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

Angela Wright said:Man, I am so incredibly sorry. Sending you all my love right now. 😢

thanks, it dragged on for 8 months

Hey everyone, I’ve been lurking here for a few days now just trying to find some kind of comfort.
About three weeks ago, we found out my grandma has colon cancer that's already spread to her liver. It hit her all at once and she's completely bedridden now. We're still waiting on the biopsy results, but honestly, the prognosis looks pretty grim because her heart is weak, and she actually turned down heart surgery back when she was eight months along with her previous issues because she was just too scared. Now the doctors are saying she probably wouldn't even survive the colon surgery because of her heart condition. To make matters even worse, an ileus is starting to form around her bowel.
I can't even put into words the absolute heaviness in my chest right now. This incredible woman was the one who stepped up and raised me when I lost my parents at nine years old.
My heart is just breaking and the grief feels totally overwhelming.
I'm desperately searching for even a tiny shred of hope that things might improve, but every single day just brings more bad news.
I just had to vent to people who actually get it, so please don't judge me for dumping this here.
Wishing you all nothing but the best—stay strong and fight this damn disease!

Kimberly Booth said:Sadly, my sister lost her fight. She passed away on September 11th.

Please accept my deepest condolences. I am so incredibly sorry.

Amanda Wells75 said:Look, just take my sincerest condolences, I am so sorry!

thanks

Angela Wright said:Dear Benjamin Grant6, please accept my deepest and most sincere condolences.
Your mother was truly a remarkable woman, a testament to how even when faced with the harshest prognoses and the most daunting diagnoses, a well-coordinated oncological approach can grant precious, quality time... I am certain that over these eight years, you all cherished moments dedicated to life's most vital little things and core values. Every goodbye is difficult, especially one that feels premature, but if we view our existence within the vast context of the universe, we are merely a flicker... and perhaps quality is, in truth, far more significant than quantity.
May she rest in peace, happy, and may you find peace in your heart to move forward with happiness, knowing you did everything possible and she gained so much from it. Honor her memory in peace.
Thank you for reaching out.

Thank you.

It is honestly difficult to weep for such a fighter. On October 9th, we were all together at Avian. It was the first time she spoke about what her doctor had told her—that "medicine has done all it can." Then, on October 19th, she decided to have a nephrostomy placed to prevent kidney atrophy, while simultaneously arranging an exam and a potential surgery at Avian (the very one they hadn't recommended)... She fought in every sense of the word.

She taught us that life can be incredibly difficult, and that one must live it to the absolute fullest. Unfortunately, the diagnosis was aggressive and severe, though she managed to navigate every stage of the illness with grace alongside her doctors, except for the very end...

Amanda Wells75 said:I am so deeply sorry for your loss; it feels as though yet another battle has been lost... Please, try to stay strong and take pride in yourselves, for I am certain you did everything within your power to help your mother. Losses like these cut so deeply and leave me quite tearful. I understand how devastating this is, as I am still struggling myself after losing my own mother this past March to stage IIIc ovarian cancer... it hasn't even been ten full months since her diagnosis, and all I can say is that life is profoundly unfair and merciless. Hang in there, and please accept a large virtual hug from me...

It is incredibly unjust. I am sorry that you weren't afforded the same opportunities we had to gain more time and adjust to the circumstances. And yet, no matter what, it is never truly enough to accept that the one you love is slipping away...

Courage is a virtue. One must find the strength to be brave and continue moving forward, knowing our fighters are still walking beside us, even if they are no longer visible to the eye...

Nancy Hernandez43 said:Thanks!

Honestly, it’s hard to find the tears for a fighter like her. Back on October 9th, we were all together at Avian. That was the first time she actually opened up about what the doctor told her—basically saying "medicine has done all it can." By October 19th, she had already decided to get a nephrostomy installed to prevent kidney atrophy, while simultaneously arranging a consultation and a potential surgery at Avian (the one they hadn't originally recommended). She fought in every sense of the word.

She taught us that life can be absolute garbage, and because of that, you have to live it with everything you've got. Unfortunately, the diagnosis was aggressive and brutal; she managed to navigate every stage of the illness alongside her doctors with total grace, right up until the very end.

I think it’s more accurate to say that shitty things happen in life, but if you have people you love and who love you back—especially if you just need a little more time to experience that kind of connection—then you fight and you live life to the fullest.
We are all just fragile butterfly wings; the only difference is the style of flight we choose for ourselves.
May she rest in eternal peace!

Angela Wright said:I think it’s more accurate to say that life just throws crap at you sometimes, but if you've got people you love—and who actually give a damn about you—especially if you still need more time to learn how to love and be loved, then you gotta fight for it and live life to the absolute fullest.
We're all just fragile little butterfly wings, really. The only difference is the style of flight we choose for ourselves.
May she rest in peace. Forever.

👍

I am absolutely terrified. My mom is doing terribly—it’s breast cancer that has spread to her lungs, so she’s struggling to breathe. I’m trying to stay grounded, but the fear is overwhelming because I’m caring for her all alone in our apartment. Thankfully, she isn't fully aware of how bad things are since she's been bedridden following a stroke.
Am I being foolish? Would it be better if she were actually in a hospital setting??
Please, I need some advice; her doctor hasn't been helpful at all.

Angela Johnson28 said:I am absolutely terrified. My mom is doing poorly—breast cancer that has spread to her lungs, so she’s struggling to breathe. I’m trying to be realistic, but I am scared out of my mind because I'm caring for her all alone in our apartment. Thankfully, she isn't fully aware of how bad things are; she's just been lying there immobile for quite a while following a stroke.
I'm not exactly a medical expert—would it be better if she were in a hospital setting??
Please, I need advice. Her doctor hasn't been much help at all.

In my opinion, you really need to look into inpatient care or a hospice facility. Unless you have some actual training in palliative care, trying to manage this level of illness on your own is an uphill battle you aren't equipped for.
Also, if your doctor hasn't already ordered home health nursing, demand it. Under the Patient Bill of Rights, your mother is entitled to daily nursing visits for about 45 minutes.
You should also ask the doctor about a palliative medical home health team.
She’s going to need an oxygen concentrator. You can often get one through insurance, but a pulmonologist has to write the formal recommendation first. And now you have the hurdle of actually getting an appointment with a pulmonologist...
...to put it bluntly, providing proper home care for a patient in this condition requires an exhausting amount of running around and constant effort—effort that would be provided immediately in a specialized facility. If there is any way at all, try to scrape together the funds for professional placement. Your mother is terminally ill, and the priority should be ensuring that whatever time she has left is spent with dignity.
Hang in there.

Thanks for the advice!
The home health nurse is already coming by, so I'll check in with her about an oxygen concentrator—nobody actually mentioned that to me. For now, she’s just getting help from respiratory injections.
Can anyone recommend a good facility? Ideally somewhere in Washington, D.C. with decent conditions and quality care.

Angela Johnson28 said:Thanks for the advice!
She’s got home health care, so I’ll ask them about an oxygen concentrator—nobody mentioned that to me. Right now, she’s relying on breathing injections to get by.
Can anyone recommend a good facility? Ideally somewhere in Washington, D.C. with decent conditions and quality care.

I don't have any firsthand experience, but I know there are plenty of threads on the health forums regarding facilities like that. Try plugging some keywords into the search bar.

As for the oxygenator, you should probably have a pulmonologist make the initial recommendation and then fine-tune the oxygen dosage. It isn't exactly a straightforward process.

Thanks so much, truly.

Angela Wright, please tell me something intelligent. Next month marks three years since Mom was diagnosed with breast cancer. Everything seemed manageable back when she could still look after herself, but that's over now. She can't even bend down without struggle, she’s constantly shivering, and she claims she has no appetite, though she still tries to cook bits and pieces here and there. The real issue is her refusal to discuss what happens when she can no longer be self-sufficient, and I fear that time is approaching much faster than she realizes.
My brother and I both have jobs, and between our incomes and her Social Security, we could afford to move her into an assisted living facility, but she rejects every single suggestion.
There is also the option of hiring a retired nurse to provide 24-hour care at home, but she won't have it. She shuts down every proposal, stubbornly insisting that she will end up in a state nursing home. I can only visit her on weekends, not during the week; the facility where we could actually place her is just in the next street over, meaning she could visit daily, yet she persistently refuses everything.
Grandpa spent a significant amount of time in those state facilities, so I know firsthand how miserable it looks; it is heartbreaking to witness all those discarded people. Grandpa was bedridden in one about five or six years ago, and I find it hard to believe that the dismal conditions have improved. We all know the state of our healthcare system. She could live peacefully in a care facility with their professional nursing, alongside my daily visits and visits from her friends, but no, she won't budge.
The only way I can truly help her is by placing her in professional care. This constant refusal—this lifelong negativity—is absolutely draining me, especially since I've been struggling to keep my own head above water after undergoing radiation for a brain tumor. It feels like in this situation, I can't exactly play the "good cop" while being overwhelmed by the reality of it all. My brother works abroad; he found a job there a little over a year ago. Perhaps she expected him to stay by her side, but he simply left, following the path many others take, chasing better opportunities elsewhere.
How does one help someone who refuses to be helped?

Not at all.
But look, you can actually do something helpful for both yourself and your brother here.
Just drop her off at the facility and tell them it’s just a temporary stay until a permanent spot opens up at Dover... and then you just drive her back and forth, the same way she’s always been there for you. Once she realizes how much better she feels, she won't even bring up Dover again.

Angela Wright said:Not necessarily.
At least you can do something for yourself and your brother.
Just drop her off at a care facility and tell her it’s only temporary until a spot opens up in Dover... then you just drive her back and forth, just like she does for you. Once she realizes how much better she feels there, she won't even bring up Dover again.

That is actually a solid idea. 👍 My brother is currently out in Germany. For now, I am going to leave her be, but once things take a turn for the worse, I will bring it up again. Maybe when her condition declines further, she might reconsider.
When you really think about it, anyone would find it incredibly difficult to leave their own home. She has lived in that house for over 30 years.
Thanks for the suggestion.

In the meantime, you should probably check if your mom qualifies for home health care through Medicare (definitely look into it). A nurse could be coming by about three to five times a week for anywhere from thirty minutes to an hour, depending on what her primary care physician decides she needs. They can assist with things like hygiene, meals, managing medications, and so on—it’s not like someone will be camped out in her apartment 24/7 if she values her privacy. Plus, it gives her a bit of social interaction right there in her own home while you figure out your next move.

Angela Johnson28 said:In the meantime, your mother probably qualifies for some home health nursing through Medicare (you should double-check that). A nurse can come by about three to five times a week for anywhere from thirty minutes to an hour, depending on what her primary care physician decides is necessary. They can help out with hygiene, meals, managing medications, and things like that—it's not like they're living in the house 24/7 if that would bother her. It might even give her someone to talk to in the comfort of her own home while you figure out your next move.

I am aware she is entitled to home health services. Essentially, it comes down to the primary care doctor determining when the need for assistance arises. I will follow up with her regarding this. Otherwise, she keeps complaining about the pain, yet refuses to take any pills or use patches because she hasn't asked for them. I simply cannot wrap my head around her logic; she is obsessed with the idea that medication—these "chemicals"—are harmful and insists she won't touch them. 🙄She is constantly worrying about the side effects, as if she’s planning on living for another hundred years.

Look, when the pain gets truly unbearable, people start looking for anything—even heroin, unfortunately. It’s obvious to me that she can handle what she’s dealing with right now.

Not sure if this is the right spot for this, so if I'm off base, could a mod please move this to the right thread?
I was wondering if it's actually normal for a hospital to just hand over a discharge summary without including any of the actual lab results or a detailed breakdown of the procedures they performed on the patient after they pass away.

The cancer diagnosis didn't even happen until they were admitted to the hospital, and then everything moved so fast—the patient passed away within 20 days.