Posts by Roger Hall15

Dear dustyranger11, please accept my deepest, most sincere condolences.

brightgardener8 said:So, when is it actually going to happen? 😱 Does anyone happen to have that anti-decubitus mattress lying around?

I’ve actually been sitting here lately just mulling over the whole idea of giving my mom a haircut myself... 🙄 When she was still back home, I used to handle all her hair with the clippers myself, but now that she’s moved into the care facility, we haven't even been able to get her a haircut in months.
I’m really not sure about all that coloring business; you honestly think it’s actually necessary? 🤷
You really have to make sure those chemicals get thoroughly rinsed out of your hair, though I know exactly how difficult that whole process becomes when someone isn't able to move around on their own.

It’s a good thing Mom actually has an appetite and wants to eat. 👍 Man, I would give just about anything if only my girl would stop...

Suddenly. 😢
I’m pretty convinced that besides the mobility issues, this mostly comes down to her refusing to eat. That Vindijin pudding was absolute perfection when she actually managed to get a couple of spoonfuls down.
I honestly didn't realize things would move this fast. You want to know what it actually looked like? It was exactly like when a shoe gives you a blister so bad that the stench follows you all the way home, leaving you in tears by the time you finally get to the doctor to have it dealt with—just a little bit of peeled skin, really. I wasn't expecting it at all, despite being careful, and I genuinely thought it was just from the diaper. I figured she’d either chafed herself or maybe while her caregiver was changing her, some kind of sticky residue got stuck to her, and when they tried to wipe it away, they accidentally took a layer of skin with it. It wasn't until the leaking wouldn't stop that I actually started to panic. About an hour ago, I finally got her settled on the bed, tidied everything up, tucked a rolled towel under each arm, kept her elbows up, and propped her legs up using a rolled blanket and a pillow so her heels are slightly elevated off the mattress.😁
She’s finally drifted off to sleep, though I noticed she spit up a little bit earlier, so I’ll probably have to roll her onto her side in a couple of hours. There’s just no way she can manage that on her own. I'll have to adjust her position again early tomorrow morning, and then around seven-thirty, it’s the whole routine: wash her, massage her, rub her down, apply ointments—especially everywhere that looked like it had a strange color—change her diaper, and then head into work to try and get a little bit of a breather.😁
Looks like I'm flying solo again tomorrow without my sister around.
We haven't picked up that mattress yet, so we'll just have to see how it goes. For the time being, things seem to be moving along alright, as well as can be expected. I’m not letting her spend the entire day stuck in bed, though; I won't allow it. In the mornings, we usually just move her over to the armchair or catch a taxi to get her somewhere else.😁 So, it’s just one thing after another with the positioning—sometimes there’s a little extra cushion under my backside, sometimes there isn't, and then we'll have my legs propped up on the stool, or maybe they aren't, depending on how things are feeling. We’re even lifting my elbows with these little pads. Then comes the evening, and it's back to the bedside, and honestly, it's just that whole cycle again; we go through the entire day only to find ourselves right back at the beginning.

It doesn’t necessarily have to be about dyeing it; someone actually asked me if that was even an option. I honestly don't know, I mean, I know you’d need to rinse it out thoroughly afterward, but that’s just not going to be feasible while we're stuck in bed, and since there isn't really any other way to handle it, I’ll just have to figure something else out. It’s really more about my own desire to see her looking the way she always made sure to look. I do have an alternative, though, which would be to just cut it short, because she actually looked quite striking when her hair was still very short and gray right after she finished her chemotherapy treatments. We all absolutely loved that "look," but she never much cared for it herself.
I don't really know. I guess there’s just this part of me that wishes, when my mom eventually passes, she could somehow still be that same mom I’ve always known. Even if it was just on the surface, you know? Just to have her look like herself again. 😢 And honestly, who even knows what else is coming our way? I’m not going to push myself or try to force any kind of outlook, nor am I going to sit around daydreaming about things, because that just drains my energy on stuff that, when you really think about it, doesn't even exist.
🤷

Hey there to all the old friends and newcomers (man, there are so many of you)😢 fighting the good fight!

My mom is completely immobile now; she’s mostly silent, though she does occasionally express an interest in eating something, which is honestly a huge win. Since she first went bedridden, there was a period where she just refused all food, and we were basically praying for every single drop of water we could get into her mouth. Naturally, that took a massive toll on her overall health, and she ended up developing pressure sores. Even with the nurse checking in and us constantly monitoring her and applying ointment to the sensitive spots, man, it’s tough. This one caught us totally off guard—it just opened up out of nowhere. When we’re repositioning her, that side is always turned away from us, so it’s hard to see, tucked away slightly underneath, and we just didn't catch it in time, but that's the reality of it.
A few days ago, I noticed this little blister, leaking a bit, and I honestly thought it was just irritation from the diapers. I tried spraying it with Bivacyn, but after two days, it was still oozing and wasn't healing at all. That’s when it hit me that something was actually wrong. At least now I know what a pressure ulcer actually looks like.🙄

Using kantarionov oil worked almost overnight, though I eventually decided to go with a Granuflex patch. Honestly, a lot of that was just my own panic setting in, because I was legitimately terrified. Moving forward, I’m going to try using kantarion and calendula ointment to prevent any more skin from breaking, and I'll be switching her positions more frequently, but things should improve once she starts getting some actual solid food in her. And I suppose I’ll need to pull myself together too. 🙄

I’ve also got Sudocrem and Dermazin on hand, plus plenty of baby diaper creams since she’s been in diapers full-time. The nurse suggested I pick up some half-liter bottles of saline solution for rinsing. I think I’m pretty much fully equipped now.😁

We’re back on the native propolis again, so I’m attributing the slight improvement in her appetite to that.

Oh, and we finally sorted out the hair washing situation—well, "sorted" might be a stretch, but the nurse and I reached an agreement. Still, I’d love to dye it for her again. 😛 She always cared so much about her hair. I realize it doesn't matter much right now and she probably won't even notice, but it feels important regardless.
I still need to come up with a bit of a strategy for that.😁

Nancy Thomas18 said:I really appreciate all the kind words... but honestly, what can you do? That yellow wave just washes over you eventually. I’m heading in for an abdominal CT scan in two weeks... keep your fingers crossed for my little liver 🙂

Fingers crossed! 👍

Nancy Thomas18 said:well, I'm doing alright as long as I'm still breathing...

We're right here with you. 🙂
Hang in there. 😘

Just a little snapshot from my life right now:

My brother texted me a photo of my nephew on some field trip, and while I was shuffling through my phone to save it, I stumbled upon a picture of Mom from June 14th.
It honestly feels like it was taken years ago.
Back then, Mom and I were sitting at breakfast when a photo of my nephew popped up on my phone too, so I just snapped a quick shot of her and sent it back, saying, "Here’s one for you." 😁
Those were those brutal days when things were clearly taking a turn for the worse, though before she was physically broken by it all, she was basically impossible to deal with. She really pushed us to our absolute limits—literally.
Nowadays, Mom is immobile; she doesn't talk, mostly just sleeps and mumbles under her breath.

The strange thing is, looking at those photos from June 14th where she's sitting there smoking, her face actually looks so much better than it does today.

And honestly, it’s weird to admit, but things feel easier now. I can leave her alone, knowing she isn't going anywhere or doing anything because she simply can't. She sleeps through the night, she isn't waking me up with sudden falls, she isn't keeping me up, calling out, or acting up. She just doesn't drive me crazy anymore. 😢
Except for when I have to feed her. That part is still a struggle. 😁

The strangest part is how messy everything feels in my head. The worst of it—aside from what I'm actually talking about, if you know what I mean—is behind me. Though, who knows what else might happen or what else might take a turn for the worse. I'm having a hard time putting events in any kind of chronological order, and my sense of time is just completely off. I’ve noticed this before, that I can never quite grasp when something happened or how long it actually lasted.

I find it so hard to believe that photo was taken only two months ago; I keep thinking maybe the calendar on my phone is just broken. 😁

brightgardener8 said:Melissa Kim45, you doing okay? How’s your mom?

Things are pretty much always rough on our end.
We're constantly struggling with the care facility and their mediocre service, which they charge an absolute fortune for.
It feels like a constant uphill battle against the wind, and I find myself wondering if Mom is even the main character in this story anymore—if after everything she's been through with her health, she really deserves to be dealing with this too...

It's probably the exact same situation you're in. 🙂

Mom, man, it's a struggle just to get a single spoonful in her. We've had to resort to using a syringe for soups and liquids just to make things go smoother. Though, in these last few days, she's actually willing to take a little something by mouth; there were those couple of days where she barely ate anything at all, and we honestly started to panic.

We've spent a lot of time chewing on this idea. A decent assisted living facility costs a few thousand extra dollars, which is basically what we're paying for eighteen-hour daily care anyway. When you tally up all the expenses, there isn't that massive gap in price. There are patients who simply can't stay home, but my mom still can. Or at least, I think she can. Changing diapers, applying creams, bathing, feeding, changing her shirt five or six times a day, brushing teeth—we handle all of that ourselves.
I don't know, after everything, it’s just exhausting for everyone involved, both for us and for them. It seems to me like the only real deciding factor is whether someone can actually be cared for at home, or if the risk is just too high because of things like feeding tubes, IV lines, catheters, and those potential emergency complications where we’d just be sitting there helpless.
Another thing is that back when Mom could still move her hands and feet, she was impossible, and we were so terrified they’d overmedicate her or restrain her (we went through that whole ordeal twice), so we ended up pulling near-constant day and night shifts ourselves. You can never get that time back.

For now, we're just taking it one day at a time, but I’m constantly hitting myself with a thousand questions. Is it being too rough or overdoing it sometimes when we lift her or use the wheelchair—which we call her "taxi"😁 to get from the armchair to the bed—is it torture? What happens if a wound opens up somewhere? Does she really have to have that one pudding pushed into her crumb by crumb over the course of an hour (and losing my cool ten times in the process)? How much are we forcing this? Who knows what kind of movie is playing in her head; one minute her eyes are closed, and the next they're wide open, and it scares the life out of me.

It’s just heavy, all around. 😢

Amy Hayes28 said:Hey everyone!!

Can someone please explain what a red referral actually is?

🤷
I was just going through my mom's medical paperwork for her appointment in Jordanovac—I always make sure to keep those files organized at home just in case of an emergency, because you never know when things might go sideways—and I noticed everything her primary care doctor wrote down is on these bright red referral forms.

Betty Sanchez82 said:Can someone please tell me where I can actually find some KRS constant regenerative agent??

Maybe try reaching out to them:
http://www.magicus.info/hr/magicus/tekst.php?id=612
You'll find some phone numbers listed right at the bottom.

I don't have any firsthand experience with it myself, honestly; I just stumbled upon this online and saved it somewhere, though I've never actually given it a shot.

Kimberly Green23 said:My stepfather unfortunately lost his battle today. The only small comfort is that he didn't have to suffer through a long struggle. We could spend forever debating whether he could have dug deeper to find more strength, but that's not how it works; he just reached a point where he lost the will to fight and simply let go. He wouldn't let us pull him back from that state of lethargy. I'm so incredibly grateful to Melissa Kim45 and Agna for all the support, and of course to everyone else in this community who helped us out with their advice. I’ll be keeping up with you all, and if there's any way I can offer some helpful insight along the way, I certainly will.

Don't mention it, dear Kimberly Green23. Hang in there. 🙂
I am certain you did everything humanly possible, and I'm sure he fought as hard as he could in his own way—you know exactly what I mean.

Hey 🙂

A truly wonderful soul gifted me some diapers and all sorts of supplies for Mom. Thanks again. 😘
So, I decided to take advantage of the momentum and see what kind of stash I’ve actually built up at home. I’ll admit, I can be a bit messy,😁 but even with that, we’re going through quite a lot lately. I’ve been complaining about how there are always two pads on the bed, one on the armchair where we move her during the day, and then another for the couch where she spends most of her time lounging. If they stay clean, I either tuck them away or just leave them right where they are.

Anyway, I have a full pack (I think it might even be more, but definitely a full pack) of Procter & Gamble that won't be used up before September 1st when she gets her next shipment. She’s supposed to have two a day, but she doesn't drink nearly that much, and if we can manage it, we’d much rather give her some soups—even if they come from a squeeze pouch. It's way less messy and much easier to handle; my nurse recommended it and it has honestly been such a lifesaver. It costs maybe ten bucks or so, but getting fluids or liquid food into her becomes so much, much easier.
If anyone happens to need some Procter & Gamble, please feel free to reach out; I’d be genuinely happy if someone else could make good use of it, and I am giving it away from the heart.

Our doctor drafted everything based on the discharge papers, though we ended up handling the paperwork for the commission ourselves. They approved some things and turned down others. Honestly, I was just relieved because buying diapers is such an insane expense, and then there’s the million other little things you have to stock up on—shampoos, lotions, wipes, gloves... I even make sure to rub lavender oil on my mom ahead of time, and so on, you just keep buying stuff.
The amount of diapers they provide isn't nearly enough, but it's definitely easier to just go out and buy more.
I suspect the substitute doctor wouldn't dare sign off on anything without a neurologist, but the primary doctor can certainly make that happen.
We're also struggling with home care. We currently get visits three times a week, but we really need five, and we've already been denied for that too. A home health nurse visited us during the sixth month to set things up for the seventh and eighth, so they'll most likely be doing rounds again toward the end of August or beginning of September.

Hang in there, stay strong, and keep fighting. We're all standing right here with you. 🙂

Lisa White54 said:All these crises, they just sort of roll in and then they roll out, you know? My husband, our kids, and I—we’re each other's rock. We just get it. People on the outside, they don't really have a clue what we're actually going through, so I've stopped trying to make them understand. There are moments when I feel like just venting to someone, but...
My husband is heading in for a CT scan of his chest and abdomen on August 8th. The last time he had one, which was exactly two years ago, everything looked fine. No metastases, and that button-sized tumor hasn't changed at all..
I'm terrified right now. And my husband is a nervous wreck too. We just need this to be okay..

I'm crossing my fingers for you. All four of them. I have a real feeling everything is going to be just fine. 👍
Don't let the fear get to you. People like us, we're seasoned veterans in this kind of thing, and we know how to handle whatever comes our way.
You're being incredibly brave. 🙂

Come on, don't go scaring her like that.🙄

The incubation period is actually quite long, which gives us plenty of time to take preventive measures, and she’ll get whatever treatment she needs if there's even a tiny hint that an animal might be rabid—though if it's a stray, we can always be cautious, whereas if you know the animal, you can usually be pretty certain one way or the other.

I’m just hoping she managed to make it to the doctor in the meantime.

It’s possible, sure, but you really have to look at rabies as something you handle proactively before it ever becomes an issue. That’s how it was explained to me. You just head straight to the ER, where they’ll clean out the wound first and get you an anti-tetanus shot, and from there they’ll send you over to the local clinic to figure out exactly how many doses 😁 you're going to need.

There’s no reason to panic here, and honestly, we aren't racing against a clock, so just take a breath. Don't let the anxiety get to you because everything is treatable these days. They provide the vaccinations at the clinic, and if there is even the slightest suspicion that an animal might be rabid—which is always a bit of a gray area, but nobody is going to take that risk, so just stay calm
.

Susan Ruiz76 said:I honestly just want to wish everyone I’ve met on this forum nothing but the absolute best—I don't post much, if at all, mostly because I’m a bit intimidated by how close-knit this group of young women is, since you all share such deep, personal struggles together.
I’m a grandmother, and much like Angela Wright, I’m heading out toward the coast this morning, though that’s really the only thing we have in common. I’m traveling with my seven-year-old granddaughter and my husband, who was diagnosed with lung cancer about a year ago. I don't think I even need to explain to any of you what that feels like; I trust you all get it. He’s doing "okay" for now—actually, he’s the one driving us from the Midwest down to the central Gulf Coast, trying his hardest to hide any discomfort he might be feeling, even though we know he is.
But we’ve made a decision: we live for today, for the moment we wake up in the morning. We choose to live that day.
Stay brave, because things in the healthcare system aren't always as bleak as they can seem, and not everyone is out to do harm; the pace of it all is just what it is. What your loved ones truly need is LOVE and your ATTENTION—things you simply can't put a price tag on.
A special hello to the fajterica (I'm not sure where she is, but I hope everything is going okay with her and her husband)!

There’s no distinction here between the young and the old; we are all young at heart. 👍

I hope you all have an unforgettable vacation. 🙂

brightgardener8 said:I’m right here with you guys every single day, it’s just that I’ve been feeling pretty demotivated lately, so I tend to stay quiet more often than not.

It makes me think back to my mom, how she used to call me right in the middle of my workday just to tell me she was watching some really educational program on TV and that I should probably tune in too. It used to drive me crazy, but at least back then, she was still TALKING.

It feels like her brain was drained away along with everything else being taken off her plate, but back then, she was actually EATING.

We had to help her to the bathroom even though she was wearing a diaper, and she’d frequently end up wetting herself right next to the toilet the moment we took the diaper off—it was just like what happened with Melissa Kim45—but at least back then, she was still WALKING.

Now, none of that is left.
A victory is if she even opens her eyes.

We’re managing with the diapers somehow, but we’re constantly having to buy more glucose test strips. And of course, there’s a limit on those, and they cost a fortune, practically like gold.
That's just how things are here in the States...

🙂

We don't really host visitors anymore, but today was one of those rare exceptions where people had to come over because we needed to settle something important, something totally unrelated to anything we discuss here. I pleaded with them not to let their shock or sadness show too much regarding what they were seeing (we're quite close). When I saw a friend give my mom a gentle hug and a kiss on the cheek as he was leaving—something I don't think he ever did in the thirty years we've known each other—I felt like I was going to break down right there in front of everyone. I don't know if she recognized them; she wouldn't say a single word, and she just had this vacant, stunned look for the first fifteen minutes before they left twenty minutes later. She's calm now, and she'll be napping soon.

I'm having these bouts of talking too much these days, and then other times I'm so exhausted I can't function.
In real life, I don't even know who I am anymore. Nothing seems to matter much, I just hope there aren't any major consequences. If there are, based on how things are going, they'll be minor at best.

dustyranger11 said:So they called me from the facility at 5:15 in the morning saying he was acting out, and then around 9:00 he’s already in the ER. He’s got a feeding tube in his throat and he basically soaked through his first night at the facility, but the folks at the emergency room didn't deal with him properly enough, so he had to be rushed back over to the facility twice during the night. Today marks the third time. All within two days! That was at 9:00 AM, and they finally dropped him back off at the facility around half-past three in the afternoon—except they actually dropped him off at the wrong facility entirely. Nobody was even there with him! He’s hungry and thirsty and just left there. I am paying 5 $0.00 for this, and the service is just pathetic. His ankles are swollen, and I know for a fact he’s retaining water, but nobody does anything about it. They just tell me, "The doctor didn't prescribe anything." Well, if he's heading to the ER every single day, maybe they should actually drain the fluid! I crushed up his diuretic tablet because if he won't take it, I might just have to double the dose tomorrow. I’m looking into a different facility now. Honestly, I’m dreading the morning because I know the nurses will call again saying he’s caused trouble or that his tube fell out.

Dustyranger11, you’re going to work yourself into an early grave at this rate.😢
The fact that they called to say he was in the ER is one thing, but sending him to the hospital without any supervision—and not even bothering to let you know—while letting a sick man be treated this poorly is just unacceptable. It’s just as wrong as calling you at 5:00 AM to claim he's being difficult, or failing to notice he's swollen and clearly needs diuretics.
I'm crossing my fingers that you find him a better place soon. 🙂

Angela Wright said:I actually dealt with that whole mess regarding diapers and them constantly running out by working things out with a wonderful aunt of mine back in the Midwest. We were always being sent those specific pads meant for mesh underwear, which just wasn't working for my mom anymore once she reached that quadriplegic stage. Usually, I’d just head down to the Hospital in Springfield, over at the old Nama building—you know, where the Kerum place is now—and I’d swap out two packs of those pads for a pack of actual diapers.
If you're looking for it, that's the Hospital located in Springfield, right by the old Nama site (which is basically the Kerum spot now).

Thanks. 🙂
The insurance wouldn't approve the mesh underwear or the pads for us, though honestly, we don't even really need them anymore—they might have been helpful at one point, but not now. I kept the pads on hand as long as I could just so Mom would feel a bit more comfortable while she was still clearly struggling, and I ended up paying for them out of my own pocket. Using liners is definitely cheaper than buying full diapers, so I'm certainly going to try to make that switch if I can.
I know exactly where that Nama building is.