Support resources for families dealing with cancer and other serious illnesses

Lisa White54 said:I’m certain you were the best daughter anyone could ask for. Your mother knew that.

I certainly hope so. I also like to think she's up there happy, reunited with my dad.

Lisa White54 said:Whenever I find myself consumed by fury, or perhaps just a deep sense of misery and bitterness, questioning why life seems determined to target us specifically... when my patience begins to fray at the edges, I stop and ask myself: how would I wish to be treated if I were actually suffering from an illness? Then, I simply weep, go kiss my husband and children, and everything feels a bit more manageable...

I tend to follow a similar pattern... whenever I find myself getting heated with my mother, I make a conscious effort to pause and compose myself before we even begin to speak. Quite frankly, I just cannot find the courage to be malicious, or rather, impolite toward someone who is significantly more vulnerable than I am and perceives the world through a different lens. People seem to forget that a simple embrace means everything, and that family is truly the only entity capable of offering real help...

Nancy Hernandez43 Asks:
It’s honestly a bummer seeing things turn out this badly... especially when it feels like we’re all just staring down that inevitable moment everyone’s been dreading. It takes a hell of a lot of grit and mental toughness to navigate through days like these, but you just have to hang in there and keep pushing. Stay strong.

Donna Hernandez21 Asks:
Hang in there, Melissa Kim45. 😘

😘 😘

I actually started drafting this reply first thing this morning, but my sister popped in unexpectedly and threw me right out of my flow. It’s been a bit more manageable this afternoon—she’s just sitting there watching TV and she managed to eat something earlier—but the morning was such a struggle. Everything seemed to be going relatively smoothly at first, and then suddenly, she just completely refused her medication. She’ll just grit her teeth and fight you with everything she's got, and honestly, it's exhausting. To top it all off, I just paid the housekeeper for the seventh month in a row, and now I'm just sitting here feeling absolutely terrible about it all.😁

dustyranger11 said:Hang in there, Melissa Kim45, because I truly get where you're coming from—I’m going through something remarkably similar right now. I finally moved my dad into an assisted living facility, but he’s started acting out in ways that are just completely irrational, and honestly, I don't think the staff is going to put up with his nonsense for much longer.
The real issue is that the pain medication he’s being given just completely takes over, and he loses all sense of himself. He gets this burst of restless energy where he just wanders all through the facility, drifting from room to room, and the nursing staff honestly seems out of their depth trying to keep him contained. He’s even started writing things down in a notebook—claiming I need to come pick him up immediately or he’ll end his own life—so they call me, and by the time I get there, I am just utterly spent. I thought putting him in assisted living would make things easier for both of us, but it’s had the exact opposite effect. I’m barely sleeping because I’m getting those calls at five in the morning every single day because he’s managed to stir up some new kind of trouble. I’m spending nearly five hours a day there with him, too. Sometimes I lose my cool and find myself yelling at him, and then I just feel terrible about it. I really don't know how to help him. I have no desire to move him into a specialized memory care unit like a high-end rehab center, but if the facility can't handle him, I don't really have any other options left.

It all just becomes too much when you factor in the illness, the grueling treatment cycles, and the sheer weight of the whole situation combined. It’s enough to make anyone lose their grip on reality. But honestly, honey, I can see how much you’re struggling through this, and it really is quite a lot to bear. 🙂
I honestly think it’s about time for a serious sit-down with the administration at this facility. I’m pretty certain you aren't paying significantly less than what I’m shelling out for my home caregiver, and when we're talking about several thousand dollars a month, that isn't exactly pocket change. Now, look, I get along fine with her and I try my absolute best to be fair, but there’s a line—everything has to be done exactly the way I say it's done, period. If I prep a meal and she needs to brush her teeth because I didn't get around to it, then she brushes her teeth; if I decide she shouldn't be getting into bed during the day, then that's that. There, end of story. I’ve honestly felt like I was losing my mind over some of the things she’s done. And sure, I lose it with my mom too; I yell, I say things I shouldn't, I just lose my cool sometimes. We have this whole routine for changing her diaper where the caregiver and I work in tandem—one of us holds her steady while the other swaps everything out, and it's actually a pretty quick process once you get the rhythm down. But no matter how fast we move, Mom manages to find that exact split second when our hands are off to go pee on herself. Honestly, I can't help but feel like she's doing it on purpose.🙄
It’s always the same struggle with that wheelchair, honestly—we have to guide her backward because the moment we try to go forward, she just drops her legs, locks them up, and effectively "brakes" herself. No matter what you tell her, as soon as we start moving, she does it again. Trying to get her settled at the table is a total nightmare because she stretches her legs out as far as they'll go, freezes them up, and then just won't stop. And she's always gripping those armrests like her life depends on it. 🙄
That phase where she was spitting at the nurses and basically interrogating every woman in the hospital room, or wandering the halls in the middle of the night stealing cigarettes from whoever she could find... well, I really hope that's behind us, mostly because she just doesn't have the energy for that kind of chaos anymore.

And then there's us, the ones who have to deal with it all, paying for nursing homes and various types of caregivers just so we can all survive this, and so our loved ones can have some semblance of an orderly, dignified life for one more day. It’s just surreal, really, being called in at five in the morning like that. I know it’s incredibly draining for the nurses working with patients who are exactly like our parents, but—sorry, but that's just the job they signed up for. It’s the same reason I ended up logging into work today even though I’m technically on vacation; things just had to get done. What feels truly degrading and frankly disgusting is how we don't talk about humanity or the actual care for the elderly, the sick, the helpless, and the dying, and instead, we focus entirely on the logistics of the job.
The world is starting to feel increasingly hollow to me.
From what I've gathered, at a place like a high-end assisted living facility, you're looking at paying maybe three or four thousand dollars a month, and that doesn't even include the cost of diapers or medications. It's a complete disaster. 👎

I know how hard this is for you, I truly do, and I know there isn't any easy fix. Just hang in there. 🙂
Stay strong.

brightgardener8 said:All that money being paid goes straight to the management of these facilities, who honestly couldn't care less about the patients, and the staff—aside from being spread incredibly thin—are likely underpaid too, which just leaves them totally unmotivated to actually do their jobs. I mean, there are exceptions, sure, but they are rare.

It’s not even enough that you have the illness itself, or the sheer agony of watching someone you love slip away; now, after all the endless running around with doctors and hospitals, you somehow have to fight the nursing home staff too.

In our specific facility, we actually have a situation where a staff member is screaming at a patient with Parkinson's just because he's being stubborn and won't follow orders. Just imagine that—someone who is completely demented is being "stubborn" and "not listening!!!!" Honestly, I know how to handle people like that better than someone whose entire profession is supposed to be caring for the sick...

It is just pathetic that we don't have any other options in situations like this.

Dear brightgardener8, 🙂

It always cheers me up (well, we aren't exactly "cheerful," but you get my drift) whenever I see you posting.

These stories are just horrific. These patients are incredibly difficult and they really do wear down your nerves, but you just cannot scream at a patient, for heaven's sake. I once actually mentioned my mother to my veterinarian (!) when she was yelling at my dog.😠

I also share that feeling that we just don't have an alternative and that, terribly, there's no way out. Regardless, it's just too much. It's still a blessing for our parents that they have us; we fight for them whether they want us to or not, working ourselves to the bone just to provide even a tiny bit of help or make things slightly more bearable. I can't help but think about the people who have absolutely no one else, people who are stuck relying on these kinds of (I get it, they're overworked, the pay is lousy, but damn it) people who yell at patients and have nobody to speak up for them.

Finally, regarding the nurse who visits Mom—she is truly a wonderful woman—but especially now during the summer, they are just drowning in work; she says they're handling twelve or fourteen people a day. It's just awful.

Nancy Hernandez43 said:I tend to do the exact same thing... whenever I find myself getting worked up at my mom, I just take a beat to think and calm down before we even start talking. Honestly, I just can't find the nerve to be mean or, let's call it what it is, rude to someone who is much more vulnerable than I am, and they experience everything so differently. People always forget that a simple hug goes such a long way, and that family is really the only group out there that truly has your back when things get rough.

Yeah, unfortunately, you're left with just your immediate family. Everyone else seems to just drift away somewhere along the line.

I try to stay calm too and remind myself that every single day brings at least one situation that breaks my heart, not just the ones that test my patience. My brother actually told me something very similar to what you wrote above—something about how Mom and I aren't in the same position and aren't on equal footing. It really stung.😢

I thought I had somehow moved past it—or at least I believed I had—that daily confrontation with death or the fear of it, because this heavy grief and misery feels so much worse. But I know that one day, and probably sooner than I'd like, I’m going to be incredibly heartbroken that there aren't any more dirty diapers to change or stinky carpets to clean up.

Amanda Miller69 said:I really hope so. I also find myself hoping that she’s up there somewhere happy now, finally back by my dad's side.

I'm certain that's how it is. 🙂

It just occurred to me when I was looking at the diaper situation. My mom was allocated 90 bed pads and 180 diapers for a three-month period. Honestly, I have enough bed pads to feed a herd of cattle because, even though we use them in several different spots and not just the bed, we aren't swapping them out every single day. But two diapers a day!?
Meanwhile, I’m going through four or five myself because I refuse to deal with anything being damp, smelly, or soaked.

I am genuinely curious which idiot decided that patients like this are only entitled to two diapers a day. My brother and I are going to buy whatever she needs, regardless of the cost, but I can't help but wonder about all those years of insurance premiums she paid for some kid who probably doesn't care. All that money just so she can receive these kinds of humiliating approvals while she's sick and vulnerable. 👎

And look, my mom has her Social Security, and she has the two of us, so we'll manage to scrape by somehow, but what about the people out there who don't have anyone? People who don't have the extra cash to pick up a pack of diapers every few days?

Melissa Kim45 said:Yes, unfortunately, only the immediate family remains close... everyone else seems to drift away somewhere along the line.

I am trying my best to remain calm and remind myself that every single day brings at least one situation that breaks my heart, rather than just those that test my patience. My brother once said something quite similar to what you wrote above—essentially suggesting that Mom and I aren't on equal footing, that we don't share the same standing... It was quite a blow to my pride.😢

I felt as though I had somehow managed to overcome—or at least, I believed I had—that daily confrontation with mortality or the fear of death, because this pervasive grief and misery feels far more heavy... But I know that one day, likely much sooner than I care to admit, I will find myself desperately mourning the absence of dirty diapers and that foul-smelling carpet that needs cleaning.

Regrettably, there is no other way. The longer one prepares for the end, the less fear there is to face; besides, caring for a critically ill patient is an immense burden, and the mere thought of what is occurring inside their mind makes it even worse.

No one needs to tell me that I am not on equal terms with my mother. If something bothers me, I simply hold it in... A great deal of time passes before I finally reach my breaking point and let everything out. Initially, I felt terrible about how things were unfolding, but now we have all adjusted to our circumstances and are finding a sense of peace in a very short window of time.

My brother caused quite a scene this morning. Since he doesn't live with us, he couldn't understand why nobody was answering any of the phone calls. To be fair, whenever something sudden happens, a certain gloom descends, so his panic was somewhat justified. However, today it was merely a panic and, fortunately, nothing more.

Reflecting on all your previous posts, I know how incredibly strong and grounded you are, and how much heart you pour into this struggle. Of course, it is inhumane that someone who has contributed so much to the healthcare system for so many years cannot even access the basic necessities for life today. But, being there for your mother, your brother will also stand by you in these final days, providing whatever he can regardless of outside help. You are already providing support simply by being present, just as you noted yourself. Hang in there...

Melissa Kim45 said:Hey brightgardener8, 🙂

It always puts a smile on my face when I see you pop up here—well, okay, maybe "smile" isn't the right word since we aren't exactly feeling joyful lately, but you know what I mean.

Look, I’m still here hanging out with you guys every single day, it's just that I've been feeling pretty demotivated lately, so I'd rather just keep my mouth shut. Is that really too much to ask?

I still remember my mom calling me right in the middle of the workday just to tell me she was watching something. That was actually a pretty educational show. I saw it on TV, and honestly, I probably should have tuned in myself. It was driving me crazy watching it, but at least back then, she was actually still TALKING.

My brain was basically playing tricks on me, convinced I was scraping everything off the plate, but honestly? She was still eating the whole thing.

We kept taking her to the bathroom even though she was still in diapers, but she’d constantly end up peeing right next to the toilet the second we pulled the diaper off. It was the exact same thing we dealt with with Melissa Kim45, except back then, she could actually walk.

And just like that, it’s gone. Gone for good.
It’ll be a miracle if they even manage to open their eyes.

We’re somehow managing to scrape by with the diaper situation, but we’re constantly having to shell out extra for those glucose test strips. And of course, there’s a limit on how many they’ll cover, which is just great. They cost an absolute fortune—honestly, you might as well be buying solid gold at this point.
That’s just how things work around here.

Listen, brightgardener8, when you're picking up test strips, stick to the smaller packs—they actually end up being cheaper. I usually grab the 25-count Accu check kits $40, whereas those 50-count ones are priced at over $100. It’s a rare instance where buying less actually saves you money. Usually, it’s the exact opposite.

So, they called me from the nursing home at 5:15 AM saying he was acting out, and by 9:00, he’s already in the ER. He’s got a feeding tube in his throat, and on his very first night there, he managed to rip it right out. Then, those incompetent hacks in the ER didn't do nearly enough to stabilize him, so he had to be rushed back to the facility twice in one night. Today makes three times. Three times in two days! That was all starting at 9:00 AM, and they didn't even get him back to the facility until almost 4:00 in the afternoon—and to make matters worse, they dropped him off at the wrong location! Nobody was even there with him! He was left hungry and thirsty. I am paying $5,000 a month $0.00 for this, and these people are absolutely useless. His ankles are swollen shut; he definitely has fluid retention, but nobody is doing anything about it. They just tell me, "The doctor didn't prescribe anything." Well, if he's heading to the ER every single day, then someone needs to drain that fluid! I ended up crushing his diuretic pill because he couldn't swallow it, and if things don't improve, I might just give him a double dose tomorrow. I’m actually headed out to inspect a different facility now. Honestly, I'm dreading tomorrow morning because I know the nurses will call again, claiming he’s being difficult or that his tube fell out again.

dustyranger11 said:So, they called from the facility at 5:15 saying he was acting out, and then by 9:00 he’s already in the ER. He has a feeding tube in his throat, and during his very first night there, he managed to rip it out... and since the staff at the ER apparently didn't do their jobs properly, he had to be rushed back to the facility twice during the night. Today makes it the third time. In just two days! That initial emergency call was at 9:00 AM, and they didn't finally bring him back to the facility until nearly 4:00 PM—and even then, they dropped him off at the wrong facility entirely. No one was actually with him, leaving him both hungry and thirsty... I am paying $5 $0.00 for this incompetence. His ankles are swollen, he definitely has fluid retention, yet nobody seems to care. They just claim "the doctor hasn't prescribed anything." Well, if he’s heading to the ER every single day, perhaps they should actually drain the fluid... I crushed up his diuretic tablet, and if he doesn't take it, I might have to double the dose tomorrow. I am currently looking into a different facility. I dread the morning, fearing the nurses will call again to report some new mishap or that his tube has slipped out once more...

Is nothing changing? 😢 Is it truly impossible for us to coordinate my father's care ourselves when they are being paid specifically to handle it? As Angela Wright mentioned once before, we need to raise our voices and demonstrate that they are being compensated for work they clearly cannot perform on their own...

I sincerely hope you find a better facility, and please, do not let fear hold you back... stay strong.

Dag Chez, seriously, you need to go in there and shake things up. Be blunt, be rude, whatever it takes. You gotta intimidate them so they actually start showing some respect to your old man. Threaten to call the local news, leak something to the press—just stir the pot at the facility! There’s no other way. I’m telling you, I’ve been there. Being all polite and "civilized" isn't going to get you anywhere in a place like this.
At the end of the day, you're crying too much about it. Look, you paid for a service, and you have every right to demand what you actually paid for.

Melissa Kim45 said:It just hit me regarding the diapers, too. My mom was approved for 90 bed pads and 180 diapers for a three-month period. I have enough bed pads to feed cattle because, even though I use them in several spots—not just the bed—they don't need replacing daily. But two diapers a day!?
And I personally go through four or five because I refuse to deal with anything wet, smelly, or soaked.

I honestly want to know which piece of trash decided that patients like this are only entitled to two diapers a day. My brother and I are going to buy whatever she needs, no matter the cost, but I have to wonder: what kind of kid was she paying insurance premiums for her entire life just to receive such humiliating approvals when she's sick and vulnerable? 👎

Look, my mom has her pension and she has both of us, so we’ll manage somehow. But what about the people out there who have nobody? People who don't have the cash to pick up a pack of diapers every few days?

I actually dealt with that exact issue—running out of diapers and the supply problems you mentioned—by working with a wonderful aunt at the Hospital. We were constantly receiving those thin pads meant for mesh underwear, which didn't work at all for Mom once she reached the quadriplegic stage. Basically, I would take those two packs of pads down to the Hospital and swap them out for a package of actual diapers.
If you're wondering where, it's that Hospital over in Trnski, right there in Nama (which is known as Kerum now).

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.

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. 🙂

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.

Melissa Kim45, and everyone else... honestly, reading about everything you're all going through is heavy. There isn't much sense in trying to be profound here, other than just telling you to hang in there. Just remember that no matter how brutal things get, the time we get to spend with our people is precious—and unfortunately, it's finite. To them, you’re probably the brightest spot in their lives. It's one thing to lose your cool when things get intense, but it's much harder to live with the aftermath. So, stay strong.

On my end, my dad had his surgery. He's recovering beautifully; he finished five CT scans and everything came back clear. 😁

But I have a friend who isn't having nearly as much luck. 😢

Melissa Kim45 said:🙂

I’m having these bursts where I can’t stop talking, followed by periods where I’m so completely drained I can barely move.
My real life feels different now; I don't even recognize myself. Things that used to matter just don't anymore. My only hope is that this doesn't lead to any massive fallout. Even if it does, based on how things are going, it'll be a minor hiccup at best.

Don't try to live in the future. Just get through today and keep moving. There isn't really another option once you hit this stage of life where we all find ourselves together.

For the first time in four years, I’m actually heading to the coast for a vacation tomorrow without a mountain of stress on my shoulders. It honestly feels like I'm walking through outer space. I am so incredibly euphoric. I can't wait to just crash in my grandmother's bed, surrounded by the scent of lavender, mint, and marjoram. There is nowhere on earth you sleep better than there. I know the tears will probably start flowing the second I arrive, but I'm not going to let myself spiral. I simply don't have the time for that anymore.

Take care of yourselves, everyone, and grab every single moment you can to rest and recharge.

To everyone I’ve met on this forum, I wish you nothing but the best. I don't post much—hardly at all, really—mostly because I’m intimidated by how established this group of women is. It’s hard knowing how I’ll be received in a circle where everyone already shares such deep, collective pain.
I’m a grandmother, and much like Angela Wright, I’m heading to the coast this morning. That’s about 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 just a year ago. I don't need to explain to any of you how I feel; I trust you all understand. For now, he is doing "well." In fact, he’s the one driving us from the Midwest down to the central Gulf Coast, trying his hardest to hide his struggles from us—even though they are there.
But we’ve made our decision: we live for today. When we wake up tomorrow, we make the most of that day.
Stay brave. The healthcare system isn't always as bleak as it can seem, and not everyone out there is unkind; things just move at the pace they move. What your loved ones truly need is LOVE and your ATTENTION—things you simply cannot put a price tag on.
A special hello to the fajterica (I’m not sure where she is, but I hope everything is alright with her and her husband)!