If you're caring for a family member, that makes you a family caregiver. These five hacks will help you harness the power of social media. #familycaregivermonth #caregiver #burnout #socialmedia #caringbridge #lotsahelpinghands #socialmedia

If you’re caring for a family member, that makes you a family caregiver. These five hacks will help you harness the power of social media (without breaching privacy). Family caregiver self-care is important to maintain your health.

November marks another National Family Caregivers Month, a time to recognize, support, and listen to family caregivers. Everyone talks about a cancer journey, or the toll the aging process takes on our nation. But this month we want to celebrate, listen to, and find new ways to celebrate the family caregivers in our midst. Each Sunday of November you’ll heart from a different family caregiver on ways to avoid burnout, care for oneself, or make crucial decisions. You can also listen to the Self-Care Hacks podcast for interviews with family caregivers.

If you're caring for a family member, that makes you a family caregiver. These five hacks will help you harness the power of social media. #familycaregivermonth #caregiver #burnout #socialmedia #caringbridge #lotsahelpinghands #socialmedia

Oops! How NOT to Use Social Media

“I just deleted your comment,” a friend messaged me.

“Which comment?” I typed back. “I had forgotten I’d commented on anything.”

“In the future,” she typed back, “DO NOT make any mentions about my health or any health conditions I may have.”

“I’m so sorry,” I apologized, still wondering what in the world she referred to. I ended my apology with a sad-faced emoji. She didn’t respond.

Hours later, the incident still bothered me like a burr under my saddle. Finally, I remembered what I’d said. On a post where she asked for prayers for an unspecified health condition that required surgery, I had offered my assurance that I’d be praying for her and asked if this was the same condition she’d had a biopsy for several years back.

Because she had used the words ‘health condition’ and ‘surgery,’ I assumed mentioning a previous procedure that she also posted online about would be fine. Evidently not.

I learned my lesson. Social media posts have unspoken boundaries—just like talking about family members. I can complain about a family member to someone, but if someone else complains about my family member, I get defensive and irate. You know what I mean, right?

Who Decides What to Share?

Ultimately, the decision should rest squarely in the hands of the sick person. In the case of an ill minor, the decisions rests in the hands of the parents. Avoid the impulse to log on to Facebook and announce “#Cancer sucks, and Bobby has it.” Especially if ‘Bobby’ is your husband and you haven’t discussed it with him yet. Or even worse, if ‘Bobby’ is your cousin’s child and your cousin has no idea you’ve announced his child’s medical condition to the entire world.

When my husband, Pedro, received a diagnosis of non-Hodgkin’s Lymphoma 16 years ago, Mark Zuckerberg hadn’t even finished high school and Jack Dorsey had yet to create Twitter or tweet about anything. Social media consisted of emails and local gossip.

When we broke the bad news to family and close friends, we either did it in person or called them. We emailed others who we thought would like to know about the diagnosis.

Keeping people informed about Pedro’s fight started out smoothly. Gossip and the occasional phone call did the trick. Unfortunately, when his condition worsened and we had to travel over a thousand miles away from our local support network, information sharing got complicated.

From Mild to Wild

Phone calls to our local pastor and my parents (who had moved in with us to take care of our young children) kept people informed of our prayer needs and Pedro’s ongoing condition. Unfortunately, this word-of-mouth method of passing on information resulted in rumors of Pedro’s eminent demise (though no fault of either our pastor or my parents). One of my daughter’s classmates told her, “Hey, when your dad dies your mom can marry my dad then we’ll each have two parents.” Um. NO!

If you're caring for a family member, that makes you a family caregiver. These five hacks will help you harness the power of social media. #familycaregivermonth #caregiver #burnout #socialmedia #caringbridge #lotsahelpinghands #socialmedia

About this time, I purchased a laptop computer I carried with me and kept hooked up to the phone line in Pedro’s hospital room. I could send out emails with up-to-date alerts as to how Pedro fared.

Unbeknownst to me, many people forwarded my emails to their friends, and before long I started receiving emails from strangers in other states and even countries asking to be added to the email list or just dropping me a note to let me know they were praying for Pedro.

Also unbeknownst to me, someone back home started a fund to help our family out. The fund allowed our girls to visit two times during Pedro’s illness—once at very short notice when the doctors advised that the family gather to say their goodbyes.

Social media has undeniable power and clout and it can play an important part in helping you, the caregiver, maintain your sanity. Using social media wisely forms the backbone of family caregiver self-care. Writing one update and sharing it with multiple people saves time and emotional bandwidth. You can also build a community of boosters who will support you during your season of caregiving. Family members, friends, and even strangers can provide helpful resources for family caregivers.

Five Hacks for Using Social Media in a Crisis

1. Decide who will keep people informed.

Have a discussion with the person who has cancer and ask him or her what they want. A close friend who helped us during Pedro’s illness received a cancer diagnosis several years ago, and she chose to act as gatekeeper to information (her husband had no interest in social media, while she already had a presence online). On two occasions she invited me over to update her support group because she couldn’t get the words out on her own.

2. Choose a social media source for sharing information.

One of my former students enlisted her entire Facebook network to cheer her on in her fight against breast cancer. Other friends from a different generation have chosen to form private, invitation-only groups. The following resources should prove useful:

  • Caringbridge.org offers free, personal and protected sites where family members can visit and leave messages of support. The personal site creator can share blog posts and approve those who want to join the site. Caring Bridge also offers a support planner that caregivers can use to organize family and friends who want to volunteer.
  • Facebook.com offers a free social media account. Be judicious with this powerful tool and pay close attention to privacy settings unless your loved one wants the entire world to know about his/her latest bout with vomiting. You can also use this tool to start a private group.
  • Lotsahelpinghands.com is another free service offered to caregivers. Its primary purpose is to match volunteers with those in need and to help caregivers build a community to help them in their season of caregiving.
  • The phone tree, an old-fashioned but effective method of communicating whereby you enlist the help of several key people who commit to calling people on a list when there is a need to ask for help, prayer or give information. Many faith communities have a phone tree system in place—if you are part of a faith community, check with the leaders to see how the phone tree works.
  • Email updates still serve as an effective way to keep key people informed.

3. Set boundaries and guidelines.

In retrospect, I don’t think I would have done anything differently. Neither Pedro nor I minded that people from around the world knew about his condition. Whether Christian, Jewish, Buddhist or atheist—it felt wonderful to know that people cared. Depending on the wishes of the person you care for (or, in the case of a minor, the wishes of both parents), you can limit access to the information you share. Do this by controlling who sees your posts or by including a note at the beginning of each email asking that those who are privy to the information not pass specific information on to others.

4. Get the word out.

Bad news travels fast, so this should pose no problems. Set up an automatic response to all emails informing people that you will be unavailable for a time. Direct them to your caringbridge site for further information (remember, YOU can control who joins sites or groups). You can also prepare a auto-response to text back to those who text you for updates. The same goes for voicemail greetings. I hate talking on the phone, so I’d much rather leave a voicemail message asking people to check out the Internet site. This frees me up to focus my attention on my loved one.

5. Don’t be afraid to ask for specific things.

The power of social media in creating a support system lies in your ability to ask. Generous people will respond.  Ask for specific things. At one point, Pedro’s white blood cell counts weren’t going up at the same time he had a blood yeast infection. I shot off an email asking people to pray that his white blood cell count would go up.

Ask for volunteers. If you need someone to take you to the airport or a doctor’s appointment, or babysit your children, don’t be afraid to ask. This Caregiver Helpers Template will help you organize offers of assistance and match them to things you need done.

You Don’t Have to Journey Alone

Acting as a family caregiver can exhaust you and stretch you in ways you never imagined. But you don’t have to journey alone. If you don’t have the resources or time to enlist help, ask a friend or family member to help you get started.

A support network plays a key role in helping caregivers and patients alike. Five tips to get you started. #familycaregivermonth #caregiver #selfcare Click To Tweet

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28 Comments

  1. Being careful about what we share goes for good news, too. Years ago a lady at church lamented that she didn’t have a chance to share the news of her pregnancy with friends because word got out and spread so rapidly. This was before FB and Twitter, too. I had never realized that I might be stealing someone’s thunder or infringing on their joy by sharing their good news. But I’ve been more careful about it since.

    I’m thankful for all the ways to let people know news or needs or prayer requests now. It used to get so exhausting to make multiple phone calls with the same information.
    Barbara Harper recently posted…Finding Time to Read the BibleMy Profile

  2. Anita, you always have some good advice to share, and I’m sure some of it came from trial and error in your own life. Thank you for sharing those tips so that we don’t have to go through our own trial and error. Thank you for being so generous as you seek to encourage and share what you have learned with us. Blessings to you, dear Anita! xo

  3. Social media is tricky. While it CAN be used to help keep friends and family informed about health issues, privacy can become a huge problem. I have been avoiding all social media lately. Too many hurt feelings. The tips you present here are excellent. They should help to prevent misunderstandings.
    Laurie recently posted…IronmanMy Profile

  4. This was so informative. I didn’t know about some of these options out there to keep people informed. Caregivers need all the resources they can have to make their job easier. Looking forward to this month’s articles.

  5. I love all social media platforms except for Instagram! A blogger must have but I just can’t seem to grow on there either. Have a good week xx

  6. Social media really is a game changer in our lives today. Things that we did not need to worry about suddenly have rules of etiquette that we need to learn and we usually learn them by trial and error. My godmother passed away 2 years ago and when my sister called to tell me, I took to Facebook to post a memorial tribute type post to her. She was an amazing lady and wanted to make sure all knew that! . I was completely mortified with embarrassment when my sister phoned me immediately upon seeing my post to tell me that my godmother’s grandchildren had not even been informed yet and how could I go post that on Facebook? I immediately deleted my post and will never ever share anything like that again. On the flip side, I never share any health related anything on social media because I just don’t like it. These are really great tips to help navigate the very muddy waters of social media etiquette and health issues. Thank you for sharing it!

    Shelbee
    http://www.shelbeeontheedge.com

  7. I love that you’re addressing this topic, Anita. My friend’s f-i-l was in a bad accident Saturday, and they set up a Caring Bridge account the next day. It’s so helpful to be able to hear the news as the children put it out, instead of all of us texting each other randomly and spreading rumors.

    And yes, knowing what NOT to say is a tricky minefield too. A close friend of mine recently saw her pregnancy announced on FB by someone else, when she hadn’t announced it herself yet. She was aghast! (And the person took down their post for the save.) 🙂
    Lisa notes recently posted…Fiction and Nonfiction Books that Go TogetherMy Profile

  8. When my husband was diagnosed with critical aortic stenosis at age 59 (and a cancer nodule discovered in the lung in pre-testing) – he didn’t want his battle broadcast. A handful of people were slowly drawn into the journey – people who believed in healing, people who didn’t use fear as a currency. It was very delicate negotiating his wishes – and needs for emotional support as a care-giver/support during this journey – but God made a way for both those needs to be fulfilled.

  9. Anita, this is such good information! Communication has come a long way since telephone trees, hasn’t it? I love your suggestion to put one person in charge of the messaging. When I was handling everything for my parents before they died, it was so helpful for one of my sisters to keep our large family informed of important developments along the way.
    Lois Flowers recently posted…Is It Time for Stuffing Season to End?My Profile

  10. Anita, what a balanced, practical, thoughtful post. I watched some dear friends walk through the loss of a daughter last year. It was so painful, but there were ways social media and places like CaringBridge was a benefit to them, getting information out so others could read updates without my friends having to update each person individually. I so appreciate your wisdom shared here, friend.

  11. Anita, hi! These are such important guidelines. How good to set them up ahead of time before we’re in the heat of the moment.

    CaringBridge has been a superb help for some that I love. What a blessing to connect in that way …
    Linda Stoll recently posted…Let’s Talk TurkeyMy Profile

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Anita Ojeda

Anita Ojeda juggles writing with teaching high school English and history. When she's not lurking in odd places looking for rare birds, you can find her camping with her kids, adventuring with her husband or mountain biking with her students.

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