Planning Ahead

Did you see this article in Real Simple? It caught our attention with the tag line: “Most people find death too depressing to talk about. But that denial has a huge price, and it’s loved ones left behind who will pay.” Obviously, we kept reading and wanted to share it with you.

We were somewhat prepared for our sister’s death, but there were still questions that came up, as the article suggested. Like, what should we do with her Facebook account? Are there any bills to pay? What are all the accounts that need to be notified and closed? What are her passwords to myriad things? Fortunately, our sister was incredibly organized and she had taken the time for a great deal of thoughtful planning. Yet somehow there were still questions, things none of us thought of in advance. Some unforeseen issues are inevitable, but knowing what to consider and communicate in advance about your wishes and your affairs can save you and your loved ones from much of the stress. Many people who have experienced the death of loved ones will say, as our guest blogger April Koontz did, that “Being prepared to die is the greatest gift you can ever give” and also that you will also reap benefits from doing so.

The article describes services offered by Good to Go, an advanced planning company that helps people get all of the tough questions out of the way. They have private or corporate consultations, parties, or an online option where you can order a “Departure File.” Are you thinking why didn’t we think of this? We are. We especially love how Amy Pickard, founder of Good to Go, makes the planning seem like such a positive step and even enjoyable.

 

Even though we seem to like to talk about death and dying often, we still have our own work to do. After reading this article, we are reminded that we want to make it easier for those that we leave behind. We will write more things down, review our advance directives, and continue considering and updating our final wishes. Since we love lists and organization, we should be facing this task with the same motivation and find similar satisfaction with the end result. We hope others can do the same.

 

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.

The Struggle to Believe

We are happy to introduce this week's guest blogger and friend, Kate Bales, who shares her story of sibling loss. Like our family, Kate enjoyed a special and close bond with her sisters. She was the oldest of three girls and lost her youngest sister, Beth. Sadly, Beth was only 20 years old. Kate shares a touching story of coming to terms with such a significant loss and finding comfort in signs.  

It’s hard to believe my sister would have turned 35 this month. It’s also hard to believe that she has been gone for fourteen years. However, the hardest thing I have to believe is that my sister is not coming back.

I still remember small instances of my disbelief on the day I found out. I was in graduate school. At that time, my roommate was the youngest sibling of old family friends. She was a special friend to my sister, Beth, when they were little. My roommate’s mom had been battling cancer for a long time and I knew her end was near. So when I returned to the apartment from an errand and she greeted me at the door with tears, I didn’t understand why she told me to call my parents. I remember my heart sinking for her and thinking it was odd that she would want me to call my parents for them to tell me that her mother had passed away. I went back to my room and dialed my mom’s phone number. I could hear the hushed, urgency to my mom’s voice that she always uses when she has bad news. She told me they were in the car with my aunt and uncle who were driving them down to Milledgeville where my youngest sister, Beth, had been killed in a car accident. 

They were headed to the hospital to identify her body and even though she had just said Beth was dead, the mention of a hospital gave me hope. I asked if they still might be able to fix her.  I didn’t want to believe that she was really gone and not coming back. In the foggy aftermath I learned that Beth had been driving back to her college apartment after hanging out with friends when her car was t-boned by a driver who ran a red light.

For a while after her death, it was easy to pretend that she was still away at school. Even though I thought about her absence everyday, I didn’t have to feel it because I was used to being out on my own and away from my family. I think her instant death also made it easier to believe she was still around. I didn’t have the long days of agony and then hope and then agony that I imagine is felt by those who lose a loved one to sickness. My sister was here one day and gone the next. 

It wasn’t until the second Christmas without Beth that her absence really hit me like a kick in the gut. Christmas was a time that we were supposed to be together. I had prepared myself for the first Christmas but when the second came around I had let some of my guard down. I remember sitting in church with my parents and my middle sister, Ashley (I am the oldest of three girls). I noticed that we didn’t take up as much room in the pew. The visual reminder that we were now a family of four made me cry. 

It can be very tough to think about Beth. However, there are many times that I can think about my little sister and smile. Beth was a superstar! She was funny, dramatic, loud, and enormously loving. She was the only person I know that got a parking ticket while parked to pay for a parking ticket. She didn’t pause for a moment before going down to the local nursing home to take her sorority’s “adopted grandma” out on a date. She would throw the sweet lady’s walker in her car and whisk her off to get ice cream. She could talk to a stranger and wasn’t afraid to do what she loved. I admired and benefited from this quality in Beth. I often asked her for help in social situations. Once when I was feeling very shy about selling school, fundraising calendars, Beth took me out, knocked on doors and sold all my calendars!

I still ask for Beth’s help. When I feel sad, anxious or fearful, I will talk to her. She may not be able to physically answer me but I look for comfort from her in songs that come on the radio, glimpses of butterflies, etc. An example of the comfort from butterflies came at my grandfather’s funeral. My grandfather was being buried at the same cemetery that Beth had been buried at years before. After his funeral service, I walked over to Beth’s grave sight. On my walk, two white butterflies fluttered close by. I had once heard a saying that butterflies are angels in disguise. Even though it is just a sweet saying, seeing those two butterflies brought me comfort. It felt as if Beth was telling me that she and my grandfather were still with me. So even if I have to believe that Beth is not coming back, I choose to believe that she is still near.

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.

Dear Hollywood

We tend to write letters if we are passionate about how terrible our travel experience was, or why our senators should listen to us, or reasons that hospice needs reform. In this case, we need to tell Hollywood how they continue to get it wrong when it comes to dying.

Dear Hollywood,

We wanted to raise an issue with you. We don’t mean to criticize, but you need to know that when it comes to dying on TV and in movies, you’ve got it all wrong. We know that this is a tricky subject and you’re trying to create touching stories, but in many cases, we are afraid that you’re misleading people. Plus, the inaccurate picture you’re painting has simply started to rub us the wrong way.

Prior to our experience of watching our sister die from cancer, we were just like many other blissfully unaware people watching things like “The Bucket List” - two old men break out of a cancer ward and go on adventures around the world. Ok, sure. 

But more recently, we were watching a popular TV show - "This Is Us" - and couldn’t finish watching the episode. And it’s a great show, stressing the importance of family and siblings. We are fans. But we couldn’t keep watching. In typical Hollywood fashion, one contained in an alternate reality, the man who is dying takes one last road trip with his son, to hit up his old stomping grounds, making last visits to places that he loves.

We couldn’t watch it because it angered us. Dying people are often frail, tired, weak, and, frankly, feeling pretty crappy, so getting in a car to drive hours and hours is not what they want to do, nor do they have the energy for that. Beyond it being unrealistic, it perpetuates the message that those who are dying should do just that and, if they don’t, they have somehow submitted too easily to dying or not lived their life to the fullest.

We felt pressure to do something grand with our sister as she faced the end of her life. A few well-meaning people even suggested that we take a vacation together. (They must have watched "My Sister's Keeper" too often and remembered that ridiculous and impractical beach scene.) But it was not feasible. It also caused us to question how to make the end “meaningful.” Yet, when we look back, we have no regrets. There was meaning there. Despite your portrayal of dying as an adventure-seeking opportunity, a time to plan impromptu trips, we had countless worthwhile moments spent in our PJs on the couch, laughing over a comedy, hugging, crying, and enjoying quality time with our dear sister. Those moments mattered- being together- not time spent trying to coordinate a trip to jump out of a plane.

Why is it that the fantasy of movies features one last gesture, one last big hurrah, one final trip? This concept of a “bucket list” is even a social media craze - there’s a hashtag for it, #bucketlist. We get that anyone wants to feel like they have had adventures and accomplishments, lived a full life, but maybe we can leave the dying out of this? Uncouple the bucket list idea from the end of life stage. Let’s call it something else - maybe a “full life list.” #fulllifelist. Yes, movies and TV are entertainment and showing us the reality of dying is anything but entertaining, but misrepresenting it is not ideal either.

As this article in The Guardian teaches us, a bucket list risks chasing the future and not coping with the reality of the present, or facing death. Psychologist Linda Blair brilliantly explains: "But if you're constantly living in the future, ignoring what's going on right now because you're shooting for goals, which happen so quickly that they're over, and then you have to chase another one, you're not really living." Perhaps your focus in Hollywood should shift toward living life how one wants, pursuing those items on a wish list as an everyday goal, and cherishing and respecting one's relationships. That way we won’t all be panicking to have a final, meaningful moment and we won’t put more pressure on those who are dying or their loved ones to try to manufacture meaning at the end.

Our feelings were echoed recently by comedian Patton Oswalt who tragically lost his wife last year and who told NPR how pop culture gets it all wrong when it comes to grief: "Just look at super heroes, he says — their motivation is often rooted in loss that 'leads them to travel the world learning martial arts and doing CrossFit and getting really cut,' Oswalt says. 'And that's not been my experience.'"

Are you thinking that we should already know this about you, Hollywood? Is it obvious that you don't always accurately reflect reality? Fine, we don't always want you to. We want distraction and comedic relief, too. But other people don't seem to know the difference either, otherwise we wouldn't have gotten some of the questions about our plans for making a beach trip in our sister's final months. Our purpose in writing you is to encourage you to continue to entertain us, continue to create touching stories, but that you also consider the reality of end of life. The reality for most is that the insurmountable sickness and sadness involved does not allow much energy for adventures. And yet, there is meaning in the everyday moments with loved ones, and that is a lesson that has been lost.

Sincerely,

Jessica and Shane

The Story of the Past Year

‘Tis the season once again - time to celebrate our Irish heritage! We are reminded of our St. Patrick’s Day post last year, when we launched this website. We shared one of our favorite quotes:

Death leaves a heartache no one can heal;

Love leaves a memory no one can steal.

- Irish Blessing

We are proud to announce that we are celebrating our 1 year anniversary of this website and blog! Although it has been a time consuming and sometimes difficult road, it has been incredibly rewarding. We are impressed with the real writers of the world who do this regularly and our respect for them has only grown. Just when we had moments of thinking that we couldn’t keep this up, a great idea would strike us in the middle of the night and we felt inspired again. We thank you for the support and as always, we thank our role model and big sister, Colleen, for constantly motivating us to work harder and to make an impact on the world just as she did.

Below is a recap of the year in images and quotes.

keep-calm-and-be-sisters-114.jpg
"Our goal is vast - to help not just other young adult and sibling caregivers and grievers, but also to reach their family members, friends, and colleagues, as well as health care professionals, in order to increase awareness and understanding of their needs. We can all improve upon our ability and capacity to discuss death and dying, to prepare ourselves and others for it, and to support those that are going through it. Even though these are big goals and big topics, we think Colleen would agree that we should try to tackle them." - Our Motivation Behind Losing a Puzzle Piece
"In many ways, losing our sister helped us find more meaning in family and appreciating life - and isn’t that a big part of the holiday spirit?" - Simplify and Downsize: Surviving the Holidays Without the Same Cheer
grumpycatmeme.jpg
"#stoptalkingaboutyoursickcat #doyouwanttoaskaboutme #publiccryingismythingnow" - Sister Humor About Our Grief
Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

"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."- Maggie Gets It: A Place Like Home

We have learned a great deal, not just by examining our own feelings and searching for insight, but also from our fabulous guest bloggers. We heard a mother’s perspective on sibling caregivers, a patient talk about grief and how acceptance is the hardest stage, and various views on sibling loss from a Marine's family dealing with his sudden death and how music heals, from a sister accepting and reflecting on the whole sibling relationship, from a group of siblings who supported each other through loss, from a sibling dealing with an unexpected loss and realizing life will never be the same, and the lessons a sibling learned through death. We received advice on how to talk to children about serious illness, how to keep going through grief, how Colleen was essential in her friend’s life, and other topics such as ambiguous loss, survivorship, and architecture's role in caring for cancer patients. We are so grateful for their wisdom.

Check out some highlights of these guest posts through their beautiful images: (Click on the image to link back to the blog post.)

"[Colleen's sisters] 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." - A Mother's View of Sibling Caregivers

It has been quite a journey and we can't thank you enough for your support. What we have gained from this website and the many touching stories is difficult to put into words. Every day we are reminded of Colleen and the pain of having to go on with life without her does not go away, but this website has given us purpose and for that, we are thankful.

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:

Death: Life's Greatest Teacher

This week, we’re sharing the three greatest lessons April Koontz of Daughters Unite has learned from the sudden losses of her brother, cousin, and uncle. Daughters Unite is a social networking site dedicated to helping caregiving women. We are honored to share April’s positive insight on how her grief has taught her many important lessons, strengthening her as a person as well as her relationships.

On Aug. 14, 2010, my family’s world completely stopped. My 34-year-old brother was found dead by my parents of an unintentional overdose. Despite my dad’s heroic CPR efforts, he did not return to this world. That day, I sat in complete shock as I listened to the paramedics zip up the body bag and carry him down the stairs and out to the ambulance. I can still recall the sound six years later.

I don’t know about you, but I’m convinced that once you’ve stood with one foot here and one foot on the other side of life’s “thin veil,” life as you know it up to that point is forever gone. Yes, you still get up in the morning and brush your teeth and make dinner and mow the lawn and sit in traffic, but it’s not the same —  because you’re not the same. How can you be? Think about it. There’s nothing that engages every one of our senses simultaneously and as intensely as death, which, ironically, is what living life to the fullest is all about.

AprilFamilyPic.JPG

Since the death of my brother, we’ve lived through the sudden deaths of my cousin and uncle. That’s three sudden deaths over a span of five years. Yes, our family has suffered deeply. We’ve grieved and continue to grieve, and the grief has etched more lines on our faces and permanent scars on our hearts. We’ve experienced sleepless nights and painful days. There are songs we can’t bear to listen to anymore. There are TV shows — even comedies — too painful to watch and recipes too painful to make. Even though, and thankfully so, time dulls the sharpness of the sting, it never goes away completely. Every birthday and every holiday still hurt to some degree. Their absence is always apparent on some level.

The good news is that with the heart-wrenching pain comes heart-warming lessons that strengthen our relationships and stretch our character. For our family, here are the three greatest ones:

•    Stupid, petty arguments are stupid and petty. There is nothing worse than receiving a call that someone you are not speaking to for whatever reason has died. Death’s finality is harsh. If you’ve got bad blood with someone in your life — do your part to make amends. There’s no guarantee they’ll reciprocate, but do your part to ensure you don’t have regrets on your end. Note: I’m not suggesting there aren’t exceptions to this rule in cases such as abuse, neglect, addiction, etc. What I’m referring to is truly petty things like you not being invited to an event or someone made a snide comment about your outfit, or you don’t see eye to eye on politics. Our family is now very quick to apologize and clear the air. We keep the lines of communication and love open at all times.

•    Time is a commodity. Spend it wisely. Far too often we ignore our soul’s nudges to send a card or text, make a call, or drop by and see someone. We’re just too busy. We’ll get to it next week or month or year. Pay attention to the nudges and follow them. Many times the reason for the push can’t be seen by the naked eye, and more often than not a great surprise is waiting. Our family is now big on cards, meals, calls, texts, and supporting our friends and extended family. Life is short. Pay attention and love fiercely — especially when it’s not convenient.  

•    Be prepared to die. This one is probably the biggest lesson I have to offer. Being prepared to die is the greatest gift you can ever give your peeps. It removes the added stress of untangling the administrative nightmare that comes with a person’s death and allows them to be present to you, the celebration of your life, and their grief. They will be in a haze that can last for years after you’re gone. Having a plan in place will help them see through the haze a little more clearly. Most of us create a list for the person caring for our pets or watching our house while we’re on vacation, right? It’s the same concept. Schedule the time to get your affairs in order. You’ll be amazed at how alive you feel after completing it.

There’s nothing I’d love more than to smell my brother’s aftershave as he walks past me or laugh uproariously with my cousin at the kitchen table or hear my uncle’s not funny jokes again. There’s nothing I’d love more than to wipe away the grief my parents carry with them over losing their only son. Thankfully, most of the time, I’m at peace with this reality and truly grateful for the awakening their transitions have given me.

I once heard Jaclyn Smith recite a quote her assistant had written following the death of Farrah Fawcett:

“They’re everywhere, and they’re nowhere, but they’re there.”

Thank you, Jaclyn Smith’s assistant. I carry this with me every day.

Prevention, Awareness, and the Unpopular Cancers

February is National Cancer Prevention Month, which we learned from this American Cancer Society cancer awareness calendar. Looking at this calendar, we found it interesting to see what types of cancers merit their own awareness month. The most common types of cancers are breast, lung, and prostate, with reportedly 225,000 new cases of breast cancer expected in 2017. This perhaps best known cancer - breast cancer - has its time in the spotlight in October when everything from airline napkins to NFL uniforms turns pink. Some evidence has led to books and opinion pieces questioning whether all the awareness leads to any real change in fighting the disease. To be honest, we didn’t have many charitable thoughts about breast cancer awareness in the October when we learned that our sister was dying of a rare form of cancer.

Colleen was unlucky not only in that her type of cancer was very rare, but also in that she was a rare patient. She was young - in her mid-20s - when she was first diagnosed. Her cancer appeared as a neuroendrocrine tumor (NET), which more typically occurs in a middle-aged man. It was a difficult and complex cancer to learn about as there are about 40 types of NETs and they can behave differently and appear in various organs. It seemed impossible to have a clear and tested way of treating her. She was also a special patient because she was a physician herself. She studied her cancer, learning about its disease process, symptoms, drugs that slowed its growth, and responses to treatment. She was her own champion for her health.

We often felt frustrated that more was not known about her cancer and her options. It sometimes felt like there were more resources available to the famous cancers. Research tells us that there is a mismatch of funding among different types of cancer. To us it seemed unfair that not only did Colleen have an underfunded cancer in terms of research, she also lacked other types of support that may come from having a recognizable disease. We have heard a friend describe her cancer experience as wonderful, mentioning that she received an entire binder of resources for her cancer. Without recognition and more support, Colleen was never going to find a yoga class tailored to her specific cancer as our friend did. Upon studying the cancer awareness calendar, it turns out that there is, in fact, a Neuroendrocrine Tumor Day in November. Who knew?

But knowing that there was an awareness day for her cancer wouldn’t have changed much for us. We didn’t necessarily want a special colored ribbon unless it would have effected real change in Colleen’s outcome. The contrast of beating cancer versus dying of it is a big one. The awareness campaigns focus on those living with it or surviving and, obviously, they want to stay positive. Their goals are fundraising for research, support, and more awareness campaigning. Those who are losing their battle to the disease may feel left behind.

Why do we dedicate certain days and months to certain types of cancer and not others, anyways? There are so many kinds of cancer, and they all deserve our attention. We worry that the very rare ones will be left out, which doesn’t seem right. As this article in Chicago Health argues, “lesser-known cancers deserve equal attention so that people can be better informed about symptoms and new developments in diagnosis and treatments. And with more attention will hopefully come additional financial support necessary for research to improve survival rates.”

Focusing on cancer prevention this month, rather than awareness of a particular kind, seems much more inclusive and more productive. In fact, the American Institute for Cancer Research says that eating healthy, staying active and lean are all ways that you can avoid one third of cancers. But even the cancer prevention focus leaves out those who are currently fighting the disease.

Unfortunately, people continue to die of cancer at staggering numbers. We should focus on continuing to support all kinds of cancers and all patients - no matter their age, race, gender, or stage of disease. Whether you talk about awareness or prevention, the commonality is that cancer is a beast and it affects people in terrible ways. It may help just by being “aware” that the colored ribbons alone don’t make the pain and suffering go away.

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!

Unbreakable Sibling Strength

This week, we are thrilled to share a story of sibling bonds providing strength through tragic loss. We are honored to have our cousins, the “Madison Moks" as our guests: Becky, Christy, Stephen, and Matthew Mokrohisky. We look to their family as an example of supportive siblings, strong family ties, and simply fantastic people. Their story illustrates how they experienced the loss of their dad differently but one thing remained the same – they had each other to turn to for support. Their bonds as siblings are unbreakable and incredibly resilient and we are so proud to share this.

We were a full house growing up in Madison, Wisconsin with our parents, four siblings and a very large dog. Becky is the oldest sibling, followed closely by Christy and a ten- year age gap to “the boys”, Stephen and Matt. While age separates us, mutual love, respect and support have strengthened and sustained our bond through the years.

Our mom, Sue, is the rock of our family. She was the first in her family to go to college, yet her career as a social worker took a back seat to her family. She is our shepherd, guiding us through ups and downs with her unconditional love and unbreakable spirit. Our dad, Steve, was a hardworking, passionate family man. He was a dedicated physician to his patients and the athletes he cared for, but his family was his first priority. We remember when he turned down the chance to attend the Super Bowl with the Chicago Bears as one of their team physicians because he wanted to watch the game at home with his family. Our lives centered on family. We came home early from sleep overs to go to mass as a family. We ate dinner at 8pm so we could eat as a family.

In April, 1991, with an established sports medicine practice and a growing family, our dad was diagnosed with metastatic lung cancer. He was 48 years old. The girls were in college and the boys were in middle school. The doctors gave him six months to live.

Christy’s Perspective

My sister and I were in college when our parents asked us to come home for the weekend. Something didn’t feel right but we convinced ourselves that our parents were being dramatic and just wanted us home for the weekend. The next day, as we stepped off the Badger Bus in Madison, Wisconsin our dad was waiting. He put his arm around us, pulled us in, and as we walked toward our family van he told us that he had cancer. Through tears, we could see our mother in the van window looking back at us. We were devastated. Our first thoughts and questions were of our brothers: Do the boys know? How are they? Where are they? We were a close family before but something happened that April day. We connected in an entirely new way and we developed a strength that sustained us through two years of cancer and the 25 years we have lived without our dad. Every year there are times when his loss seems unbearable. There have been graduations, weddings, the birth of grandchildren and family reunions, but it’s the everyday, unexpected moments when we miss him the most. In those times, we turn to each other. We often say nothing because all we need is to be present with someone who understands.

Becky’s Perspective

After two years of treatment our dad passed peacefully in his favorite place in our house: the sunroom that overlooked the backyard and his garden. He loved to watch the birds. We were all in such different places in our lives, so his death affected us in different ways. As the oldest, I felt a lot of guilt in the years following his death. I wasn’t able to be there to help my mom and be present in the boys’ lives. Also, I recognized how lucky I was to have known him the longest and have the most memories. I felt deep sadness for my brothers whose early memories were our dad being sick and undergoing chemotherapy and radiation. One of my most vivid and impactful memories after my dad’s death was of my youngest brother Matt coming to us, and asking what would happen to him if our mom died. Where would he go? Where would he live and who would take care of him? At that moment I recognized the deep connection we all have as siblings, no matter what the age difference. The four of us were all going through this loss together.

As the four of us have aged with families of our own, our sibling bond has grown and our relationships have deepened. We continue to make our siblings a priority for comfort in hard times and to tell stories as a way to preserve our dad’s memory for each other and our children. Three years ago, we celebrated the 20 th anniversary of our dad’s death. We were living in different places around the country at the time, but we connected throughout the day via email with some of our favorite stories and memories of his life. We have learned to manage the tears and heartache over the years by coming together.

Stephen’s Perspective

I was 13 and Matt was 10 when our dad told us he had terminal cancer. There are two very distinct periods in my life: the time before dad’s cancer and the time after. As young kids, Matt and I enjoyed playing sports, spending time with our friends and going on family adventures, particularly camping and fishing. When my dad told me he was going to die in a few months, in many ways the innocence of youth faded and I grew up pretty quick. Despite the harsh realities of our dad’s illness and our uncertain future, the two years that he was sick became a rallying cry for our family. We were determined to live every moment, and to experience joy, sadness, doubt and hope together. We religiously prepared his Ensure shakes in the hope that it would give him strength through his cancer treatments to engage us in one of his adventures – a picnic in the park after Sunday mass; building a pond in the back yard; fishing at Governor Nelson State Park; a few more runs down the ski hill; and one last road trip to the Ozarks. The ironic beauty of those two years is that in the midst of losing our parent, we grew closer to each other.

I remember our final moments with my dad as though it happened yesterday. My mom, Matt and I sat with him in the sunroom. We locked hands in an unbreakable chain of love, and prayed for calm and peace. I have always felt blessed that we had that time and those experiences, knowing they sustain us to this day. For us, quality of time exceeded quantity of time. I remember the days and years that followed. No one slowed down for us. Life just moved on and we relied on each other to learn and grow. I remember how much I relied on my big sisters – sometimes for support and understanding, and other times for guidance to steer me back on track when I lost my way. Only Becky could get away with calling my college dorm room to wake me early on a Saturday morning and light a fire under me about my upcoming exams that required my attention. Only Christy could relieve my panic at being unprepared for my exams and attempt a last minute revival. And, only Matt could teach his older brother a wise lesson I desperately needed to learn. Shortly after dad died, I had a misplaced sense of responsibility to play the part of “the man of the house” (whatever that meant). As he went to bed one night Matt gently reminded me “I don’t want you to be my dad. I just need you to be my brother.”

Matt’s Perspective

I was 12 when my dad died.  Today I am 36 years old.  I have a beautiful and loving wife, an amusingly adventurous two-year- old son, and a little baby girl who just arrived.  My life is blessed.  Still, it is surreal to reflect and realize that I have lived 2/3 of my life without my dad.  He may not be here to experience my life, but my life experiences him.  The ripples of his death are felt in all of the blessings I enjoy today. And, if I let myself, I can still see the world through those twelve- year-old eyes.  

My dad got sick when I was ten.  Early adolescence.  That time in your life when school and friends and puberty are supposed to consume your every thought.  Instead, I thought about death.  Death was all around me.  In a matter of 3 years, our family lost my father, two close family friends and my grandmother.  As an adolescent, I didn’t know a lot about life, but I was surprisingly familiar with death.  Don’t get me wrong.  I was still a kid who played and learned and had fun.  But when I went to a sleepover, I always feared what might happen when I was gone.   Every note I wrote for a birthday or a holiday felt like my last chance to tell someone I loved them.  Words had to be perfect.  Goodbye’s had to last.

Shortly after my dad died, my grandma also passed.  I remember her wake vividly.  Afterwards, my siblings and I were sitting together in a gathering room while my mom was finalizing arrangements for the next day’s funeral.  We were in that room… the four of us.  It was quiet.  I looked at my siblings and they looked tired.  They looked gutted.  And then, out of nowhere, I just blurted out, ‘What if Mom dies?  What happens to me?’  I can only imagine how sad that question must have seemed to my siblings, coming from their little brother.  I don’t know what I expected them to say in that moment.  Honestly, I can’t believe they could even muster a response.  But they all did.   My oldest sister Becky, in the midst of medical school, would quit everything and come home.   My sister Christy, just finishing college, would put her future on hold, and she would stay with me.  My brother, still a teenager himself, would somehow take care of me.  In that moment when I feared I could lose everything to death… my parents, my home, my city, my friends… somehow in that moment, my siblings helped me realize that nothing could tear apart my family.  We were strong, and tragedy only strengthened us.   For me, that was the moment that death stopped winning.  That was the moment that I started healing.

A Reflection on Colleen

Our family’s deep experience of loss resurfaced all over again when Colleen’s cancer recurred. We knew what it was like to lose our dad; but what was it like to lose a sibling? The Conway sisters, in the most loving way, reached out to all of their cousins telling us that Colleen’s chemotherapy was not successful and there were no more treatment options. We were devastated. For three months, we watched the Conway sisters do exactly what we did when our dad was sick. Every chance they got, they traveled home to be with Colleen. They were present to her; they cared for her; and they comforted her.

The Conways are a beautiful family with incredible energy; and they’re at their best when they’re all together. We have so many wonderful memories of our Conway cousins from family reunions and weddings. They were the first ones out for a round of twilight golf and the last ones to leave the dance floor at a reception. Their world changed two years ago. Yet, the love and support they showed Colleen and each other sustains them today.

We miss our cousin, Colleen. She was hilarious, a care-taker of everyone, a brilliant surgeon, a nurturing mother and a devoted sister. When Colleen was sick, she shared what life was like living with cancer when most of her colleagues and acquaintances didn’t know of her diagnosis. She said, “(My illness) makes me be nicer to people because I don’t know what they are struggling with.” So, we celebrate and honor our cousin Colleen, and are mindful of how we treat others because we don’t know what struggles they are facing.

Thank you, Shane and Jessica, for your blog each week and for giving us a crack at this. We’ve learned a lot in the process. First, it’s not a great idea to write a blog on grief when you’re at work. Blotchy eyes, red face, concerned coworkers. Time to go home. The most important lesson, though, is how meaningful it is to connect with a purpose, resurface feelings and dialogue about our experience. We learned things about each other’s grief process that we never knew. What a gift.

 

Being Supportive The Week Of A Funeral

We previously talked about how to help someone in grief, but wanted to address a particular time period in grief. A friend of ours recently asked for advice on how to be supportive to a family member during the week before a funeral. It got us thinking back to this hazy time and what could be helpful. We are glad that she asked so that we could offer a few specific and realistic suggestions. Actually, we have been working on this post for a while, but just realized that this posting date is the week of the second anniversary of our sister’s death.  We hope to focus on one positive, in that we do have some advice to share in order to help others in the unwanted position of planning a funeral.

Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

When we think back to the week of our sister’s funeral, like many grievers, our recollection of events is a little blurry. We were sleep deprived, delirious humans who spent our days looking through pictures, thinking and writing about our sister while preparing her eulogy, helping plan a funeral mass by picking out songs and readings, and attempting to read and respond to messages from friends and family. To prepare for a funeral for our 39 year old sister was surreal and devastating.

But seriously, the list of tasks involved in planning a funeral is pretty ridiculous. Not to even mention, the hundreds of thank you notes that we wanted to send following the services to those who sent flowers, food, and donations. The only way we could manage the notes was to divide them up. And keep in mind, we were doing this work while wishing that we could just stay in bed and hide under the covers.

Somehow, we did it but did we have to do all of those things? Probably not, but we were too tired to make reasonable decisions, which is why we did things like wander the mall looking for an outfit or extra tights for the children to wear to the funeral, but wishing that we were home on the couch with our family. You can learn from our mistakes and help your friends and family who are preparing for a funeral by following any of these tips:

  • Delegate jobs. The immediate family may not be capable of figuring out what they need in order to ask for help, so just offer specific help like, “Can I go to the mall and pick up any accessories or clothing for the ceremony?” Or, “Do you need a courier to drop things off at the funeral home?”
  • Entertain the children. Take them on an outing, let the kids get a much needed break and burn off some energy.
  • Offer to pick up arriving family at the airport or sponsor their transportation costs in a metro car service.
  • If you live far away, you may want to do something but can’t physically be there to help. Maybe a care package of fun distractions would be nice. Include things like magazines, funny books or other distractions, a comfy shirt to lounge in.
  • Organize dinners to be dropped off at the house - simple, comforting meals.
  • Send wine.
  • You can plan out tasks as a family or group to offer lots of rotating help.
  • You may feel like you wish you could do more, but just remember that your simple presence at memorial services, if you are able to attend, can be very comforting. When we looked out at the crowd of people who showed up to remember our sister, the sheer number of faces was amazing and heartwarming because we knew she had touched so many lives.

Jan. 26, 2017 Caregiving and Grief News Roundup

We were enthralled with this NY Times article- our children were ignored and things got messy while we read it start to finish. B.J. Miller is one inspirational man - a triple amputee who went on to become a physician focused on changing palliative care. His goal is to “de-pathologize death.” What is a good death? How do you judge it? What matters in the end? Such important questions, and we are so glad B.J. is asking them. 

Photo credit: Melissa Kroll Photography http://www.melissakrollphotography.com/

Photo credit: Melissa Kroll Photography http://www.melissakrollphotography.com/

Another recent NY Times article asks "Who Will Care for the Caregivers?" and states that "we — as doctors, employers, friends and extended family — aren’t doing enough to help them." It covers so many points we agree with! Family caregivers aren't always included in decisions about patient care but are expected to perform complex medical tasks at home with little training.  And as we've said, policies that increase paid leave and provide flexible work schedules would help support family caregivers. 

Yes, yes, this is what we’ve been saying. Being a family caregiver is difficult. Can’t we make it easier? As this states, “Affordability for long-term care is surfacing as a clear and growing challenge for families.” Caregivers are gaining influence.

Anne Tumlinson of Daughterhood highlights one of our favorite topics: sibling caregivers, and we were lucky enough to be mentioned in the post. She shares tips for avoiding conflict and building better sibling relationships while caring for aging parents.

This beautiful and honest story from Zach Sobiech’s sister, Alli, is worth a read. We relate to her story of sibling loss, anxiety and grief, and efforts to help her child know his deceased uncle.

As we mentioned beforePrince Harry has spoken about grieving the death of his mother. People magazine recently featured his story about grief. He shares that he suppressed his emotions for a long time, but now is energized after finding a way to carry on his mother’s legacy through his charity work.

This radio show via KALW in San Francisco is part of a series covering end of life issues. Palliative care training is now offered in almost all medical school training, but unfortunately there is a shortage of doctors specializing in this. Dr. Jessica Zitter is interviewed, an ICU physician who specializes in palliative care, and talks about her personal practice “resisting the urge to do more” and asking her team to think about “how is this really going to help?”

 

High Flight

We are excited to shed more light on our favorite topic and share another perspective on sibling loss. We introduce a guest blogger and friend, Melissa Kroll, who lost her older brother tragically at age 19. She reveals how difficult it is to experience such a great loss at a young age, and how it affects the family dynamic, even 20+ years later.


It’s hard to know where to start with a story like this. It feels like it’s not my story to tell, but in reality, it is...

Losing a sibling is an odd thing to go through. It was catastrophic to our family in so many ways, and today - on the 21st anniversary of his death - I find myself grieving for his loss still, of course, but also for the loss of what could have been.

My older brother, David, died suddenly in a plane crash when he was 19, just five days before Christmas 1995. The instant that phone rang in the middle of the night, the trajectory of our lives, and my family’s relationships with each other, changed forever.

My mom was never quite the same after his death, and now that I am a mother myself, I cannot fault her for that. But I think what many people don’t realize is, when a sibling dies, that is not the only loss that you, as a surviving sibling, have to endure. You also lose your parents - at least temporarily. And when you are 16 and 12 (myself and my younger sister, Sara, respectively), that can be a hard pill to swallow. The people who are supposed to protect and comfort you suddenly aren’t able to do that, because they can’t see beyond their own grief. While I was on the downward slope of my “formative years,” if you will, (or adolescence), Sara was smack dab in the middle of hers. I don’t have to wonder how that affected her - while she is a wonderful, compassionate and hard-working woman, she has been plagued by anxiety and health issues for the last 10-15 years. Thankfully she is stronger than she thinks, and she’s overcome a lot. I, on the other hand, simply turned to those in my life who I could count on for that compassion and support -  my circle of friends, friend’s parents, boyfriends, teachers- basically anyone outside my immediate family.

I know our family is not solitary in our grief - bad things happen to good people everyday.  But the truth is, when a tragedy like this strikes, nothing is really ever the same. I can’t erase the image of my Dad crumbling to the floor after hanging up the phone, or my Mom running outside to the front lawn and screaming. I also can’t help but wonder, on an almost daily basis, what my family’s relationships would look like if he were still here. Would he and I be close? Would my children have older cousins to play with? Would my Mom be happier and more content? While it is true that we are still close as a family, it is also true that as a surviving sibling, I have often felt like my sister and I aren’t enough.

But as cliche as it sounds, life does goes on, and the best I can do is keep my brother’s memory alive by telling my children about their Uncle whom they will never get a chance to meet.

Celebrating a Hero Today

We would dance with her to celebrate if that is where the night led us....

We would dance with her to celebrate if that is where the night led us....

Birthdays are a big deal in our family. Growing up, we got to pick our favorite meal, enjoy cake and homemade birthday banners, and open presents. As adults, we continue to send each other cards and gifts to make the day extra special. It would be hard to let this week go by without acknowledging an important time of year and day dedicated to one exemplary woman. Our sister’s birthday is this week- today, in fact- and she deserves special attention. We celebrated this day for 39 years with her and we want to continue to celebrate her today even though she isn’t here. This year isn’t a milestone birthday, unlike last year which would have been her 40th birthday. As you can imagine, that was incredibly hard for many reasons. But this year allows us to reflect further on her birthday and more importantly, her. The word “hero” comes to mind.

There are many heroes and role models in life. We learned about a Special Operations Marine who was his brother’s real-life hero from our guest blog writer, Tyler. We also recently watched Michelle Obama's farewell speech, and were moved by her inspiring words : “Don’t be afraid...Be focused. Be determined. Be hopeful. Be empowered.” We have been thinking about the unsung, non-famous, everyday heroes. A hero is defined as a person who is admired for courage, outstanding achievements, or noble qualities. We were previously asked by Working Daughter about our heroines, and we were grateful to be asked this and to answer: 

“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."

Until we watched our sister face the end of her life, we didn’t understand what a brave person was. To be told that your time is limited and a disease will take over your body and life, as you are just starting your adult life, is something that must be at the forefront of your mind every minute of every day. Yet Colleen had goals, ambitions, and people she cared about, and she was determined not to let cancer define her. She wasn’t given a choice, a different path to take, and she faced it in typical fashion - with grace, a fierce outlook, and a humorous attitude. She eventually had to accept defeat, yet she still managed to show courage in that acceptance, and we will never forget that. There are many people like her, facing their own uncertain future, battling illness, and we remind ourselves of that often. It is an incredible heartache, a pain that is unreal, but these everyday heroes pull themselves up and take it on, good or bad, each day.

Our sister fought cancer like the super human she was. She didn’t act afraid, but remained protective and concerned about OUR futures and OUR well being. Even in her most difficult times, she still mothered us and wanted us to be ok. She didn’t shut down, become enraged, or disengage from us. She came to a place of peace on her own - her own timeline, her own terms. And in her final stand, she yet again led by example. As Michelle Obama said, “Don’t be afraid.” Somehow she wasn’t. Colleen is our unwavering hero.

So on this day, we’d like to hear your stories. If you know Colleen, share a story or memory of her, or tell us about your hero. We want to celebrate all the unsung heroes today.

Our Recommended Book List for Grievers

Maybe it’s just us, but we keep seeing lists of books, such as Best Books of 2016, Bestsellers Lists, Books to Read in 2017, posts of what people learned in 2016, and their goals for future reading. We want to get in on this! As we look back on 2016, we realize that we learned many things and laughed often from reading. Below is our own unique list of books that have helped us in our healing. We have previously recommended some of these books in past blog posts and on our resources page but wanted to revisit a few and share some of our favorite parts and quotes. In no particular order…

It seems appropriate to start with this New York Times bestseller When Breath Becomes Air, which brought to the forefront the subject of death and dying and was groundbreaking in that it is from the perspective of the patient, or the person dying. Paul Kalanithi as both a physician and a patient contemplates, “What makes life worth living in the face of death?” At a young age, just like our sister, he was forced to face his own mortality. It is difficult for us to choose just a few favorite quotes, because surely we would be sued for copying the entire book. We previously discussed this book and others like it in our post "At Least America Is Reading About Death." Many can learn from his wise words and his insight into changing the medical field’s view of the dying and how to help them:

“Amid the tragedies and failures, I feared I was losing sight of the singular importance of human relationships, not between patients and their families but between doctor and patient. Technical excellence was not enough…..When there’s no place for the scalpel, words are the surgeon’s only tool.”

In Fly a Little Higher, Laura Sobiech brings us on her heart wrenching journey of her son’s battle against osteosarcoma which he unfortunately lost. We related to many parts of her book- the ups and downs of cancer, the scenes of her tight knit family dealing with such tragedy, the siblings' heartache, the awe of watching the patient face it all with such grace. When she talks of her children, she refers to them as “a team...and they worked best when together.”

Laura even allowed us to laugh a few times. One of those times was when she is talking about how people aren’t sure what to say and can’t imagine dying young. She says:

“I’d often fantasized about writing a tutorial entitled ‘What Not to Say.’ It would be very basic, just a couple of hard and fast rules:
1. If the sentence you are about to say starts with the phrase ‘have you’ or ‘should you’, don’t say it.
2. Unless you have had a child with the same disease and you’ve been through the exact same thing, don’t offer advice.
3. Don’t tell me about everyone you have ever known who has either battled cancer or died from cancer.
4. Don’t tell me to be grateful.”

This list should be printed and handed out to the masses. Thank you, Laura.

Not to give away too much of this novel, A Window Opens by Elisabeth Egan, some great advice and insight comes after a death in the family. She deals with the brutality of having to return to work and the real world:

“One by one, the guests left my mom’s house. They promised to check in soon and made us promise to let them know if there was anything they could do. News flash: nobody is going to give you an assignment. Just do something.”

And we laughed out loud when the main character returns to work and is asked by a coworker if she received the Edible Arrangement: “‘Yeah, definitely.’ Translation: ‘Actually, not so much. Pineapple impaled on a toothpick doesn’t make anybody feel better, ever.’”

Nora McInerny Purmort’s It’s Okay to Laugh: (Crying is Cool Too) was just what we needed - to laugh during our grief. We related to her sarcasm and felt like we could be friends. She struggled with a run of terrible things that happened to her in a short period of time and shares it all in a very real way. There are too many good parts so you really just need to read it, but we loved the chapter where she discusses her relationships with her siblings. Of course, it is funny, and we appreciated the little tidbits like how she describes herself as a “knockoff of her sister...but taller.” When her husband entered hospice, she talks about how her siblings helped her and were with her:

“She [Nora’s sister] was ...perpetually cleaning my kitchen, raising my child, and giving me healthy pours of white wine to anesthetize me at night."
Her brothers were present too and you can sense the type of unwavering sibling support that they provided.:
"When I went to bed, I heard him [Nora's brother] saying good night to Aaron [Nora's husband]. 'It's okay, buddy,' he told him, 'I'll take care of them. You did good. You did real good... We learn as we get older to appreciate the people we love for who they are, and for how they love us.”

In The Rainbow Comes and Goes, Anderson Cooper and his mother, Gloria Vanderbilt, publish their correspondence over the course of a year in which they discuss their lives and losses, including Anderson’s father and brother. They talk about grief and death honestly, and their fears and hopes, as when Anderson writes: “I haven’t told you this before, but I’ve always assumed I would die at fifty because that is how old Daddy was when he died.” We related to Anderson explaining that he never expected to lose his brother, instead expecting to have more time together:

“My greatest regret is not making more of an effort to be closer to Carter, not talking with him about feelings or experiences we may have shared. Perhaps it would have made a difference in what happened to him. I always imagined we would be closer as adults, once we had lives of our own. I thought there was plenty of time.”

Yet, ultimately, knowing that “the rainbow comes and goes” - a phrase from Wordsworth - is what Gloria tells Anderson that she finds so reassuring:

“In every life, you have moments of blinding beauty and happiness, and then you land in a dark cave and there is no color, no sky. Then the rainbow returns, sometimes only briefly, but it always does come back. You have to believe that it will, even in the darkest of times. That belief is what is really important.”

Preserving Memories: Hard Work But Necessary

It’s been almost 2 years since our sister Colleen died, and we still feel like we can hear what she would say if we could call her up to tell her some piece of news from our lives. But recently, in gathering some memories of her, at first we had a hard time coming up with stories and remembering specifics. The inability to bring up vivid memories induced panic. It’s only been 2 years, what will happen 5, 10 years from now? What if we have already forgotten or continue to forget funny stories from growing up or some piece of wisdom she gave us? We wanted to know more about how to preserve her memory. Our set of shared experiences is now closed. There is no chance to make new memories.

There seems to be some belief tied to the idea of “moving on” that it is natural and maybe a few feel that it is even necessary to forget the deceased somewhat. But most people continue to have some kind of relationship with the person they lost, and want to keep that person’s memory alive. Figuring out a new relationship with them can be empowering and lead to happiness. In our experience, the pressure to move on comes at the same time that the too short sympathy period ends, and when the condolences dry up, so do the stories that other people share with you about your loved one. Then it can feel like not only do you have “grief brain” - or the distracted, everyday forgetfulness that comes with grief - but your memories that include your loved one seem to be slipping away as well.  

We began searching for ideas and, initially, we came up with the obvious: talk about your loved one often and share stories with others. If you’re like us, memory gets fuzzier as we get older, and repetition helps us to remember stories. We also find that pictures help to recall details, so looking back through photo albums - hard copies or online - can restore memories. We ordered extra copies of a photo book we made for our sister and enjoy looking through it whenever we miss her. Another approach is to write down memories as they come up in a journal or create a memory jar of stories and pictures that you can pick out to view any time.  

In “Passed and Present”, author Allison Gilbert talks about the task of remembering as part of grief and reminds us that “[w]hen it comes to keeping the memory of our loved ones alive, that work is up to us.” She offers unique, concrete strategies for doing so. Some of our favorites among her suggestions include using social media to invite stories about your loved one, such as posting on Facebook on an anniversary and requesting others to comment with their memories, making a playlist of songs that remind you of your loved one, keeping their recipes with an anecdote about them, and making a memory game with family pictures that include deceased relatives to help your children remember them (we were excited to see Shutterfly offers these personalized games!)

{Shane} I have some pieces of jewelry and clothes of my sister’s that remind me of her whenever I see or wear them. I love getting compliments on them because it makes me think of her and what good sense of style she had, and sometimes I imagine telling her what so-and-so said about her fabulous necklace. I treasure gifts she gave me or my daughter. I also have a few things that I gave to her, which came back to me after she died. Some were nice gifts I gave to her as an adult, like a pretty gold tray, and others were gifts I gave to her when we were children that bring back funny memories to me whenever I see them, like the scrapbook of quotes and poems I made for her in high school. I loved making crafts as a kid and since Colleen was my cool, older sister, I often made them for her. She didn’t always want them, like the poor ugly teddy bear I sewed for her thirteenth birthday when she was too old for teddy bears. But she must have appreciated my efforts if it still exists to this day. I wish we could still talk and laugh about all my arts and crafts.

Recently, a fleece sweatshirt of hers that I loved to wear was ruined by my dog. I was so mad at myself for leaving it out, and at the dog for chewing a hole in it - really, what dog mistakes a sweatshirt for a chew toy? I realized then that some of the tangible objects I have that remind me of Colleen will inevitably get ruined or lost or maybe fall out of style and wind up in the back of my closet. That doesn’t mean I want to stop wearing them or using them now, but it does mean I need to think through making concerted efforts to preserve her memory on several fronts, with and without tangible things.

{Jessica} I often find myself holding and rubbing a necklace that Colleen gave me. Sometimes, I reflexively do it and other times when I am thinking of Colleen. I wear the necklace often because if I wear it, then I feel like she is with me. When she gave us all this necklace, she was very sick and knew that she was dying. Some of the thoughts of her bring me back to this time, to her looking so ill and frail and to a very painful time. I get frustrated that I can so easily bring myself back to those terrible memories, yet have to rack my brain to remember that time as children when Colleen snuck dessert into our shared bedroom after I had gotten in trouble and lost my treat. Perhaps it is easiest to remember the sad parts as they are my most recent memories, but I want my memory to only go to the happy times and to the image of Colleen as the beautiful, strong  sister that I miss. I like to look at pictures of her when she is having fun and remember all of those good times. My hope is that I can erase that sickly image of her.

It is hard work to think of old memories and I’d rather just be able to call my sister. I recently found myself having some very sad days when I wanted to call Colleen and get her advice on something but was unable to. I realized in those days that I will go through most of my adult life without her and would come across moments like this often. I decided to just talk to her and imagine what she would tell me and it helped me to move on. I continue to talk to my children about her because I don’t want them to grow up without feeling like they knew her. That is my big fear, that we will get too comfortable in going on without her. I want her to always be with us and on our minds.

Friends and family can help to preserve memories. It is always nice to hear others speak fondly of our sister and we are always looking for new stories and new ways to have her on our mind.  Share funny stories, send along pictures that you come across, or a note that you find. Consider asking specific questions about a deceased loved one to help spark memories. There are parts of their history that only you may know and that are worth sharing. We encourage everyone to be a part of preserving memories of those that have died. And if you have lost someone and want to do more to preserve your memory of them or maintain a connection with them, don’t be afraid to be proactive - whether that means making one of the memory projects mentioned here or simply talking more about your loved one and asking others to share memories with you.

Tell us in the comments section below - What do you do to preserve the memory of lost loved ones?

Simplify and Downsize: Surviving the Holidays Without the Same Cheer

Have you been bombarded with emails and commercials about deals and found yourself wondering if you need another wireless speaker because it is 70% off? As we head into the craze of the holidays - the gifting, the hemorrhaging of money, the overdoing and overeating of everything - we have decided to hit pause and try not to cave to all of the pressure this season. This will be our second Christmas without our dear sister Colleen and it is not something that gets easier. Last year, we left town and avoided much of the holiday chaos, focusing on being together as a family. We have yet to figure out our “new Christmas normal” without Colleen.

Our holiday cheer is a little different now, it comes with some tears and fewer gifts. Our tears arrive at different times and for different reasons. Maybe it’s that we don’t have the great gift ideas that Colleen always had. Maybe it’s that we feel disorganized without her. Maybe it’s that she always picked out a special present for her godchild, but we won’t have the joy of seeing it this year. Maybe it’s when we are pulling together recent family pictures for a gift and she’s not in them. Maybe it’s worrying that they will play the Christmas hymn “Go Tell It on the Mountain” at church and we will lose it because Colleen always jokingly belted that one out. After you have seen your sister get through her “last Christmas”, all of the stuff that we buy and receive just doesn’t seem to matter.

Many find it difficult to navigate the holidays after a loved one has died. As we learned from this recent article, there is no “right way” to survive the holidays. As suggested, time and being honest about your feelings can help. There is an underlying grief that recurs with the holidays and it is exhausting to pretend to be full of holiday cheer. We no longer feel the need to bake 10 kinds of cookies, but we still struggle with the outside pressure to have a perfectly decorated house and the appropriate amount of presents. Don’t get us wrong, we do like gifting and still call our Mom “Santa,” but we are doing less of it all - less baking, less gifting, less wrapping, less cooking. Instead, we want to spend time putting together thoughtful gift ideas and writing down memories.

Our focus this season is on simplifying and downsizing Christmas. This may be our best idea yet! And we are not alone. Check out this blog post that guides us to a simpler Christmas, sharing multiple links about how to become more minimalist: The Helpful Guide to Simple Christmas Links

We are hopeful that we can commit to this trend and that it will reduce stress and allow time to acknowledge our grief. Our happiness comes from our loved ones, not all of the things, and we want to remember that each year.

In many ways, losing our sister helped us find more meaning in family and appreciating life - and isn’t that a big part of the holiday spirit? So for that, we are grateful. Although we wish we hadn’t gone through all of this pain to get here, it has helped us realize what is important to us: keeping things simple so that we can enjoy the holiday season and enjoy each other.

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.