A Free App for Caregivers – Caring Village

In 1996, Hillary Clinton published a book called, It Takes a Village: And Other Lessons Children Teach Us. If you were alive then, you know that the book was about how it takes an entire community to raise children, not just the parents or grandparents, guardians, teachers, caregivers, etc. I would also argue that it takes a village to manage a chronic or serious illness. While the primary responsibilities seem to fall on one person, the journey wasn’t meant to be traveled alone. It includes doctors, nurses, aides, therapists of all kinds, family members, friends, clergy and many others you may never meet.

Technological advances give caregivers options to communicate and coordinate with family and friends about care needs. Although there really doesn’t appear to be a one-size-fits-all app out there, in the coming months, I’ll profile several that you can use in tandem or alone to fit your needs.

The first app I wanted to mention is Caring Village. It is free and available for both Apple and Android phones. It also has an online dashboard if you prefer working from a computer.

The application allows you to set up a community, or “village,” for your loved one that includes calendars, to-do lists, a journal, a medication list, a secure messaging feature and a place for documents. As the administrator, you can assign different roles for people you allow to join, which determines their level of access to the information.

Here are some things I thought that were interesting about the app:

• Members – Members can add a photo to their profile, so you know who they are. You may not know what your father’s colleague at work looks like. The first time he offers to drive him to the doctor, you can take a quick pic or ask him to upload his photo.
• Wellness Journal – The journal section allows you or others to add a few notes each day (or whenever) about how your loved one is doing. It also allows photographs. When your loved one’s health changes constantly, the journal could be a helpful tool to keep things accurate.
• Medication List – The list would be especially useful when medications are changing or your loved one moves between care facilities. You need to keep track of inventory and expiration dates. Photos are allowed here as well.
• Calendar and To Do Lists. The calendar is nice for the “village” to know of upcoming doctor appointments or procedures or if volunteer items are needed. The To Do Lists have reminder alerts for you and can be delegated to others (ask for a volunteer) for assistance.

Before using the app, you should consider overall how you intend to use the dashboard/app. Even with the most restricted level of membership (“Friends”), there is a great deal of access to the app’s information. For example, if you plan to load sensitive documents to the site (e.g., doctor’s notes from a recent appointment, Durable Power of Attorney, etc.), you may not want a neighbor who offered to drive your husband to the pharmacy to see that information. You either have to choose not to use the document feature or restrict who becomes a member. There is helpful chart in the Help Center about Role Access.

Have you used the Caring Village app? If so, what was your experience?

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Caring Village, LLC does not sponsor You Don’t Have to Join the Circus and was not aware of this post prior to today.

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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?