I'm The Primary Healthcare Provider
Lynn has never been good at sharing information. He’s one of those men who can go to the doctor about a problem, find out he has a new medical condition, start a new treatment program, and when he comes home will say, “The doctor says I’m fine,” or say nothing at all. He did that for years before he was diagnosed with MS. Used to drive me nuts! I have a nursing background and when he came back from the doctor, I wanted to know everything—his blood pressure, what lab work was done, what was the differential diagnosis, what is the treatment plan, what options was he given before he made a choice, etc. Needless to say, I never got that level of detail from him because not only did he not ask those questions but if he did, he didn’t “hear” the answers and could not, therefore, provide any details.
One day after such an experience, I blew up and demanded that I be allowed to accompany him to his next visit. Not only was I going, but I was going to make an appointment for him with a neurologist and he was going whether he liked it nor not! I knew he had MS. I also knew he was not telling the doctor what he needed to share so that the doctor would consider that possibility. THAT was the moment that I truly assumed the beginning of my caregiver role. I decided his medical care was coming under my supervision and that was that!
True enough, that was the turning point in getting him diagnosed with MS and getting his treatment plan started. Now, at doctor’s appointments, I first allow Lynn the opportunity to respond to the doctor’s questions but I listen carefully to his answers. If he’s asked if he’s in pain, for example, he will always say, “no.” He could have just complained to me about his legs hurting before the door opened but his response to if he has pain is always, “no,” (unless his rating on the pain score is 5 or above). Usually about five minutes into the medical evaluation, I’m doing most of the talking and Lynn is listening and reluctantly agreeing with my assessment. There are times that he actually tries to contradict what I say because he does not want to appear to be “sick” but usually after a couple of “points/counterpoints” he admits I am right. I also admit that I may exaggerate at times the severity of his symptoms due to their impact on me. I figure though between his, “I’m fine,” and my, “he’s having a lot of difficulty…” the doctor realizes his condition actually lies somewhere in between those two extremes.
My goal in taking over his medical appointments like that is to make sure that when we leave, I have the tools I need to keep him as well and as comfortable as possible. I’m not a believer in stoic acceptance of discomfort. I believe in “better living through chemistry” and know that there are often medications or treatments available to take the edge off the pain or help resolve discomfort IF the doctor knows the problem exists. I also know that many drugs have significant side effects or can combine with other medications to create new problems. I ask questions about drug options and implications and I actually read those handouts that come with the medications. (Caution: pharmaceutical companies have to list EVERY possible side effect. Rarely does one person get them all or many of them but it’s good to have a general idea what body functions might be affected.)
Fortunately, we now have a group of doctors and therapists who recognize that I know Lynn’s body and his needs better than they do and often, better than Lynn. If Lynn says he’s fine, they look at me and ask what I think. We’ve signed all the necessary consents so that I can have full access to his medical information. They know that when he has lab work, I am going to ask for a copy. I don’t want to know the results were normal; I want to know the actual value. They also know that if I call, it’s because something is wrong and if I ask for a particular medication or treatment, chances are, it’s needed. I know how Lynn’s body reacts. I know the subtle changes to watch for that indicate his thyroid is in trouble or his hemoglobin is dropping, again. They know if I say he has a stage II skin ulcer and I want x, y, z that he has skin breakdown and we need to get it on right away. They often have better ideas on current treatment than I have of course, but they know from what I ask for and what I report, the direction the treatment plan needs to go. I really appreciate their including me as part of his team and it makes me respect their judgment more. In fact, if I take Lynn to a new doctor and that person ignores me and only talks to Lynn; first, Lynn will redirect them to me and second, that may be our last visit there if that behavior doesn’t change.
As Lynn’s primary caregiver, I am THE authority on his health. I’ve learned over the years that when I get a nagging feeling that something is not quite right; I need to listen to myself and check it out. Just like I knew if my babies were sick, it’s the same instinct and attention to detail that comes through in caring for Lynn. That makes ME his primary healthcare provider.
Do you celebrate your MS Anniversary?