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About this blog

Welcome to LUNGevity's Caregiver-focused blog! I'm your host, Danielle. I am so happy to meet you!

We will travel this "caregiving" road together, and learn from each other as we go. LUNGevity and I will host monthly Twitter chats under the hashtag #LCCaregiver. This blog will be a forum to introduce and analyze topics of Caregiver concern, and the chats will be a safe space for discovery and sharing. Everyone is welcome. Bring a friend! Let's get started! It is my sincere hope that this project will be useful and inspirational!

P.S. Make sure you are following @LUNGevity and @Actorielle (me) over on Twitter!

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Entries in this blog

DanielleP

 

Hello, my dear friends!

I. Have. Missed. You!

It is so tempting, in my relationship with caregiving, to take on blame. Blame myself for this or that. Plans didn’t go off accordingly? It’s my fault. Time got away from me without my control? Oh, that’s my fault, too. Sign me up!

Since my last post, our “best laid plans” were thrown out the window. Forcefully. To be totally real with you, my friends, I had wanted so badly to post about ALL THE HOPE in May. I wanted to fill your inboxes with notifications that there was a new post here every day. I wanted to fill your “Caregiver Quiver” (ooooh, I like that, I’m gonna use that!) with so many HOPE arrows that you would have a weapon to combat every moment of hopelessness.

After all, May was Lung Cancer Hope Month (thanks to LUNGevity!). That’s huge. For a diagnosis that used to be like a flipped hourglass, any dose of HOPE can make the difference between having or losing the will to fight. We who spend every day in the LC community know there is SO MUCH HOPE, and yet Society At Large still sees the hourglass.

So: I had wanted so badly to fill your May with links and resources and information on the newest and best stories and breakthroughs and answers. That was my “best laid plan.”

But then, my dad ended up in the hospital for the entire month of May. My mom is my LC patient, but my dad has his own chronic health issues that require frequent hospital stays.

You know the darndest thing about hospital stays? They aren’t always marked out in my day-planner! Shoot. Go figure!

So. There went May. And I have been tossing and turning and being grumpy and angsty about letting you guys down. I went and pulled the tweets from our last #LCCaregiver twitter chat, when we talked about HOPE and how we could spread hope and share hope and how we as caregivers could encourage our loved ones to have ALL THE HOPE. I was in a real funk, guys. I really felt like I had lost the chance to really make Lung Cancer Hope Month “count.”

Then, it hit me…

Do you remember what we talked about in that chat? Because I do, and I will NEVER, ever forget it.

We talked about HOPE, and sources of hope, and we said: this community is our source of hope. This group of souls going through the same thing is our source of hope. We feel hopeful by being there for each other, thick and thin.

And my angsty funk? My trying to stick to plans? That was all making me feel hopeLESS. I was acting and talking like a person who felt hopeLESS.

No more. I reject that trap. You are my family, and I am yours. I don’t need deadlines and set schedules to be there for you, and you don’t need that to be there for me! The most relieved I have felt along this entire walk with lung cancer have been the times when I let go of trying to keep to an ironclad schedule, and have instead followed my gut and allowed myself to really be present in the current moment and what the moment needed.

I want to be present for you, and I know you are present for me. We are all in this together.

Now, don’t get me wrong: I DO want to catch up and write some posts about ASCO (the major oncology conference that just took place in Chicago); about recent drug approvals; about ways caregivers can find peace. And I will. But I also know I won’t be letting you down.

Let’s chat!

TONIGHT (Wednesday) at 8pm ET, let’s chat about the support network you keep around you. Let’s talk about what you need, where you feel most confident and least confident, and what you can do to help your support system help YOU. This is an ongoing conversation, believe me; let’s all grab our tea and put on our slippers and come together to follow #LCCaregiver tonight. Questions are below. I hope to “see” you there! Bring a friend; all are welcome.

Love always,

Danielle

#LCCaregiver Twitter chat, tonight (Wednesday) at 8:00PM ET. Follow #LCCaregiver on Twitter to participate!

T1: Who do you consider your “support system?”

T2: What are the strengths in your support system?

T3: What are the gaps or weaknesses in your support system?

T4: What has been the hardest thing to ask someone? What kind of help is hard to find?

T5: Would you rather people ask what you need, or just volunteer specific help?

T6: What resources or tools would you like to have in your Caregiver Quiver? (sorry, can’t help it, I really love that phrase now)

(If you’ve never used the LUNGevity Navigator App, just wait: I’ll tell you about it tonight!)

T7: Are there local resources for caregivers where you live? What local resources would be cool to create?

T8: What can the nonprofit orgs like LUNGevity do for you? (have you checked out LUNGevity’s awesome caregiver resource center?!)

T9: What can your fellow caregivers best do to support you from afar?

 

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DanielleP

Hello, my friends!

I HOPE, wherever you are, that you are having a beautiful Spring!

I HOPE, whatever you are up against, that you are finding support and peace in your endeavors.

I HOPE, however you need, that you are finding the time to create room for yourself in your busy schedule.

I HOPE, above all, that you and yours are doing well.

Thanks to #LUNGevity, May is officially “Lung Cancer HOPE Month.” This particular awareness campaign places a much-needed focus on all there is to be HOPEful about in the #lungcancer world. To that end, we will be talking frequently this month about what HOPE looks like; what it feels like; what it means to you and to your loved ones involved in this lung cancer experience.

Also: I had the extreme honor of attending LUNGevity’s national HOPE Summit this past weekend. For the first time, the Summit featured a separate day of sessions designed for Caregivers: the “COPE” Summit.

My suitcase is still in the hall; I am still sore, sleepy, and overwhelmed: in the MOST productive and phenomenal way possible! If you have not yet attended a regional or national HOPE Summit, I could not possibly recommend it more wholeheartedly. The experience is hard to explain, other than saying it is a near-necessity for anyone touched by lung cancer: there is nothing more uplifting than being surrounded by fellow survivors, Caregivers, experts, and researchers who are ALL working through the same difficulties to reach the same goals. The sense of community is intoxicating, and the sense of forward progress in policy and knowledge is inspiring. It is part conference, part congregation, part school, part party, part reunion, part group therapy, and ALL heart.

Thank-you, LUNGevity!!!

I had briefly considered writing a novel-length post that would recap all of the Caregiver-specific takeaways from the weekend, but then I realized that that would be unfair: unfair to you, my friend, having to read all of that at once, and unfair to the extent of the material itself. I have plenty of talking points from the conference to share with you, all about HOPE, and since this is HOPE month…you see where I am going with this…

Stay! Tuned!

Let’s start conversations! Let’s put our heads together and be honest and be open and reach out. I would be honored to hear from you!

To kick off this month-long conversation, our regular monthly #LCCaregiver Twitter chat will be tonight (Wednesday, 5/3) at 8pmET. You know the drill: follow the hashtag #LCCaregiver to participate. (I highly recommend using a chatroom service such as tchat.io as well. Just put tchat.io in your address bar, and enter #LCCaregiver when it asks for a hashtag).

If you are not on Twitter, please join! The lung cancer support community on Twitter is large, active, and incredibly helpful. There is no need to face any of this alone! The message boards and blogs here on LCSC are profoundly comforting, and the Twitter presence of fellow advocates is a meaningful complement.

For tonight’s chat, we’ll be focusing on breaking down a large question: what is the role of Caregivers in spreading and advocating for HOPE in lung cancer? One major thought I’ve had since the HOPE Summit—one major takeaway I will explain in more depth later—is that HOPE can be complicated. It can be especially complicated when the Caregiver is taking the natural backup role: we are not the patient. What are our boundaries? When should we captain the HOPE ship? When should we yield? Is it a different skill to help our loved ones be HOPEful than it is to help spread HOPE in the wider community?

Think on that. The specific topics I’ll be asking about tonight are listed below.

I can’t wait to “see” you tonight! Bring your popcorn and a friend (or two)!

Love and thanks,

Danielle

Topics for #LCCaregiver Twitter Chat 5/3

What does HOPE look like to you?

What brings you HOPE?

What does HOPE look like in the broader cancer community?

What have you done to bring HOPE to your loved one?

What can we, as Caregivers, do to bring HOPE to our loved one?

Is there something that we, as Caregivers, can do to bring HOPE to our loved ones with cancer?

What specific actions can Caregivers take to support Lung Cancer HOPE Month?

What actions are appropriate for us to take as Caregivers to promote HOPE?

What do we do if we have different ideas about #HOPE than our loved ones?

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DanielleP

"Boy, what a week!"
...How many of you know that phrase by heart? All of you! (And not always starting with such an innocent word as "boy...")
Well, that's been my week. And I know it probably has been for you, too.

Just by way of illustration: I went to the grocery store a week ago. On the day of my mom's most recent treatment. Mom's treatment stays usually last about 6 hours, so the day is toast by the time we get home, and we are "pooped."

So, back to the groceries.
I. Just. Now. Finished. Unloading. The. Car.

Don't get me wrong: I got the precious perishables out as soon as we went inside.
But the rest? 
It slept in my car through a week of hot-cold-stormy-sunny. Once we had the front door locked, the outside world vanished.

This week progressed similarly for the rest of our responsibilities, too: we felt under the weather (literally and figuratively), so the ticks on the tick-off list just didn't get ticked. 

I am absolutely sure that each of you knows that feeling. That's one of the safety nets of this community: nobody knows what it's like until they've been there. Not really. That's what helps to build our Caregiver community and our LC community. That's our familial bond. 

But, like most weapons, it can be a sword or a shield. Sometimes, that bond can also be a burned bridge.

Have you ever been challenged by another Caregiver? Asked to defend why you chose a particular approach for your loved one? Asked why you haven't done this or tried that?

I have. And I bet you have, too.
It hurts. 
Not only does it imply that one approach is better (which is condescending), but such criticism places an additional burden on already overwhelmed shoulders: explain this to me! Justify this to me! Take the time to research my position!

Even as we build our bonds as Caregivers, and even as we acknowledge the struggle that unites us, we must always remember that every family is different. Every patient has different needs, so every Caregiver must respond to THAT patient, OUR patient, rather than to some "ideal" formula of caregiving.
Want a live-in aide? Hire one. Don't? Then don't. Same with choosing treatment plans, listening to holistic practitioners, which tasks to assign friends and family, which information to share with whom, how to make the calendar...anything.

I'm as guilty of this as anyone, but I try to consistently remind myself: we are on the same journey, but along different paths. And that's okay.

I would be honored if you would join us at our next monthly #LCCaregiver Twitter chat: tomorrow, Wednesday 4/5, at 8pm ET. Just follow #LCCaregiver to participate. Everyone is welcome. Bring a friend. Tell a fellow Caregiver. Have your loved ones chat alongside you.
I am so excited to share with and learn from you.
The questions and topics are below, so that you may review them before we "meet" tomorrow night.
Love and thanks,
Danielle
💚

Did you find support among other caregivers or do/did you find it more challenging? Why? 

Have you experienced feelings of guilt or judgement placed upon you by other #LCCaregivers?

What are some of the tensions that can erupt between carers?

What are the different tensions between #LCCaregivers in families vs in support groups?

How can a new #LCCaregiver prevent caregiver conflict and competition?

Are there any tips or resources that can help an #LCCaregiver dealing with competition and judgement?

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DanielleP

"Why don't you join us?"
"Can you come? Want to go?"

"I...hope to?"
"I...wish to?"
"I'll check my schedule."
"I will try..."
"I can't. Thanks, though! Maybe next time!"

Doesn't this sound like the common Caregiver script?
I know it does in our house.
Invitations turned down and plans not made.
The secret is:
Even if I thought I could go to the event, I wouldn't want to.
Even when I think the potential plans are logistically possible, I always feel as though I have increased the chances of a setback or emergency just by operation of being absent. It only rains when you leave your umbrella at home. Your phone only rings when it's at the bottom of your bag.

Being absent seems to be the antithesis of being helpful, and being a Caregiver at any level of involvement means being helpful, right? Present. Aware.
If I am neither present nor aware, how can I be helpful? It cuts straight to the "identity" of "Caregiver."

No human can be in two places at once. We all know this.
...But it doesn't mean we don't try it anyway. We teleconference, telecommute, telephone. We Skype and FaceTime into doctor appointments. We do research late at night, elsewhere on the internet and in forums like this one, only to call our loved one's doctor back long-distance the next day to ask more questions.
So, in the moments when we are not present in any way, actual or wired, how are we being *helpful* in any way?
We make ourselves available even when we aren't actually available, so why would we expect any diminution in our commitment to be totally available in lieu of leisure time?
No time is disposable. If anything teaches us the preciousness of time, it's cancer. Brutally and unmistakably. So...what is this "leisure time" you speak of?

I do not like to miss my mom's appointments. That's my Caregiver profile. (And we will talk about the insidious nature of competition and advice between and among Caregivers later this year). Basically, every situation is different just as every family dynamic is different. Patients and Caregivers are people. No one approach works easily as well for one person as for anyone else. (This is the same as what the oncologists tell you about treatment, so it only makes sense, I suppose).
Because I am the kind of Caregiver who balks at missing appointments, my experience is peppered with unmade plans and unmet deadlines. But every Caregiver at any distance or availability feels the same: the waiting, the walking on eggshells, the wondering, the lack of certainty. It all takes an emotional toll. Don't forget: "toll" means "cost."

No Caregiver does what he or she does in order to be called a saint or a martyr. The vast majority of us are not even close to completing the to-do list, and are still way behind on everything, but just doing what we have to do. So: why is it that the support systems in place for the Caregiver always make it seem as though taking breaks is best way to operate? Why are vacations encouraged? "Why don't my well-meaning friends realize how much it hurts when they ask me if I can take time for myself?"

The bill has to be paid. The dinner has to be cooked. The Rx has to be filled. These come first. They are time-sensitive, life-sensitive concerns. They aren't the hurdles we have to jump; rather, they are the very track we run on. It seems the spa days and morning walks and movie dates--let alone vacations--become the hurdles. The extra effort. The energy mustered at the end of the day, the end of the list, if at all.
It is my personal conviction that "self-care" for a Caregiver is not necessarily feasible. Not to the extent that it is discussed and recommended.

It is said that "you can't pour from an empty vessel." But doesn't the vessel take time to refill? And pouring has to happen anyway...
It's a weak analogy.
It is also said that you can't take care of anyone if you don't take care of yourself first. Like the oxygen masks on the airplane: this is another metaphor you see in the self-care conversation quite frequently. A metaphor that is particularly painful in a lung cancer context. If someone needs the mask more than I do--literally and figuratively--I simply have to give it over first, and secure mine later.

This week, on our monthly Twitter chat, we will be discussing the idea of taking care of yourself first. Is self-care possible? Is burnout avoidable? Let's talk! 

We will also be sharing some of LUNGevity's many resources for Caregivers, such as this: http://www.lungevity.org/support-survivorship/caregiver-resource-center/caregivers-job/caregiver-fatigue.

Join us Wednesday (3/1) at 8pm EST on Twitter. Just follow #LCCaregiver to participate!

As always, I look forward to learning from you, and to coming together as a community!
The topics we will discuss are below. Take a look. Sleep on them. I am excited to hear what you have to say!

Love and thanks,
Danielle

 

What are some of the challenges you experience as a Caregiver?

Many #LCCaregivers don't get the help they need, or they take on more than they are able to handle. Do you?

What are some common misconceptions about Caregiving/Caregivers? 

Looking back, what are some warning signs of #LCCaregiver fatigue/burnout?

How can a new #LCCaregiver prevent caregiver fatigue/burnout?

What advice can you share that may help lessen the burden of Caregiving?

Do you feel you have the time to take breaks?

Do you feel the need to take time for yourself?

Do you feel guilty when you take time for yourself?

Do you feel like less of a Caregiver when taking time for self-care?

What do you do for self-care?

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DanielleP

Welcome! Settle in. Get comfortable.

If you’ve joined us here, lung cancer has touched the life of someone you love, and has thereby touched your life as well. I am sorry.

Well: I am sorry you are going through this, for sure, but: I am so glad you have found us here. Excited, even. You have found a new family, and a new wealth of resources. You will not be alone in this (insert your preferred word: some say “fight,” some say “journey,” I say “process”)! 

A few words about me, so you know who you’re “talking” to: I’m 29, and I’m a full-time caregiver for my parents. My awesome mama was diagnosed with Stage IV NSCLC in March of 2015, and has been on an immunotherapy (PD-L1) clinical trial ever since. My awesome papa has other serious health issues, so we all hang out together, as a team, three stooges making the most fun we can (we’re good at that) and doing our best to keep the to-do lists at bay.

Ahhh, those to-do lists…

Ahem. I’m sorry. That’s a topic for another day!

I’m a Social Media Ambassador for LUNGevity (more info here), and a volunteer for other projects of LUNGevity and for various other lung cancer organizations. I am a full-time advocate for better lung cancer care, research, and treatment. You can find me on Twitter @Actorielle, and on Facebook at Facebook.com/Actorielle or at danielleremkuspardue.com.

Most importantly: I’m invested in YOU, in US, and in what it means to be a “Caregiver.”

I have no particularly special training, and no specialized skill set for the tasks and responsibilities of “caregiving.” Here’s the secret: none of us do. We all learn by doing. We learn as we are called upon to fulfill needs. Bridging gaps between an uncompleted chore, an unshopped grocery trip, and an unresearched new treatment. We all tend to launch (or, rather, be launched) into this lung cancer world, with differing levels of healthcare experience, and all grasping for every bit of credible information we can find. Every bit of comfort, reassurance, honesty, and…help.

That’s just it. We all begin this process needing all the help we can get. Your loved one, your patient, has his or her medical team, and has you. You, in turn, can have us. This. LUNGevity’s resources for Caregivers (start here) are vast, and practical, and vetted. You can find everything from peer-to-peer mentoring, to message boards, to an individualized app that organizes your specific lung cancer experience. However: amongst all these tools, where does that leave you, the person of the Caregiver? Where can you feel…Connected?

Here.  In addition to your family and friends and extended support network, join us here!

LUNGevity is greeting 2017 by undertaking several exciting new endeavors, including this one: a new initiative to blog and chat specifically for the Caregiver audience. It’s almost like a New Year’s Resolution!

As we explore this New Year’s Resolution together, you and I and LUNGevity, we will consider a different topic every month. I will introduce the topic here, on the blog, for your perusal. The following week, LUNGevity and I will host a chat over on Twitter, so that everyone (you, me, your family, your support network, and our entire community of fellow Caregivers) can come together to discuss, vent, learn, and grow.    

After each chat, I’ll review our conversations and post a de-briefing blog post. Where are we? What do we know now that we didn’t before? What do we need? Where can we go from here?

So: it is my great honor to invite you to our inaugural #LCCaregiver Twitter chat of 2017, to be held next week, on Wednesday, February 1st at 8pm EST: “New Year’s Resolutions for Caregivers.”

What do YOU want to say? What are YOU working on in your relationship with yourself as a Caregiver, and in your relationship with your loved one? If you have been a Caregiver for a while, what would you like to improve or change? If you are new to this role, what do you need in order to feel comfortable?

As for me, I’m still working on what that title entails. I think we all are. In fact, that one word means something different for every survivor, every family, every household, every situation. “Caregiver.” Care partner, carer, caretaker?

For me: daughter, friend, and advocate.

Join me as we walk this road together.

I am so excited to learn from you.

Love and thanks,

Danielle

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