Five Valuable Resources for Caregivers in Crisis

How to Harness the Power of Social Media

social
Other People Can Become Your Most Valuable Resource

When disaster strikes, how does a person decide what to share on social media and with whom to share the information?

Ultimately, the decision should rest squarely in the hands of the person who is sick. In the case of an ill minor, the decisions rests in the hands of the parents. While our first impulse might be to log on to to Facebook and announce “#Cancer sucks, and Bobby has it”, it’s probably not a good idea. 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 that 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.

At first, it was easy to keep people informed about Pedro’s fight. 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)—prompting one of my daughter’s classmates to say to my daughter, “Hey, when your dad dies your mom can marry my dad then we’ll each have two parents.”

About this time, I purchased a laptop computer that I carried with me and kept hooked up to the phone line in Pedro’s hospital room (wireless networks had recently made their debut). In this way, 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 I knew it I got 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 (it’s much easier to write an update than it is to answer numerous phone calls) and build a community of boosters who will support you during your season of caregiving. Family members, friends, and even strangers can become a powerful resource for caregivers.

Five Tips 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 them what they want. A close friend who had 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).

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:Click the link to find five valuable resources for caregivers. #socialmedia, #caregiver, #caregivers, #cancer

  • 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 they were Christian, Jewish, Buddhist or atheist—it felt wonderful to know that people cared. Depending on the wishes of the person you are caring 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 informaiton (remember, YOU can control who joins sites or groups). You can also prepare a statement and link 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.

Don’t let fear keep you from reaching out to others. If you have other ideas about creating a community of support, please share them with us by commenting below.

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Caregiver Resources – Write Things Down

For when your mind stops spinning.

New caregivers: Write down the advice you receive – it might come in handy later when you can deal with it!

Write things down.

That’s probably one of the biggest and best pieces of advice I can give any caregiver.

I distinctly remember sitting across from the Head Oncologist of my four-year-old son’s teams (three groups) of doctors.  He was an attending physician/professor and coordinated two hospitals’ treatment protocols in connection with a local university.  Impressive?  All I remembered about him (the preceding information came later) for the first year of treatment was that he was bald and shot words at me like lightningClick here to read more about that!

My mind reeled that first week of diagnosis, days of exams including some pretty horrific-sized needles, some life-saving moments and then launching the treatment protocol.  I remember nurses and doctors advising me to “take care of myself.”  They also offered many phrases into the air while they zipped in and out of our isolated room, scrubbing thoroughly and muttering about This Society or That Resource.  I heard them.

The words were just beyond my grasp.

We floated along in the surreal fuzz that envelops parents of critically ill patients like a shroud.

Children’s Miracle Network was mentioned.

Candlelighters came up.

Make-a-wish foundation, I heard, but given the children on the ward that were getting wishes granted, I assumed it was for the dying.  In the denial stage I was in, it never occurred to me to check into it.  My child couldn’t die…could he?

Ford Family Foundation brochures were in the parent waiting room.

We fought daily for the life of our child.  These phrases continued flying over our heads.

We missed them.

Four years later, my son, with normal hair, energy and health, was watching TV with this wearied mom when something about a kid with leukemia going to Disneyland through one of the above-mentioned charities.  Why?  Because the kid wished for it.

“Mom!” exclaimed Andrew, “Why don’t I get to go to Disneyland?  I had leukemia!”

To this day, I don’t have a justifiable answer to that.  It’s simply that I was so overwhelmed with saving my son’s life, I never thought of getting things along the way.  By the time I did, no one was talking about it any more.

Man, I wish I would have written stuff down as it was thrown at me over the top of a mask, across the exam table or waved at us as we exited the hospital.

The resources are there.

Write them down and the next time someone asks you how they can help you?  Hand them the list and have them check into it for you!

 

Caregiver Spotlight

We hope you click through on some of the links above – these are great resources!

 

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Find Valuable Resources at Caregiver Connections

Second Wednesday of the Month Highlights Resources

ResourcesResources for Caregivers

During Pedro’s battle with cancer I often felt clueless. For example, I didn’t know that hospitals made arrangements for air ambulances. I didn’t know that the Leukemia and Lymphoma Society gave grants to help family members travel. The one cancer caregiving resource that I knew about (Ronald McDonald House) didn’t help out families of adults with cancer, so I figured we were on our own.

I didn’t realize that massage, aromatherapy, and essential oils could benefit my husband (and ME, a stressed-out caregiver). Caring Bridge? Never heard of it. I do know that I often felt underwater and on the brink of overwhelm.

Maybe you’ve acted as a caregiver for years, or maybe just a season. Maybe you enjoy researching things, or maybe you just feel a desperate need to figure something out. Whatever the case, we can learn from each other. This week’s link up is specifically for blog posts or pages that have useful resources for caregivers.

A ‘useful resource’ would be a post about how you found help from a helping organizaiton or agency (such as the Leukemia and Lymphoma Society). It might include lists of local resources, hotlines, blogs you’ve discovered, or advice. If your caregiving journey has included active patricipation in support groups, share your experience with us!

Guidelines

In order to make this link up user friendly AND pertinent to caregivers and their needs, please make sure that what you link up follows the guidelines for the week. This week is for RESOURCES FOR CAREGIVERS (if your resource has a story wrapped around it, that’s fine). If you aren’t sure if your link is appropriate, feel free to email me at anita at blessedbutstressed dot com and ask!

We will delete links that aren’t on topic in order to keep the link up a true community resource. We WILL contact you first and let you know that we will remove your link. For non-caregiving related links, we invite you to participate in the Inspire Me Monday link up over at www.anitaojeda.com.

By linking up, you agree to receive weekly reminders about the link up.

Do look for the caregiver boards on Pinterest

Do link up more than one post!

Join our Facebook community, too! It’s easy, just click that button over on the right! —->

Community Spotlight

This week’s spotlight shines on Dr. Michelle Bengtson, a neuropsychologist, writer, and caregiver. She interviewed a dementia caregiver, and in this post, the caregiver shares resources for dementia caregivers. Make sure you check out both the article and Dr. Bengtson’s blog!

Link up Schedule:

1st Wednesday of the month: Caregiver Stories

2nd Wednesday of the month: Resources

3rd Wednesday of the month: Caregiver Self-care

4th Wednesday of the month: Caregiver Encouragement

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