I have come to believe that my mental and physical health should be part of every conversation I have with my husband’s medical team. I know that he is the one who has been diagnosed with this disease, however I share in the load. Seldom, if ever, do any of his doctors ask how I am doing. I am great at telling them his struggles but mine are never part of the equation. All they see is their patient, not the one who is standing beside him in need of their help too. How do interventions or treatments they are recommending impact my ability to care for him? Is there a different approach that might work better for both of us? Can a treatment plan be designed to take my circumstances into consideration as well as his needs?

Last year, my husband’s doctor suggested that he might benefit from another round of physical therapy. This would have been the third or fourth attempt with limited success. It would have meant scheduling multiple appointments, getting him to them, and then nagging him to do the homework afterwards. I don’t think our doctor had any idea what they were asking or how much hassle is involved. I looked at my husband, then at the doctor and said “no”. At that point in my life I did not have the capacity to add one more thing especially since it was something we had tried already with little or no success. I just couldn’t do it.

How can I address these issues within the current context of care? How do I help his medical team understand the importance of considering my health and capacity as a component of his care plan? I think I took the first step when I actually said no to recommended PT. Now, as his symptoms progress, I need to keep talking about what reality looks like in our lives and our home. If I am called upon to do more, I need to make sure that everyone knows exactly what that means. If his treatment plan causes me harm or leaves me needing treatment, then it is not working for either of us. I need to be able to provide care for him and care for myself at the same time which may mean simply reminding the doctors that I have limitations too. Then we can all look for options that work well for both of us.