Caregiving can be tiring and stressful. Young adult caregivers like us may be simultaneously trying to juggle the normal chaos of feeding/bathing/dressing/driving/disciplining their children, staying up to date on school activities, cleaning and maintaining their houses, showing up and participating in their careers, and keeping up their marriages….oh, while also caring for someone who is injured or seriously ill. We were thrown into this world and with it came many challenges as we helped our sister who was dying of cancer.
We have already talked about the “to don’ts”, our recommended entertainment to help you laugh, products that may give you comfort or save you time, and thoughts on home organization as a coping mechanism. This week, we wanted to share a few things that helped us in our communication and organization of our caregiving efforts. How did we keep it all straight? We didn’t….but we sure tried.
- Email or an easy form to communicate updates. We found email to be a quick and easy way to send updates to each other (our sisters, the in-and-out-of-town caregivers). We shared updates about how our sister was physically doing, her newest symptoms, thoughts on what we needed to do differently, lists of items to purchase, and recipe ideas as well as venting and expressing our sadness, stress, and even anger. If you have a few people engaged in the caregiving process, it may be helpful to setup an email list or a way to communicate. We know some people utilize the website “CaringBridge” to keep family members informed. We chose to delegate the task to one of us to write email updates to friends and family.
- Delegate. If you are the primary caregiver, but you need more low sodium chicken broth, or another humidifier, or a new bean bag chair (or that’s just us?), put someone else in charge of getting those things. Your family members can do things from afar. Amazon Prime - hello! We were constantly ordering things when we couldn’t be at home and loved feeling useful. Or, send someone else to the grocery store for you if you can trust them to follow a specific list. And as noted above, we occasionally delegated the job of “family communicator” or “medical team liaison.”
- Create a shared calendar. We used “Google calendar” to keep track of our travel plans and to know that we had sisters arriving to help out on the home front. It’s also nice to see the calendar and know that someone was on the way to provide relief to the main caregivers at home. You may also have many friends wanting to visit and you can keep track of visitors here so as to not overschedule yourselves. Apparently, as this article outlines, there are lots of shared calendar apps in addition to Google calendar.
- Share a document with questions for the medical or hospice teams. We used “Google docs” to share a document with a long list of questions in preparation for meeting with Colleen’s hospice team and it was nice to all contribute, write down what we were worried about, and see what others wanted to know. Having your thoughts and questions organized going into a meeting or appointment can help make you feel more in control and get more out of it.
- Keep a journal of medications and symptoms. We made a chart and wrote down the time and dose of medications, symptoms, and other tasks so that everyone present could see what any other caretaker had done. Here are several types of charts that are free to print. This made it easier to keep track of everything when others were out of the room or our minds were occupied by other thoughts and emotions. It also helped when speaking to medical and hospice workers that we were able to reference times, doses, and patterns.
- Set aside day time for important conversations. We were often tempted to discuss plans, hold family meetings, and have other necessary conversations in the evenings after dinner, but we learned that we were usually the most tired and run down from the day at that time. Plus it could be difficult to fall asleep after having these discussions right before bedtime. We tried to implement a rule that there was “no talking” (i.e., no serious talks) after 9 PM, and to save the planning and decision-making for daylight hours whenever possible.
Some of these tips may seem like, “duh, of course,” but you’d be surprised at how easily you become overwhelmed and can’t think or make any more decisions. Hopefully these are simple tasks that will help you in your caregiving journey.