Support resources for families dealing with cancer and other serious illnesses

Hello to all our new and returning fighters 🙂

Angela Wright, Nancy Hernandez43, Melissa Kim45... :*

Carol Ramirez said:Hey there, old friends and new recruits 🙂

Angela Wright, Nancy Hernandez43, Melissa Kim45... :*

Soooooo, how's it going with you? 🙂

Melissa Kim45, I am truly sorry to see things taking such a turn for the worse. I know exactly what you’re going through right now😢. I have full confidence that you’ll pull through this! I'm standing right here with you🙂

Carol Ramirez said:Greetings to both the veteran fighters and the newcomers alike 🙂

Angela Wright, Nancy Hernandez43, Melissa Kim45... :*

Haji!

Is there any news to report? Hang in there...😉

Hi everyone 🙂
I won't take up too much space here, especially since this group is focused on supporting those who are still fighting their battles, but I felt I really needed to reach out and say hello. I've been away for quite a while because I needed to step back and focus on my own well-being for a bit. To give you a quick life update: I’m getting married in a month, I just enrolled in a postgraduate program, and life is moving forward beautifully 🙂

I know this is how it has to be; I truly believe those we've lost would want nothing more than to see me happy. I try my best to let a positive outlook and cherished memories serve as my shield against this illness. While I couldn't stop the inevitable from happening, I can certainly do my part to ensure I don't let the weight of it break my spirit.

Angela Wright 🙏

Sending love to you all :*

Thanks, ladies. 🙂

Mom barely touched her breakfast this morning. She just won't open her mouth, won't do it, period. Maybe it's just her way of making a choice at this point. Or maybe we're all just being stubborn by spending an hour trying to coax her into eating. It’s just plain toast, so that’s really all we can offer.

Tomorrow—well, tomorrow we'll try to give her a little sponge bath in bed, and I think washing her hair would be a good idea too, though I have a feeling she might not go for it. We'll see. Having that rolling chair has made things so much easier lately.

She just shakes her head whenever I ask if she's in pain, and honestly, I suspect there isn't much left for her to actually feel.

Carol Ramirez said:Hey everyone, 🙂
I don't want to take up too much space here in a place meant for supporting those who still have hope as long as they're breathing, but I just had to say hi. I've been taking a long break because I needed to focus on myself for a bit. Long story short: I'm getting married in a month, I've enrolled in a post-grad program, and life just keeps moving. 🙂

I know that's how it has to be, because the ones we've lost would want me to be happy. I'm trying to make sure that staying positive and holding onto the good memories remains my way of fighting against this illness. I couldn't stop the inevitable, but I can at least try to make sure I don't get sick myself.

Angela Wright 🙏

Sending love to you all :*

👍 🙂
I'm certain they are incredibly proud of you.
Best of luck with everything. You truly deserve it. 🙂

Carol Ramirez said:Hey ladies, 🙂
I won't take up too much space here—this is supposed to be a place to support those who still have hope as long as they're breathing—but I just had to drop in and say hi. I’ve been taking a bit of a breather lately; I really needed to step back and focus on myself for a while.

Hi, Lecka! 🙂 Glad to see you're doing alright. I figure things can't stay rough all the time, right?

Melissa Kim45 said:Mom barely ate anything this morning. She just won't open her mouth—won't do it, period. Maybe it's her choice. Or maybe we're the ones in the wrong for spending the last hour trying to force her to eat. She's clean and hydrated, so we'll just give her what she can take.

We went through the exact same thing. Our mom always had an appetite like a horse—we actually had to watch her because of her diabetes—and then suddenly, she just stopped eating altogether.
She would just clench her teeth shut and wouldn't budge. No matter how hard we tried or how much we pleaded, nothing worked. Eventually, she had to get a feeding tube...

Carol Ramirez said:Hello, ladies 🙂
I won't take up too much space here, in this corner where we all try to support those who still have hope as long as they draw breath, but I felt compelled to say hello... I've taken a bit of an extended hiatus, as I really needed to focus on myself for a while. To summarize: I'm getting married in a month, I've enrolled in a postgraduate program, and life simply carries on 🙂

I know this is how it has to be, because those we've lost would surely want me to find happiness. I am doing my best to ensure that maintaining a positive outlook and holding onto beautiful memories remains my primary defense against this illness. I couldn't prevent the inevitable, but at least I can try to prevent myself from breaking under the weight of it all...

Angela Wright 🙏

Love to everyone :*

Don't be so modest—this is wonderful news, truly so joyful that it was only right to share it with us! I sincerely hope everything unfolds exactly as you've envisioned... After all, we both know that a positive mindset is what keeps us moving forward and fuels the desire for a better tomorrow!

Hang in there!

Melissa Kim45 said:Thank you, ladies. 🙂

Mom barely touched her food this morning. She simply refuses to open her mouth... she just won't. Perhaps it is her own decision at this stage. Or perhaps we are all mistaken in thinking we can still persuade her to eat after spending an hour trying... It’s just plain toast, which is about all she could manage.

Tomorrow (if tomorrow even comes) we will attempt to sponge her down in bed; washing her hair would be ideal, though I suspect that may be out of the question. We shall try. Having that rolling chair has certainly made things easier today...

She just shakes her head whenever I ask if she's in pain, and truthfully, I suspect there isn't much left for her to feel...

I am so sorry things have become this difficult... it's clear that the inevitable is approaching. It takes so much courage and strength to get through these days... hang in there...

Melissa Kim45, hang in there.. 😘

Melissa Kim45, hang in there. I totally get where you're coming from because I'm going through the exact same thing right now. I moved my dad into an assisted living facility, but he’s started acting out so much lately. Honestly, I don't think they'll be able to put up with him for much longer.
The real issue is that the pain medication he's on just completely wipes him out—he gets high on it and loses all sense of reality. Since he's still mobile, he wanders all over the place, breaking into other people's rooms, and the nurses just can't seem to keep him under control. He even started writing stuff in a notebook, saying they should call me to come pick him up or he'll kill himself. So then they call me, and I'm just at my absolute breaking point. I thought putting him in a facility would make life easier for both of us, but it's had the exact opposite effect. I'm barely sleeping because the nurses call me at 5:00 AM every single morning because he did something crazy again. On top of that, I'm spending nearly five hours a day sitting there with him. Sometimes I lose my cool and end up screaming at him, and then I just feel terrible about it. I really don't know how to help him. I hate the idea of sending him to a state-run institution like a high-security nursing home, but if the current facility can't handle him, I don't have any other choice...

It’s brutal when someone gets sick. You aren't just dealing with the physical stuff; there's all this fear and misery that just hangs over everything. And honestly? The whole family takes the hit too. It’s one of those things where if you haven't lived through it, you just can't wrap your head around how heavy it feels. We’ve been in the trenches for three and a half years now, fighting my husband's lung cancer. But man, the mental toll is the absolute worst part—all the side effects from being on meds for so long, not to mention the heavy stuff they have to give him.
When I hit a wall and felt like I couldn't take another step, I turned to my faith. I was just desperately praying to God to help me find a way through. And He did. Now, I can handle the chaos a lot better. I’ve got more patience and a bit more clarity than I used to.
I really do get what you're going through. My heart goes out to you and your dad. I'm praying God gives you the strength and the grit to keep moving forward.

dustyranger11 said:Melissa Kim45, hang in there. I know exactly how you feel because I'm going through something similar right now. I moved my dad into an assisted living facility, but he’s started acting out. Honestly, I don't think they're going to tolerate him much longer.
The real issue is that the pain medication he's getting just completely takes over; he loses all sense of what he's doing. Since he's still mobile, he wanders all over the place, breaking into other people's rooms, and the staff just can't seem to get a handle on him. He actually writes in a notebook that they should call me to come pick him up or he'll kill himself. They call me, and I'm just at my absolute breaking point. I put him in a facility thinking it would make life easier for both of us, but it's had the exact opposite effect. I'm not sleeping at night because the nurses call me at 5:00 AM every single morning because he's done something stupid again. On top of that, I'm spending nearly five hours a day there with him. Sometimes I lose my cool and start yelling at him, and then I just feel terrible about it. I honestly don't know how to help him. I really don't want to move him to a high-security psychiatric hospital like the Mayo Clinic, but if the facility can't manage him, I won't have any other choice...

I'm not sure which facility he's in, but they are being paid specifically to deal with this kind of behavior—it's perfectly "normal" and common when dealing with the elderly and the sick. Look, if they can't manage his outbursts and get him a medical evaluation so a doctor can prescribe a proper sedative, to put it bluntly, provide the service they're charging a premium for, then it might truly be better to move him to a place like the Mayo Clinic where he'll have constant medical supervision and immediate access to medication. You have to consider his dignity. For God's sake, if he were healthy and lucid, he'd be mortified by how he's acting. My own mother was constantly terrified of what it would be like once she wasn't herself anymore; she was deathly afraid of losing her mind.
Listen, stay strong and don't let them bully you with those 5:00 AM phone calls. That's exactly why you placed him in a facility and paid for someone else to handle these episodes, isn't it?

Angela Wright said:I don't know which facility he's in, but they get paid specifically to deal with this kind of behavior—it's basically par for the course when you're dealing with the elderly or the sick. I mean, if they can't manage him and get a doctor to prescribe some sedatives, basically provide the service they’re charging a fortune for, then honestly, it might be better to put him in a Mayo Clinic type setting where there are doctors constantly on hand to handle his meds. You have to think about his dignity. For God's sake, if he were healthy and sane, he wouldn't even act like this. My mom was always terrified of what would happen once she wasn't herself anymore. She didn't want to face losing her mind like that.
Look, hang in there and don't let them push you around at five in the morning. Isn't that exactly why you put him in a care facility and paid someone else to deal with these outbursts in the first place?

Oh, Angela Wright, everything sounds so perfect in those facility brochures and on their websites, but the reality on the ground is a totally different story, and I'm pretty sure you know that too. They're "professionals," they're "dedicated," they're "fully equipped," blah, blah, blah...

The massive fees you pay go straight to the facility management who couldn't care less about the patients anyway. As for the staff? Aside from being spread way too thin, they’re probably underpaid and completely unmotivated. Shout out to the rare exceptions, I guess.

And as if the illness itself isn't enough—as if the whole agony of watching a loved one slip away isn't hard enough—now you also have to fight with the facility staff after all the battles with doctors and hospitals.

To give you a concrete example, at 'our' facility, we actually have a staff member screaming at a patient with Parkinson's just because he's being stubborn and won't listen. Can you believe that? Someone who is completely demented is being "stubborn" and "not listening"!!!! Seriously, I know how to treat people like that better than someone whose actual job is to care for the sick...

It's just pathetic that we don't even have an alternative in situations like this.

brightgardener8 said:God, Angela Wright, everything looks so perfect in those nursing home brochures and on their websites, but the reality inside the facility is a completely different story—and I bet you know that yourself. They claim they’re experts, they’re dedicated, they’re fully equipped, blah, blah, blah...

The massive fees people pay go straight into the pockets of the administration, who couldn't care less about the patients. As for the staff? They’re understaffed and likely underpaid, which means they have zero motivation to actually do their jobs. Shout out to the rare exceptions, I guess.

As if being sick isn't enough, or the sheer agony of losing a loved one, now you also have to fight with the nursing home staff after dealing with doctors and hospitals.

Specifically, at 'our' facility, we have a case where a staff member is screaming at a patient with Parkinson's just because the patient is being stubborn and won't comply. Just imagine: someone suffering from full-blown dementia is being accused of being "stubborn" and "disobedient"!!!! I personally know how to handle people better than someone whose entire job is supposed to be caring for the sick...

It’s pathetic that in situations like this, we don't have any real alternatives.

We have an elderly aunt in a state-run facility, and they "handled" her pretty poorly. I've heard endless stories about how this woman, who was semi-mobile at the time and hyperactive, had her personal belongings locked away and refused to give them back. Then, she ended up collapsing and breaking her hip, and they left her sitting there with a broken hip for 24 hours before anyone realized she had bruises. Because they delayed treatment letting her body "cool down" before setting the bone, she needed surgery that they couldn't perform due to her heart condition. So, now they have a completely immobile person under their care. Basically, ever since I made a scene and threatened to call the local news, the service has been amazing. They're all over her now.
Look, it's not the same everywhere, but my point is always the same: sometimes you have to be bold, pushy, and look down your nose at them, because that's the only way to get anything done.

Whenever I’m spiraling—just totally consumed by this raw anger and bitterness, wondering why everything has to be such a mess for us specifically, losing my damn mind—I just stop and ask myself one thing: how would I want people to treat me if I were actually sick? That usually snaps me out of it. Then I just break down, go give my husband and kids a huge hug, and suddenly, things don't feel quite so impossible.

"He writes in his notebook that if I don't come pick him up, he's going to end it all. Then they call me to come, even when I'm completely exhausted. I moved him into assisted living thinking it would make things easier for both of us, but it’s had the exact opposite effect. I can't sleep at night because the nurses are calling me at 5:00 AM every single morning because he’s done something ridiculous. I’m spending nearly five hours there with him every day. Sometimes I lose my patience and snap at him, and then I just feel terrible. I honestly don't know how to help him. I really don't want to move him to a specialized memory care facility like Belmont, but if the current place can't handle his needs, I don't have many other options..."

My mother wasn't in an assisted living facility; she was in a long-term care hospital over in suburban Connecticut, but her behavior was remarkably similar. The only difference was that she wasn't mobile, so she couldn't wander around. She would constantly call both my brother and me, demanding we come fetch her so she could go home. She even went as far as calling 911 to request an ambulance to take her back to our house.
If you eventually reach a point where you have to move him to a different facility, you might be better off looking at those specialized long-term hospitals, as they tend to be a step up from standard nursing homes. Both types of facilities are essentially sanatoriums, but sometimes you just have to work with what's available. I didn't have a choice in my situation; I lived alone with my mother, and I simply couldn't manage her being immobile, incontinent, and dealing with a colostomy bag that she kept pulling at. We fought like cats and dogs because of it, but I have some peace now, knowing that I at least allowed her to pass away with dignity, clean and free of pain.

In a brutal fight like this one, the most important thing is just making sure the person suffering keeps their dignity intact. They're the ones going through hell.

Lisa White54 said:In such an exhausting battle, preserving the patient's dignity is everything. They are the ones carrying the heaviest burden.

She’s absolutely right. I find myself feeling incredibly grateful to my mother for how she handled things during our two-year struggle. She shielded me from the full weight of her suffering. Even in those final days, if I had dared to ask if she was in pain, she would have insisted she was fine—even though we both knew she would have been crying out in agony within two minutes. Looking back, I realize I used to unfairly blame her for being stoic, but the truth was simpler: she just didn't have the strength left to express it. She wasn't being difficult; she just couldn't bear to voice it. To this day, the memory of it still catches in my throat.

Amanda Miller69 said:For sure she was. Honestly, I’m just so grateful my mom spared me all that agony during those two years we fought so hard. Even in those final days... if I had asked her if she was hurting, she would've said "no," but let's be real—she would've been screaming in pain within two minutes. I didn't get it back then. I used to blame her, thinking she was being difficult, but looking back, she just didn't have the strength left. She wasn't lying when she said she "didn't feel like" doing something; she literally couldn't. Thinking about it now still hits me right in the chest. It's heavy.

I know you were the best daughter anyone could ask for. Your mom knew that, period.