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"Hindsight is 20/20!" "You know, in retrospect..." "Looking back now, I'd..." "If I had it all to do over again..." "If I had known then what I know now..." Chances are, if you're a caregiver, you're guilty of saying at least one of these catchphrases at least a little bit often. I know I am. A LOT a bit often! Why is that? Why is it that we never feel prepared to be a caregiver, and always feel like a little of our well-earned wisdom would have been useful at the beginning of our experience? Here's what I think: our loved one's diagnosis knocks us for a loop; we stumble, we grasp, we stand back up, we take action, and then we can usually coast for a while--and occasionally, the cycle repeats. But: we were never given a chance to study for this test. We weren't given a warning. We catch the curveball using the only skill sets we already have, and we run with it. Stumble: What the **** just happened? Where do we go from here? Grasp: Get our heads back in focus, get info, get a plan. Stand back up: We go through our days--every day--as best we can. Somehow, stuff gets done. If it doesn't, we move on. Take action: Take the info we found and start acting on the plan: a testing plan, a treatment plan, a scheduling plan, a support plan, any plan. Coast: The plans in place gradually become blessedly routine. The less work we have to do to establish the plans as the plans settle, the more surprised we are that our days do still revolve--but they just revolve around something we never would have expected. (This is sometimes referred to as the "new normal.") Any caregiver is familiar with this basic framework. But: Finding the way that this paradigm can shift and meld onto any particular family, situation, or lifestyle? There's the rub. That's the part that's not so simple. The GOOD news is: that's the part where other caregivers are the best and most helpful resource. What calendaring app do you use? What foods help with nausea? What do you say to your kids? How do you organize medical information? Which chores should I prioritize? How can I draw boundaries with my family? How can I ask my friends for the support I need? How can I communicate better with my loved one's medical team? Where can I go for reliable supplemental information? How do I find self-care time? And, by the way, what IS self-care? At the end of the day, one thing is patently obvious: with most new life experiences, you may not even know what resource/help/knowledge you need (or needed!) until you are well on your way. Caregiving is a prime example. To that end: the best and most helpful source--the reference with the breadth and depth of life experience to draw upon--are your fellow caregivers. LUNGevity has TONS of ways to connect with a network of folks with similar experiences. Just to name a few: the LUNGevity Caregivers Facebook group (http://facebook.com/groups/1009865522379898), the LifeLine mentorship program (http://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring), and the Caregivers message boards here on the Lung Cancer Support Community (http://lungevity.org/for-patients-caregivers/support-services/lung-cancer-support-community). (Not to mention the Caregiver materials library at http://lungevity.org/for-patients-caregivers/caregiver-resource-center). Also: LUNGevity hosts the only regular caregiver-focused Twitter chat in the lung cancer advocacy field. We meet on Twitter under the hashtag #LCCaregiver every first Wednesday of the month, starting at 8:00pm Eastern time. This is a sort of live chat room, addressing issues that caregivers want and need addressed. All are welcome! This month, we will be discussing this exact conundrum: what do you wish you had known before you became a caregiver? What can your fellow advocates (and advocacy organizations like LUNGevity) do to help you learn what you need to know at the front end? How can we help you "grasp" the info you need in order to make a smooth transition into your role, and get settled as quickly as possible in a somewhat comfortable routine? How can you be supported in your role by being given notice ahead of time of what you may need or want to know, do, or think of? How can you catch the signals ahead of other curveballs? To assist in answering these questions, and to continue this conversation, we'll be hosting a sort of "Caregiving 101" for our chat this Wednesday. Several experienced caregivers will offer their best advice--the things they wished they had known before starting their work of supporting their loved ones through a lung cancer diagnosis. Please join us to learn together; to hear from others who understand the ups and downs of what you're going through; to share your stories and your advice; and to help us understand how we can better help each other. Wednesday, June 6th, 8pmET, on Twitter, at #LCCaregiver. I can't wait to "see" you there! Thank you, my friends!
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Join LUNGevity Foundation for a Twitter chat about Palliative Care: What it is and what it isn't. We'll answer questions and dispel myths about palliative care for lung cancer patients. Be part of the conversation on Wednesday, April 4, at 8:00PM ET. Use #LCCaregiver to join or follow the conversation. For more information about palliative care, visit LUNGevity's Lung Cancer 101 website.
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Let's talk about lung cancer and nutrition with the experts from Savor Health! Join LUNGevity for a special Twitter chat on Wednesday, March 7, at 8:00 PM ET. Use #LCCaregiver to follow or join the conversation. All are welcome!
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Do you want to learn how to become an empowered, informed lung cancer advocate? Join LUNGevity Wednesday, February 7, for a Twitter Chat about Caregiver Advocacy. Join or follow the conversation using the hashtag #LCCaregiver. Lung Cancer Caregiver chats are hosted the first Wednesday of every month from 8:00PM - 9:00PM ET.
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Join LUNGevity for a Lung Cancer Caregiver Twitter Chat the first Wednesday of each month on a topic relevant to caregiving. Tonight, we'll be discussing "Managing Holiday Stress for Caregivers." The holidays are a special time but they can also bring additional stress and a wide-range of emotions for families affected by cancer. The “new normal” can be quite challenging, especially for caregivers. Tonight we’ll discuss different ways that caregivers can seek support while supporting their loved ones during the holiday season. We'll be starting at 8PM ET. You can join or follow the conversation using the hashtag #LCCaregiver! -
The demands of lung cancer caregiving can be overwhelming, especially if you feel you have little control over the situation or you have little or no help. Let's chat about it! Have you ever felt helpless and powerless in your role as caregiver? It's important to watch for warning signs and take action right away to lighten your load and avoid serious burnout. TOPIC: Lung Cancer Caregiver Stress, Burnout, and Depression We will chat about signs and symptoms of caregiver stress and burnout. How can you recognize the signs of caregiver stress and burnout? What resources are available to help ease the burdens on lung cancer caregivers? Ways that families and friends can help their loved ones and share experiences and tips that may help others. DETAILS: Date: Wednesday, August 3, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. TWITTER CHAT TIPS: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCChat. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!
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Join us for the next Caregiver Twitter Chat: Topic: How Can Lung Cancer Caregivers Communicate with the Healthcare Team? Date: Wednesday July 6, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. Twitter Chat tips: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCChat. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!
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Let's talk about Long Distance Caregiving! Topic: Long Distance Lung Cancer Caregiving/Sharing Responsibilities More information: What is Long Distance Caregiving? Can you participate in your loved ones care when you don't live with them? We will discuss ways that families and friends can help from a distance and hear from others who have experience being long-distance caregivers. Date: Wednesday June 1, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. Twitter Chat tips: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCCaregiver. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!
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Let's talk about caregiving! Join us tomorrow on our monthly #lungcancer caregiver Twitter Chat.#YourJourneyTogether #SeekingHelp Read more and share! Lets talk about Caregiving! Topic: Seeking Help One of the biggest challenges in asking for help is taking that first step. Given everything else a caregiver is focused on while caring for their loved one, seeking help can relieve stress and some of the pressures of caregiving. Join LUNGevity for our monthly 1 hr Lung Cancer Caregiver Twitter Chat Date: Wednesday January 6 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to lung cancer caregivers, patients, survivors, and professionals. We will discuss seeking help from family members, friends, and professionals. Ask questions, share ideas and tips that worked for you and challenges to watch out for. Are you a patient seeking help for your caregiver? This chat is for you too. We will talk about ways to get organized and practical resources and tips you can use in your caregiving. Twitter Chat tips: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCCaregiver You'll be able to follow right along and read everyones tweets, retweets, likes and replies!
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Don't miss this Tweetchat! December 2nd, 7pm CT/8pm ET We will discuss the caregiver role, things you wish you had known and tips for new caregivers. -
Katie Brown will be a guest tonight on Twitter- join us #LCSM Please join #LCSM Tweet Chat TONIGHT 10/22 at 8pm ET for "Sharing Your Story: Talking Points for Lung Cancer Advocates." http://lcsmchat.com/2015/10/21/lcsm-chat-1022-at-8pm-et-sharing-your-story-talking-points-for-lungcancer-advocates/
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Dr Carbone will be doing his FIRST ever twitter chat today with LUNGevity. We will be talking immunotherapy and he's answering your questions starting at 3pm eastern www.twitter.com/lungevity keep in mind he's brand new to Twitter (@DCarboneMD) so your patience is appreciated. Spread the word !
