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Losing A Puzzle Piece by Losing A Puzzle Piece - 2M ago

Caregiving has been on our minds lately. A recent article on caregiving and new efforts to provide respite, training, and other help to caregivers gives us hope. It provides examples of caregiving training methods, such as in-home coaches, and explains the need to support family caregivers. We related to this quote from a provider and caregiver: “‘I'm a physician, and when I take care of my mom, I have an endless loop in my head,’ of the to-do list.”

We recently attended a symposium focused on family-centered care through the end of life sponsored by Henry Ford Health System . We spoke at the conference about our experience as sibling caregivers, caring for our sister, Colleen, who died of cancer.

We took this opportunity to talk about young adult and sibling caregivers, in particular. We explained that we think siblings make amazing caregivers because siblings know each other the best, have a long history, and may feel most comfortable being their true self with each other. While young sibling caregivers face the same challenges as all caregivers - stress, difficulties with sleeping and focus, juggling demands - they also have unique challenges as young adult caregivers - isolation from peers, lack of workplace flexibility and financial stability, and sometimes child rearing. And in addition to all of that stress, they lack status or recognition as important members of the caregiving team, since they are somewhat unusual as caregivers and aren’t thought as as “typical” caregivers. Most people picture the parent or the spouse acting as the caregiver, and assume adult siblings have moved on once they have moved out of their nuclear family home, and maybe started their own families. There are a few things that we found rare and that contributed to our feelings of isolation and unimportance- lack of receiving direct information about what was happening with Colleen and having to rely on her or our parents to convey it, ineligibility for Family and Medical Leave Act, or FMLA, coverage, and lack of many stories and reports about sibling caregivers.

During the symposium, we met many people who validated our feelings and who were grateful to us for sharing our story. One nurse told us to remember that this is our story, our perspective, and no one can change that or take it from us- those words still stick with us. We spoke to people who told us they related to our story because when one of their siblings was ill, they also rushed to be by their side. They also felt marginalized in caregiving and in grief. We also heard from providers who agreed that siblings aren’t thought of as typical caregivers. In addition, we heard from other types of caregivers who echoed some of our feelings. For example, they spoke of the “blessing” of caregiving and that they wanted more sensitivity in discussions of options at the end of life. They wanted more training. We met a medical professional who didn’t want the hospice team to know her background and wanted to be trained in caregiving like any other member of the public. We loved this point that she made and agree that no one should make assumptions about family caregivers’ abilities and training needs.

We felt uplifted by stories of others’ caregiving experiences, especially their dedication to their loved ones, and validated by common sources of frustration. We never thought that we would have this “new hobby” of reading and researching about death and dying, or that we would feel so at home at a symposium on end-of-life care, but we are glad to find community in our new reality.

 

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Losing A Puzzle Piece by Losing A Puzzle Piece - 5M ago

The past few weeks - indeed every January and early February - are some of the most difficult for our family. Just as we begin to recover from the holidays, we are hit with Colleen’s birthday and a few weeks later, the anniversary of her death. Her “death-iversary” is a significant but somber day that we want to recognize, but one that seems weird to “celebrate.” We don’t always know how to react, what to share, what to do. This annual marker coincides with cold weather and post-new year's pledges. We find ourselves with pent-up energy, organizing drawers and closets in a bit of a manic state. We literally can’t help it. Shane opens drawers and when they look messy, immediately needs to fix them, can’t look away. Jessica ordered a label maker and puts labels on everything to feel like things are in order. We get upset when members of our households don’t understand the “new system.” Our home organization compulsion takes over briefly, but it helps us to cope with the recurring sadness this time of year.

We don’t have many friends that we can commiserate with about the death of a sibling at a young age. We feel as though we are in uncharted territory. Are we supposed to be like, “hey can I leave work early to go to the nearest Irish pub because my sister died on this day?” Or “I’m having trouble focusing on anything other than the anniversary of my sister’s death, so I’m just gonna stay in bed, cool?” Or “I’m sorry your remodel is delayed, but I don’t actually care today because my sister died three years ago.” Or “I’d love to join happy hour but I have a conference call with my sisters because this is our sister’s death-iversary... it’s not weird, you’re weird!”  Yet we did begrudgingly get out of bed, we did go to work, we just sort of carried on, but everything felt off, every memory sharper. Maybe we should have just been honest and said those things in our heads, even if it would mean making others uncomfortable.

Death-iversaries are a strange, emotional day. This year, some time has gone by, but the pain is still here, leaving us unsure how to acknowledge the day. We are impressed with family and friends that continue to remember the day that Colleen died and reach out to us. How do they remember? We have a hard enough time with birthdays. These amazing super humans not only remembered a momentous day in our lives and thought to reach out to us, they actually did it with calls, texts, emails, flowers. We are in awe of them and hope that they share their secrets soon (maybe they could take over our birthday calendars, because we’re sure that they’re better at that, too).

We’re far from perfect, but if we were to copy their model-like behavior, we would reach out to friends on their difficult anniversary dates. Or maybe just whenever they are on our minds and we are thinking of them - even if it’s not a death-iversary - that, too, is really nice. We’ve heard people say that celebrating a deceased loved one’s birthday is a more positive date to acknowledge, and some friends did reach out on Colleen’s birthday, a date they may have already been tracking, as opposed to the date of her death. From our perspective, either one is a day that our minds are especially on Colleen, so either date is a good time to hear from friends.

We tried to come up with some things to say next time we remember to be a good friend. We probably can’t avoid our sarcastic humor, so we might say things like:

  • Today must be hard for you, but we could get cheese and drinks to make it feel better?
  • I’m always available if you want to talk about today or even if you need to swear and yell.
  • I’m sorry this day is crappy for you, but do you want bacon?
  • I’m here for you if you want to drink a bottle of wine.
  • We probably would NOT say that heaven gained an angel or that Colleen is looking down on us because that always makes us think that we want her with us instead of up there or wonder what she’s been saying behind our backs, like what's she saying? what did you hear?
  • Or if we decide to take a more tactful route, we’d say something simple, like “thinking of you” or “sending hugs.”
  • Or we might say something simple with a little humor. On Colleen’s birthday, one friend said, “Happy birthday to one hell of a big sister.” It summed up our sister perfectly and made us smile.
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Losing A Puzzle Piece by Losing A Puzzle Piece - 6M ago

Another article about hospice, and again we find ourselves nodding along in agreement. This recent opinion piece in the New York Times rang true.

“At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.”
— Karen Brown

The author, Karen Brown, shares her family’s in-home hospice experience and their best efforts to care for her father who was dying of pancreatic cancer. It is a difficult read as she describes her poor father’s uncontrolled pain, the lack of support from hospice due to staffing shortages and, as a result, their stress as they fumbled through trying to alleviate his pain.

We have discussed the challenges of in-home hospice before, as well as the significant commitment placed on family members, in response to the same Politico article she references. We have also discussed the barriers to hospice enrollment that we experienced, and explained that we wanted the support from hospice and believe that we would have benefited from earlier enrollment, similar to many families who report dissatisfaction when they are referred to hospice too late. Although we are proud that our sister was able to die at home, at peace, and surrounded by family as she wished, we felt uneasy at times without any hospice visit during the last 72 hours of her life.

We relate to the feeling that hospice did not live up to all of its promises. In our past post, we noted that, according to the National Hospice and Palliative Care Organization, “at the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.” Looking back at this statement, it sets expectations that were not met in either of our experiences. Interestingly, the author reached out to this same trade organization in her piece, and their response was that “good hospice experiences ‘far outweigh’ the negative ones.” Wait, so, the author’s father’s pain crisis during his last hours would not outweigh someone’s nice comments about their primary hospice nurse? Is it acceptable to assign relative weight to a negative hospice experience, or to get it right on average? When we were having our babies, we didn’t hope that our OBs would “mostly” get it right, that the positive birth stories would outweigh the negative ones. Why should it be different for us and our loved ones at the other end of life?

Due to the negative stories that we have heard and read, we wonder if the majority positive responses to surveys about hospice are representative. Perhaps those who were happy with their hospice experience and want to share their gratitude are more likely to respond, while those with negative experiences are too sad to make complaints or answer surveys, just as Karen Brown felt. In any case, we share her perspective that, overall, family caregivers should be better prepared for reality when taking on in-home hospice care. Hospice may not be there, holding your hand and walking you through the end. Therefore, family caregivers should be better trained to handle death independently, and we believe that would lead to better experiences with loved ones in their final moments.

Ultimately, the negative experiences should be unacceptable, no matter the average feedback. We should place value on each individual achieving a “good death.”

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November is National Family Caregivers Month and we wanted to take time to recognize all family caregivers. Last year, we were celebrating them, too. 

Caregiver Action Network announced the theme “Caregiving around the clock” and has some good tips and resources. While the stress of caregiving can often be overwhelming, we wanted to learn about how other caregivers ask for more help or delegate.

We asked former and current caregivers if they asked for help and how they looked for resources. Of those that we asked, most reported that they asked for some kind of help or searched for resources online to mixed success. As Working Daughter discussed, not all of us are good at asking for help. 

“The most common obstacles to asking for what we need are thinking:
I don’t need help.
I should do this.
I don’t want to bother anyone.
Asking for help makes me look weak/lazy/incapable/selfish….
It won’t be done right.”
— Working Daughter

Looking back on our personal experience, it was an acute and rapidly changing process in caring for our sister. Her symptoms changed and increased dramatically and our stress levels were extremely high. It was physically and emotionally taxing and we often felt to be in a fog and we weren’t sure how to ask for help. It sometimes felt like another thing “To do”- reach out to others for assistance with meals, the children, coordinating rides while we were traveling to help our sister. We wanted people to read our mind but we know now that is not possible!

Our younger sister, Caitlin (#4 in the birth order) helped care for our sister with end stage cancer. She was 27 when our sister died. She stated, “ I tended to look for resources myself rather than asking for help, partly because as a young caregiver for a young person, not many people I knew had been in a similar situation.” Caitlin was among the estimated 19 million young adult caregivers as of 2015, an under-served population.  But if no one can relate to your experience, Caitlin has some great ideas about where to find resources, advice, and tips. “ I researched online, both through sources like the NIH for mainstream questions on how to manage a certain symptom, and through articles and blogs for things like easy, healthy, make-ahead recipes. One advantage to reading message boards and blog comments is finding tips from someone dealing with a similar illness that apply more specifically to your caregiving issue than a general article would. Also, YouTube videos were perfect for learning exercises, stretches, and massages to deal with aches and pains. Yelp and other review sites were essential for crowdsourcing local resources--massage therapist recommendations, or take-out dinner ideas when we were too overwhelmed to cook.”

Similarly, Feylyn Lewis, a doctoral researcher focusing on young caregivers, responded: “As a youth caregiver, I did ask and search for resources on young caregiving, hoping to find stories of young people who cared for their parents like me. To my dismay, I didn't find anything, nor were health professionals aware of resources either.” So, Feylyn took it upon herself to do searches online and ask her therapist at the time. She notes that there is an increasing presence of online support groups on social media for young caregivers and the isolation she felt has inspired her to help change this for young caregivers today.

Kristen Farrar is a caregiver for her child with Type One Diabetes. She said, “Having a child diagnosed with Type One Diabetes is similar to having your first child. You don't really know what you're doing at first and there is a lot of learning as you go.” She also explained that while the most overwhelming part was right after diagnosis, there are frequent times when she still feels overwhelmed. Kristen immediately reached out to a co-worker who also had a child with Type One Diabetes and became involved with the non-profit JDRF (Juvenile Diabetes Research Foundation).

Mary Lou who cares for her husband said that she tried searching online for meal ideas when she felt truly overwhelmed trying to figure out what to feed her husband between conflicting medical diets, little appetite, and doctor’s orders to use low sodium. She also asked the doctor for a referral to a nutritionist and is waiting to hear back. We can personally relate to the challenges of dietary restrictions and good nutrition while caregiving!

The Family Caregiver Alliance reminded us that there are many resources listed here on their website with statistics, reports, and tips about caregiving. They also have stories from caregivers about their personal experiences here.

A common theme that we heard in talking with other caregivers is to find others to commiserate with, to decompress, to confide in. Kristen said, “When I do, I vent to my husband or reach out to an amazing group of local women who have Type One children. We have a group text where we vent to each other. Each fall we do a charity walk for JDRF. We also try and get together for breakfast or dinner once a month. I'm on some Facebook pages that I read sometimes. It helps to read about others who are going through similar things as my family.” Caitlin said “I learned that it really helps to have others to rely on, and I was lucky to have our whole family involved in caregiving. For any caregivers working on their own, I think finding friends or community members to vent to and bounce questions/ideas off of is essential to staying sane and energized.”

Speaking of relating to others going through something similar….we just discovered this Podcast which features stories by family caregivers, The Happy Healthy Caregiver.  We also recently learned about a program through the University of Denver,  Center for Oncology Psychology Excellence (COPE), offering psychological and emotional support to cancer patients and their families.  COPE is the first psychology program of its kind in the nation to provide comprehensive training and partnership with cancer center. They stated, “Caregiving takes an emotional and physical toll on the body. It is a lot of work! Everyone is always saying you need to talk care of yourself before you take care of the person you are caring for, and that is really hard to hear, but it is so true! Taking self-care time to go for a walk, or do something focused on the caregiver is important to stay healthy.” They offer several great resources in the Denver area and online, many of which can be found on their website here.

Caregiving is hard. It is also very rewarding. As Caitlin said: 

“ I was also surprised to learn how difficult but still rewarding the experience can be. It was extremely hard for our sister to need us to take care of her, and it was exhausting for everyone, but I am so glad we we could be there for her.”
— Caitlin

There are many ways to learn and grow from caregiving experiences. Kristen says she would be more honest in order to decrease her stress, saying “I try to minimize or downplay with family and friends how hard it really can be to manage Type One. So if there is one thing I'd do differently it would be to be more open and honest about how stressed or frustrated I can feel at times.” Caitlin says “I would have taken more time off work--which is a luxurious choice most people don't have. It was hard to predict how our sister would do week to week, and while I missed the familiarity of my routine, I wish I hadn't put pressure on myself to keep up with work and  take on added stress.” Mary Lou says “Patience!  Slow down and do one thing at a time.  Lower my standards and don't worry about it. More Patience!” She adds: “Sometimes the most important thing I could do for Jim or my Mom, was to just hold them, and love them.” Feylyn says, “I try to stay mindful in the moment and not live so ‘future-focused’! This helps my worry immensely.” Looking back, we agree that we would be more honest about our overwhelming feelings, worry less about the insignificant things, and do our best to stay present.

We enjoyed gathering all of the insight that these caregivers, professionals, and experts have shared and hope it helps you too.

 

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We have talked about how the fall season triggers our grief before. We still consider it a wonderful season, but moments of sadness and anger slip in. We feel two-faced in our relationship with fall. It’s great and terrible. Nothing makes us happier than walking into Trader Joe's and finding that the pumpkin Danish Kringle has arrived! We love fall weather, fall colors, fall decorations. But we also get angry thinking about how our sister got so sick during this beautiful time.

And so now the old anger phase is flaring up again… knowing that our sister comes up in conversation less and less often, giving us fewer chances to talk about her and share memories… realizing that a new friend didn’t know us when our sister died when the awkward moment comes to talk about our family, not knowing how to answer a question about our siblings - do we say “I’m one of five girls”? Then do we explain? We worry no one wants to hear about such a “bummer” as someone once called it - our sister dying, a “bummer”.

The anger phase then leads to the “no one understands us” phase. If only they understood “The Compound” better they would get it. Should we show them all of the funny messages that we get from sisters on a daily basis so that they “get it”?

The anger phase comes again when watching fall TV and the return of old favorites that remind us of our sister and new shows that annoyed us - no, we haven’t gotten over it. And that leads us to revisit our swearing phase…..

We feel angry out of a sense of unfairness and a place of frustration. Like why did this have to happen? Why was our favorite season tainted by such heartache? And can’t we just talk to our sister already - it's been way too long, and only she has some of the answers. There are so many reminders of Colleen during the fall, too. College football, apple season, fall fashions, family birthdays and anniversaries. Some of the best parts of fall just aren’t the same without her.

Our grief is a cycle that comes and goes. There is no way of knowing when we will get through a phase or go back into one. In the meantime, maybe the pumpkin kringle will help.

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Losing A Puzzle Piece by Losing A Puzzle Piece - 7M ago

Photo credit: Melissa Kroll Photography  www.melissakrollphotography.com

We discovered this informative article by Joanne Kenen in Politico thanks to a tweet from Zen Hospice Project, an amazing hospice care provider in the San Francisco Bay Area. The article recognizes both the importance of home hospice and its challenges. The main point that the article addresses is the fact that dying, family structure, and illnesses have changed over the decades, making the traditional model of hospice out of sync. It is a worthwhile read.

The article explains that hospice pushes back against the over-medicalization of death and emphasizes comfort and family. But in today’s world of advanced medical treatment, as we’ve discussed before, it can be difficult to determine “the right time” to enter hospice.

“When patients elect hospice, they must usually give up on curing or containing their disease—a difficult decision to make in a system that dangles the promise of a medical fix just within reach. In practice, people often turn to hospice for only a handful of days, at the very end, after using up a lot of expensive high-tech care that may have drawn out death more than it extended life.”
— "Hospice in Crisis", Joanne Kenen

Adding to those issues, the care needed during home hospice can be a significant commitment for family members, complicated by the fact that families have changed, living further apart and less likely to be available for full-time caregiving. As we experienced and as the article says, the primary and time consuming care is given by the family. The article’s author writes:

“No matter how good and caring the hospice team—nurses, aides, social workers and, as desired, chaplains—much of the work falls to the family. And even when the family is willing and well-equipped, as my own family was as we took care of my father with hospice in the final months of his life, it’s not so easy to die at home.”

With an aging Baby Boomer population, this problem needs solutions now. Unfortunately, the solutions are complicated. The article discusses several ideas for changes in payment structures and policies but notes that, as for Washington, “a comprehensive national long-term care program is so challenging economically and politically that hardly anyone in the capital even bothers talking about it.” And while doctors and policy experts have some ideas, the article explains “they are still in the ‘floating ideas’ stage, not agenda items for Congress or the Medicare agency.” We feel optimistic to know that researchers like Joan Teno, whose research on hospice care we’ve reviewed before and who is quoted in the article, are working on these complicated and urgent issues. Unfortunately, clear solutions and ways to pay for those solutions are yet to be determined. While we wait, there are many families currently struggling with caregiving and suffering through less than optimal hospice experiences.

Perhaps what we are most excited about is the article’s discussion of “the relatively new specialty of palliative care.” Palliative care offers a similar philosophy as hospice but does not require patients to give up curative care, like chemotherapy. Some hospices even allow “concurrent care,” which allows patients to start hospice while keeping some regular or palliative care treatments. As we’ve said before, this is a much needed reform. We are also hopeful for reform based on the results of a study described in the article:

“Medicare’s Innovation Center is running a multi-year test of that approach for four diseases, including advanced cancer. The idea is that patients who get the symptom management and emotional supports of hospice and palliative care, and who come to better understand their own illness, make different choices.”

The idea there being that if patients understand their options and goals better, they can decide if the benefits of drastic treatments will outweigh the risks. This concept reminded us of Lucy Kalanithi’s inspiring Ted Talk. For more on making choices as a patient, by asking “what medical care will help you live the way you want to?”, watch Lucy’s talk here: https://www.ted.com/talks/lucy_kalanithi_what_makes_life_worth_living_in_the_face_of_death

We are hopeful that the ideas posed in this article, such as different payor systems, holistic approaches, technology and telemedicine, will provide better hospice outcomes, including for the caregivers and families involved. At least it seems that there is a movement, a cry for help to try to prevent the “tsunami” that Joan Teno warns is coming. She personally told us “stories move policy” and we wholeheartedly believe her.

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We recently read several interesting articles and research about caregiving. For any of our young adult readers who are actively involved in a caregiving role right now, we are cheering you on and personally understand how tough of a job you have. You are among an estimated 19 million young adult caregivers as of 2015 and have been identified as an under-served population, as we’ve reported before. Sometimes our stressful period of caregiving seems long ago, but we can be taken right back to that moment by reading about others’ experiences. And we are fortunate to even have the chance now to read and reflect, considering all of the young adults out there who are caring every day for a loved one - no time for reading, at least not anything longer than a pamphlet, no breaks, lots of To Do lists, sleepless nights. Hopefully with good friends, great snacks, plenty of cheese, and funny entertainment to accompany you. Click here if you need ideas for a good laugh. 

When reading this article, we almost didn't even flinch: “New research from Transamerica Institute finds caregivers risking their health and finances to care for loved ones” was the tag line. We've heard that before and we know it is true. But wait, this should be shocking, right? Why isn’t this in the headline news?

Perhaps our experience has made us numb to these reports or immune to shock from these statistics, because we have experienced many of the negative effects that are discussed - not being fully prepared for our duties, taking time away from work, putting our own health aside. We’ve read about similar numbers and problems before. But when we put real faces to these issues, and think of young adult siblings, in particular, going through these struggles, we want more solutions. At the very least we want to send them a care package with triple creme cheese or our favorite humidifiers via Amazon Prime, and stealthily drop a basket of beer and brownies on their door step.

Are we becoming blase to this problem? If we just keep talking about the issues, it will become better, right? Facts like only half of caregivers felt properly trained to administer certain medications or perform nursing duties keep happening. We must do this better.

The amazing Feylyn Lewis, PhD researcher on young adult caregivers and guest blogger,  shared this research with us several months ago and it spoke to us. It makes the point that research doesn’t usually share or seek out the negative consequences. Yes, so true! We can’t always paint a rosy picture of caregiving. There are harsh realities, stress, and much hardship involved. This research reports the perceptions of children and young adults on their experiences of having a parent with dementia. The truth came out, in sometimes surprising and sad ways, but we give them tremendous credit for sharing their reality. Only through honesty can we understand better what it is like to be a caregiver, and it may be therapeutic for others if they share feelings in common with the research subjects. They discuss “taboo subjects” or those that aren’t considered socially acceptable, such as “I don’t like my ill parent”, the sense of “waiting for death” over an unknown amount of time, and the distressing behaviors of dementia. The researchers were criticized for their focus on the negative but, unfortunately, the experiences of the subjects were not positive. The researchers explained: “their stories of the impact of dementia on their lives have been negative. We consider not acknowledging these experiences would be unethical.”

We are very curious to hear about your experiences. What is the hardest toll for you, your family, or your career that caregiving has caused you to pay? Do the reports and statistics paint an accurate picture - too optimistic? Too bleak?

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As we’ve posted about before, we have a special interest in books about dying, books about grievingand other such uplifting topics! Actually, we truly admire those that can write about such heavy topics in an honest and even humorous way. Here is a short review of what we’ve been reading lately. Post in the comments section or email us if you’ve read any great books this summer!

Option B: Facing Adversity, Building Resilience, and Finding Joy by Sheryl Sandberg and Adam Grant

Sheryl Sandberg shares her tragic story of losing her husband unexpectedly, leaving her a single parent to their two children. In addition to Sheryl’s experience, this book shares others’ stories of loss and suffering while also finding ways to impart wisdom and inspiration. It somehow digs out the uplifting aspects of grief, sharing how we may become better. We especially liked the discussion of “post traumatic growth” where you move forward in a positive way after loss.

“It is the irony of all ironies to experience tragedy and come out of it feeling more grateful. Since I lost Dave, I have at my fingertips this unbelievable reservoir of sadness….But along that sadness, I have a much deeper appreciation for what I used to take for granted: family, friends, and simply being alive.”

There is No Good Card For This: What to Say and Do When Life Is Scary, Awful, and Unfair to People You Love by Kelsey Crowe and Emily McDowell

It’s no secret that we are big fans of Emily McDowell, her hilarious cards and other products. We've mentioned this book before, but continue to recommend it to anyone that wants to help a friend in grief or a difficult situation. It may also make a good gift as everyone could benefit from learning to do better in those "don't know what to say" situations.

The authors provide real life scenarios with supportive things to say and do. Beyond practical advice, it is easy to read, funny, and full of of pretty graphics and “empathy tips”. One of our favorites:

“If fix it platitudes are so unhelpful, why are they so common? ….We (our culture) believe in getting things done rather than just letting things be, and we believe that “healing” means getting over rather than learning to live with loss. Our discomfort with suffering, and our rush to make it stop, can result in simpleminded fixes that suggest the problem of grief is an easy one to get over. This superficial effort just makes the suffering person feel even more broken (and pathetic) for suffering at all, and more detached from the person trying to help. For all these reasons, it’s best to avoid look-on-the-bright-side phrases and platitudes. Instead, find out how your friend is feeling about what’s going on. It’s simple: just listen.”

(Reminds us of our rants about the grief police.)

The Bright Hour: A Memoir of Living and Dying by Nina Riggs

The author tells her story of undergoing breast cancer treatment while losing her mother to cancer, and ultimately losing her own life to her cancer. Although devastatingly sad at times, it is also touching and hilarious, and covers the perspectives of patient, caregiver, and griever. Some of our favorite passages:

“I don’t belong in bed, but I don’t fit in out in the world either. I have a sense of myself as a broken camera – focusing on something out on the horizon (the future, cure, recurrence, death) and then, without warning, zooming in on a blade of grass (what is that weird taste in my mouth… did anyone remember to pack a snack for the kids). And then zooming out to the horizon again, and then back, and then again. I can’t figure out where I’m supposed to point this thing.”
“If there were an exam on the caregiver booklet that hospice gave us… I feel confident that Charlie and I would both ace it. It’s almost midnight. We are sitting at the kitchen counter of our parents’ house, obsessively going over the checklist that attempts to break it down by weeks, days, hours, moments. Preparing for the unpreparable… scanning for something that is not there.”

Just Let Me Lie Down: Necessary Terms for the Half-Insane Working Mom, by Kristin van Ogtrop

This book puts concepts that every working mom will recognize into vocabulary terms like “close encounters of the half-insane kind” when a mom gets mistaken for an extraterrestrial by normal humans, or “list paradox” when you make a to-do list to give you a sense of control but there are always more items than can be crossed off.  Even though it isn’t about grief or dying, the author keeps it real and keeps us laughing. Caregivers may find it comforting to read about another “half-insane” person or coping skills like “ignore the tray” – meaning rather than focus too much on the load you are carrying, watch where you're headed and everything will be just fine. This book normalizes the chaos of being a working mom. We enjoyed reading that we weren’t alone in feeling overwhelmed and imperfect sometimes- something that we all, including caregivers, need.

The Complete Book of Home Organization by Toni Hammersley

Since we are obsessed with home organization, this book can only serve to take our obsession to a new level of crazy. It offers tips room by room in short blurbs and easy to manage projects. Plus the pictures of beautifully organized houses are so pretty!

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Funeral planning, really? We know... We talk about the most uplifting topics, don’t we? But, as we've written about before, often it is hard to know what to say or do when your friend or family member is going through the difficult process of planning a funeral. What about when you're the one who needs to make all those stressful decisions?

Robyn Lewis summed it up perfectly- “It is often such a short space of time that you have to make many decisions, on everything from caskets and grave stones to hymns and flowers, especially when you don’t feel fully up to that level of responsibility.” She wrote an article for AK Lander to shed light on the stressful event of getting ready for a funeral. She asked for our opinions and added some of our thoughts, too. Reading her advice directed to the funeral plannees (can we coin that term?) may also give friends and family ideas for how they can provide support and help to those going through it. We can't expect them to do it all, even if they try to. 

We hope for comfort to funeral-plannees and super-friend-powers to those that aim to support them. Share how you have helped a friend during this difficult time in the comments section below. 

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Our sister died 2 years and 4 months ago. Sometimes this time that has passed seems incredibly slow with little progress. We still find ourselves grieving while on a run - our mind wanders to Colleen, we suddenly just really need to talk to her, the grief feels raw, and we are AGAIN crying while exercising. We’ve been known to cry on treadmills, we just didn’t think that crying while working out would still go on and on. We thought that phase was a thing of the past, but it still happens on occassion.

Photo Credit: https://whatsyourgrief.com/64-quotes-about-grief/

Yet, it can also feel that a lifetime has passed since Colleen was sick. It is sometimes hard to remember the time before that in detail, perhaps because so much stress and sadness intervened. Guest blogger Kate wrote about how the second year is really hard when you let your guard down and reality sets in. Unfortunately, she is very correct.

Recently, we went on a family vacation and it was wonderful to be together, but we couldn’t escape thinking about how Colleen was supposed to be there. Our family dynamics are a bit different now. She would have had strong opinions about the planned activities, lots to say about the families in matching T-shirts and babies dressed as princesses. We wonder if she would have ridden on the roller coasters even though she used to hate them, just to be brave for the children in the family. She would have kept us laughing and positive in the heat and crowds, and known exactly what to do about the family photos. We will never get used to her absence, but we didn’t expect to go on vacation and feel her loss so palpably.

There are days and moments that continue to be a struggle, especially when we want Colleen involved in all of the events of our lives. Birthdays are particularly tricky, maybe because they mark the passage of time. Whether it’s her birthday, our birthdays, her daughter’s birthday, our childrens’ birthdays, we just wish Colleen was here for them and other events. It feels strange that our lives continue, we get older, and we watch our children growing up when Colleen can't do any of that. Time marches on without her.

Perhaps time is irrelevant when talking about grief. Time is moving both slow and fast. Colleen’s death doesn’t feel that long ago, but it feels like decades since we have been able to be with her. Grief sneaks up on us, stops us in our tracks, and takes us right back in time. We didn't predict that we'd still feel this raw at this point. Somehow we keep going, even if we just need to cry while running and hyperventilate for a little while, then move on. Colleen was the strong one, and it’s hard to keep up the strength when she isn’t here. But we are becoming tougher, some days.

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