Talking Sibling Caregivers

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.

IMG_0512.JPG

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.

 

Recognizing Family Caregivers: Handling Stress and Finding Resources

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!

ToDo.jpeg

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.

 

Statistics and the Harsh Realities of Caregiving

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. 

DearLifeImage.jpg

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?

Not All of Us Are Bad At Death

Recently we have seen some of our favorite topics in prominent journalism and television series: caregiving daughtersend of life care, and death and dying. We took notice and have been thinking about them ever since. The articles have us contemplating how we can make dying better and how caregiving daughters can thrive as part of the American health care force. We have previously talked about why our employers should pay attention to us, strong and successful women who also make kick ass caregivers. But when our loved ones are dying, will medical professionals be able to help us attain a “good death”? These issues pull at our heart strings, because we want caregivers to be supported, especially when faced with orchestrating end of life care.

 Photo credit: Melissa Kroll Photography   www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography  www.melissakrollphotography.com

The recent NY Times article, "We're Bad At Death. Can We Talk?" by Dhruv Khullar suggests that we continue to struggle with the right time to enter into end of life care mode. We agree, as we’ve previously written, it can be full of worry to find the right time to enroll in hospice, not to mention figuring out how to talk about it. It is a bleak reality that there are patients dying who have frequent medical visits, procedures, hospital stays, instead of making plans to live the end of their life as they wish and at their home. Although it was challenging, and we felt unsupported at times, we are proud that our recent experience with the death of our sister would be considered a "good death". She was at home as she wanted, peaceful, and with immediate family surrounding her.

The article states that research shows “physicians die in hospitals at the same rate as everyone else”, but our sister was not going to be one of those statistics. She felt strongly about never being in a hospital again and we were not going to let her down. Just as the article suggests, there is still work to be done - some medical professionals don’t have confidence in how to talk about death, access to palliative and hospice care in certain areas of the country is a problem, overly-aggressive or unnecessary treatments for those dying still happen. And maybe the stress and uncertainty that comes with independently caring for someone dying at home isn’t for everyone. Khullar states that there are differing opinions of what a “good death” means. Indeed, and adhering to the patient’s and family’s wishes is key.

Oprah just shared a spectacular interview with B.J. Miller, a palliative care and hospice physician, where they discuss death and dying. They examine deep subjects such as preparing to die well and spiritual aspects of death, with tough questions from Oprah such as: “What has being around the dying taught you about living?” B.J. Miller’s calm and positive attitude toward death is worth your time. We liked much of what he said, but this particularly resonated with us: “Dying isn’t so pretty….when someone can sit with you and be with you in that state- is an amazing thing to offer someone. To be present. It can heal many wounds.”

So not all are bad at death. Our sister and B.J. Miller can teach us some great lessons - to be realistic, to not be afraid, and to exist in the now.

How to Be a Helpful Friend to Caregivers and Grievers

Unfortunately, we have become all too familiar with the struggles of caregiving and grieving, and have been contacted several times for ideas about how to help a family member, friend, or colleague struggling with a variety of difficult situations - a new caregiving role, a terminal diagnosis, a death of a loved one. It feels like these tragedies are happening all too often, even to young adults. We don’t consider ourselves the experts, but we try our best to provide useful tips and ideas. 

First, know that simple actions of support and concern are often enough.  We have previously talked about comforting products and how to help a friend in grief  as well as related topics in other specific posts noted below. Here, we came up with additional ideas - that anyone can do - tailored to certain situations. We reflected upon our own experience, but also received great tips from family, friends, and experts - all listed below!

For those in a new caregiving role:

  • Consider how you might ease your friend's burden in other areas of life besides their new caregiving role: Do they have a pet you can walk or check in on? Can you drive their kids to after-school activities? As our Mom suggested, “Offer to do a specific errand- like pick up groceries, pick up kids, make an airport run-sent by text. No calls!"
  • An easy way is to help with meals. Perhaps a group can organize meals on a schedule or invite others to sign up via mealtrain. Or it can be as simple as baking some cookies and dropping them on the porch.
  • But it may be that you are not local and want to do something from afar. Simple ideas are a funny card from our favorite Emily McDowell, or one of her bravery pins, a small care package of their favorite things like coffee, chocolate, lotion.
  •  We heard from Feylyn Lewis, M.A., NCC; University of Birmingham, who is an expert in young adult caregiving and recalls the most important things that help her in caring for her mother:

  1. Grace. Someone giving me grace to be imperfect and to simply 'not be myself'.
  2. Realness. I appreciate when a friend is authentic, as that allows me to feel free to be authentic too. It's so freeing to live from a place of honesty.
  3. A perfectly timed encouraging word or Bible verse. Spoken with kind heart, the gentlest words can truly help transform my perspective.
  • Another nice idea is to send a journal for your friend to bring to appointments and to write down questions.
  • Stress relief gifts include: soothing lotion, aromatherapy, adult coloring books.
  • A new company, Wellthy, will provide you with a care coordinator. 
  • This post has ideas for helping with communication and organization, but here are a few highlights: Help to keep family and friends updated with a website such as Caring Bridge.  Or setup a shared calendar for appointments, visitors, and other important obligations such as a Google calendar.

For other grief related situations:

  • Dr. Gloria Horsley, a grief expert, bereaved parent and founder of Open to Hope along with her daughter Dr. Heidi Horsley, shares her wisdom and recommends her website www.opentohope.com. She states, "Lean on our hope until you find your own." Helpful things that were provided to Gloria after the death of her son were: 
  1. Sitting with us and reading a book while we ate our first meal
  2. Getting a dog
  3. Having my boss at the nursing school assign a friend to stay with me the first week back to work.
  • Do something in honor of the deceased. Run a race for them or donate to a cause that they supported.
  • Write down a funny memory of the deceased and send it to their family members.
  • April Koontz, a sibling griever, caregiver, and founder of Daughters Unite, remembers a kind gesture from a friend. "The day following my brother’s sudden death – I looked out my front door and saw my neighbor mowing my lawn. I broke down in tears. She knew how important it was for me to have my lawn looking good and took it upon herself to mow it without asking."
  • Drop off brownies and a six pack of beer. It doesn’t have to be a full course meal, just a way to show that you are thinking of the person. (Thanks, Mom)
  • Friend and guest blogger, Lindsay, opens up about what helped her after the loss of her sister: "With respect to people who were primarily my friends (i.e. not necessarily family friends or people who were also close to my parents or sister), asking how I was doing in particular and not just how things were going in general. I imagine this would be especially true in a caregiving situation, as it made me feel supported at a time when I sometimes felt like it was my job to support other people or to hold it together." She adds, "Picking up when I didn't want to talk about it and distracting me by talking about other things and treating me like a normal person." 

For various difficult times that are probably pertinent to both cases involving the stress of caregiving or grief:

  • One thing April would recommend is, "Respite. Just figure out when you can give an hour or more and call and make arrangements to do it. Don’t ask ‘what can I do?' or say, ‘call me if you need anything’."
  • If they have a sense of humor, send funny cards on a regular basis. Send cartoons.
  • Don’t unicorns make everyone feel better? There’s this gift idea.
  • They may not be sleeping well, so how about caffeine and a fun, new mug
  • If you are curious about how to talk to children about illness and grief, this post may be helpful  And this book which was recommended in that post, How to Help Children Through a Parent’s Serious Illness .
  • People don’t seem to make “mix tapes” anymore, but you could send them a playlist of soothing music or music that may help them cry and grieve. You could also send an iTunes gift card for them to download their own choice of entertainment.
  • Feylyn Lewis again shares sage advice for one simple thing that a friend can do: "Understand when asking how I'm doing, I may immediately respond 'Okay, just fine.' because I don't want to burden my friends with my heavy emotions. Don't be afraid to ask again, and/or help create a space where it's easier to share, i.e., going for a walk, sitting quietly, etc."
  • Our Resources page has some other ideas too.

What other useful or creative tips do you have? Let us know what you did that was helpful to a friend.

March 30, 2017 Caregiving and Grief News Roundup

In this Caregiving and Grief News Roundup, we share several touching personal stories we came across in the news recently that resonated with us, as well as a few positive stories from around the country.

First, this beautiful story in the Washington Post emphasizes the importance of simply being there with a loved one at the end of their life. We found ourselves nodding and tearing up reading, as Jennifer Palmieri writes: “Of all the moments in my life I had with my big sister, the ones with the most value, the most intimacy, the most joy, were the ones I spent simply holding her hand in her hospice room. No distractions, no expectations or pressures, a time to simply be present, to simply be sisters.”

This real and emotional story describes a cancer patient being disappointed in how she was treated as a person in the hospital. Sue Robbins makes what seems like a reasonable request: “Please treat me as well as you are treating my tumour."

Check out this short video from PBS News Hour's "Brief But Spectacular" series with one our favorites, Kelly Corrigan, best selling author and podcast host. She briefly talks of her own experience with breast cancer and learning that her dad was diagnosed with terminal cancer. We relate to her stating that she put her energy into writing.

Of course, one may expect to become a caregiver later in life, perhaps for elderly parents, but when caregiving comes in your 30s and 40s, it is unexpected and stressful. This NY Times article describes experiences from different “off time” caregivers who face the difficulties of juggling careers, child-rearing, and missing out on fun activities.

Daughters Unite shares the story of a “Millennial Caregiver”, Feylyn Lewis. They are a unique population in need of more awareness and support as their caregiving responsibilities affect their ability to attend college, become employed, and engage in peer relationships.

In a few other uplifting news stories from around the country:

  • In Ohio last week, the state legislature passed the Ohio Caregiving Act, which ensures hospital patients' designated family caregivers are offered instruction in providing needed care at home.
  • From Indianapolis comes a new app, Patch Health, designed to help multiple caregivers for a loved one coordinate care. Brilliant!
  • Earlier this month in Seattle, radio station KEXP teamed up with the Seattle Cancer Care Alliance Proton Therapy Center to present “Music Heals,” a day long program of stories and music with the power to lift our spirits and heal our souls in the face of cancer. We love this concept! We've featured music on our Resources page and stories from guests about the power of music to heal and a survivor’s playlist.

Maggie Gets It: A Place Like Home

We are beyond excited to introduce our little sister, Kerry, as a guest blogger. As the youngest of five girls, Kerry has always shined and held her unique place in our big family; here, she yet again shows off her knowledge and insight as an architect. Our sister Colleen, in particular, would be proud to read Kerry's discussion of how the "built environment" can promote healing and Colleen would appreciate the unique form of care offered to cancer patients by Maggie's Centres in the UK. 

Everyone knows Colleen was a champion of everyone around her, but she was especially protective and supportive of her sisters. When I showed more artistic than athletic promise as a young person, Colleen insisted that I take an art class outside of our basic grade school art program. I don’t remember how old I was or if she was in medical school or her residency at the time, but I do remember her driving me to the weekly class, rushing me from basketball practice at least a couple of times. Colleen barely played me when she coached my 7th grade basketball team, so her believing in my artistic abilities was HUGE. I knew she wouldn’t push me to do something just to be nice. Plus, taking an art class where I knew no one probably prepared me to go to a college where I knew no one, and major in architecture, of which I knew nothing.

So, it is with my background in architecture that I would like to relate to caring for Colleen at the end of her life. The built environment (a term Colleen loved to poke fun at-“What does that even mean Kerry??”) has the potential to either worsen discomfort or improve healing during times of crisis and its aftermath. Over the years we saw a spectrum of treatment facilities, in-patient and outpatient care rooms, hospital lobbies, and cafeterias. After Colleen died our house was transformed by what seemed to be a million bouquets, orchids and ferns, a rose bush and a new tree in the backyard: a physical manifestation of Colleen's reach. The places where we dwell define our dealings with death, almost as much as our intangible memories and feelings.

A recent issue of The Architectural Review is dedicated to death, chronicling crematoriums, chapels, hospitals, memorials, and care centers that deal with end of life experiences. One such exemplar of a place of healing is the Maggie’s Centres. I’ve admired the architecture of these centers for a while, but it wasn’t until caring for Colleen in her last few months that I truly longed for something similar in the US, much less Michigan.

Who is Maggie?

Maggie Keswick Jencks was a writer, landscape designer, cancer patient, and wife of architectural theorist Charles Jencks. In the last few months of her life, she and her husband and cancer nurse outlined their ideas for a cancer care center that could contrast the banal and sterile atmosphere of the hospital where she was being treated. In the Metropolis Magazine article "Living with Cancer" Samuel Medina describes Maggie's feelings: “In such neglected, thoughtless spaces, she wrote, patients like herself were left to 'wilt' under the desiccating glare of fluorescent lights.” 

What is a Maggie’s Centre?

Maggie’s Centres offer free emotional, practical, and social support for cancer patients, as well as their friends and family. The first one opened in Edinburgh, followed by 19 more in various cities across the UK, one in Hong Kong, and a few more planned for the UK and other international cities. Each center is designed by a different architect, resulting in a collection of wildly distinct buildings, yet all adhere to the same prompt. They are located near, but remain separate from, institutional hospitals and treatment centers, and do not replace conventional cancer care.

Simply put by Dezeen's Amy Frearson: “it offers a non-clinical environment where anyone affected by cancer can stop by for advice or support.”

Maggie's Centre, London, UK

Richard Rogers'  design for the West London location has won multiple design awards, most notably the 2009 RIBA Stirling Prize. Rogers Stirk Harbour + Partners in turn donated their winnings back to the cancer care center.

Photo by José Miguel Hernández Hernández

  Maggie's Centre West London - Weekly Schedule   

Maggie's Centre West London - Weekly Schedule  

Maggie’s Centres are intentionally informal, residential in scale, and multi-purposed. If you want community, you can be comforted to find a group gardening class, other patients to chat with, yoga, and therapy sessions. If you would like a private place to think, you can find a library, a quiet garden, a cozy reading nook, or a massage. Worried about financials, sleeping, or your nutrition? You can even talk to experts in these fields at Maggie’s Centres. When we were scrambling to find a massage therapist with cancer patient experience, we could have used the resources of Maggie’s Centres. When we simply wanted to get out of the house without dealing with sad or confused looks, we definitely could have used a Maggie’s. 

The most recently completed Maggie’s Centre in Manchester is summed up by its architects, Foster + Partners, this way: “The design of the Manchester centre aims to establish a domestic atmosphere in a garden setting and, appropriately, is first glimpsed at the end of a tree-lined street, a short walk from The Christie Hospital and its leading oncology unit.”

 
 

Architects Have Feelings Too

  • Sir Norman Foster, designer of the Manchester location has said: "I have first-hand experience of the distress of a cancer diagnosis and understand how important Maggie's Centres are as a retreat offering information, sanctuary and support."
  • Frank Gehry, designer of the Dundee and Hong Kong locations, described his pain in designing the first center outside the UK: "I was going through the loss of a daughter while I was designing the center," the architect said. "I think you sort of suck it up and hope to make something that is soothing and respectful and hopeful. There's always hope, it's not a dead end." The Hong Kong center features a garden designed by Maggie's daughter, Lily Jencks. 
  • Maggie’s husband, Charles Jencks, has also emphasized the importance of caregivers: In Steve Rose's Guardian article, Maggie's Centres: can architecture cure cancer?, Jencks states “in a way, the carers are more important than the patients. Because if the carers are cared for, they turn up, they enjoy it and you create this virtuous circle, this mood in a Maggie's Centre which is quite amazing. So architecture helps do that because it looks after the carers." 

Most people have some connection to cancer, including architects. By involving star architects, like Frank Gehry, celebrities like Benedict Cumberbatch, and powerhouses like Camilla the Duchess of Cornwall, Maggie’s Centres have been able to gain support, offer free services, and continue opening new centers in cities across the UK and internationally.

Yet the success of Maggie’s Centres can also be attributed to its sensible (small scale), sensitive (support not limited to a scheduled appointment slot), and inclusive (accessible for everyone affected by cancer) concept that fills a gap in healthcare today. Some hospitals have even “solicited the foundation’s services” that Maggie’s Centres offer, such is the case with the opening of the Glasgow location, near Gartnavel General Hospital. Of the foundation’s past year of visitors, “99% found the support [Maggie’s Centres] offer helpful.” The West London location alone gets almost 100 visitors a day.

What makes this foundation even more unusual is its commitment to designers who help realize these goals. Charles Jencks claims the architecture is “risk taking” because it engages with a very real existential crisis. “To live is a great risk. Cancer patients go through this cycle of desperate fear, of deciding to die,” he says. “But those like Maggie risked to live. That’s the architecture in a way and what architects need to get into their building. And I think they have.” Jencks admits to using the famous architects as a way to gain funding, notice, and continued support. In return, the architects jump at the opportunity to be among the list of top designers, to contribute to this innovation in cancer care, and to grapple with an unusual design challenge. Richard Rogers describes the centres as "in a way monumental, and precious, like a church that isn’t a church, a gallery that is not in a museum, or a house that is not a home." Maggie's Centres are fairly unprecedented in building type, and wrapped up in the program requirements are complicated emotions of fear, mortality, healing, and hope. With these challenges, architects and the Maggie's Centre charity have set up a high risk, high reward cancer care system.   

Consider Design, Consider Space as a Factor in Caregiving

+ What is wrong with the U.S.?

You might be thinking well, lots of things. You might be thinking, this could never happen here! But if they can do it, maybe we can push ourselves to do something similar, at any scale. Take this funny comment about Americans for example, and note Maggie's original goal:

‘To cut a long story short, Maggie and I decided to fight,’ Jencks says. ‘Empowering the patient became our strapline, although Maggie hated it because it’s too American. From her experience came the idea of setting up one little room. It gave her a focus she never had in her life.’

+ Creating a Sense of Home

Each Maggie’s Centre includes a kitchen, and a central dining table, which are often the heart of a home. Creating the feeling of home can be simple, and an important way of healing or providing comfort.

 Colleen at Home 

Colleen at Home 

Yet Maggie’s Centres don’t give off a New Age vibe or make reference to Freud’s consulting couch; they are informal, like a home away from home. Jencks coined the term ‘kitchenism’ to describe the communal ambience of the centres, which allows patients and carers to come and go when they wish and simply gather around the kitchen table for a cup of tea in a proper mug, not a hospital-issued plastic cup.
— Cate St Hill, "Piles of Hope- 20 Years of Maggie's Centres"

+ Views of Nature, Natural Light, Fresh Air

It was pretty chilly when Colleen was very sick, and we all remember how crazy we probably looked, propping up chairs by our front door and opening it to get some fresh air and sun. My favorite part of the various Maggie’s Centres is the range of landscape designs and the attention that goes into shaping garden views, providing different ways to experience the outdoors, and considering the effects of natural light. 

  Peter Zumthor's Serpentine Pavilion (Not a Maggie's Centre, however rightly located in UK). Photo by  Georgi Georgi  via Flickr. 

Peter Zumthor's Serpentine Pavilion (Not a Maggie's Centre, however rightly located in UK). Photo by Georgi Georgi via Flickr. 

Peter Zumthor, a favorite architect of mine, has said before “When I like it, you will like it too, because I’m not so special.” It is obvious from each of the 20 Maggie’s Centres that every designer has a distinct style, but design that understands our core vulnerabilities and how to make us feel invited, relaxed, and supported in times of need, is design that can be liked by all. 

Maggie gets it. She understood that while hospitals are vital in treating cancer, a supplemental support system rooted in a physical place is necessary. She understood that caregivers and families need support too. She understood that light and atmosphere are important aspects in healing. Colleen would have loved what Maggie Keswick Jencks has started in the UK with Maggie's Centres, and I only hope they keep growing, right into the US. 


Resources:

"Living with Cancer" by my former classmate, Samuel Medina, for Metropolis Magazine

"Maggie’s Manchester by Foster + Partners: ‘What matters is not to lose that joy of living in the fear of dying" by Gillian Darley, for The Architectural Review  

"Pile of Hope- 20 Years of Maggie's Centres" by Cate St Hill

"A Home from Home: Maggies West London Revisited" by Amanda Birch in The Architect's Journal

A tour of Maggie's Glasgow Location:

Feb. 16, 2017 Caregiving and Grief News Roundup

February is National Cancer Prevention Month and we have come across many touching stories. These brothers are raising awareness by sharing their story - TODAY weekend anchor Craig Melvin’s brother faces stage 4 colon cancer at the young-age of 39. Unfortunately, doctors report a growing trend of early onset cases, so it is important to get screenings. 

 Photo credit Keep Calm-o-matic http://www.keepcalm-o-matic.co.uk/

Photo credit Keep Calm-o-matic http://www.keepcalm-o-matic.co.uk/

We are well aware that we mention our favorite card maker, Emily McDowell, often, but we just love everything she does and says. Her book is now out, so go order it! She was featured on NPR  and shares her wisdom on providing sympathy. She says to not worry so much about saying the right thing, because that is impossible, but instead focus on just being there and listening. Instead of allowing someone to be angry or sad…. "there is this internal pressure to come with a silver lining… [but] that feels like your pain, which is very real, is being minimized.” We completely agree.

This powerful story from the Elephant Journal reminds us that honesty is important when someone is dying. 

Zach Sobiech who died of osteosarcoma is missed by his loving family and his sister, Grace, shares her college essay, inspired by him. She worries about remembering him, but now realizes that she carries a bit of him with her. Very touching essay.

 http://www.childrenscancer.org/main/latest/he_will_never_let_me_forget/

http://www.childrenscancer.org/main/latest/he_will_never_let_me_forget/

Here are a few other links from around the web that we wanted to share.

Do you have an inspirational or helpful news story to share? We would love to hear from you!

After Caregiving: Getting Back on Your Feet

This week, we are pleased to present a guest post from the Association for Long Term Care Planning (ALTCP). The ALTCP is a long term care insurance agency that provides free long term care information, resources, and planning expert advice for seniors and adults. The burden of the caregiver does not stop once the actual care ceases. For many, the after caregiving stage presents a new breed of struggles to face. Recognizing this difficulty, ALTCP.org shares a post that discusses these issues in hopes of assisting those who face the question: “What do I do now?”

Nothing can be more devastating than losing a loved one, whether it be your sibling, parent, child, or partner.  And no one will be ready for that to happen.

For many, the long stretch of battling a disease might seem like preparation for what is about to come. But when it actually does, we feel both prepared and unprepared for it. And when it actually does happen, you find ourselves wishing for more time to do certain things with them and we end up listing the things we had forgotten to say. There is never going to be enough time to let the thought of a loved one dying sink into our system. And that is just the way life works.

Caregiving is not an easy task, but it can be a rewarding one. At present, there are 43.5 million people providing unpaid caregiver in the United States. Out of this number, 24% are millennials age between 18 and 34. It is such a common instinct that once anyone close with family finds out that a loved one is ill and that he or she needs help, the immediate reaction would be to jump on a plane or get in the car and just be there.   

The actual care is tough, and it will test the bonds of family. So many caregivers go through what many call Caregiver Stress. We put ourselves out there emotionally, financially, physically, mentally. The responsibilities of balancing a job, your wellbeing, and the care that your family needs can even seem downright impossible at times. And for many, this new life lasts for years.

In spite of all the late nights and stress, we will never trade it for anything because they need it. And we need it, too. But what happens when it all ends? How do we and our families get back on our feet after that comes to an end?

It’s all about pacing

Grieving is a natural and personal process. There is no time limit, and there is no guidebook on how to go about grieving. While many choose to surround themselves with groups of people and the city buzz, others cope better by taking a step back to rediscover themselves. Bear in mind that you are allowed to grieve in your own way. Your grief is entirely your own, and you should not have to feel guilty for it.

Some people try to jump back into their old routines because it brings back a sense of ‘old’ normal. It might feel off at first as you have had a different normal in the last years. But this way, it can help you get back on your feet.

Some choose to travel. Nothing enlightens the spirit more than new experiences, sights, and different cultures. They get in touch with their selves through these new experiences. After all, we sometimes need to take a step back from everything else and just enjoy the world for all that it can offer. 

Family above all

Once we lose a family member, it truly feels like a puzzle piece has been taken away from a complete set. So we ought to turn to those who are in the same situation and who completely understand: our families. 

Talking about your grief with each other immensely helps. Not many people see how cathartic it is to express their emotions, no matter how difficult it may seem. It can become a form of release, and it can even help a struggling family member come to terms with the new reality.

Reconnect with yourself. Even when you feel like you don’t want to.

Often, when we become caregivers, we end up sacrificing so much. Old activities take the back seat, and some individuals end up putting work on hold. Understandably, we needed to dedicate so much of our time to our loved ones. And for years, that became the top priority.

As we get back to how it was before, try resuming hobbies that you enjoy. Join or re-join a group or a class that allows you to relearn a hobby. Or you can even try starting a new hobby!

A great one to start (or restart) is exercising. Being physically active has proven to improve people’s mood and lessen depression. People who exercise are naturally more positive, so who wouldn’t want that natural high?

Find a way to help other people in the same situation.

One of the rewarding things in life is having the ability to help other people. The situation may be difficult and challenging and the last thing we probably want at the moment may be to relive the whole event (albeit as an outsider this time). But if you feel like you have wisdom to share or an extra pair of hands to offer, then do so.

Volunteer and help others who are in the same situation you were before. Point them in the right direction when it comes to tools and resources or encourage the importance of long term care planning in families. It does not have to be something big, just make the extra effort. Sometimes, even listening to them and spending the afternoon is enough.

After all, we had other family members and loved ones with us, but some might not be as lucky as we were. 

Nov. 10, 2016 Caregiving and Grief News Roundup

November is National Family Caregivers Month! There is even an official proclamation from President Obama. We are reminded of our prior post, A Caregivers "To Don't" List, and hope you are finding time to relax. Let us know how you are celebrating or if you are thinking of a special caregiver this month. We are always celebrating siblings! Other great organizations are also recognizing this special month, such as WorkingDaughter.com and National Alliance for Caregiving.

This new business “Wellthy” is brilliant and just received $2 million in seed funding. Families are actually assigned a coordinator who helps with various overwhelming tasks such as dealing with insurance claims, refilling prescriptions, and arranging specialist appointments. We love what Lindsay Jurist-Rosner, founder of Wellthy, says at the end of this article: “Starting a business is hard work,” she says. “But after the experience my family and I have had, starting a company is nothing.”

This article offers an interesting perspective and plenty of facts and links to information about caregiving costs and need for more support.

Read about the honest conversation featured on a Cosmopolitan.com podcast that includes one of our favorite authors, Nora McInerny Pumort (“It’s Ok to Laugh (Crying Is Cool Too)”), and the CEO of a helpful website featuring stories of loss, Rebecca Soffer (ModernLoss.com), who discuss loss and how to help yourself or a friend.

As we’ve already said, we love Emily McDowell’s greeting cards and appreciate her humor and sincerity. And it is perfect that she has written a book - "There is No Good Card for This: What to Say and Do When Life Is Scary, Awful, and Unfair to People You Love" - with empathy expert, Dr. Krowe. We can’t wait for this book to be available in January, but for now we wanted you to get as excited as we are about it.

The Guardian shares insights from readers about what death and grief means to them.

This article describes a recent stand-up set by comedian Patton Oswalt, who opened up about his grief over the sudden death of his wife with humor and honesty.

Our E-interview via WorkingDaughter.com

We were honored to be interviewed by Working Daughter and wanted to share it with you. It was published on their website in April 2016. Working Daughter, which is listed on our Resources page, is a fabulous website that provides resources and support for women who are balancing their career and caregiving. We highly recommend checking it out. Below is the interview:

 What one thing do you wish you had more time for? Relaxation. This was especially true when we were in the role of caregiving before our oldest sister passed away. But the need for more relaxation continues in grief, and is always needed for working moms. It isn’t simply finding time or feeling like we deserve to relax. Whenever we do find time, those moments to ourselves are often filled with sadness. We found it impossible to shut off our brains, to prevent our minds from perseverating on the “to do’s” or contemplating a future without our oldest sister. Instead of relaxing, we were grieving in anticipation of, and later in the wake of, our sister’s death.

With what do you wish you had more help? As caregivers, we wished for more professional coordination of care and guidance during transitions between phases of care or medical treatment and palliative care. We felt to be on our own during what we call the “grey zone”, when our sister wasn’t receiving active treatment but prior to being enrolled in hospice. It was unclear who was in charge of managing symptoms or determining next steps. We just wanted to focus on spending quality time together but, instead, we were often distracted by questioning whether she should continue certain treatments or medications, wondering about the best nutrition plan, and facing decisions about when to start hospice without clear guidelines from medical professionals.

Where do you find support? From our husbands, parents, sisters, and brother-­in-­law. We are a tight family unit and there are a lot of us, so it’s always good to be together, fun and entertaining, and we are constantly in touch by phone, text, and email. We also have extended family and best friends that have gotten us through a difficult year. Right now, we are finding support from hearing others’ stories about caregiving and grieving.

If you knew then, what you know now… …we would stop trying to hold it all together in front of our sister. Sometimes the closest we felt was when we cried together. …we would take more people up on offers to help but with very clear jobs or requests. ...we would ask for help and support louder and more often from medical professionals and hospice workers. ...we wouldn’t stress about or avoid discussing the big questions or future planning that had to get done. ...we would realize that it’s ok to not feel like the best mother right now or to not feel like going to every social engagement.

What would you like to see employers do more of to help caregivers? First, we believe that the federal Family Medical Leave Act (FMLA) should be expanded to sibling caregivers. Currently, the FMLA defines family member as a parent, spouse, son or daughter, and excludes siblings unless they have a de facto parent­-child relationship. Second, employers could offer understanding and more flexibility where possible. Young caregivers can be at a disadvantage, in particular, because they may still be in school or just starting out in their careers and not have much clout with which to demand flexible schedules or deadlines. Increased awareness about the challenges of caregiving and the variety of the types and ages of caregivers would go a long way towards accommodating their different needs.

What would you like to see medical professionals do more of to support caregivers? There seems to be increasing research and focus on caregiver stress, which is helpful, but not always a corresponding increase in training for family caregivers. We would like to see medical professionals ask “who are your people?”, keeping in mind it may not be the traditional caregivers like parents or children, and then assess their capabilities and tailor training and support accordingly. By asking this, they would focus on the WHO, communicate with those caregiver(s), address their needs, and hopefully make the caregiver stress less of a burden.

Who are your heroines? Our sister, Colleen, was our role model, because she was extremely hard working, made the most of her time, and managed to be good at almost everything. We still don’t know how she accomplished all that she did in her 39 years on this earth. In addition, our Mom is not only a Super Mom, she is also a Super Caregiver. She managed to watch her child decline and somehow kept it together while providing the best kind of love and support that only a mom can provide. There are countless other female figures we love and admire, but we’d love to grab a drink with Michelle Obama, Oprah, and Ellen Degeneres.

What do you admire in/about other caregivers? We admire caregivers that are well rested, cheery, appear showered, and manage to be somewhat fashionable. We could not figure out how to sleep and we would love to have the power to follow the “take care of yourself” advice. Our sleep deprivation led us to only want to wear leggings and start thinking that face wipes were considered a shower. All joking aside, we admire caregivers’ strength to keep going each and every day.

What is your motto? #stoptalkingaboutyoursickcat To explain, we are just beginning to learn about Twitter, but find it hilarious to speak in hashtags. We refer to this one often and it has become a motto. People would compare things like their sick cat to our experience and it was sometimes funny, but also maddening. We learned to turn these comments into humor and it definitely helped us in our “anger phase” of grief.

Caregiving: a blessing or a burden? Blessing. We barely survived but would not have traded the experience for anything. It has made us more empathetic and, hopefully, better sisters and friends. We can relate more deeply to others’ grief or difficult times and want to help them through it.

Communication and Organization Tips for Caregivers

Caregiving can be tiring and stressful. Young adult caregivers like us may be simultaneously trying to juggle the normal chaos of feeding/bathing/dressing/driving/disciplining their children, staying up to date on school activities, cleaning and maintaining their houses,  showing up and participating in their careers, and keeping up their marriages….oh, while also caring for someone who is injured or seriously ill. We were thrown into this world and with it came many challenges as we helped our sister who was dying of cancer.

We have already talked about the “to don’ts”, our recommended entertainment to help you laugh, products that may give you comfort or save you time, and thoughts on home organization as a coping mechanism. This week, we wanted to share a few things that helped us in our communication and organization of our caregiving efforts. How did we keep it all straight? We didn’t….but we sure tried.

  • Email or an easy form to communicate updates.  We found email to be a quick and easy way to send updates to each other (our sisters, the in-and-out-of-town caregivers). We shared updates about how our sister was physically doing, her newest symptoms, thoughts on what we needed to do differently, lists of items to purchase, and recipe ideas as well as venting and expressing our sadness, stress, and even anger. If you have a few people engaged in the caregiving process, it may be helpful to setup an email list or a way to communicate. We know some people utilize the website “CaringBridge” to keep family members informed. We chose to delegate the task to one of us to write email updates to friends and family.
  • Delegate. If you are the primary caregiver, but you need more low sodium chicken broth, or another humidifier, or a new bean bag chair (or that’s just us?), put someone else in charge of getting those things. Your family members can do things from afar. Amazon Prime - hello! We were constantly ordering things when we couldn’t be at home and loved feeling useful. Or, send someone else to the grocery store for you if you can trust them to follow a specific list. And as noted above, we occasionally delegated the job of “family communicator” or “medical team liaison.”
  • Create a shared calendar. We used “Google calendar” to keep track of our travel plans and to know that we had sisters arriving to help out on the home front. It’s also nice to see the calendar and know that someone was on the way to provide relief to the main caregivers at home. You may also have many friends wanting to visit and you can keep track of visitors here so as to not overschedule yourselves. Apparently, as this article outlines, there are lots of shared calendar apps in addition to Google calendar.
  • Share a document with questions for the medical or hospice teams. We used “Google docs” to share a document with a long list of questions in preparation for meeting with Colleen’s hospice team and it was nice to all contribute, write down what we were worried about, and see what others wanted to know. Having your thoughts and questions organized going into a meeting or appointment can help make you feel more in control and get more out of it.
  • Keep a journal of medications and symptoms. We made a chart and wrote down the time and dose of medications, symptoms, and other tasks so that everyone present could see what any other caretaker had done. Here are several types of charts that are free to print. This made it easier to keep track of everything when others were out of the room or our minds were occupied by other thoughts and emotions. It also helped when speaking to medical and hospice workers that we were able to reference times, doses, and patterns.
  • Set aside day time for important conversations. We were often tempted to discuss plans, hold family meetings, and have other necessary conversations in the evenings after dinner, but we learned that we were usually the most tired and run down from the day at that time. Plus it could be difficult to fall asleep after having these discussions right before bedtime. We tried to implement a rule that there was “no talking” (i.e., no serious talks) after 9 PM, and to save the planning and decision-making for daylight hours whenever possible.

Some of these tips may seem like, “duh, of course,” but you’d be surprised at how easily you become overwhelmed and can’t think or make any more decisions. Hopefully these are simple tasks that will help you in your caregiving journey.

Presidential Candidates on Caregiving

Obviously, there are a lot of serious issues facing our nation this election season. As we head into the heat of the Presidential race, we thought it would interesting to look at what the candidates are saying about one issue that is important to us - family caregiving. Turns out, it’s a not a hot topic for them.

You may be thinking- there are more pressing issues such as national security at the forefront of the discussions, so why do we care about this issue? As we’ve stated before, family caregiving may affect all of us at some point, making it a topic of importance for employers and politicians. According to the AARP Executive Summary of Caregiving, there are about 43.5 million unpaid caregivers in America and the majority (85%) provide care to a family member. They report emotional and financial strain. Among the employed caregivers (not self-employed), only about half report flexible work hours or paid sick days to help with their caregiving responsibilities. Many caregivers are overwhelmed and some have to leave work in order to care for a family member. The burden of caregiving can be tremendous to the person involved, but can eventually affect the workforce. Politicians can help by adding more resources and tax breaks to help them in their time of crisis. We wanted to learn more about where the candidates stand, so we did some digging and found a few articles to help us.

Although there is a growing need, with an increasing gap in the ratio of potential family caregivers for our aging population, this Washington Post article from a year ago found that most presidential candidates in the primary season were silent on the topic, with the exception of Hillary Clinton who has called for more support for family caregivers.

More recently, in the first few minutes of the debate between Hillary Clinton and Donald Trump on September 26, as the debate transcript shows, Clinton stated: "I want us to do more to support people who are struggling to balance family and work. I’ve heard from so many of you about the difficult choices you face and the stresses that you’re under. So let’s have paid family leave, earned sick days. Let’s be sure we have affordable child care and debt-free college.” While not exactly focused on family caregivers, at least she recognizes the struggle. Trump mentioned child care once but did not address the topic.

On September 13, the National Academies of Sciences, Engineering and Medicine released a report, Families Caring for an Aging America, that outlines challenges family caregivers currently face and makes recommendations for is needed in the future. As summarized by Next Avenue in this Forbes article, the report calls on the next president’s administration to “take steps to address the health, economic and social issues facing family caregivers of older Americans.” It also urges the federal government to create a National Family Caregiver Strategy recognizing the vital role family caregivers play in the health of older Americans.

As another Forbes article explains, Hillary Clinton has more detailed plans that would affect family caregivers: “Clinton said she would work to increase Social Security benefits for people who take time off from paying jobs for family caregiving duties. She also advocates a new tax break for individuals caring for aging parents or grandparents (though not spouses). In addition, Clinton favors greatly increasing the amount the federal government spends on its Lifespan Respite Care program, which provides money to states to give family caregivers a temporary break.” These plans are indeed listed at the bottom of this page from her campaign website. 

There has been recent focus and discussion of paid family leave policies by both candidates, which is related but not quite the same as addressing the needs of family caregivers. Clinton’s plan is to provide up to 12 weeks of paid family and medical leave to care for a new child or a seriously ill family member, with at least two-thirds of current wages funded by tax reforms. The definition of “family member” is not clear, but is unlikely to include siblings, similar to existing law under the Family Medical Leave Act (FMLA). Trump’s proposal is even more restrictive with just six weeks of paid leave for mothers only and newborn child care only using existing unemployment insurance programs when employers do not provide the benefit. This article fact checks candidate’s statements on these topics, and summarizes their family leave proposals in the following chart.

 http://cdn.factcheck.org/UploadedFiles/2016/09/family_leave_policies_chart1.png

http://cdn.factcheck.org/UploadedFiles/2016/09/family_leave_policies_chart1.png

Although it has not been a focus this election season so far, we are hopeful that the current conversation about paid family leave policies can be expanded to consider the broader needs of family caregivers, including paid leave and flexible work arrangements as well as other types of support and training. We also believe that the definition of family caregiver should be expanded to include siblings and others who provide unpaid care to family and friends. Otherwise, unfortunately, even if improved policies for paid leave or other support are implemented for the "typical caregiver", there are many of us that will be left in the same position and excluded from coverage under FMLA or similar laws. Two more presidential debates are coming up on October 9 and October 19, so we'll be watching to see if the candidates share any more details about their plans to support family caregivers.

Sept. 15, 2016 Caregiving and Grief News Roundup

As you may know by now, we periodically post “News Roundups”, which you can revisit here and here, where we share interesting and relevant caregiving or grief stories that we have come across in the news. Here is our latest installment of stories that are worth a read.

As this article explains, caregiving is often unpaid and, therefore, uncounted by our economic measurement sticks, like GDP (Gross Domestic Product).

We have previously written about workplace issues and obtaining leave from work for caregiving, but we only dared to imagine flexible work schedules and job protection for unpaid leave. The consulting company Deloitte just made waves in the “paid leave arms race” for offering employees 16 weeks of paid leave for caregiving

The New York Times recently covered caregiver burnout

We love this positive story. A Nebraska woman made her health come first by committing to exercise after recovering from 3 family deaths. 

This NPR story shares the life and work of a poet who recently died of cancer at the young age of 25. 

This Wall Street Journal article talks about sibling loss in a moving story of a brother losing his dear sister in the 9/11 attacks. He suppressed his grief for years, but later learns that he wants to know more about that day, how she died, and face his grief. 

Here’s a short but lovely story about a rabbi being with his friend who was dying. The rabbi says, “A soul getting ready to pass is open and vulnerable and dripping with brave wisdom.”

 

Home Organization as a Caregiver Coping Mechanism

We have become obsessed with home organization! Nothing gives us more joy than reading an article about reconfiguring a tiny closet, reorganizing a drawer of miscellaneous kitchen tools, or perusing the aisles of the Container Store. We aren't quite at the level of practicing "the Japanese art of decluttering and organizing" described in The Life-Changing Magic of Tidying Up by Marie Kondo - she does encourage you to treat your socks with respect and greet your house, afterall, and we’re just not there yet - but we do like many of her ideas. She makes a convincing case that you should discard what you don't use, keeping only items that spark joy, and explains how your living space affects your body and mind.

We continue to be inspired by our sister Colleen’s level of organization in her closets, kitchen, and filing system. Even her basement storage bins were labeled and organized. We don’t know how she did it all, but we made note of her organizing skills and tried to replicate them in our own homes. When we were staying with her while she was sick, we noticed that she had many designated bins for items - every item seemed to have a home - and we wanted the same in our lives.

A place for all things, so the mess is nonexistent.

The desire for order in our homes was heightened when Colleen was dying. Our lives were filled with chaos as we traveled every few weeks to be with her or attempted to keep tabs on what was going on from afar. We lessened our stress by organizing every closet in our houses. It became our therapy. We personally know that caregivers have many things to keep track of, while stress and worry are constant battles, but we felt that clutter could worsen the problems. Life was out of our control, but we might contain the disarray by having tidy kitchen drawers. Jessica remembers a day off when she took everything out of her master closet and started over. It ended up being a sweaty and stuffy day in the closet, but the work paid off when every piece of clothing was in place. Shane recalls organizing out-grown baby clothes into give away piles or labeled bins by size, and thinning out the over-grown pint glass collection. It is so satisfying to be able to actually see only the items you need in your drawers and cabinets.

Thin out your clothes, kitchen ware, and other items before you organize. Simplify.

 The junk has to go!

The junk has to go!

Looking back, we should have prioritized napping over cleaning up. If you are like us and sleeping or napping is a challenge, then if you can’t sleep, you may as well burn off some nervous energy by organizing that drawer of junk which is driving you crazy.

Nap first, then organize.

Turns out that our mania to keep things organized may be a coping skill. Research shows that clutter and disorganization raise stress levels as well as lead to depression and fatigue. We definitely did not need more stress in our lives as caregivers and maybe that is what drove us to be neat freaks. Or, maybe it was a distraction technique and an attempt to assert some control in our lives. We do believe that although cleaning up and organizing may take some work at first, the reduction in stress and the feeling of happiness is worth it. This article in Shape magazine discusses how organizing can help you physically and mentally. 

Not only do we love the victory of an organized toy area, it is entertaining to read stories and look at pretty pictures of a well designed closet. We like learning tips from organization experts, such as those featured in this Real Simple article: “Organized people say no to spillover.” Brilliant! 

Learn from the best organizers.

Have other caregivers experienced the same joy and release of organization? Should we add “organize your home” to a list of coping skills for caregivers? Or does it just add to caregivers' already long To Do lists?

 

July 28, 2016 Caregiving and Grief News Roundup

It’s time for another News Roundup! We wanted to share some interesting stories that we have come across recently in the caregiving and grieving worlds. We frequently read caregiving and grieving stories, many of which are well written and informative. Sadly, all too often, many of the grief stories are related to shootings and other violent acts. Here we focus on the stories relevant to young adults in caregiving and grief, which continue to be somewhat rare. These particular discussions, we feel, are worthy of your precious time.

We just came across (and wished we had seen it in 2015)  this PBS special on Frontline, following best selling author, Atul Gawande, as he features the physician-patient relationship nearing the end of life. It is powerful and we highly recommend it. As he states, “We want to seem competent and competent means, ‘I can fix this.’” Yet, when it can’t be fixed, the physician needs to have a different conversation. The special features a neuro-oncologist who sees patients with one of the deadliest forms of brain cancer with a <5% survival rate and who has end of life discussions daily. We are convinced that she deserves a medal for this heroic work! Be forewarned that this is an emotional episode, so you may not want to watch it at work.

A Preview of "Being Mortal" on Frontline. 

This article on Next Avenue made us reflect on the often unrealistic dream of having a grand, “last conversation.” It is not always feasible to have a meaningful final moment, but you can add up enough of your many conversations, cherished moments, and even unspoken love, to make something meaningful. When our sister was dying, we each had moments, exchanges and expressions of love which reassure us that we expressed how much we meant to each other. To us, that is more real and meaningful than any dramatic Hollywood movie ending.

On a similar topic of preparing for death and end-of-life discussions, have you heard about The Conversation Project?

This book just came out: AARP's Meditations for Caregivers

It doesn’t matter if it’s a southern thing, or old-fashioned, as this Guardian article states, we agree that cooking is a specific thing that you can do for a friend who has lost a loved one. Cooking is an expression of love and is an easy way to help. This article will make you laugh, while reminding us that food can bring comfort. As the author states, “People can eat all the carrot sticks and carb-free tortillas they want when they’re feeling happy. Heavy grief, in my opinion, is best fought off with equally heavy cream."

One of our favorite British Royals, Prince Harry, recently commented on how important it is to talk about grief. And if he's talking about grief, then it must be cool, right?

We are enjoying reading a newly published book, It’s Okay to Laugh (Crying Is Cool Too) by Nora McInerny Purmort, offering humor in a memoir about grief and loss. The author lost her father and husband from cancer in 2014, just a few weeks after miscarrying her second baby. As she states in the introduction: “This is for people who have been through some shit - or have watched someone go through it. This is for people who aren’t sure if they’re saying or doing the right thing (you’re not, but nobody is). This is for people who had their life turned upside down and just learned to live that way. For people who laughed at a funeral or cried at a grocery store.” We can certainly relate!

Do you have any news stories in caregiving or grief to share?

Caregiving Should Be Respected at Work

Last month, an article appeared in the Chicago Tribune, Caregivers are winning workplace discrimination cases, describing a recent report by the Center for WorkLife Law, Caregivers in the Workplace: Family Responsibilities Discrimination Litigation Update 2016. The report defines families responsibilities discrimination (FRD) as employment discrimination because of an employee’s caregiving obligations and provides statistics, trends, and stories of this growing area of litigation.

We agree, as the article stated, that all employers should want a “harder worker, and a happier workforce,” but it’s surprising how many don’t seem to know how to obtain it. The article and the report make the point that this caregiving problem will become personal to us all at some point in our careers. We likely can’t escape caregiving; therefore, we believe employers need to tackle it as an issue with importance similar to providing insurance to employees. How can we provide the best care to our family members if we don't feel that our jobs are secure? And how can anyone be expected to choose between their job and caring for a loved one?

The article states: “A caregiver can be someone tending to a sick child, a spouse or partner, or an aging parent.” We’d like to add that there are other types of family caregivers, specifically sibling caregivers, which was our personal experience. As two sisters in our 30s and working moms, we helped care for our oldest sister when she had end-stage cancer and subsequently died at the young age of 39. More and more of us, including young adults, have caregiving responsibilities (as noted in the article, in 2014, 25% of caregivers were millennials). However, during our experience caring for our sister, we often felt overlooked and discounted not only as young adult caregivers of a young adult patient but also as mere siblings.

We looked into applying for Family and Medical Leave Act (FMLA) leave in order to have the peace of mind of job protection while caring for our sister. One of us was even encouraged to apply, only to be denied coverage, and we were shocked to learn that FMLA does not apply to siblings. Fortunately, we had fairly flexible work schedules and supportive work colleagues and did not face any outright employment discrimination. However, our sister’s illness significantly affected our daily lives and we can only imagine how others manage to juggle it all. Although no federal law explicitly protects employees from FRD, and protection for sibling caregivers is particularly lacking, we believe siblings matter and have unique roles to play in caregiving. The FMLA should be amended to cover siblings, and another federal statute enacted to protect all family caregivers from FRD.

The report from The Center for WorkLife Law is eye-opening. For example, the number of lawsuits relating to caregiving for aging relatives has grown more than 650% over the previous decade and is expected to continue to rise. The report contains examples of cases where employees were disciplined or fired for absences caused by caring for ill or dying family members, even when they were covered by FMLA, and of the terrible things that insensitive employers said to them. Importantly, the suggested best practices to prevent FRD include not just training and anti-discrimination policies, but practical solutions like “nonstigmatized flexible work programs.” Young adult caregivers, in particular, need such programs because they are often just starting out in their careers at the time they take on a caregiving role, and without increased awareness and nonstigmatized programs, they do not have the seniority or clout to demand the flexibility and reasonable accommodations needed to care for their loved ones.

Employers, employees, medical professionals, patients, and their families need to become more aware of the challenges, rights and responsibilities of caregivers, and come up with solutions. This will affect us all, and we, as a society, can do this better.

Using Humor to Cope

We turned to humor to help us cope with our sister’s end-stage cancer and also in our grief. If we weren’t emailing each other funny and sarcastic stories of the terribleness of the outside “real world,” we were watching funny shows and movies, finding hilarious video clips, or reading comedians’ books. We aren’t advocating denial or avoidance of reality, but it felt good to laugh and to distract ourselves from our sadness at times. Plus, they say that laughter is the best medicine. Humor has been linked to improving health and overall well-being. So, let’s put the tissues aside and find ways to laugh today.

You may have noticed that there are several comedy related listings on our Resources page. With inspiration from this page, here are our top 5 distractions:

Jimmy and Emma Stone square off in a lip sync battle and Emma shows she's not afraid of lightning fast lyrics. 

  1. Late Night with Jimmy Fallon. He does so many great things, but we love the lip sync battles, Thank You Notes, everything he does involving The Roots, and the extensive and detailed TV parodies.
  2. There were several TV shows that we enjoyed watching during our difficult time, but some of our favorites were The Mindy Project, New Girl, Inside Amy Schumer, and Comedians in Cars Getting Coffee. Did you see the (Comedians in Cars) one with Sarah Jessica Parker? Love her!
  3. Yes, Please. We clearly love all things that Amy Poehler does, so of course we needed to read her book and she did not disappoint.
  4. Magazines - People, Us Weekly, In Style, Galmour, Allure, Vanity Fair, Real Simple, Martha Stewart Living, O - if it was about celebrity gossip, fashion, food, or home decor, we would buy ‘em (most likely in an airport on our way to visit our sister), read it, and then pass it off to whoever hadn’t seen that issue yet.
  5. If you don’t know about the “Screaming Goats” videos, you need to check it out. It will make you laugh-cry. There are various versions and we have a video on our Resources Page, but we also love the compilation of songs with the goats. It’s hard to argue that Miley Cyrus doesn’t deserve a screaming goat in her video.

We want to hear from you!

Tell us about some of your crucial resources for humor at times when you really needed it. If you are a caregiver or grieving a loss, what helps you to unwind and take your mind off of your caregiving or your grief?

 

May 19, 2016 Caregiving News Roundup

Grab your coffee and get ready to hear the latest in the caregiving world. In the past month, we have come across countless great articles, blog posts, and news. We wanted to share a few of our favorites- articles that we identified with, learned from, or felt would be useful to you. This news round up has a theme targeted to “Caregivers”.

Perhaps It’s Time to Celebrate a Day in Honor of Caregivers. Here’s the argument for starting to celebrate “Caregivers Day” - sounds like a good idea to us! We can already think of a few worthy folks to celebrate.

Do All Caregivers Matter? Feylyn Lewis draws attention to a specific population of young adults, not to say that they are more important, but to point out that they have different needs and demands than older adults have. This article points out why this age group of caregivers is unique, while also stating that all caregivers are worthy of support. 

Health as a Family Affair was recently published in the New England Journal of Medicine. The concept of illness should not focus solely on the patient, but needs to incorporate the whole family. Broadening the scope to include family members will target interventions to support all of the team members, which will also benefit the patient. We, family caregivers, are of no use if we aren’t healthy ourselves and aren’t getting the help that we need.

The 7 Deadly Emotions of Caregiving. Next Avenue provides a list and advice to cope with 7 common feelings that come with caring for another. Guilt being a pesky one: “Caregivers often burden themselves with a long list of self-imposed 'oughts,' 'shoulds' and 'musts.'” We agree, which is why we created our own “To Don’t List.”

Superheroes of Caregiving Need Better Support. Forbes reports on the superheroes of caregiving. Imagine a world where caregivers do not have to summon superhero powers to accomplish all that they do - we love this list! If only it were real... 

A few articles discuss technology in caregiving, an interesting and growing area of tech solutions. Parks Associates Study regarding technology usage among caregivers found, not surprisingly, that young caregivers are more likely to use apps and other connected healthcare solutions, yet still not as many as you might think. Forbes reports on the Winners Named in Shark Tank Style Caregiving Tech Competition sponsored by AARP.

Your elderly parent is home from the hospital. What happens next? Lastly, this article in The Washington Post describes the increasing research about supporting caregivers and their health; in particular, it discusses the studies performed by one of our admired researchers on this topic, Laurel Northouse, a professor emerita at the University of Michigan School of Nursing.

Northouse’s review of studies found that giving education and support to caregivers improves the physical and emotional well-being of cancer patients. It also decreases the emotional distress experienced by caregivers and improves their confidence in giving care. ‘Caregivers’ and patients’ well-being are interdependent,’ she says.

A Mother's View of Sibling Caregivers

We are honored, grateful, and excited to share a touching blog post this week from our Mom. Our Mom, Sue, is an amazing mother of five girls, a wife of 42 years and counting, a pharmacist, an avid Green Bay Packers fan, an excellent chef, a loving grandmother, and a patient beagle owner. She was our sister Colleen’s primary caregiver and she showed us what true strength and unconditional love look like. In honor of Mother’s Day, she shares her personal perspective on sibling caregivers and losing a child. This post only gives us further proof of how fabulous and resilient she is - to have experienced the greatest loss, and yet not only keep going every day, but also have the courage to write down some of her wisdom. Happy Mother’s Day to this Super Mom.

I'm so proud of my girls starting this website in order to help other siblings deal with the loss of their sister or brother. When we got the results of some tests in October 2014 that meant Colleen was engaged in her biggest fight ever, and within 24 hours all four siblings were here with Colleen from across the country, I marveled at their dedication and tenacity. My first reaction was no, we're fine, I can handle this. But it was transforming in that it gave Colleen a clear message that she was not going to be in this fight alone. She kept saying, "they're ALL coming here?" I said, "I guess they are!"

Mom and Daughters

Siblings can provide so much comfort and so much care, it's amazing to behold. From that very first weekend, they decided they would alternate weekends (and sometimes weeks) so that someone would ALWAYS be here, and I was not to worry about the comings or goings. In fact, they never wanted me to know too many details, but on Thursday or Friday someone would show up—sometimes alone, sometimes with a grandchild or two in tow, usually by Uber. I guess I thought I could handle it, but really? Looking back, I don't know how I could have. I was managing the day to day with Colleen and her family—helping with meals, preschool, doctors' appointments, etc.—but when the end of the week arrived, we needed help. It was such a relief for her dad and I to see a new face and a different perspective. It gave me time to do everyday chores (cooking, laundry) and relax a little, and it gave the girls time to spend with Colleen. Some of our best memories are of a visiting sibling watching a playoff game, HGTV, or a movie, or going out for a walk or a latte. It was good to have company and, even more important, for Colleen to have one-on-one time with her siblings. And it gave us a lot of fodder for conversation the following week... Colleen would say, "What do you think of this move to Kansas City?" Or, "Why do you think she wants to take a weaving course?" Or, "Why would she even consider choosing NYU?" Or, "Do you think her kids should be skiing blues at their age?" Colleen always had an opinion about everything, but then, she was the oldest. It also makes clear the strength of sibling bonds. She was dying of cancer and she took every event in her siblings' lives so seriously.

As a parent, I felt this was a true testament that we had done something right. We may have some crazy history—weeding requirements and telephone limits, no MTV or video games, too many dogs and too much football—but if your children end up with these kinds of bonds, you know SOME of your parenting skills were successful.

We have a large extended family who rallied around us. I was from a family of five children, my husband from a family of four children. Her aunts and uncles were devastated by her illness and did all they could to help. Colleen had 18 first cousins. They were wonderful to her—sending gifts, letters, emails, funny cards. She always remarked on how lucky she was to have cousins who cared about her and kept in touch.

We have wonderful friends and so did Colleen, who were there for us all along the way. They were there 24/7 with prayers, food, wine, hugs, and love. There were childhood friends, college friends, long time neighborhood friends, work friends, who all were supportive and lifesaving. Their many prayers lifted us up and gave us strength we never knew we had.

But it came to a point where Colleen only wanted her siblings and family around her. They were there no matter what. They knew her better than anyone. With them, she didn't have to put on a show. If she wasn't feeling good or didn't feel like talking, or even felt crabby, she could let her true feelings come out. This is what siblings provide in Caregiving. We all need to realize and appreciate their importance, foster these bonds from birth, and be grateful they want to fill this role.

As Gloria Vanderbilt said in her recent documentary, "I have heard it said that the greatest loss a human can experience is the loss of a child. It doesn't just change you, it demolishes you. The rest of your life is spent on another level. Is the pain less? No, just different. It is there forever, until the day you die. The rainbow comes, Wadsworth wrote, and boy was he right. It always does come back. You have to believe it will, even in the darkest of times."

I've thought about this a lot and I don't think you need to "get over it"—it's part of me now, and I need to learn how to live with it. Especially on Mother's Day. I feel so lucky to have had Colleen for 39 years and hopefully my other daughters for many more than that.

Looking for the rainbow! But so grateful to the Sibling Caregivers.