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DanielleP last won the day on July 15 2019

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  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. Thank YOU, my friend! UGH, I am so sorry for the texts and the comments from the aunt brigade. I totally get it, and I know everyone here totally totally understands. Don't you just love when folks' idea of help is help that they can give on their schedule and with their own priorities and preferences? I'm especially sorry that your aunt's particular sort of self-care is harmful, and that you have to witness that on top of everything else you are dealing with. Thank you for the sense of perspective: I have often come close to thinking that one advantage of not having much local family is the lack of interlopers, but I have yet to be wise enough to think that through. Thank you for sharing this nugget of truth with me! You are so right that managing help--wanted or unwanted--is a job unto itself. They don't call them "personal assistants" for nothing! Ha! And thank you, also, for the point about the to-do list. It is so profound what ticking through a list can do for your soul, isn't it? You raise such a phenomenal point about the list giving us some modicum of control over our days! I am SO thankful for you, as well. Thank you so much for your kind words, my friend. We are all a family and we are all in this together! 💚💚💚
  3. 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.
  4. 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.
  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. Beautifully said (as always!), my friend. Amen. Absolutely. Unfortunately, for my part, I never have the time or energy to lay out the proofs or disputes as thoroughly as I wish to or should. The pivot was, at the end of the day, an almost selfish solution, because it only leads to determining whether the person can be of use for my purposes or my mom's purposes, but it does not solve the root issue, which is absolutely the more important problem.
  7. “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.
  8. "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!
  9. Sometimes, HOPE is a kitten. Okay, okay, sure, I know, that sounds a little weird. And a little bit like a desperate attempt to pass a poetry exam. Let me explain… Hope is strong and confident. Hope can be fickle. Hope can be hard to corral, name, and predict. Hope can be ephemeral, and hope is also everlasting. Hope can be full of contradictions. Hope can take many forms, directions, shapes, and sizes. You’ve heard the expression “herding cats?” Hope is one thing that cannot be herded. It is inspired, it cannot be forced, and it is felt differently by different people. And hope, like most emotions we encounter after lung cancer has entered our lives, can have a complicated duality. An ambivalence. A way of being prickly when it doesn’t fit in our hearts, and a way of busting our hearts wide open. A way of showing up without telling us why it’s there, and staying with us, warm and fuzzy and comfortable and soft, exactly when we need it most. And that duality and ambivalence is essential to its nature. It isn’t going away. …Okay. You get it. Hope is like a kitten. I’ve gotten just about everything I can from that analogy! But, that’s not entirely what I mean. Let me explain (some more). Let me show my hand. By way of update: My mom is one of the people for whom I am a “caregiver.” She has been living with Stage IV NSCLC for a little over three years now. She was on a clinical trial of an immunotherapy medication for just over two years. She’s coming up on a year of having not been on any active treatment. She left the trial by choice, after experiencing some vague side effects that were determined to be likely due to the treatment (more on that another time). She is exhausted every moment of every day, to some extent. This woman who was always the most productive, vital, “type-A,” energetic soul I had ever met is now essentially housebound. Her profound lack of vim and vigor is the antithesis of her identity, and it has left her feeling robbed. Some days she feels like going out to lunch or running one errand; but there are usually weeks between these good days. (Side note: we have long made her medical team aware of her severe fatigue, and it was determined to likely be a result of her treatment. Because every patient and every situation is different, please always make your loved one’s medical team aware of every side effect that is experienced, especially when these interfere with your person’s quality of life!) So, with these long hard days of being stuck at home, not feeling like herself, one might imagine that she would feel glum, and downtrodden, and defeated. The answer is: of course she does! She’s human! (Trick question, with a trick answer…) See, the thing is, that isn’t ALL she feels. Nope. Lately, despite choosing to not be on treatment, and despite being overwhelmed in the way that only a very tired person who has gone through a lot can feel (I know you all understand), she has also felt…hopeful. Which reminds me: She woke up a couple days ago wanting kittens. You heard me. KITTENS. She wanted kittens in the house. Kittens. Baby cats. Catlings. Cat blossoms. Cat kids. Cat puppies. We currently have two grown cats. We worship the ground they walk on. We have had both cats and dogs in the past. Pet adoption is an important cause to us, and we tend to make a new addition to the family every 5-8 years. Following our normal timeline, we have talked about adopting kittens a few times since mom’s diagnosis in 2015. But, 10x/10, she has decided against the idea, once even as I was literally walking out the door to head to the shelter. She has been on a scale somewhere between hesitant and heartbroken each time, and each time because she did not feel she could handle the joy that a new pet brings. Let me repeat that: she felt she could not handle, or did not want to welcome, the particular joy that a new pet brings. The joy of a new pet is like Spring: It’s promise. It’s a belief in a tomorrow. It’s hope. Disclaimer, because I feel I have to make one: the decision to adopt a pet is a serious one, and should not be made lightly. We are very experienced cat owners, and we have gone through the cat-to-kitten introduction process many times over the years. In a caregiving situation, pet care should be particularly deliberately and honestly discussed, since caregivers may or may not have the ability or desire to assume those responsibilities. But, in our case, that situation could not be more perfect. I mostly live with my folks as part of my effort to help out, so I am around (and, let’s face it, more than willing) to contribute my part to Project KittenHope. At the end of the day, the kittens will become part of the whole family, owned and loved by all of us. When my mom declared that the haze had lifted and that she was ready to take this step, it was an automatic victory. It was a sign. It was hope. Thus: this week, into our lives walked a two-month old little girl cat and a two-month old little boy cat. And, yet, those of you who are here reading this understand, not needing any disclaimer. Because -----------------------------------------------------------------------------------------------*- …one of the kittens just typed that. As I was saying: because you understand this daily tug of war, seeking and understanding hope. So, the past few days, while welcoming our new additions, I have literally been herding cats…and herding hope. It appears where it will, often when least expected, and gives its gift of easy breathing and lifted hearts. Just like the kittens. This past weekend, LUNGevity hosted their National HOPE Summit in Washington, D.C.: an annual gathering of lung cancer survivors and co-survivors (caregivers!) that is regularly the largest such meeting in the country. It is part family reunion, part medical conference, and part survivorship bootcamp: fellowship with folks who understand what the lung cancer experience feels like; experts who inform the crowd on the most cutting edge treatment and diagnostic research; and tips and tricks for living one’s best life as a lung cancer survivor or caregiver. The event leaves everyone enlightened, invigorated, and aware of information and tactics that can introduce HOPE where there may have been none. Thanks to the LUNGevity Foundation, May is officially National Lung Cancer Hope Month. We HOPE (see what I did there?) that you will join us every day this month in ongoing conversations about all the HOPE that is out there in the lung cancer field: new diagnostic tests, new medications, new genetic sequencing, new surgeries, new forms of radiotherapy, new places to turn for assistance, new clinical trials, new emphases on patient navigation, and more. (See LUNGevity.org for more of this. Seriously, it seems there is breaking news every day!) We also HOPE that you will share with us those moments, long and brief and in-between, that give YOU hope, inspiration, and a reminder of why we wake up every day to advocate for patients: for new treatments, for access to help, for better resources, for more information, and—as LUNGevity says--for a world where nobody dies of lung cancer.
  10. Thank you so much, Tom! Means quite a lot coming from you. Thank you for all of your wisdom that you share here and elsewhere with the community!
  11. Part 3: Resources One word that is perhaps overused in the professional cancer services field is a word that is also overused in many other humanitarian fields: “resource.” Sometimes, it seems like a catch-all. What do you guys offer? We offer resources! Hm. What does “resource” mean to you? To me, it means something that is drawn from by someone in need of help. Something that is stocked and available to give concrete assistance in a particular situation, and is either infinite in itself, or can be replenished. A replenishable replenisher, if you will! When I see fellow caregivers ask other fellow caregivers “what can I do? How can I help you?,” the answer is always the same. It’s an answer we see every time we ask the #LCCaregiver Twitter chat community the same question: what can your CG family do for you? What is the best way we can be a resource for each other? What can we do for you that is not already being done for you? The answer is so profoundly simple: be there. Listen. Lend a supportive ear. Be a safe space for venting. Sympathize. As much as we all sincerely want to “do more” or “be more” for those who are in our same situation, it seems as though the most important release we can expect from within the “pack” is the one thing we can’t really get from anyone outside the “pack:” understanding. As with any other experience in life, the bond formed when we realize that someone sincerely feels the same way we are feeling in response to the same stimulus is both profound and instant. Only our fellow CGs “get” how we have time to do the shopping and the laundry, but do not have the time to answer the texts or get to the post office (or vice versa), without requiring an accounting of our hours. I swear, my dear non-CG friends and family who may see this, that I know you do not require timesheets from me, but sometimes it feels as if you do. Meanwhile, people who have undertaken a similar journey are not surprised at all when I explain that the day somehow did not actually contain 24 hours as promised on the packaging. As useful (and awesome!) as it would be to live in a place where we could all physically pitch in for our fellow carers (a caregiving co-op of trusted co-carers? Say that five times fast…), it is MORE than enough to lend a shoulder and an “I hear you.” Your support is enough. YOU are enough. Something you have to say could make all the difference in the world for a new or overwhelmed caregiver. So: the number one resource that caregivers have are fellow caregivers. Find them. Reach out. You’re in the right place to start, here on the LCSC: use the Caregivers message board. Use the “LUNGevity Caregivers” Facebook group here: http://www.facebook.com/groups/LungCancerCaregivers/. Come find a buddy in the LifeLine program here: http://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline. Come to our monthly #LCCaregiver Twitter chats! If you have been doing this a while, find someone who is new to the situation. Someone who needs to be told “it’s okay. I promise. You will find the new normal. It will become routine. I’m here.”
  12. Steff, Oh, my friend! Thank you for your kind words. Thank you so much for commenting and venting! I feel you. I love how you say "melt." That's such a perfect word. And I feel the exact same way when people tell me to take care of myself. I know they mean well, and I know it's healthy, but...you know. You get it! Please reach out to me ANY time. The beauty of us understanding what each other are going through is that we can BE there for each other! Sending you SO much love, girlfriend!!!
  13. Thank-you so much, my friend! That means the world, coming from you. I wouldn't exactly say you patients have it "easy!" It's so strange how it's all a dance of different responsibilities and different sacrifices. Thank-you so much for your kind words. Right back atcha. DP
  14. Part 2: Resets The beauty of the Sunday afternoon chores, in addition to creating a zen moment before winding up for the assaults of phone calls and emails and appointments that can come between 9am Monday and 5pm Friday, is that they serve as a sort of reset. A blessed, welcome reset. Whatever was undone from the week before is still undone (LOL!), but nobody died because of it. The cans of cat food that didn’t get moved from the kitchen counter to the bin in the pantry? Not lethal, it turns out. I didn’t have it in me, Wednesday evening, to move those cans to the bin. I just didn’t. One or two or three of us in this house had had a doctor visit, or there was a pile of paperwork with a deadline, and it was all we could do to three-musketeer (three-stooge?) through that particular endeavor before we collapsed. But, now, it’s Sunday afternoon. Tomorrow is a new start, with a new list of responsibilities and schedules, sure, but for now, I can luxuriate in moving those cans of cat food from this counter to that bin. That’s all that’s required of me in this moment. It’s delicious. It’s delicious, and it’s necessary. I am angry at cancer for so many things, but oddly thankful for this lesson that the small chore in the right time can be a way to wipe a slate clean before moving forward. A way to acknowledge what was done, forgive what wasn’t, laugh about it, and start from zero once again. And, if I try really hard, maybe I’ll even commit to that actual hour of work in the morning, instead of getting it swept off the board. Maybe I’ll be that organized. Maybe I’ll structure the day around what needs to get done, and finish the necessities with verve and focus, and by virtue of that organization I might have several hours to give to one of those back-burner projects. And, if I don’t, that’s okay, too. I will have replaced the light bulbs, and wound the clock, and moved the cat food from the counter to the bin. That’s a lot, and that’s enough.
  15. Part 1: Routines Are you a person who likes routines? Or are you a person who likes to play things by ear, deciding in the moment? See: I had always thought I was the latter. I am not the most organized person in the world (sorry, family!), except in those moments when I absolutely have to be. So, it’s always seemed easier to me to make plans on the fly, at the last practicable moment. Or, so I thought. Funny thing about lung cancer: it’s a “canceller.” A what? A canceller. Picture the big, important businessperson of cliché-fame telling her assistant to cancel all her appointments. All her phone calls. Something else has come up. Something bigger. Something that has to be handled NOW. Well, that’s a canceller. Lung cancer is one of them. It’s the feeling you get when you realize you don’t have your wallet. It’s the huge spider that’s headed for your foot that makes you not care that you’re dropping your pile of clean laundry. It’s the face you make when the grocery store is out of the one item you really needed for dinner (seriously. The ONE thing. The thing that made you get up and go to the store. Really?!). Only, worse. Much worse. I’m not saying anything new to you. If you’re here, it’s because lung cancer has reared its ugly head in your life already. I am so sorry for that. I do not mean to dwell in that place. Rather, I want to talk about the thing that happens after the “canceller” throws its wrench in your plans. It turns out, much to my amusement and chagrin, that we…well, we try and find routine. If I’ve said one thing to new caregivers more often than any other thing, it’s: “don’t worry: it’s terrifying now, but eventually it will become routine. No less terrifying, but it will become routine. You’ll find it.” Here’s another phrase I am certain you have heard: “the new normal.” “Our new normal.” “This is our new normal,” “we’re finding our new normal,” etc. See: even in the face of the canceller, we scramble to assemble pieces of routine to create a new façade of having planned at least SOME of what is going on. We crave a normal. And, what else is “normal” if not going about some form of daily grind, fairly certain about at least a majority of the events to happen in any given day? Trust me, I’m the kind of person who never would have thought she found comfort in routine. But, I do. And chances are, you do, too. The very nature of the “canceller” is that it is the event in your day that you never expected, never had written in your planner, and dealing with it requires a tightrope walk between the planned (appointments) and the unplanned (results). Like so many other perspectives and perceptions, becoming a caregiver cruelly removes this inherent ability we all have: to subconsciously rely on routines for safety, while all the while cavalierly denying the need for routine, thinking of it instead as a boring or stuffy way to live. Ohhh how foolish I was! I used to brag about not being a creature of routine: I craved spontaneity and I sought ways to keep the days interesting. I thought that the difference between getting coffee at the same shop in the morning on some days and in the afternoons on other days would save me from ennui. I really thought I had this all figured out. But then, when mom was diagnosed and we were figuring out our new roles and jobs and needs and priorities, I was left aghast at how I was suddenly and sharply yearning to wake up at the same time the next morning and get coffee at the same place and take the same grueling hours to get through my same inbox. I didn’t want to deal with oncology appointments and scan schedules and treatment research and insurance verifications. Who does? That grass on the other side was urgently bright green, and all I wanted was the down-to-the-minute synchronism of the day before the diagnosis. Who wouldn’t? Our routines are also where we as caregivers tend to notice our sacrifices in the clearest terms. “Okay—I can run these errands today and still get in about three hours of my own paperwork.” “Okay, well, that took longer than expected, and I didn’t have a good dinner planned, and that’s on me, my bad, so, well, I guess I can scrunch up that three hours into one hour and just do my best to get it all done.” “Well, okay. I really didn’t know the kitchen would take that long to clean. I’ll try to get my stuff done tomorrow.” And so on and so forth. It occurs to me to assure you that I am not complaining: I would never. Caregiving is a choice I made, and one I feel blessed to be able to make. I am just trying to give voice to what I have learned is a common but unspoken experience in the journey. The lonely hours I used to begrudge giving to email and other necessary evils are now hours of peace and quiet that I miss. How often, as a caregiver, have you been told to “take care of yourself first?” It’s probably a piece of advice you’ve heard many times, all from well-meaning folks: other experienced caregivers, or perhaps loved ones who are worried about you. I maintain that taking care of yourself is often antithetical to the idea of caregiving, but putting that aside for the moment, notice: so much of what we really want for self-care is actually just a return to routine. Time to get to a salon. Time to take on an organization project at home. Time to bake. Time to knit. Time to do any number of mundane things that got left on the back burner when lung cancer rang the doorbell (out of nowhere. Rude). For me, Sunday afternoons are the times when I am most aware of this juxtaposition. On Sunday afternoons (or, on holiday weekends like last week, Monday afternoons!), I try and take the time to do the small things that sit undone in the busy-ness of business hours: change dead lightbulbs, refill the coffee pod carousel, wind the analog clock. Odds and ends. It is meditative work. It’s repetitive. It’s calming. It needs doing, but I find such joy in doing it. It’s…routine. Routine is a teddy bear that gets taken from us, and we spend much of the process of coping with cancer and caregiving trying to pick the perfect replacement teddy bear. It has to be one we can afford, and it has to be one we can fit in our arms with everything else we must carry.
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