The Caregiver as Referee
Last updated: June 2018
The role of caregiver to MS patients is multi-faceted.
Provider. Support system. Cheerleader. Head chef and bottle-washer. Trusted advisor.
If you care for one with MS, most of the roles on that short list are pretty much straightforward. The last one, though, can be tricky.
The role of trusted advisor
As caregiver to my spouse who was diagnosed more than 30 years ago, the role of trusted advisor has evolved in a dramatic way. The most important advice one can give to an MS patient relates to treatment of the disease. Back in the 1980s, the choices were extremely limited, so one would think that it was easy to advise MS patients on treatment. The doctor prescribed steroids, so patients decided whether or not to take steroids.
Messages from outside the medical community
But it wasn’t so easy. There were a lot of messages targeted to MS patients from outside the medical community. There was bee sting therapy. Yes, there was anecdotal evidence – as opposed to scientific proof – that some folks who deliberately took bee stings reported a decrease in MS symptoms. I wondered how many of them were aware of the risk of severe allergic reactions, including anaphylactic shock that could produce heart failure.
Knowledge of the risks
Some of the pitches from within the medical community were equally dubious. These supposed cures came from unscrupulous medical doctors who were trying to cash in on the misfortune of others. For instances, some physicians offered injections of massive doses of vitamin B to MS patients and others as a panacea. I doubted these physicians advised their patients of the risk of MS-like symptoms that can result from high doses of vitamin B.
The caregiver as referee
But MS patients who were afraid of the side effects of steroids were desperate for natural therapies. It was the job of caregivers to referee or officiate between the charlatans who offered unproven, even risky, treatments and the eager MS patient who might have shelved his or her common sense in the hope of an easy answer to this vexing disease.
Myriad of medicines
Many years later, the pharmaceutical industry is offering a myriad of approved medicines that are clinically-proven to effectively treat MS. All of the options are light-years ahead of steroid therapy which suppresses a patient’s immune response temporarily, if at all. However, the wealth of choices and information can be confusing to MS patients. No matter what the personality of the patient, there is always an emotional component to making treatment decisions.
How the role has evolved
So the role of the caregiver as referee has evolved. The trick now is to evaluate the neurologist’s advice, decipher data, consider side effects and other factors, and provide an objective perspective on the available choices.
Oral or injectable or infusion? Small molecule or biologic? Time-tested or newly-approved?
The caregiver must try to objectively view the choices and discuss them with the patient, all the while being mindful that the ultimate choice of treatment must come from the patient and the patient alone.
Do you ever have moments where you question your self worth because of your MS?