What Not to Do
What should I avoid doing when trying to help?
- Don’t offer vague, non-specific help: Don’t ask generally what you can do to help – they will not know what to ask for and it’s hard to answer such an open-ended question. Be more specific. Could I help walk your dog on certain days? Could I run an errand for you such as picking up a prescription? Could I pick up your kids from school when you have your next doctor’s appointment? Be specific and offer to take care of a task when you hear about a possible need for help.
- Limit the bragging or complaining: Don’t tell them all about how busy you are or about your exciting vacations. Some discussion, of course, is fine but remember that it may be difficult for people to hear about “normal lives” when they are facing a degenerative, terminal disease. Of course, if they eagerly ask to hear about your trips or activities, by all means tell them. Likewise, don’t complain about problems the MSA family probably wishes they had – a vacation that went badly, not finding the right clothes for a special event, a promotion at work that has resulted in long hours. The MSA patient probably wishes they had some of these problems. Be sensitive.
- Don’t ignore or avoid: Don’t ignore the MSA patient, even if they can’t communicate (this was suggested above but can’t be emphasized enough.) Speak to them, include them. They are people with thoughts and personalities just as they have been in the past. They may feel trapped in their bodies as the disease advances, but they still have active minds and ignoring them is one of the worst ways to treat them.
- Don’t be a medical know-it-all: Don’t ask the patient or care partner if they have pursued all possible treatment. They probably have. Don’t ask if they have heard of some experimental treatment you read about it. They probably have and it’s probably not appropriate for MSA anyway or they would be trying it.
- Don’t offer false hope and wishful thinking: Don’t say things like, “At least you are stable” or “You seem to be getting better.” If they have a progressive terminal disease, they may have plateaus, but they are not going to be “stable” for very long and are likely to be generally getting worse. Focus on the present day and how they are doing today. Don’t project your wishful thinking that the patient “will surely get better.” That is not helpful at all and puts the patient and family in an awkward position of how to respond.
- Don’t offer irrelevant stories of triumph over disease: Don’t tell them about someone you know who beat a terrible disease. If they could do something to beat MSA, they would be doing it.
Contributed by Patricia Libby Thvedt, former care partner to an MSA patient and member of the MSA Board of Directors.