How Much Should Caregivers Share on Social Media?

Social Media is a part of most peoples’ daily lives. It is how we interact in our relationships and obtain information. For you to not use Social Media as part of your caregiver updates might be challenging today, although not impossible. However, before you post on Facebook that riveting photo of your loved one’s 35, albeit dissolvable, sutures across his leg, you may want to discuss what is shared about his surgery and what is kept private.

Here are a few reasons for possibly showing some restraint:

• Do you and/or your loved one want unsolicited advice? It just seems like human nature that we automatically want to tell someone about what happened to our brother’s aunt’s sister’s neighbor’s dog’s cousin who had the same thing and died from it two months later. I’m embarrassed to admit that I’ve done this, too. It is obviously meant as a desire to help. However, if you and/or your loved one don’t want, or need, to hear these stories, you may choose to keep some of the details of his or her condition private – at least, for a little while.
• Serious illness is sometimes not pretty. Let’s be honest, serious illnesses are not easy on the person who is sick or on the one who has to watch them go through it. After awhile, a caregiver can become desensitized to even the toughest situations – because you have no choice. I have seen people write or talk about their loved one’s vomiting, diarrhea, fainting, nakedness, hallucinations, odors, adult diapers and all kinds of other things as if they were discussing the weather. If you have gotten to that point, you might want to consider having someone you trust be a sounding board for broader Social Media posts before you share something that might later embarrass you or your loved one. While I’m not about sugarcoating the truth or hiding the very real suffering involved in serious illnesses, you may want to reflect on where your line is between transparency and the dignity of your loved one.
• Do you have all the facts? If you receive bad news or difficult information, it may be better to take a little time to process what you’ve heard before sending a message out on Social Media. This might be a good time to also allow someone else to speak on your behalf who has some distance from the situation and can contact the right people at the right time.
• Is your loved one still working? If your loved one is on a leave of absence from work and/or on short-term disability, employees are generally expected to check in during their absence. Most employees want to keep those conversations professional and factual. However, if colleagues have access to Social Media posts about your loved one, you should consider what details are being shared with them. You would be amazed what people tell their manager about what they see on Social Media (see the second bullet-point above). If you include work colleagues on the Social Media account, you need to assume the information may (and likely will) get back to your loved one’s boss – no matter how well-intentioned their motives may be.

In my experience, my family released information about my mother based on a tiered system. A small group was part of the inner circle and had access to the most information. The next tier was slightly larger, had fewer details but knew about appointments, her location, etc. The final group was the largest and was made up of neighbors, friends, coworkers, church members and extended family. This group receive frequent updates on her condition, both good and bad, but not with excessive details.

Given some of the apps and tools available today, I think there are ways to differentiate the intensity of the message so that the right information reaches the right people in your loved one’s life without sacrificing the level of privacy you may wish to maintain. We’ll discuss some of those tools in upcoming articles.

How have you used Social Media in your caregiving duties? Do you think privacy is even important today?

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