile, and they have hospice care too. It’s a large three-story building—a private facility for that kind of full-time care. I think it might be expensive, though, don't quote me on that, but I heard it could be $1833 and so on per month. I live pretty close by, so I know it has physical therapy and nurses. Maybe try looking up their side of things on Google, or just call them to see what you need. For a Pressure ulcer, you really need to apply ointment immediately; there's Decubit cream, Dermazin, and honestly, the more air exposure, the better. If there's anything specific about that home you want to know, I can ask for you since I pass by it every single day—just send me a private message. Bye!

Villa Brezovica

Thanks everyone for the info on this place. I haven't heard of it before, but looking at the photos on their website, it looks really nice. It seems much more spacious than the Ćorluka facility, and the rooms are incomparably larger.

What I'm really wondering about is the actual care. Is it truly good? I mean, is there actually a nurse available all the time? I'd love to be there for most of the day since I'm not working right now, and I really want to help make Mom's recovery easier. I'd also love to handle her meals myself, or at least feed her there as often as possible. I did read though that the facility is largely intended for semi-mobile and mobile patients. She would probably fall into the stationary category for those who can't move, but then again, it isn't quite a hospice situation since she doesn't have cancer. I also care quite a bit about what kind of doctors they have on staff. I'll give them a call tomorrow, and we'll definitely head over there to see the place in person.

Does anyone happen to know if they've had someone truly immobile there before? And were they happy with the level of care, specifically regarding the doctors and the rehab services?

Best,

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Hey there...
So, I'm currently running through all the pre-op tests. Tomorrow I’m heading over to the NIH for an MRI, and I already did a mammogram—I'll pick up those results tomorrow, though who knows what they'll say. But, get this: I had a chest X-ray, and it was another total gut punch. They found a 15 mm metastasis in my right lung. That's all I know for now. It's funny how you can learn so much theory about all this stuff, but the second you actually have to apply it to your own life, everything just breaks. I'm completely blocked, totally frozen up. On top of that, I feel like I have to be the one comforting everyone else, acting brave and convincing them that everything is going to be fine with me. Honestly, I feel like garbage. Hopefully, I can somehow snap out of this dead end eventually.

mistyjackal842, maybe this might help you—when my grandma started getting Pressure ulcers from being bedridden, her home health nurse suggested using St. John's Wort oil dressings, and it actually worked! The wounds healed up so fast and looked great, plus she wasn't in any pain.

Thanks for the advice. I don't really have much control over things right now since they handle everything at the hospital, so I don't even get to see it myself. I guess I'll ask the home health nurse what she recommends. My only real worry is that it's all tucked inside a diaper, so once the catheter comes out, everything is going to be wet... I'm just worried about an infection if things don't clear up by then. When I ask her, she doesn't say it hurts or anything. It's just that she's still pretty dazed and weak, so I'm not sure if she can tell me exactly how she feels.

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Lisa White54 said:Hi there...
I'm currently going through all my pre-op testing. I'm heading to the National Institutes of Health tomorrow for an MRI, and I already finished a mammogram—I'll pick up those results tomorrow, though I have no idea what they'll say. But I did get a chest X-ray, and honestly, it was another massive shock. They found a 15 mm metastasis in my right lung. I've studied all this stuff, I know the theory, but now that I actually have to apply it to my own life, I'm completely paralyzed. I feel totally frozen. On top of everything, I feel like I have to play the role of the rock for everyone else, constantly comforting them and convincing them that I’m going to be just fine. It feels terrible. I just hope I can somehow break through this mental deadlock.

Just look at that scan from Jordanovac and assume their radiologist read it perfectly. It doesn't necessarily mean it's a definitive target. And once you see that MRI, double-check everything twice. Also, stop trying to carry everyone else on your back. If you can't offer them actual help, don't exhaust yourself trying to provide emotional support; let them handle their own stuff. I am truly confident that things will work out for you. I have this way of looking at the pragmatics of life—how things unfold. My mother had to fall ill just so I could meet my husband. In that same vein, maybe your husband getting sick was the catalyst that will give you the strength to navigate your own struggle now.
Hang in there. You'll start feeling better once this initial shock wears off.

For anyone out there who might actually need 😁the contact info for Villa Brezovicabroj at 6273-403—if you’re looking for the lowdown on everything, just reach out to the social worker, Gordana Tamburić. Here’s her cell: 099/6600-452. You can hash out all the details directly with her—stuff like what size room you want, the specific type of care needed, or if you'd rather have company or just be left alone. They've got nurses on duty 24/7, physical therapy, an elevator, TV, a coffee shop, and plenty of chances to hang out with everyone else, though YOU get to decide when you want some privacy. Hopefully, this helps someone out!

Thanks so much for all the information.

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mistyjackal842 said:Thanks so much for all the info.

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Look, we're all just here to help—the whole goal is to get the patient feeling better! Don't even mention it. Cheers!

Yesterday was a total waste of time... just a complete bust. I went in to pick up my mammogram results—they were supposed to be ready since Friday—but they weren't even in the system! I had an MRI scheduled for 6:30 PM, so I actually showed up early, before 6, only for the receptionist to tell me I missed the window for the mammogram results because they stop processing those at 2 PM. Like, seriously? What am I supposed to do with that?! So, I call the MRI department... a nurse comes out, brings me back, and then drops the bomb: they don't have the contrast dye for the scan. They can't do the MRI and they’ll just reschedule me for next month. I almost passed out right there. I basically traveled all this way 75 miles for absolutely nothing. But hey, I guess I can't blame anyone else; I should've called ahead to double-check instead of just assuming everything would go smoothly.
So now, I have no clue when I'll get these last two tests done—the MRI and the ultrasound-guided biopsy. Once those are cleared, I can finally wrap everything up, see the anesthesiologist, and head into surgery.
I don't even need to tell you how I'm feeling... and I definitely won't say that I had no idea how much of a mess the American healthcare system can be, or that I shouldn't be this worked up, but honestly, every single time, it catches me off guard.
Honestly, the absolute worst part is this limbo—not knowing what's actually going on, whether it's something serious or nothing at all. It's like walking on thin ice.
And while I wait to find out... it's obviously going to take a while. I just hope that if it turns out to be the worst-case scenario, it won't be too late for me.

Angela Wright said:Just show that image to the radiologist over at Jordanovac so they can read it themselves. It doesn't necessarily have to be Hepatitis. You'll see once that MRI comes back. Double-check everything. Just tune out all the noise from people around you who are trying to "comfort" you. Honestly, if they can't actually help, let them deal with their own drama. I'm positive things will turn out okay with you. I've got my own theories about how life works pragmatically. My own Mom had to get sick just so I could end up meeting my husband. I kind of feel like your husband getting sick happened so you'd find the strength to handle this mess now.
Hang in there, you're gonna be fine—you're still just riding that initial wave of shock.

Angela, honey...
I honestly think it’s all impossible... I mean, I don't think it's cancer. Or at least, I hope I'm right.
And you're 100% spot on when you say I'm still reeling from the shock. I can't just snap out of it that easily; it's just not how I work.
I believe everything happens for a reason, truly, but I just don't get why I can never seem to escape these problems! 🙂

Love ya...