North Meets the South
When my husband and I met fifteen years ago, we knew that our married life together would involve a great deal of travel between the North and the South. My husband was born and raised in South Carolina, where his family remained. I, on the other hand, was born and raised in Upstate New York, where my parents still lived. Being close to family was always very important to us but we realized early on that being close to one side of the family would put us farther away from the other side. There was no perfect solution to these location logistics. But, as a newly married couple, communication for long distance caregivers was not a specific need.
However, staying closely connected was a priority for us, no matter where we lived. We had to get creative and stay intentional with our communication. If we were going to make the 900 miles that separated us, not feel like 900 miles, we were going to have to explore different methods to stay connected. At the time, we had no idea how important long distance communication was going to be.
Five years ago, my husband and I made the decision to move from New York State back to his home state of South Carolina. Our youngest child was about to start Kindergarten and we were on the hunt for a great school district, that was close to family. Fortunately, we found what we were looking for in his parents back yard! When we made the move, both sets of parents were relatively healthy and beyond independent. My parents were working full time and my husband’s parents were happily retired and active. No one required continuous health care for any serious ailments or debilitating diseases.
When Life Throws You a Curve
Six months after we moved back to South Carolina, my healthy, young, 57- year- old Mom was diagnosed with Glioblastoma brain cancer. Needless to say, this was shocking, completely unexpected, and life altering. Life as we knew it changed in the blink of an eye. Keeping in close communication was now more important than ever before. Constant communication was not only important in fostering and strengthening our relationships but it was imperative for coordinating and keeping up with her care.
The Importance of Communication for Long Distance Caregivers
I never imagined I would become a long distance caregiver at 32 years old. But, being the only child, it was not even a question that I would be heavily involved in my mom’s day to day care and treatment coordination. My dad was working full time, in addition to full time caregiving. Therefore, I assumed the role of Chief Communications Officer (sounds fancy, doesn’t it?) A self- proclaimed, self-assumed, prestigious title! Because of my dad’s full- time job, it was decided that my mom would go back and forth between New York and South Carolina, staying for longer periods of time than she normally would for a leisurely visit!
Finding ways to easily communicate with my dad, other family members and friends, in addition to my mom’s care team, was going to require some time, thought and effort. But, with the help of technology and a few simple tools, we were able to keep that personal connection strong and to assist in the shared caregiving responsibilities across the miles.
Keeping Personal Connections Strong Through Communication
Technology can truly be both a blessing and a curse in the modern world we live in. It can truly help build up relationships and keep people connected but it can also serve as a major distraction in our personal relationships leading to division and a breakdown in communication. For today’s purpose, we are going to focus on the positive attributes of modern day communication technologies.
Many households today have smartphones, tablets and computers. The availability and accessibility of these devices opens up many new (and FREE) opportunities to communicate with loved ones across the miles. We can communicate and share information faster and easier than ever before (unless you are like my Mom who remains old school with her archaic flip phone.) These devices not only allow us to make phone calls, send text messages and write emails, we can use free apps such as Skype and Facetime to video chat with our loved ones. There is just something about being able to see AND hear the person in real time that makes you feel that much closer together…almost as if they were sitting right there in the room with you.
When is the last time you actually put a stamp on a handwritten card or letter and sent it via the US Postal Service? It’s sad to say but this is becoming a lost art. Call me old fashioned, but I love real mail! There is something so exciting about walking to the mailbox to find something handwritten with your name on it! (Of course, bills and junk mail aren’t handwritten and don’t count) Just knowing that someone took the time to handwrite a sweet message just for you, really warms my heart! Email and text messaging are great but nothing takes the place of a hand written sentiment!
With all the technology we have, there is no excuse to not take pictures or to share them! We can take pictures and videos with our phones, tablets and computers! In addition to taking the photos, there are a ton of websites that can take your special photos and turn them into a memorable keepsake. Consider sending your loved one a photo book from every season. Create a photo calendar or turn your precious photos into a blanket. The possibilities are endless.
Sharing our photos and videos with others is also easier than ever before. Whether you choose to share on social media (Facebook, Twitter, Instagram) or use another collaborative site, moments can be shared quickly with a few clicks of the mouse! Seeing videos and photos from daily activities and events, helps families stay connected and gives people the feeling that they were a part of the moment even though they were not physically present.
In Person Visiting
This option of connecting is the most desirable, however, the most challenging. Nothing can take the place of physical contact and in person connection. But sometimes, long distance travel is cost prohibited or complicated by work and family obligations. If you and a loved one are separated by the miles, do your best to schedule an in person visit. Plan in advance to make the most of the precious time you have together. But, in between visits, consistently use a combination of other contact methods to stay close and remain connected.
Using Technology for Caregiving Communication
Video Conference Calls for Appointments
All of my mom’s medical appointments take place at the Preston Robert Tisch Brain Tumor Center at Duke, which is 4 hours away from my home in South Carolina and about 11 hours away from my parent’s home in New York. Making every single appointment while working a full time job is a challenge for my Dad. But one that my he does amazingly well at and never complains. Unfortunately, time off of work also means, less (sometimes no pay). Over the last 4.5 years, we have been able to utilize technology to ensure that neither one of us are ever left out if circumstances prevent us from being there in person. Not only can we hear what is going on but we can also watch the exam in real time and see the MRIs.
Online Electronic Medical Records and Communication Portals
This medium has been a critical lifeline for our family throughout our brain cancer journey. Having access to our patient portal allows us to communicate electronically with our medical team for all my mom’s needs. If we have a care question, need a medication refill or to schedule appointments, we can hop on the patient portal and stay connected with just a few clicks of the mouse.
The nice thing about the electronic patient portal is that both my dad and I can access it. We can see past appointment notes, medications, scan reports or any other documentation related to my mom’s care. Its all in one place. I would highly suggest inquiring about this service with your medical facility. It makes caregiving, especially long distance caregiving, a lot easier when it comes to keeping track of the medical logistics.
Online Collaboration Site
Our family is incredibly blessed to have an army of people who pray and love us like crazy! They also have a deep desire to keep up with my mom’s cancer journey. When my mom was first diagnosed in 2014, we created a Caringbridge website. This is a free site. It allows you to create a website for your family and chronicle the details of your journey. They make sharing it with family, friends and community free and easy. This was a lifesaver in many ways. It allowed us to post journal entries, one time and in one place. It also afforded us the opportunity to post pictures and interact with our guests through a two-way comment section. If you are trying to keep a lot of people connected and informed, I would highly recommend creating a Caringbridge site for your family. Its free, simple and safe.
Google Calendar and Other Caregiving Apps
Google Calendar and other online caregiving apps allows you to input medical appointments and keep track of important family dates/events/commitments. These apps also allow you to share your calendar with other members of your family. This is a particularly helpful tool for the long distance caregiver. The functionality of these apps allows you to stay organized and coordinate care, while also sharing the responsibilities with others. These helpful tools make keeping everyone on the same page easier; without having to exchange multiple calls, texts or emails trying to keep up with everyone’s obligations and/or responsibilities.
Long distance caregiving is not always easy. However, we are fortunate to live in a time where staying connected and sharing information is easier than ever before. Setting up a communication system that works for you is the most important thing. Make it simple and stay consistent. As the saying goes, work smarter, not harder!