Managing the Juggling Act: Experiences from a Family Visit
As we move into November we begin to think about the upcoming holidays. For most of us the holidays will bring family visits and other special events. While many of us enjoy spending time with our families, such visits do bring extra considerations for patients and caregivers. Lisa and I recently had a family visit when her brother and his family flew into town for a few days this past month. Spending time with them was a good refresher in managing this juggling act.
Lisa’s family isn’t able to visit us all that often, so we knew we wanted to spend as much time with them as we could. We were definitely excited. Lisa’s brother and sister-in-law are the parents of three boys, so we were guaranteed to be on the go for quite a while each day. Furthermore, Lisa has an irrepressible desire for engagement when spending time with her family. I love this quality about her, but I also know that this can become a dangerous trap, as her enthusiasm for activity may cause her to do more than she should. If this were to happen, it could curtail her ability to spend time with the family on succeeding days. This wasn’t the first time we’d been in this situation, so I was confident we could maintain proper balance. As the visit played out, however, maintaining balance proved challenging.
I’m not a very meticulous planner, but I had hoped that we might develop a general itinerary for the visit. With an itinerary, we would have a sense of what we would be doing each day which, in turn, could help Lisa budget her energy over the course of the visit. What I learned, however, is that Lisa’s family had more of a play-it-by-ear approach for to each day. We adapted to this approach but on-the-fly planning made it harder to parcel out Lisa’s energy for the visit.
For example, the first full day of the visit, we went into D.C. to tour one of the Smithsonian museums. Everyone had a great time, but at the end of the day Lisa was clearly tired. And we lacked clarity on the following day’s event. It might be a trip to the National Zoo or a 1-2 hour drive to Gettysburg, PA to enjoy the scenic battlefield. We wouldn’t know for sure until the following morning.
As the lack of certainty about what we would be doing each day continued, my concern about Lisa burning out too quickly increased. Normally, if it’s just Lisa and I traveling together, we can find ways to mitigate this problem. In this situation, however, we were trying to keep up with the traveling desires of Lisa’s family. This led to another challenge that I wasn’t able to resolve and still don’t yet really know how to resolve. That is; how could I effectively communicate to Lisa’s family the importance of Lisa being able to manage her energy level at a predictable pace.
While Lisa’s family is certainly aware that she lives with two serious illnesses, they may not fully appreciate the challenge that presents. It’s one thing to know someone has an illness, but something else entirely different to live with that person and begin to understand more fully what they can and cannot do.
In our scenario, Lisa may have seemed to function well, and she was at times, but I wasn’t certain that her family understood how much energy it took for her to walk or stand several hours at a time on our various excursions. Trying to handle this situation was difficult for me. I am not a very direct person and so felt uneasy discussing the matter openly with them. Instead, I opted to manage our situation by helping Lisa keep a manageable pace level while letting her family proceed through the Smithsonian and the Zoo at their own pace.
Employing this approach allowed Lisa and me to stay with the rest of the family for most of our sight-seeing activities over the weekend. This strategy seemed to be successful, but I know we didn’t really make any progress in establishing a better understanding with her family about her diseases’ impact on physically demanding activities. A reciprocal visit to her family in Oklahoma is on the schedule for us this holiday season, so we’ll likely encounter similar situations again. Perhaps, you good readers, can offer suggestions.
What are your experiences in communicating with family and friends about managing family visits?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?