A Care-Giver's Thoughts: Worrying that I Should be Worrying
As I began to write about care-giving, I always felt it was important to talk about the ways in which I try to offer care to my wife, Lisa. It seemed to me that was the appropriate focus for a series discussing the perspective of a care-giver. Recently, however, my wife suggested that I should broaden that approach and write more about how I feel in my role as a care-giver. That idea hadn’t really occurred to me, but it makes sense. So in this article I will talk a little bit about one of the primary issues I am concerned about as a care-giver.
My wife’s RA diagnosis was a lengthy and somewhat difficult process. Her hands, wrists, and fingers were inflamed, swollen and painful. This was a frustrating time not only for her, but for me as well as she had not yet been diagnosed and there was so little that I could do to help her. I felt helpless. Eventually, she was properly diagnosed and began taking methotrexate which improved her quality of life. Then, in 2009 she began taking Rituxan and through the combination of these two medications Lisa’s RA appears to have been largely brought under control. She occasionally experiences joint inflammation and pain, but this is infrequent and such flare-ups do not last very long. We are very fortunate now.
As her spouse and care-giver, Lisa’s state of relative RA calm provides me an enormous feeling of relief, as her Rituxan treatments allow her to carry on an active life. But, as I explained in a care-giver seminar earlier this summer, I sometimes find myself “worrying that I should be worrying.” In other words, shouldn’t I spend more time thinking about what would happen if Rituxan stopped working for Lisa?
Difficult questions emerge when I think about such a scenario and I never have good answers for them. Just pondering them fills me with a sense of anxiety. However I find that writing this article forces me to confront these questions and search for answers. Here are some of my questions and answers:
Is this period of good health only fleeting and it won’t be long before Rituxan stops working for Lisa, I wonder?
No, Lisa has been taking Rituxan for nearly 6 years now. Few people would call that fleeting. Moreover, Lisa has regular check-ups with her neurologist and rheumatologist. These check-ups give her doctors periodic chances to evaluate her status. To date, there has been no sign that her Rituxan is not working. And while anything is possible, with this periodic medical monitoring, it is very unlikely that a change would go undetected by her doctors.
If the Rituxan does lose its efficacy, will there be a good replacement option for her?
If Rituxan were to lose its effectiveness, we do know that there are a variety of medications available on the market with new ones in development. In today’s world, I should be confident that Lisa has an excellent opportunity to find a good replacement medication.
If Lisa did have to change medications, would we be able to receive the same high quality financial assistance that we have now?
This would be tricky question to answer. Lisa receives very high quality financial assistance from the pharmaceutical company that manufactures Rituxan, so I know it would be difficult to contemplate a change. I try to reassure myself that through solid research, and consultation with doctors, we could find an appropriate treatment with good financial assistance should Lisa have to change medication.
If she doesn’t respond well to a replacement medication what will that mean for her and for myself?
Another difficult question to answer. I don’t have a really good answer and feel nervous about the possibility of needing to find yet another treatment option. Again, we would need to rely upon consultation with her doctors and develop a contingency plan.
And how would I handle all of this if it did come to pass?
I have to be honest and say that I don’t know how I would handle this sort of change. But I will say that answering these questions at least gives me a roadmap. It’s just start, but an important one.
Taking stock of these issues now and seeking answers, however preliminary, gives me confidence in the future. Ultimately, however, I think that what is most important is accepting that Lisa’s RA is well-controlled, she is active and able to do things that amaze me, and I ought not to fret about what may or may not come to pass. Together we can continue to focus on a high quality of life, staying active, eating healthy foods, and staying on top of medical concerns. I believe that it is important to focus on living well. Life is too short and important to worry about worrying.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?