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Found 14 results

  1. I am sure I am not alone when I say that the past few weeks have felt like a few years. I cannot imagine the heartbreak of those who have lost someone to this new viral threat, and the fear felt by those who have been diagnosed or who love someone who has been diagnosed. As we all hunker down as best we can for the greater good, several concerns float through my mind, like stones skipping on water. I am sure this is true for all of us who are caregivers. We may be pushing through the laundry or the dishes or the Spring cleaning while we are experiencing this odd calendar-clearing, but the backs of our minds are full of what-ifs. And yet, as new and strange as this situation truly is, the stones skipping on the water--the what-ifs in the backs of our minds--all feel soberingly familiar, don't they? Quicker and shorter shopping trips. A meditative focus on handwashing. A bundling up of the medically vulnerable loved one away from exposure. Removal from social situations because the fun that would be had just isn't worth the risk. A gathering of resources and emergency plans so that they are at-hand. The medical team on speed dial. An assumption that all pathogens everywhere are threats to the integrity of one's health and peace of mind. A vigilant awareness of the simple, icky "everywhereness" of the germs. The steps that we are dutifully following as given by experts for the current crisis are substantially similar to the steps we tend to take even on a normal day. It is true that our lives are rife with precautions that are over and above what most folks have to think about in addition to their regular routines. As I see how my friends, colleagues, and acquaintances are handling this sudden requirement to stay home for the foreseeable future, the differences between the daily itinerary of a caregiver and the daily itinerary of someone who is not a caregiver become abrasively clear. The folks who are clearly bored within their four walls baffle me the most: do they not have a medication schedule to keep up? Do they not have dietary restrictions to research before making dinner? Do they not have piles of bedclothes that must be kept immaculately clean? The folks who are bouncing off the ceiling trying to find something to do with their newfound time at home are like exotic creatures to me. What would that be like? I've been doing this for so long that I don't remember a to-do list that wasn't pages deep that all related just to the logistics of this house and the needs of the people inside it. To put it briefly and bluntly: to all my friends who are now working from home, welcome to the world of a caregiver. I am always working when I am at home, and when I am working, I am always at home. I say this all with my tongue in my cheek, of course, with nothing but support and understanding for all my friends who have been abruptly dumped into this situation. But for my brotherhood and sisterhood of caregivers, I say: do not be discouraged by the inconveniences of the sheltering in place. Rather, try and be encouraged by all the ways in which we already know how to deal with isolation and medical uncertainty. Unlike our friends who are not in this boat with us, we know that we are always waiting for shoes to drop. We never know which shoe it will be, but we know one will fall. We are always expecting the unexpected. We are always wondering what new diagnosis might arise, and always wondering how to best seek help for it. So, we have solid plans in place. Blueprints with well-worn edges. Our non-caregiving compatriots do not have the benefit of that foresight. This is not to say that there aren't practical problems in our laps right now that are aggravated by the current state of affairs. To be sure, there are many. There are prescription shortages, doctor unavailability, and treatment postponements, just to name a few; and, of course, the elephant in the room: the stultifying fear of a bug that seems to target our very worst fears. But...I daresay we have already imagined these contingencies many times before, and we have developed work-arounds for them just like an immune system develops antibodies. We are, indeed, an extra "immune system" of sorts for our loved ones. A barrier. A first alert system. We are grieving this international crisis together, and we are fearing deeply for our loved ones for obvious reasons, but take heart in this one thing if nothing else: we have trained for this. We have lived this possibility. Many of us have even had dress rehearsals. I offer you these thoughts in love and solidarity, in hopes that the only-natural fear will not immobilize you, but mobilize you, by helping you to recognize your strength. Let's turn our efforts outwards, to the best extent that we can under the circumstances, and help those who are not prepared. Let's band together in hope and action. We're all in this together. <3
  2. I know it’s happened to all of us at some point during our experience as caregivers: the “self-care” lecture. Eat a vegetable! Take a stroll! Get to the gym, even for fifteen minutes! Get a pedicure! And on, and on, and on… How do these conversations make you feel? I confess that they frustrated me immensely in the earliest days and weeks after my mom’s diagnosis. I was actively offended any time that someone had the audacity to suggest that anything was more important or more time-sensitive than navigating the maze of new information that we were tossed into. I just knew that anyone who could suggest I take time for frivolous activities was way out of touch with reality, and did not understand what I was up against. Worse: I had a feeling in my bones that they did not WANT to try and understand what I was up against. My family’s new normal was in conflict with the suggestor’s point of view on the world where everything was calm and copacetic and pedicures were still a possibility because there wasn’t too much else pressing. Long story short, my friends: I was a wreck anytime someone suggested I take care of myself first. Furious and righteously indignant. One of the most hurtful things I have ever taken to heart (perhaps unfairly, in retrospect) was an extended family member telling me to go get a manicure after I had texted her a photo of a cheap-but-cool new ring I had just bought while running errands. Her words cut me to the core. How dare she? After all, did she not know what was going on? Why did I deserve that amount of downtime, and how would I fit it in if I did, with all the stuff that needed doing? I was so close to saying “well, sure, if you want to fly here and relieve me for a couple hours!” Oh, hold on. Wait a minute. I just looked in a mirror. What’s this I see? I am STILL that person, still feeling those same feelings. They are hard to cast off, even four years after diagnosis, and even with our family somewhat regaining its sea legs and setting sail more confidently into the future than we did when lung cancer was new. I don’t feel this rage or umbrage as often anymore, especially since my parents themselves have been encouraging me to go and do and play and frolic, and I can honestly say I’ve had a few manicures since the “cruel” text. But, to this day, I definitely still build an immediate barrier between myself and any interloper who deigns to tell me to eat healthy and take more walks “because, after all, you can’t pour from an empty vessel.” (Ohhhh how the empty vessel analogy used to boil my blood!) I build the wall because something in my heart tells me that the person who would say those things does not understand me, my family, my parents’ illnesses, my priorities, my choices, or my daily schedule enough to be allowed to weigh in on what I do. Here’s my thinking: no adult is unaware of the need to eat more vegetables and take more strolls and get more sleep. Nobody in their right mind would deny that this is the ideal. But a serious diagnosis upsets every single ideal that a person and their loved ones have embraced and looked forward to. The anticipated and planned future of day to day or year to year fades away, and survival becomes moment to moment. Anyone who has been through it knows this intimately, and I can’t help but doubt the wisdom (not the good intentions, mind you, but the actual wisdom) of those who have not been through this minefield to understand the situation well enough to tell me to eat a vegetable and have it be sagely helpful to my needs. In fact, I recently told a good friend, a fellow caregiver, that “eat better and get more sleep” must have become society’s newest “bless you!,” because I’m hearing it given automatically after telling folks about my situation, just as automatically as they would bless me if I had sneezed. To put things more bluntly: anyone who has not experienced the particular choice of sacrifice for the sake of a loved one’s health/convenience/safety (etc) that a caregiver makes every day has no business telling me what to do, because they have no comprehension of the logistics of my day, and all that must fit inside it, and all the priorities that are NOT me or mine. Don’t get me wrong: I am not advocating for a lack of exercise, sleep, or vegetables. Do I even need to include that disclaimer? I don’t live under a rock and I wasn’t born last night. But that is precisely my point: we must appreciate the intelligence and common sense of caregivers enough to know that such vapid advice does not add information or value to the caregiver’s toolbox. Instead, we as caregivers must encourage more widespread awareness of our situations and all they entail and require, so that people who do have the desire and intention to help can contribute more meaningfully than by speaking platitudes. In other words: I frequently advise extended family and friends of cancer patients to refrain from instructing the caregiver, and to instead LEARN from the caregiver. Don’t tell a caregiver what to do. HELP the caregiver do what he needs to do. If you want him to have time to go fishing or get to the gym, then offer to cook a meal for his family. Better yet, just cook the meal and bring it over, without pressuring the afflicted family to socialize if they do not wish to. If you are trying to support a caregiver, and if you remember nothing else I say here, remember this: try and understand that checking things off the “to-do” list can often be the most satisfying “self-care” that there is. Don’t guilt me for not eating vegetables or not going to the coffee shop when that same thirty minutes could be used to do a chore that’s been bugging me for weeks. Please trust the person actually living in the situation to know what would de-stress the person the most. Do not insert your assumptions. In fact, feel free to ask how you can encourage the caregiver in completing that stressful task. Don’t automatically resort to the incentives system you might use with a child (“hey, let’s get ice cream if you finish that paperwork by noon!”), but ask the caregiver in a meaningful way what support structure he or she needs in order to knock it out (and, hey, it might just be ice cream—the point is to not assume, and not to place yourself in a position of authority). If you are a caregiver, and if you remember nothing else I say here, remember this: encourage those in your life (who honestly want to help) to think of a concrete skill they have or task they could fit into their own busy schedules, and offer them the advice that it would be lovely if they could use that favor as testament to their sincere intent to contribute to the team. Demonstrate that this is the way you could be given the extra thirty minutes in your day for rejuvenation. Empower and enfranchise yourself, caregiver friends: there truly are gems among your networks who want to assist you, but they’ve been given bad information by multiple sources and industries, so they don’t know any better when they suggest that extra piece of broccoli. Nobody is an expert in your situation except you. Nobody is an expert in your loved one’s experience except your loved one. You two should be the instructors, and everyone else in your circles should be the instructed. If I had thought of that earlier, it may have saved me months of anguish and isolation when dealing with friends and extended family members, because I would have broken my assumption that they did not care to “get” it, and I would have filled my toolbox with helpful resources (in the form of helping hands) much more quickly than I did. Come to think of it, I also should have divorced myself long ago from the notion that someone must fully understand my situation before helping me, but that’s a story for another time.
  3. In my time as a caregiver for my parents, there is one theme that haunts every interaction and every decision: the status of the relationship between the folks having the conversation. (Well, duh, Danielle, because that theme determines most things in life, doesn’t it?) (Sure, Inner Monologue, you are correct, but I’m the one writing this, so shush!) Where was I? Oh, right. Relationships. I know there are stacks and stacks of scholarly works written on the complex navigation of relationships in a caregiving framework, and I am not qualified to weigh in on that ongoing discourse. I also don’t mean to make you, my friend, sift through a tome. I am, however, qualified to opine on my own experience, and to put these thoughts out into the universe with the sincere hope that they can somehow be helpful to someone else who comes along and is going through a similar hardship. So, here are my “Top Five Relationship Observations” involving caregivers, caregiving, and the related (pun intended!) situations we might find ourselves in. 1. “Let” your loved one be the person she/he is. I don’t like the word “let,” because adults should not hold reins on other adults, but for that exact reason, “let” fits here. In our rush to make sure our person is cared for and content, we can often get quite pushy. I am extremely guilty of this. I have to stop myself on a daily basis from “parenting” my parents. Granted, I am not currently a caregiver of people with mental incapacities, so my tasks are limited to physical and household assistance, meaning my “parenting” of my parents should be extremely limited. The primary goal in everything we do as caregivers should be the preservation of the inherent dignity of our person. I need that tattooed on the inside of my eyelids. We have the best of intentions: we always think we are working toward that goal when we schedule the doctor appointments and make the phone calls and order the lunch and pay the bills, but consider: are we putting things on our plates that our person would rather keep on their own plates? Are we infringing on their independence, vitality, or sense of identity? Am I assuming a responsibility unnecessarily and/or without being asked (or at least without noticing it isn't being taken care of)? Keep asking yourself this. I am a person who needs near-constant reminders. The most profound reminders have been the simple moments when my parents are still my parents: mom sitting up all night looking after me when I recently had food poisoning; dad meeting me in town when I had car trouble; mom helping me methodically check for ticks when I freaked out after an outdoor fall last summer; dad jumping on the phone to save me from a really mean customer service rep; mom singlehandedly planning a party for 300 people without breaking a sweat; both of them helping me when my cat had a serious injury. The list is miles long. My point is: I may be their caregiver, their homemaker, and their advocate. But they are my parents, and always will be. Acting otherwise, or pushing them away, is nothing less than insulting and indignant. (Even when caring for those with mental incapacities, the primary goal should be the same: the preservation of their inherent dignity). 2. Relatedly: “let” your person maintain their space. Their territory. As much as you can, avoid the natural tendency to become the “alpha” on their “turf.” Since my mom’s diagnosis, and the subsequent aggravation of my dad’s chronic health issues, I have been helping them maintain their home. It is firmly their home, indubitably. I am 32 years old and have an apartment with my husband, even though I may only see that apartment a couple times a month. I’m a big girl (in more ways than one!). But here I am, telling my folks where the laundry and dishes and trash bags “should” go in their own house. Ugh, somebody stop me! WHY do we do that? I know I live here a majority of the time, but it is NOT my “turf.” I am here to serve, not to have the circumstances serve ME. A dear friend once said to me that it’s hard to be told how to do a chore when the person telling you what to do is not physically able to do the chore. I agree; nobody likes to be micromanaged. But, frankly, we need to get over ourselves. Seriously. There is no world in which it is okay for me to be telling my mother where her plates should be stacked, even if I’m the one stacking them instead of her. I may spend most of my nights in my parents’ house, but I am not the boss. This is an ongoing internal struggle for me, trust me. In many many many ways, part of signing on to be a caregiver has got to be the assumption of humility in order to willingly help your person run his or her life on HIS OR HER terms. That should be our motto. We are helpers, we are advisers, we are advocates, we are cheerleaders, we are housekeepers, but we are NOT captains. We can be captains when the actual captain wants us to take the helm, but we can’t take the helm ourselves. That, my friends, is mutiny. 3. Your relationship with someone is NOT automatically the same as your loved one’s relationship with that person. When dealing with business on your loved one's behalf, you must act in accordance with your loved one's relationship preferences and NOT your own. This one is tricky; let me explain via example. a. My husband and my mom are both turf-sensitive people (see above). They both crave their “lone wolf” time, as I call it. Meanwhile, my dad and I are usually up for whatever adventure brings everyone together, even in the same room. This leads to drastically different preferences existing under one roof. Even though my caregiving responsibilities tend to mean I stay 80% of my time with my parents, that doesn’t mean I get to live my life out of their house. My husband and friends are always welcome, of course; in fact, my parents have extremely graciously made it clear that they are family and do not need “permission” to be around. However: that does not give me carte blanche to dictate who is in my parents’ territory at any given time. The burden is appropriately on me to limit interactions that are solely for my benefit, so that my parents' privacy and time are respected within their own walls without them needing to defend their own preferences. b. I may not want to have lunch dates with the same folks that my parents do, and vice versa, but because we are all in this together and are usually chauffeuring and assisting each other when running errands, we all go to the same lunch dates, and we enjoy them for the team. c. Over the course of the years of mom’s treatments (and dad’s too, for that matter), we have all forged various friendships with the members of the medical team. However, my friendships with my parents’ HCPs are not the same as my parents’ own friendships with their HCPs, and that is okay! You may be confused when your loved one has a different reaction to a certain person on the medical team than you do, and it may feel super important to analyze that different response because, after all, the stakes are high. These relationships are crucial to your person’s well-being, so there is immense pressure to get them “right.” But, consider: the members of the medical team are human, just like us. They have friends and acquaintances of different degrees, just like us. So long as your person is feeling heard, cared for, listened to, and taken seriously by his/her medical team, you shouldn’t feel obligated to also be any HCP's best friend! Conversely, if you feel you are the one who has bonded in a friendly way with your person’s medical team members, and your person’s treatment has not been affected by this, encourage your person to let go of any self-imposed pressure to feel the same way you do! 4. Your priorities are not your person’s priorities, and vice versa. Try your best to let this create compromise, not chaos. Hoo buddy, do I struggle with this. One example comes screaming to mind: I am not a neat person. I somewhat thrive in clutter and asymmetry. My mom, on the other hand, is the most meticulous decorator/organizer/arranger you have ever met. She’s amazing: if you need to streamline your space, she’s your gal. The storage room in her home looks like a department store warehouse. She is not a fuddy-duddy, and I am not a slob; we are both fun and funny people. We are not like the Odd Couple; rather, we are more like a before-and-after photo shoot of a Kon-Mari project. Unfortunately, this means that clutter is a source of stress for her; concurrently, organization projects are a source of stress for me. Why? Essentially, because we have totally different priorities with how to spend our time. She would much rather we tackle the backlog of homemaking tasks that have been put on the back-burner since her diagnosis; whereas I would rather focus on just about any other shorter-term task (a dear friend of mine will read this and suggest I mean laundry, and she isn’t wrong!). Essentially, mama and I have different aesthetics. The environment that calms her requires work that stresses me, and the work that invigorates her creates a hierarchy of tasks that I do not prefer. So, where do we go from here? I think the best we can do is tackle both to-do lists the same way we’d tackle any to-do list: gradually, in chunks. Baby steps. The key? Remembering that priorities matter because the PERSON matters. Their life, their terms. Your life, your terms. Even when they are at odds. If you can’t do “one or the other,” then you must do BOTH. Compromise. Not chaos. 5. Your experience with lung cancer is not the same as your person’s experience with lung cancer. I need this one taped to the bathroom mirror. They are intertwined; they are both important and valid; they are both necessary for purposes of personal growth and understanding and coping and advocacy. BUT: THEY ARE NOT THE SAME STORY, and should not be treated as such. You will not answer questions about lung cancer the same way that your person will answer questions about lung cancer, and vice versa. AND: one story is not wrong. They are BOTH TRUE, at every moment in time. The patient is not always right because he or she is the patient; the caregiver is not always right because he or she is the caregiver. The primacy of each party over his or her own life is the only primacy; everything else must be negotiated. Other than that primacy, there is no hierarchy, because everyone involved in the situation matters equally. I know that sounds odd, since we often feel that much of our caregiving experience involves sacrifice, but consider: you made the choice to assist your person. None of us chose lung cancer, but we chose our response to the situation. You chose to marry your spouse; you chose to come home when your parent was diagnosed; etc. In some way, shape, or form, you chose to join the team, whether before or after diagnosis, because you LOVE the person with the diagnosis. Acting on our love for another person is always a choice. While caregiving may be a dramatic version of that choice, it is still a manifestation of the same motivation: we love the person, so we act like it. Do not confuse the involuntary nature of the diagnosis with the voluntary nature of our response to the diagnosis. So: no one member of the relationship is more important than the other, even though we make decisions to sacrifice certain personal comforts or preferences when one member of the relationship is in greater need than the other. We are a team. Perhaps, at the end of the day, that’s all we need: to remember that we are on a team and that the cancer is the opponent. Our person is still someone we love and who loves us, so we can all take our power back by focusing on keeping our foundational relationships strong and not allowing the circumstances to confuse our motivations. Love got us into these relationships in the first place; love led to our decisions; and love can carry us through the dark moments.
  4. “You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!” If you have ever had a loved one with cancer, you’ve heard these offers. You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or— wait for it— when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient. There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme. And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being. If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once. But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool. At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?” And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and… She wasn’t! She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!” And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play. Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic. My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised. Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10. And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well. (If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask). The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script: Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.” Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?” BOOM. Done. Weapon deployed. (The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question). Anyway: my favorite part of using the pivot tool? You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all. And, at the end of the day, they might actually come through.
  5. Happy Monday, my friends! (Yeah, I know, it’s weird, I said “Happy” Monday…it’s not necessarily an oxymoron…hear me out!) I was always the kid who enjoyed the first day of school. How about you? The first day of vacation was pretty great, too! There is great power in “firsts.” We are almost supernaturally (or superstitiously!) drawn to the gravitas of beginnings. I remember very clearly making a circle of hands around my mother when she began her first treatment: my dad, some close friends, the nurses at the infusion center. Some of us prayed, some of us stood silent, some of us spoke whispered encouragement. I’ve heard similar memories from many patients and caregivers. No matter the words on our lips or in our minds, the sentiment is the same: there is great awe when we begin an experience, a journey, a season. I’ve always thought that part of the particular joy unique to a beginning is the ability to cast off any detritus from the previous experience, journey, or season. If there is baggage or fear or angst (or anything else unpleasant) that is keeping us from advancing into the new moment, the changing chapter gives us permission to leave behind whatever we do not need—whatever will not service us as we move forward. In that way, a beginning is also a chance to reset. A couple of careers ago, I was a professional actor. I still do the occasional play, when the schedule is calm, and I recently closed a show with my small community theatre group. During rehearsals, when there is a problem in a scene, or a snag in a set change, there is always one perfect solution: we reset. “Reset” is shoptalk for going back to zero: we literally re-set the scene (actors AND scenery), start the scene over, fix the issue, and then move on with renewed confidence. Like a bone that breaks and heals stronger at the point of fracture, a scene that has been reset usually turns out much better and smoother than it was before. So, I’ve been thinking lately about the significance of beginnings and resets. That brings me back to Mondays… Mondays are the calendar’s “firsts.” For many of us, it’s the first workday after a (too-short) break. For others, it’s the first schoolday of the week. For most of us, it’s the first day we can expect business-hours productivity after the hectic rush that is (usually) Friday afternoon. And, for all of us, it’s the loop-point of the week. It’s the marker of how we count weeks backward or forward, between commitments and appointments. So, it’s a built-in reset. It’s a page-turner. It’s a blank slate. It’s a chance to start over: whatever didn’t get finished on Friday didn’t destroy us, and whatever has to get finished this week hasn’t yet come due. For those reasons, I love Mondays. They’ve become my mini-reset. From Sunday night into Monday morning (I’m an incurable night owl; I’m too old now to deny it!), I find poignant peace in the tiny resets I can enact around the house. I help Monday arrive with its blank slate by creating all the blank slates I can think of: leveling off the laundry pile, clearing the kitchen counter, emptying the sink, running the dishwasher, taking out the trash, refilling toilet paper rolls, cleaning cat boxes, loading drink cans into the fridge… You get the picture. I cannot emphasize enough how precious that time has become to me in the years I’ve been helping my parents. I now look forward to Sunday evening, which, in itself, is life-changing. Instead of fearing Monday morning’s potential onslaught of “stuff” to deal with, I try and push last week’s dirt into the bin (or under the rug, ha!) and set the stage for the week on my own terms. I don’t know why waking up to a sink full of Friday’s dishes on Monday morning is so soul-crushing (knowing the "why" is above my pay-grade), but it IS. It just is. At some point along the way, I learned this: I learned that the sink full of dishes represented everything that did not get “checked off” last week, and that it now stood between me and everything I needed to accomplish THIS week. This was one of the most satisfying epiphanies I ever had, my friends, because the problem was so easy to fix. We can’t change our circumstances, and that alone is the source of most of our stress as caregivers. There is so much about our current situations that we would change if we had the chance, but since we can’t, we need to channel that desire for control into the mountains we CAN climb. And that laundry pile over there is just the right mountain.
  6. "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!
  7. Don't help me. I am a fiercely independant woman. i am a survivor. I am strong. I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins. I will get up everyday and tackle the world. I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help. I will carry all of the groceries into the house. I will change the water bottle on the water cooler. I will carry packages to Fex Ex. I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies. I will wash and dry laundry and I will never miss a single day of work. Please help me. I get up everyday in pain. It takes me longer these days to do my hair and put on my lipstick. I carry all the groceries into the house and I have to sit, catch my breath before I put them away. I wait until I am practically dying of thirst before I change the water bottle on the cooler. I carry the heavy packages into Fed Ex one 5 pound box at a time. I no longer walk the dogs- that's what the doggy door is for. I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results. I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on. I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after. I never miss a single day of work- but sometimes I am working from my bed. It's easier for me to help others than it is to help myself. While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me. To their credit how can they know I need help when I don't look or act "sick"? Ask me.
  8. 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!
  9. 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?
  10. "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?
  11. Good morning, So my father has stage IV nsclc and he has a tumor pressing on a nerve that has caused one vocal chord to paralyze. It makes drinking liquids really challenging. He easily chokes, and cannot speak. In the last two weeks, I'd say he has lost around 10 pounds. My dad is 6 foot 4 and he's down to around 100 pounds. He told me the other day all he had eaten was ice chips and apple sauce. I'm scared for him. I offer to make him smoothies and any food of his choice, I tell him I will pick up whatever he wants. He told me nothing sounds good and when it does, by the time he tries to eat, it makes him nauseated. He takes nausea medication and he understands he has to eat, but he isn't. The other day I walked into his house while he was asleep and I thought he had passed. I'm just so worried all the time that I can't sleep. What can I do to help him? He's so weak and not being able to drink liquids really takes a toll on his energy. I know he feels nauseous, but I want to shake him and tell him if he doesn't eat he won't be here anymore. I know he knows that but I'm scared and I know he is too. Any words of wisdom?
  12. Where Did Everyone Go? When people disappear (physically or emotionally) after a cancer diagnosis. I have experienced being someone with cancer and being someone who cared for someone with a terminal cancer diagnosis and neither side is a cakewalk. At LUNGevity HOPE Summit s, we talk a lot about survivorship and family relationships in the Caregivers session and I’ve decided that being the caregiver and managing those relationships can be stress-filled and sometimes heartbreaking. When my dad was diagnosed with terminal lung cancer, I had hoped that my large family would have rallied around him. Instead, some sent a get-well card now and then, made obligatory phone calls or sent along emails or news articles about whey grass juicers and Noni. What would have helped was some actual concern about how he was, how I was, and if we needed any help. Where were they for each chemotherapy treatment? Where were they when we were on the side of the road and dad was so sick that I had to run to the other side of the car to hold up his head? That happened more times than I could count. Where were they when his primary caregivers- my mom and myself- needed a break? A phone call allowing us to vent, a gift card for a massage, or meals, or an in person visit would have been compassionate and very welcomed. Being “too busy” to help out was not a valid excuse to use. If you want to help you find a way. I was a wife, a mom to a young son, a full time college student and worked full time along with managing my dad’s medical care daily. Because my mom was a limited English speaker, she needed me daily, physically and emotionally supporting them both. I didn’t sleep for about 11 months. Being too far away to help was not a valid excuse either. Phone calls, gift cards, a sympathetic note and words of support can always be sent via email. They weren’t. That was 14 years ago and I’ve gotten over that resentment- to some degree. I know after my experience who I can count on and who I can’t. Those that I can’t count on I’ve virtually cut out of my life. But that’s not always possible for some people to do. One of the caregivers talked about his frustration that siblings and family members were not helpful to his wife. They were nowhere to be found. Not only did they not help her thru her cancer experience, they continued to rely on her to care for her elderly parents and came to her for advice and financial issues- not once asking her about her condition. One patient talked about her recent 11-day stay in hospital. Her family, friends and neighbors had been great in asking her caregiver if they needed anything and how they could help her, but when she was finally released from the hospital she came home to rotten food in the fridge and a front lawn that had died from not being watered. Another caregiver talked about how his mother in law compared his wife’s terminal cancer to her chronic gastritis. She wasn’t any help to her or her family and never asked details about her cancer. One patient talked about how her husband had set up a chore list and meal train in hopes that her extended family and church family would pitch in. After the first two weeks, no one volunteered to help her family during their most difficult time. Have you experienced abandonment of family and friends after your cancer diagnosis? What did you do about it? Do you have advice for those who are going through this now?
  13. 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!
  14. 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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