Living with Multiple Sclerosis (MS) can be extremely challenging, but often we do not acknowledge the difficulties posed to those caring for a loved one diagnosed with MS. Caring for people with MS takes time, patience, and an enormous amount of energy, especially with all of the other things going on in ones life. Because of this, it is imperative that caregivers take good care of themselves, taking the time and space needed to stay healthy. As caregivers you should also encourage your loved one living with MS to talk to professionals who can help them, rather than try to act as an expert yourself. Below are several dos and don’ts to follow when acting as a caretaker for someone who lives with MS.
- love, support, and listen
- actively offer to help
- take care of yourself
- encourage your loved one to speak with a professional
- admit what you don’t know
- think about the future
- tell your loved one horror stories
- push your loved one too hard to make a decision
- play doctor
- ignore symptoms
- disclose a loved one’s MS status
Actively care for your loved one. MS is an incredibly challenging diagnosis to live with, but it is also difficult diagnosis to help someone live through. Being proactive in your interactions with your loved one, ask open-ended questions such as “how do you feel today?” rather than “are you feeling well today” (which can often lead to a simple yes/no response) and also listening carefully are ways to show you care. If your loved one is constantly bombarding you with painful emotions, help them find additional supports – a therapist, a group, other loved ones to speak with.
Offering to do laundry, cook, drive your loved one to appointments and meet with their care providers together are activities both showing you care and providing important assistance to your loved one. Someone living with MS will need help, whether s/he is limited physically, cognitively, or both and you can offer it. Remember that help you offer can be given in many forms, and that all cases of MS are different. So, find out what your loved one needs the most help with and let them know that you are there for them. You can offer to help now or let them know you are there for them at any time in the future.
Caretaker stress, caretaker burden, and caretaker burnout are very real and can be difficult to cope with while trying to aid someone else living with a chronic illness. Remember that in order to care for others, you must first care for yourself. Eat balanced and regular meals and do your best to sleep at least eight hours per night. Ensure that you get regular exercise and take time to de-stress and enjoy life. Having difficulty dealing with your loved ones diagnosis or behavior is not unusual and you do not need to feel guilty or ashamed about this. If you are having trouble, seek out help for yourself – talk to your friends and loved ones and/or find a therapist if you need one. Many therapists are aware of the burden of caretaker stress and can help you cope with it for yourself.
Doctors and other healthcare professionals are there to help. Encourage your loved one with MS to ask questions and find a good team of healthcare providers who help them move forward rather than hinder their progress. Encourage your loved one to ask the questions for which they need answers so they do not have to live in fear of the future. You should also engage with the healthcare providers and ask questions about the best ways to help. Often we are scared to ask questions, fearing that they are “stupid” or irrelevant, that we may anger others, or that we may receive answers we do not want. But avoiding these questions is not the answer – if we do not ask questions about our loved one or the care we are giving them, we will not be able to provide the best care for our loved ones. In addition, if your loved ones’ goals and the goals laid out by their healthcare team to do not match, then perhaps that healthcare provider is not a good fit and you need to look for another. Your loved one needs to find healthcare providers who has their best interests in mind, and unfortunately, even professional care providers can sometimes make unhelpful or even harmful statements. Help your loved one find a healthcare team they can trust and open up to.
Acknowledging what you don’t know is the first step in learning. Too often, we try to act as experts on things we know only a little about and this can create confusion and point your loved one in a wrong or even dangerous direction. We don’t know what the future holds and most of us are not experts on MS, and that is okay. When you don’t know something, ask for help. If your loved one asks you a question you cannot answer, explain that they would be better off getting help from an expert source, whether it's an article, a professional, an organization specializing in MS or something else. Your loved ones healthcare team is a good place to start and organizations like the National MS Society can also point you in the direction of excellent resources.
MS is chronic, potentially debilitating disease, although it is rarely fatal in and of itself. To successfully live with this disease, your loved one will need careful and effective financial, job and general life planning. Encourage your loved one to speak with professionals who can help them. Your loved ones healthcare team may know of people who have had experience working with people who have MS, and the National MS Society webpage has a large list of these types of resources. People who are familiar with MS can be wonderful resources in thinking ahead and planning for the future. Ensure that your loved discusses their plans with their family so that even if everyone does not agree with the plan, everyone is made aware of the plan and why it was made that way.
Most of us have heard of someone who suffered a terrible fate with some disease or another, but many of these stories can be unnecessarily frightening to a person with a chronic illness. If it scares you to imagine yourself in the horror story, it will probably scare a loved one with MS too. Before telling a loved one with MS this type of story, ask yourself “does this story serve to benefit my loved one in any way?,” “would I feel comfortable if I were living with MS and someone shared this story with me?” If the answers are “no” to either of these questions, do not tell your story. It will likely do much more harm than good.
It is important to remember that there are times when decisions are needed and there are times when they are not needed. Dealing with MS can be scary and overwhelming and there may be times when your loved one simply needs some space before making a decision. And sometimes your loved one will make decisions that are dangerous or questionable, particularly regarding their health care and medication. If this is the case, you can discuss these issues with your loved ones healthcare team but do not push these issues yourself. Often someone pushing at us makes us want to run in the opposite direction, to be rebellious. This is very true for a lot of people in regard to their health. Someone pushing too hard can make us both rebellious and resentful, and feel as though we are being treated like a child. Instead, invite your loved one with MS to discuss these decisions with professionals who can help.
Allowing either yourself or your loved one with MS to diagnose symptoms or “prescribe” medication using the internet or limited knowledge can be very dangerous. Its far too easy to extrapolate using one or two symptoms and the internet these days, and our emotions about health concerns can cloud our own judgment. Instead, bring the issues to the attention of your loved ones healthcare team. Describe the symptoms or issues to your loved ones healthcare providers carefully, providing as many details as you can remember. Physicians have years of training, as well as specific tests and tools they use to help them diagnose different symptoms accurately.
Listen to your loved one when they say they have pain or discomfort or that something is wrong. Just because you cannot see something, does not mean it is not occurring. There are many “invisible” symptoms of MS, as with many other illnesses. If you loved one with MS is telling you that s/he is experiencing visual problems or other symptoms that are new, whether they are visible or remain unseen, encourage them to contact their healthcare team immediately.
This is true for almost any illness. Do not disclose someone’s medical status to someone new without inquiring if its okay first. Even if you are intimately involved with caring for your loved one on a daily basis, it is important to remember that medical issues and care are confidential. Just because a loved one has disclosed their MS status to us, does not mean they’d like anyone and everyone to know that they are living with this disease. Instead, ask your loved one how they would feel if you informed another person that they have MS before you share this information with someone new.
Caring for someone with MS can be life-altering and exhausting experience. Remember to take care of yourself so that you can properly care for them. Ask for help when you need it and encourage your loved one to discuss their needs with their healthcare team and other professionals who have experience with MS. Caretaker burden can be incredibly draining, so don’t let it take over your life. That way you can help yourself and your loved one with MS to both lead healthier and happier lives.