How To Be an Organized (And Sane) Family Caregiver
By Sally Abrahms
The last thing a family caregiver (or anyone else) needs is a lecture, but how about some gentle advice? Want to be in control and ready for the parent unknown? It’s time to get organized!
Do you know the medications Mom takes, the names and numbers of her doctors and accounts (credit cards, insurance policies, retirement information) contacts for neighbors, her financial advisor, and other service providers?
How about the placement of vital documents, from a healthcare proxy to the deed to Dad’s house to power of attorney to the key to his bank vault? In an era of HIPPA, multiple passwords and an infinite number of potential storing places, you need to know where everything is.
If not, in an emergency or when it’s required, you may be scrambling and miss important information. Not knowing where or what will only compound your stress. It sounds obvious, but before you become a private eye, ask your parents where they keep their important documents.
Let’s say a sibling is in charge of doctor visits but Dad is going to stay with you for a few days. Or, everyone in the family wants the latest update, medical or otherwise, without endless phone conversations or emails.
Wouldn’t it be a lot easier and more efficient to have one site where everyone could log on and find what they need, list tasks they need done and people who volunteer to do them? “Care coordination” sites do just that. (Check out “A Family Caregiver’s Guide to Care Coordination” from nextstepincare.org, LotsaHelpingHands and CaringBridge.)
Getting organized may seem like a daunting task, but there are many ways to approach it. When you’re still in the gathering stage, checklists can be effective. Many sites have them.
One of my low-tech favorites (and not terribly original ideas) is a notebook where you put all your parents’ information. Of course, unless you scan or Xerox pages, only one of you has access to it.
In a Personal Health Record, as it is called, you write down symptoms, times and dates, the most current medical information and test findings (laboratory and radiology results, hospital discharge summaries), allergies, medications, copies of an advance directive, living will, power of attorney for healthcare, chronic conditions, and past surgeries, for example. This can be a lifesaver for emergency room visits, medical consults, questions to ask physicians.
Some websites (Microsoft HealthVault, CareSync, MyKinergy) let you store health information from an array of providers; you can access several through apps.
The CareZone app can track your parents’ medications, contacts and has a calendar and to-do list. RX Personal Caregiver lets you manage your Dad’s prescriptions and get medical alerts. Some have free and paid versions with more features.
Another option is cloud-based storage services such as Dropbox and Google Drive that allow you to share files and folders across devices (smartphone, tablet, computer).
One Place to Store and Organize Documents
Look for sites encrypted for safety. They’ll let the user allow access to specific people and usually allows you to decide under what conditions and parts of the site they can see.
Some sites let you upload wills, deeds, directives, passwords, frequent flier numbers and more. You can add a copy of your driver’s license or passport and anything else that’s important to you or to Mom. (It could even be her family-favorite lasagna recipe!)
Three sites I particularly like are:
1. Estate Map
This site was started and is run by an attorney. There are categories ranging from personal health and life to the estate to information on assets. You can get a free one-week trial; the cost is $96 for year one and then $24/yr. to renew.
The site starts with a short personal assessment (“do you have a will, healthcare proxy …?”) and then makes recommendations on what to pursue. Missing a legal or health form? There are links where you can download them from your state.
There’s also space for Mom to write her own obituary or talk about what she wants, or doesn’t want, at the funeral or to give instructions about her possessions.
What makes this site unique: thousands of articles on all aspects of planning, from end of life checklists to in-home care costs.
You will receive step-by-step guidance on information you should be storing and end-of-life planning. Three people Dad designates have access to his file after he dies; if he chooses they can have access to some information while he is alive.
If there is a legislative change in his state or documents are out of date, he receives alerts and reminders. One ghoulish feature: posthumous email messaging.
Get Yourself Organized, Too
While you’re getting their house in order, it makes sense to do the same with your documents. Whatever age you are, your children, friends and relatives will be grateful—just in case.
I recently gave the names, numbers, and copies of all of my documents to one of my children, along with my end-of-life wishes. A couple of years ago, when I initiated this, there was a lot of eyeball rolling and denial. This time, my son thanked me and promised he would keep them in a safe place. Now I just have to remember to update the list.
What kind of organizing system have you found works for you? What do you wish you had to help keep you organized when caring for your parents?