James Wheless, MD, discusses methods for how doctors and caregivers and collaborate to improve care for their loved one.
Transcript
I often tell caregivers because they don’t ask it, “Are we really doing, you know, what we need to be doing to maximize our loved one’s potential?” I mean, we all do that with our loved ones. Whether they’re normal or have LGS, we want them to have the best life they can have.
And are they doing the things they need to be doing? Most of them are. So I think one is just kind of verifying that they are. Because if we don’t tell them, they often don’t ask. And then in the back of their head they may think, “Oh, I should be doing something else that I’m not doing.” So I think one is that.
And I think almost a flip side of that coin. What else could we do to improve their quality of life? To improve their care? So I guess that’s the flip side of that coin, “Is there anything else we should be doing to improve your quality life, improve your care?” And if they’re doing everything, then great.
I think the other important thing for caregivers to realize is that over the trajectory of their child’s lifetime, as they go from infancy, childhood, adolescence, a young adult, those kind of targets are going to keep shifting over time. So they’ve got to be a little fluid and keep thinking like, “OK, our goals may be different. We may be shifting, and at this point and over the next couple of years, you know, what does that look like?” So they’ve got to keep that in mind as well.
