9 Tips for MS Caregivers
Medically Reviewed By William C. Lloyd III, MD, FACS
Written By Chris Illiades, MD on June 27, 2021
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9 Tips for MS CaregiversMultiple sclerosis (MS) is a chronic nervous system disease with symptoms that come and go unpredictably. It's usually diagnosed in people between the ages of 20 and 40, so if you have a loved one with MS, you may have many years of caregiving ahead of you. Caregiving can be hard emotionally and physically but, if you let it, MS challenges can also bring you closer to the person you're caring for. Here are nine tips for being the best caregiver you can.
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Get Smart About MSBecoming knowledgeable about MS will help you be a good caregiver. Knowing what to expect is much better than fearing the worst. Knowledge will help you communicate effectively with your loved one's healthcare providers and be a valuable part of the caregiving team. The National Multiple Sclerosis Society at http://www.nationalmssociety.org is a great resource.
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Work as a TeamMany symptoms of MS aren't visible, and they can change from day to day. Keep the lines of communication open and pay attention to nonverbal clues—they can be an important form of communication. Learning how to manage MS as a team is the best way to be a caregiver while also maintaining a healthy and balanced relationship and a positive family life.
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Share Feelings OpenlyAn unpredictable disease like MS can shift family roles and responsibilities, add financial stress, and use up a lot of emotional and physical energy. Talking about feelings helps to reduce stress and identify ways to maintain an intimate and effective partnership for managing MS.
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Acknowledge MS FatigueOne of the most common symptoms of the disease is MS fatigue. It's not like being normally tired, and a good night's sleep or a nap won't make it go away. Like many MS symptoms, fatigue is invisible, and it's one symptom that MS patients really wish their family caregivers would understand.
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Accept Help for YourselfBeing a caregiver is too hard to do by yourself. Your health and positive attitude are top priorities if your day is spent helping a loved one. If friends or family members offer to help out, accept the offer and give them specific things to do. Also ask about services available in your community. The National Multiple Sclerosis Society offers a wide variety of assistance—recreational, physical and emotional—for people with MS and their caregivers. To find out what services are available in your community, call the National Multiple Sclerosis Society at 1-800-344-4867.
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Make Your Home a Safer EnvironmentSimple modifications can make managing MS easier on you and your loved one. Remove loose rugs and get rid of clutter. Many MS symptoms are triggered by heat, so have a good air-conditioning system or strategically place fans. If stairs are a challenge, consider setting up a bedroom on the main level of the home.
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Use Assistive DevicesAssistive devices, from bathroom grab bars to braces and canes to walkers, can make it safer for your loved one to get around and less likely that you will hurt yourself helping out.
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Keep a Health JournalWrite down appointments, phone numbers, medications, contacts, and questions you want to ask the doctor in a journal. This journal is also a good way to get some input from your loved one so you can feel like you're working together. Keep track of symptoms and any reactions to medications. Your observations are key because nobody knows your loved one better than you.
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Get SupportThink about joining a caregiver support group. Sharing your feelings, information, and caregiving tips with others can make you a better caregiver and help you find the emotional support you need. So many others have walked this pathway before and they have valuable insights to share. Ask your loved one's medical team about locating a support group for yourself and possibly one for your loved one as well.
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Take Care of YourselfCaregiving for someone with MS can be rewarding, but it can also be mentally and physically exhausting. Studies show that caregivers are at increased risk of illness because they often neglect their own health, don't take the time to exercise, and don't give themselves permission to take a break and have time to themselves. Taking care of yourself is as important as taking care of your loved one.
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9 Tips for MS Caregivers