Support for families dealing with cancer and other serious illnesses (Part II)

Everyone has shared such wonderful advice. I actually have quite a few things left over from my dad. I have two walkers; I could probably give one away. I’m going to hold onto the hospital bed, though—I bought it used myself. I also have some diapers that I was supposed to take to the local clinic. If anyone needs them, I can give away a few boxes, provided someone can come pick them up. Those creams really helped me out, too. I guess... how is everyone else coping with the loss of a parent? For me, it’s just incredibly hard, especially when I look at old photos of Mom and Dad and see what a happy life we all had.

The waiting isn't really the issue; it’s more about that feeling when people just don't seem to want to help the elderly anymore. It’s almost like they write them off before they even walk through the door. I guess some nursing facilities are decent, while others are just... well, awful. If I had known certain things back then, I probably never would have placed my dad there. And honestly, the assisted living facility wasn't much better. I reached a point where I just couldn't manage everything alone anymore, but those caregivers were truly unprofessional. There was hardly any nursing staff available. I feel like care facilities used to be better in the past. In one home, they actually refused to admit him because they were afraid he might show up with a fever—they told us they'd just send him right back home if that happened. I think this particular facility is a bit better, though; it looks more like a hospital.

Hi,
I need some help here. My husband is in the final stages of metastatic carcinoma. Things have taken a massive turn for the worse over the last ten days. He’s completely incapacitated—just bedridden. He’s in diapers now, eating almost nothing, and sleeping terribly.
A palliative care doctor visited us and prescribed some pills for his pain and sleep.
The issue is, I have to work, my daughter has college, and that leaves me alone with him most of the time.
He’s already fallen several times trying to get up. He’s covered in bruises from those falls. Now he won't try to get up without me, but I still have to haul him just to get him sitting. My whole body aches from the strain. Between that and constantly getting up to check on him, I’m barely sleeping.
Putting him in a nursing home isn't an option—I refuse to let him die in some hole where he's just tied down and drugged up.
He stays at home, and if he dies, he dies in his own bed.
My question is: is there an association or any kind of organization that provides palliative nurses or caregivers?
I am more than willing to pay for this. I’m not looking for a handout. I just need to know if something like this actually exists.

I am so incredibly sorry to hear about your husband.

Saint Valentine over in Washington, D.C. offers two hours of help a week—which, honestly, sounds like a drop in the bucket—but I wouldn't be surprised if they're linked up with other organizations that offer a much broader range of services. It definitely wouldn't hurt to give them a call and just ask.

I am truly sorry to hear about what you are going through. I know that Charles offers various home care services, so it might be worth looking through their website. We actually managed to get in touch with a specialist through some acquaintances; I will check if she has any availability or perhaps knows someone who does, and I'll send you a private message.
Generally speaking, regarding your private options, you have professional nurses who specialize in this field (either working alongside their regular jobs or perhaps retired), though they tend to be a bit more expensive. Alternatively, there are women who aren't formally trained nurses or caregivers but still perform the work; they can be quite frequent and often quite experienced, though they most commonly provide 24-hour care on two-week shifts.

mistyjackal842 said:How are you all coping with the loss of a parent? For me, it is incredibly difficult, especially when I look at old photos of Mom and Dad and realize just how happy our lives truly were.

It is equally difficult for me. I find myself feeling quite heavy-hearted whenever I look at photographs—though there is an almost irresistible urge to keep looking at them—or when I see images of family gatherings, or even just a grandparent picking up their grandchild from preschool; it always brings tears to my eyes. A profound emptiness remains. However, what haunts me most of all was the long, inhumane, and deeply degrading suffering they endured right before passing, during those moments when you realize there is no longer any hope or relief left, and it ceases to feel like living... those scenes simply refuse to leave my mind.

Back here again, desperately scouring the internet for any scrap of info that might actually help...
My husband finally made it home eight days after this rushed surgery at the Mayo Clinic—they’d removed a polyp during a colonoscopy the day before, then ended up cutting out a 10 cm section of his large intestine and performing an anastomosis. But things started going south on day ten, and now he's back at the hospital in the ER at the local medical center. It's already turned into sepsis, so they had to remove even more of his colon, and he's getting a stoma. Thank God his other organs haven't been affected yet, but the whole thing is just... heavy. The kicker is that by day six after the initial surgery, he still wasn't able to take anything by mouth. A tiny bit of water, maybe some tea the day before yesterday, but nothing since yesterday. They pulled the tube that drains everything out the day before yesterday, but then they put it right back in... they claim it's to let his irritated stomach "rest," but honestly, I’m terrified that's just a convenient excuse... There’s some content in the stoma, but it looks like the real issue is air trapped in the small intestine. For the last two or three days, I feel like we’re being fed these half-baked, incomplete stories... His doctor isn't even back in until tomorrow (Saturday). My husband is absolutely crushed mentally, and physically, he’s just so weak. Back when we were dealing with Kaiser Permanente, a physical therapist came by every single day, but here? He only saw one the day before yesterday. He swears nobody even helped him sit up or move all day yesterday, even though the nurses are telling me something completely different... 😢 What am I supposed to do? So much went wrong from that very first procedure, and it feels like I can't just sit here and wait for the next disaster to strike 😢
Does anyone here know anything about baroreceptors or how they play into helping with these kinds of postoperative complications?

Thanks for the advice.

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My father has returned home from the hospital for temporary care. According to his discharge papers, he’s scheduled to head back into the hospital on March 29th, and before that, he needs to go to the Mayo Clinic for radiation. They’ve labeled it palliative radiation. I feel completely shattered. Just two weeks ago, everyone thought he was doing fine—just dealing with typical old-age issues—and now we're talking about palliative care. That word... "palliative." It just hangs there. He can't get up, he can't read, and he can barely speak. Up until this point, I kept telling myself there must be some mistake. He seems so steady and patient, through it all.

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Linda Kern38 said:Dad's home from the hospital for home care. Temporarily. The discharge papers say he goes back on March 29th, and before that, radiation at the Mayo Clinic. It says palliative radiation. I'm broken. Two weeks ago they thought he was fine, just old age issues, and now it's palliative radiation. That word—palliative. I can't get up, I can't read. I can't talk. Until now, I thought it was a mistake. He’s being so good and patient.

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Walter Nguyen4, I am so sorry about your father. 🙂

What's the diagnosis?

My dad was diagnosed with oropharyngeal cancer, where surgery wasn't even an option because of how big the tumor is. After 14 days in the hospital getting a tracheostomy and a gastrostomy, he was sent home.
Still waiting on the call regarding the pathology results from the biopsy.

But what really crushed us was that exact word, "palliative"—when they told us we were assigned palliative care and everything that comes with it... we just fell apart.

He's physically quite weak, lost a lot of weight... I don't even know if they'll give him any therapy (radiation, chemo...). Mentally he's holding up okay, as much as that's even possible since he's aware of everything and knows the scenario is bad... 😢

Ah, lungs, pelvic bone metastases... I suppose I’ll just have to embrace you too.

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Linda Kern38 said:Oh, lungs, pelvic bone metastases... sending you a huge hug.

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In this specific situation, receiving palliative radiation doesn't necessarily mean someone is strictly considered a "palliative patient." If the metastases have reached the pelvic bones, doctors might opt for palliative radiation specifically to manage symptoms—like dialing down the pain—rather than aiming to cure the primary disease through that specific procedure. It’s important to note that choosing this route doesn't rule out active, curative treatments later on; those decisions really depend on the specific tumor type and its genetic profile.
For more general information on lung cancer: https://www.oncology.org/lung-cancer

Best of luck.

I spent about four hours yesterday scrolling through this Reddit thread from the very beginning. I just needed to see that my mom and I aren't alone in dealing with Dad's illness. We are at the 14-month mark with glioblastoma, and things have taken a turn for the worse over the last two months. No matter how much you hope or pray, the disease follows its own nature. I admire all of you; regardless of how things turn out for your loved ones, you are all heroes in your own right. It’s tragic that anyone has to endure what we are going through. Thank you all for providing even a small amount of comfort during these difficult times.

ruggedgardener74 said:I spent about four hours yesterday scrolling through this Reddit thread from the very beginning... just trying to see if my mom and I were alone in what we're going through with Dad's illness. We’re at month 14 with glioblastoma, and things started taking a turn for the worse two months ago. No matter how much you hope or pray, the disease follows its own rules. I admire all of you. Regardless of how things end for your loved ones, you're all heroes in your own stories. It breaks my heart that anyone else in the world has to endure what we are... Thank you all for providing even a little bit of comfort during these hard times.

🙂
Unfortunately, you aren't alone. 😢 I showed up here about a month ago after my father was diagnosed with a tumor.
Like most people, this Reddit has been my source for info, faith, hope, and comfort... I check in here every morning and every night. Sometimes I post, sometimes I just read...
It’s just been incredibly heavy lately, and I'm really looking for some solace here.

Is your dad at home or in the hospital?

My dad is home. Everything seemed fine after two surgeries and a full 12 months, but then the recurrence hit. Now his personality, memory, and so many other things have completely changed.
He’s currently on his third line of chemo, which we are paying for out of pocket, and honestly, I can see him getting worse every single day.
How are you all doing? Did your fathers undergo surgery?

As soon as the doctors finished the scan and diagnosed my dad's tumor, they told us right away it wasn't operable 😢 honestly, it just crushed us. We knew things were bad, we knew it was likely malignant given everything he was feeling, but hearing surgery was off the table... it just broke everything. He has an appointment with the oncologist next week, so we'll see what the plan is then.

He spent 14 days in the hospital where they had to put in a tracheostomy and a gastrostomy. He’s being fed directly into his stomach now because he can't swallow... he's gotten so weak. I don't even know if they'll offer him any kind of treatment at all.
While he was still in the hospital, they already assigned him to palliative care, explaining that this is a heavy diagnosis and it's good to be on the list, though to me, it felt like they'd already decided there was nothing more they could do.

Coming here to read about your experiences helps a little... makes it feel like we aren't completely alone. But every day just keeps getting harder...

Sometimes surgery isn't even a guarantee that things will turn out okay. How old is your dad?
My dad's illness has completely broken me. We've been living with nothing else for a year now. He was right on the verge of retirement, and now he’s stuck living like this at the end of his career.

True, what you said about surgery hits home: sometimes things actually get worse after the procedure. A lady I know—her husband had a similar diagnosis—told me that looking back now, he’d never agree to the surgery if he could go back in time. So... how do you make the right call?

Maybe it sounds naive, but you know that feeling where you think surgery will just... excise the beast inside you? That's my layperson's take on it, anyway.😢

Dad is 63...

My 62-year-old...
And then there’s the chemo. Those drugs just wreck him without even reaching the tumor itself.
Don't even get me started on our doctors and hospitals. If you actually want to help your patient, you have to teach yourself everything about the disease overnight.
I am miserable, sad, angry, and desperate.

ruggedgardener74 said:I'm 62...

Don't even get me started on our doctors and hospitals. You basically have to become an expert overnight if you actually want to help your loved one through this.
Just feeling lost, sad, angry, and completely desperate...

EXACTLY!!!

I won't even go there since I'm sure we've all lived the same nightmare, but it’s honestly pathetic that patients and their families have to rely on Google and the internet for answers during their darkest moments.

And trying to actually reach a doctor—whether in person or over the phone—is a mission impossible.

Kudos to the few exceptions out there...