By Professor Naomi Cahn, Harold H. Greene Professor of Law, George Washington University Law School, & Rev. Amy Ziettlow, Affiliate Scholar with the Institute for American Values
You’ve heard all of the advice about backing up your computer regularly, making sure that you have your passwords stored in a safe place, protecting yourself against digital identity theft, but what does that have to do with providing care for a person with special needs?
Let’s count the ways. First: Resources. Much of the information you need is online, and your personalized data may be password-protected. Anyone who has ever been to the My Social Security website (https://www.ssa.gov/myaccount/) knows how easy it is to find out what you need to know on the site. There’s now even a special Social Security website available just for smartphone users. As a caregiver, you have most likely engaged in copious amounts of disease-specific research as well as caregiver networking, which leads to our next suggestion:
Second: Storage. You want a safe place to store all of that communication that you’ve had with all of the professionals ̶doctors, therapists, educators, fellow caregivers ̶who are helping you and your loved one. You need to make sure that all of this information is accessible to you, and to someone else, in case something happens to you. People can set up computer files, organized by topic, on a computer or in the cloud for easy reference. You may even have created spreadsheets to track medications and the signs and symptoms of the disease. You may keep a digital log of all of the meetings you’ve had with the various professionals, including the questions you want answered, and the advice they have shared with you.
Third: Support. You can find and give much caregiving support online. In addition to connecting with communities and friends through Facebook, you may be using CaringBridges or a similar site to help you coordinate care and mobilize support from scheduling transportation to meals. Also, many caregivers also find simply living vicariously through the status updates, tweets, and Pinterest boards of their friends to be a supportive escape from the daily demands of caregiving.
Fourth: Communication. You may be using social media to let people know what’s going on in your lives. As you do so, remember that your own comfort level with sharing your personal story through digital media and your loved one’s may be different. While you might have been comfortable sharing your life’s ups and downs regularly on Facebook and Twitter, consider some of the precepts of general digital etiquette advice. Tell your story, but be careful about how much you tell about the personal details of your loved one.
And fifth: Legacy. If your loved one has her own digital accounts, you need to keep track of those and converse with your loved one about what they value and why: Specific digital pictures? Specific emails? Specific social media profiles? How does their digital footprint speak to the character of their life story? The legal and emotional issues involved in digital property caregiving and appropriately shepherding the digital narrative assets (“DNA”) are complex – and deserving of another column. (See “Don’t Forget those Online Records!”)