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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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Kathy P.
    5 years ago

    I like the suggestions here. One other thing you might consider, in case you don’t already travel with a wheelchair, is to rent a lightweight travel wheelchair when you reach your final destination. It’ll save wear and tear on you both, and makes it easier to make your excuses if you just need to sit out on something.

  • Rob author
    5 years ago

    Thanks everyone for your comments. I appreciate that you’ve taken some time to read my article and the suggestions you’ve left. Lisa and I will be traveling to see her family at the end of December, so we’ll have an opportunity to use your ideas!

    I’m always a little curious and excited to see responses to these articles. When writing about my own personal experience as a care-giver I usually have no idea how or even if others may react to it, so it is gratifying to know that sometimes my pieces resonate with folks.

  • Kelly Mack moderator
    5 years ago

    Rob, really thoughtful piece. Thanks for writing this. Family members may not understand the energy or physical demands of living with RA, but I think gently explaining should hopefully be welcome. For example, explaining that you need to plan in some rest time in addition to family time during a visit. When we visit or travel with family I will talk about plans, including rest time. We spend time together, but also value the downtime to recuperate. Hope this helps.

  • Jenny
    5 years ago

    I think directness works best. Suggest having them pick some activities that you can alternately vary the energy level required of Lisa from one day to the next so that you can all enjoy the visit without you & she needing to take a day in between to recover.

  • Shirley Sanders
    5 years ago

    I am reading the article and shaking my head yes, but how do we get our family and those around us to understand this affliction we live with ? I explain to my family often why certain things are a struggle for me, but once again the silent illness deafens them.

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