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.

Our Motivation Behind Losing a Puzzle Piece

We started this website just four months ago, on March 17, 2016. Since then, we have been connected with great people and groups and heard from many different perspectives in caregiving and grief. As we pause to take stock, we realize that we have personally benefited greatly from this website and find it rewarding to maintain. Some have wondered why we are doing this and what our goals are, so in addition to what we explained under “About Puzzle Pieces,” we wanted to open up more about our mission behind this all.

We are aiming to give other young adults and siblings the stories and resources that we were looking for when going through our acute caregiving experience. When faced with the reality that there were no more treatment options for Colleen, we never found stories, humor, and resources focused on siblings going through such a sad and difficult time. We aren’t doing this as a “tell all” for us. We were quite anxious about sharing our story, opening up personally, and drawing attention to ourselves, but felt that our mission to help other young adults and siblings faced with similar challenges trumped these fears. In the darkest times, we didn’t feel that we could relate to other peers who were blissfully planning their lives. We simply want others to not feel isolated like we did. Young caregivers and siblings are amazing and deserve attention in these areas of caregiving and grieving.

We also want to share not just our experience, but advice and perspectives from others by featuring guest bloggers. And we are learning from them, too, as we continue to navigate our grief. So far, we have learned about a mother's perspective on watching her children become caregivers and seeing that they can provide comfort, great care, and respite to the main caregivers. We have learned that music can begin the healing process, that accepting death is necessary to face reality and learn to live with it, that telling the truth about your relationship with your sibling and remembering the hard parts can help you acknowledge their life and fully grieve, and that patients experience the stages of grief as well. We have also heard from experts about how ambiguous loss may affect young caregivers and how to talk to children about serious illness or death.

You may think that we have a team of writers and interns but, unfortunately, it is just the two of us, scrambling to keep up with the self-imposed Thursday deadlines while ignoring the growing mounds of laundry and weeds in the yard, the dinners that just won’t make themselves, and the dogs and children that demand walks and attention. Although this endeavor may be costing us in some ways, it is paying us in connections, motivation, and knowledge. We aren't generating any money from this site and we have no sponsors supporting us, but that's not why we are doing this anyways. The websites, organizations, or products on our Resources page or in blog posts about comforting products and how to help a friend are included only because they truly made a difference to us or we wish we had found them sooner. In addition, we are so grateful to Working Daughter for interviewing us, to Henry Ford Health System for listing our website on their new family caregiver resources webpage under young adult and end of life resources, to our high school alumnae newsletter, the Marian Monitor, for highlighting our website, and to JAMA for publishing our perspective on hospice care, all of which have done so free of charge and free of compensation, but helped us reach an even larger audience.

It’s not about the money, money, money....
— Jessie J Lyrics to "Price Tag"

Our motivation for this website and this community has always been Colleen. She accomplished a great deal in her 39 years while also battling cancer. Every day, she motivates us to try harder, keep going, and make the most of our 24 hours in the day. The least we could do is be even half as ambitious and brave as she was and highlight areas that we feel are in need of attention and support. 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.

We have learned a few things the hard way in these past few years. We learned that some problems in life are too big to solve. Even sisters can’t fix problems like cancer. It has been difficult to come to terms with, but sometimes the best thing that we can do for a sibling is not to try to fix it all but learn to just be present. We were forced to learn to “just be” with Colleen, to support her, to love her and that was all she needed in the end. If we made stickers like the the popular Keep Calm campaign, ours would say, “Keep Calm and Be Sisters.”

Image courtesy of  www.keepcalm-o-matic.co.uk

Image courtesy of www.keepcalm-o-matic.co.uk