The Bookend Emotional Life

The thing about being a cabana boy is that you work a split shift when it comes to emotional support. That's not quite true, but fairly close.

The duties of a cabana boy in general are not quite 24x7, but in my case about 18x7. Aside from the emotional support, there is all the logistics support (appointments, pills, managing household, etc.), medical management (learning, interpreting, explaining, counseling), and, in the case of a stroke victim, accompanying her or chauffeuring her everywhere. Then there are those precious hours when I'm awake and she is not when I can do the worrying and thinking - about how to deal with all the future scenarios.

There is one aspect though that is difficult - that split shift emotional support. During the day, when Meagan gets going, she doesn't want to think about the disease. She wants to get done the things she needs to get done and be as functional as she can be. Sure, there are times when the emotions well up and as the cabana boy you need to be there. But they usually aren't deep and usually short duration.

But there are two times when it can get both deep and long. One is in the morning, when she's had time to sleep on it, and wakes with newfound thoughts and wants to discuss them over coffee. But they are of a particular category - more about understanding the disease progression, or balancing seeing friends and the things she wants to get done, or how she needs to prepare herself or think about the disease so she can function. It is an emotional time, but it has a certain quality and is usually linked to some activity, idea, or status.

But bedtime is another story entirely. She has been able to hold check on the deeper emotions throughout the better part of the day. Even though she has engaged in activities or been exposed to information that trigger emotional reactions. So when her head hits the pillow, it's not time to sleep, its time to let loose the pent up emotions. Now as a cabana boy, you've already put in a 17 hour day and are probably pretty exhausted. So when your head hits the pillow, you are thinking sleep. Uh uh. Your most difficult hour is about to begin.

In the early stages of the disease, besides comfort and reassurance, there was always the possibility of providing optimism and hope. About the new research, new drugs, treatments yet to come. At this stage of the disease, when we are pretty much at the end of the rope, and moving from incurable but treatable to incurable and not treatable - there is not much optimism and hope on offer. The best that can be provided is to focus on the quality of the remaining life and focusing each day on that. But that message really doesn't carry the day. So you are left with the comfort part, while she and you, express the emotions associated with the cruel realities of where she is. It is by far the hardest part of being a cabana boy, and comes at the hardest part of the shift.