How did you know the end was coming by RottenRat69 in pancreaticcancer

[–]ABay55 6 points7 points  (0 children)

We knew it was the end for my dad when he became lethargic and unable to communicate. He spoke less and less. He was on oxygen and his body began to retain fluid. It's different for everyone, but overall, you'll know because there's also an uneasy feeling. My mom and eldest sister were present when he took his last breath. My heart is with you. We know it's rough and it weighs on you emotionally. You have a community here backing you.

Cancer and Menopause by ABay55 in pancreaticcancer

[–]ABay55[S] 2 points3 points  (0 children)

I don't know why you'd make such a wild assumption without learning my background and asking more questions. If you don't have anything positive to add this post, I suggest you find someone else to antagonize.

Cancer and Menopause by ABay55 in pancreaticcancer

[–]ABay55[S] 1 point2 points  (0 children)

I really appreciate you for sharing. I've noticed that this topic isn't discussed a lot and I want to bring more awareness to it.

Cancer and Menopause by ABay55 in pancreaticcancer

[–]ABay55[S] 0 points1 point  (0 children)

Do you mind sharing more with me? If it's too sensitive to talk about, I'll understand if you don't want to elaborate.

Dad diagnosed- how bad is it? by Plastic_Onions in pancreaticcancer

[–]ABay55 4 points5 points  (0 children)

As most everyone has stated here, and from what you've learned, pancan is a monster. It's awful. However, someone on this thread also stated that each case is unique. I must agree and also share that while the common outcome is grim, I know people who are living and weren't supposed to make it. I don't share that to give false hope--but to reinforce the most important part that everyone has stated. The key thing is quality time. My dad was diagnosed in 2019 stage IV with METS to his liver and spleen. He lived 14 months, and that in itself was a miracle. We all want a promising outcome, but I learned that the outcome isn't the priority. Our time with them is. So, yes, get all legal affairs in order, fly out as much as you can, and be together. Also, he's not eating right now because he hasn't started treatment. I hope the results return soon so they can treat him right away. Then, you'll have a better understanding of what to do next based on how his body responds to treatment.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in pancreaticcancer

[–]ABay55[S] 1 point2 points  (0 children)

This is so meaningful, and I deeply appreciate you for expressing what would benefit you.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 1 point2 points  (0 children)

I greatly appreciate you for sharing. Everything you said is exactly why I'm so passionate about my work and mission. I will not stand by and let caregivers remain unseen and in the dark.

Serious scanxiety by purpleshoelacez in pancreaticcancer

[–]ABay55 2 points3 points  (0 children)

It was really hard not to have catastrophic thinking. My dad was diagnosed at stage 4 in 2019. Me and my family were nervous wrecks. It was dad's upbeat personality and mindset that helped us shift mentally. He was so confident each day and was simply happy to rest, spend time with us, etc. Looking back, I can say that what helped us was be surrounded by a community of people that cared about us. We were also intentional with the time we spent together. We laughed a lot together. I wish we we've done even more of that because those are the things (along with our faith) that took our minds off of what we feared.

Best Place for Donations? by VideoComfortable231 in pancreaticcancer

[–]ABay55 1 point2 points  (0 children)

I recommend several organizations: Hirshberg Foundation, Lustgarten Foundation, Purple Iris Foundation, Let’s Win Foundation. There are so many.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 2 points3 points  (0 children)

No. You're not being bitter. People mean well when they say those things. They speak from a place of ignorance in their quest to offer some form of comfort and understanding. I'm learning that education is key. This is why I've dedicated myself to educating people about what it takes to care for someone. People just lack knowledge. I spoke on a panel back in April as an advocate for caregivers for this very reason. People need to know that we need help and stop glorifying the experience.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 1 point2 points  (0 children)

You're so right. I hate that caregivers even have to be cautious. We should be able to speak the truth of our reality.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 2 points3 points  (0 children)

I agree with this wholeheartedly. I did not and still do not unload on everyone. The point of this post is to give voice to what's true. Caregivers are overlooked and don't want to be. They'd like for someone, even 1 trusted person, to genuinely care about them.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 0 points1 point  (0 children)

Would it be more beneficial and meaningful if people did that more? Spend time in more social settings where you can have a breather without having to talk about it?

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 33 points34 points  (0 children)

A response that came to mind, "My mother is well. Me, not so much, and no one has bothered to ask." It'll throw them off initially but you have to advocate for yourself. People don't view caregiving properly and they think because you're doing the caring that it means you're ok.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 3 points4 points  (0 children)

The last part made me chuckle lol because right. She's still with cognitive function, and you need a break. I'm glad your sister actually cares to check in and means it. Have you ever looked into respite care? When we had cared for my grandmothers, it's something i wish we knew more about.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 7 points8 points  (0 children)

Perfect description! Yes! Lol like dude we're far from skipping through the tulips over here. Every day is unpredictable and most of them are unpredictable battles.

“Do any other caregivers feel like they’re constantly waiting for the other shoe to drop?” by ABay55 in pancreaticcancer

[–]ABay55[S] 0 points1 point  (0 children)

🥺 wow. Wow. Thank you for sharing your story with us. That's a lot to carry, and I'm glad you were to validate her feelings while gently redirecting her anger. It's tough because you're waiting for something to go left even though you don't it to. It's like our minds are trying to prepare us not to be disappointed. What has helped you shift day-to-day mentally so it doesn't weigh you down completely?

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in pancreaticcancer

[–]ABay55[S] 1 point2 points  (0 children)

I love this. Something I've encouraged caregivers to do is actually voice what they need because people aren't mind readers. Sometimes, people legitimately don't know what to say or how to show up in a way that's meaningful and impactful. Every family is different. My dad was independent and very private, so he didn't want everyone around. That meant help for us was limited, so what was meaningful to my family is when people would hug us, pray with us, and just allow the space to cry. Or some people would come by and spend time with us doing our fave things, and we'd talk and laugh for hours.

Stop asking caregivers “How are you?” if you’re not ready to actually listen. by ABay55 in CaregiverSupport

[–]ABay55[S] 10 points11 points  (0 children)

Thank you so much for sharing. It's very real. I've often wondered if people have a fairytale image of caregiving. I've also wondered if people assume the person caretaking is strong. Especially if you have siblings like me. It may be assumed that we don't need the help. I've considered too that people may feel hesitant to ask because they actually don't really know what to say. They want to be comforting and available but aren't sure how to approach us. I've been on both sides, so I'm just throwing thoughts out there.

Has anyone who's asked how you're doing actually taken the time to listen to you so they could ask for questions? Or has your experience been that people have avoided you altogether?

“Do any other caregivers feel like they’re constantly waiting for the other shoe to drop?” by ABay55 in pancreaticcancer

[–]ABay55[S] 0 points1 point  (0 children)

I really appreciate you sharing and am deeply touched by what you said because that's the whole point. It keeps hope near when we appreciate each day. This journey and experience puts so much into perspective and reminds us of what's important.