The Role of Family Members Living with someone who has MS is not always easy. At times, it can be difficult and downright frustrating. But as a family member, the first thing we need to understand is that our difficulties pale in comparison to those of our loved one who lives with MS. For them, just getting through the day may be difficult and unless we have experienced it, we can't understand it. But we have to accept it. Here are some ways that we can help reduce stress for our loved ones: 1. Understanding. There is so much that we need to understand. The more we understand, the better equipped we will be at helping our loved one get through the stressful situations that they may be facing. Also, the more we understand, the less likely we will be to become the cause of a stressful situation for them.
We need to understand the disease itself and that it has affected our family member in ways that are out of their control. We need to be sensitive to how their symptoms affect them and what they may need from us to help them.
We ultimately need to understand that we cannot completely understand what they are going through and must therefore accept what they tell us and then do our very best to remember that life is different for them. They do not always experience or process things in the same manner in which we do. Therefore, it is up to us, at times, to alter our way of thinking so that they may be able to better manage particular situations in life. Combining understanding with our appropriate actions and reactions, is key to alleviating stress for the person with MS. 2. Patience. I cannot stress this one enough! There are times that your loved one may frustrate and exasperate the bejeebers out of you! But this is not about you. This is about your family member and the role you play in reducing or helping to eliminate their stress. There will be times when your loved one can't keep up with your pace, is too tired to go out, can't think straight or put words together correctly to express a thought. Sometimes you will ask a question and get no response. This is not because they don't want to answer or don't have an answer...they're just waiting for the neurons to fire that will help them put the answer together and get it out. Our natural response, as healthy individuals, is to push them harder. But this is exactly what they don't need! Pushing them harder may cause extra stress and the situation could deteriorate quickly. It is at times like these that we, as family members, need to step back and allow the process to take place at whatever speed works for them. The less pressure we put on a person with MS, the better they will be able to function. 3. Know their stress triggers. There may be particular people, places, situations or things you do that cause stress in your loved one with MS. By knowing a person's triggers, we can help to diffuse or eliminate situations that may bring about stress. Develop strategies for dealing with these situations when they arise. Then, when you are confronted with them, even if they catch you off guard, you will have the security of knowing what steps to take to reduce the stress instead of panicking and wondering what to do.
Sometimes, we may even recognize triggers that the person with MS does not. If this is the case, calmly discuss with them that this may be a possibility and how you should work together to handle it.
4. Know your boundaries. Our natural instinct is to help others in need. Sometimes this is not a good idea when it comes to a person with MS. Our good intentions could actually backfire and create a stressful situation for them. Just because a person with MS may react more slowly and/or less efficiently than you do, doesn't necessarily mean that they need or want your help. A person with MS is no different than anyone else when it comes to the desire of being self sufficient and having the satisfaction of achieving something on their own. Know when to help and when not to help. Work together to develop a system of communication that will allow each of you to know when it is time to step in and when it is not.
5. Assurance. A family member with MS wants to know that it is okay that they have MS. Many people with MS carry the stress of feeling like a burden to their loved ones. They feel like they have let their families down or are holding them back. It is important to let them know that you love them regardless. Continually assure them verbally, with your actions, body language and demeanor that they are a vital and integral part of your family and life.
6. Back Off! This is a tough one as it involves egos. It is also something that has taken me a while to learn. Sometimes a family member may feel ignored, unimportant or like they are in the way of the person with MS. This can be due to the fact that it can be very easy to misread or misinterpret the actions and responses (or non-responses) from this person. Remember, a person with MS has a lot to deal with on a daily basis. Sometimes it takes every ounce of energy they have to deal with a particular symptom(s) and just get through the day. Just because you may not get a response (or the response you wanted) doesn't mean you are being discounted or trivialized. This person is just trying to cope at the moment. If you have ever experienced a migraine headache, I believe you can relate. So sometimes, in order to avoid creating stress, we will need to put our ego aside, back off...and not take it personally.
Conclusion
Unless we have MS ourselves, we will never be able to understand what it is that a person with MS must deal with on a daily basis. We simply must accept that we will need to be constantly working on changing how we relate to and interact with this person. By putting into practice the six principles above, we can begin the process of diminishing stress for them which in turn, will lead to a less stressful environment for everyone involved. Be patient and be sensitive.
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