Multiple Sclerosis: Tips & Resources for Caregivers
More than 400,000 people in the U.S. suffer from Multiple Sclerosis (MS) and an average of 10,400 new cases are diagnosed each year. That means that probably several times that number of people are faced with the role of caregiver for a loved one or patient with MS.
How MS affects each individual sufferer can be extremely changeable and unpredictable. Caregivers may not know from one week to the next how MS will affect the patient. He or she may experience attacks and remissions, loss and recovery or partial recovery of abilities and dramatic mood swings. One day a person with MS can dress alone, the next day the person can’t. The caregiver frequently may have to take on and then give back responsibility for tasks.
Perhaps one of the most valuable tips for MS caregivers is this one from an article on Healthline entitled Caregiver Support: “One of the best first steps as a caregiver is staying calm and assessing what you need to support your loved one.”
As a caregiver, you will have many questions, especially as MS progresses to advanced stages. A Google Search on “home care for MS patients” yielded about 7,210,000 results! Of course, not all information on the Internet is accurate, but there are several credible resources that you can turn to for excellent advice. We don’t claim to list all of them here, but the following will at least give you a place to start in educating yourself about the many aspects of the disease and the resources and care tips that are available:
- The National MS Society.
- Their 114-page booklet entitled “Caring for Loved Ones with Advanced MS: A Guide for Families” covers every aspect of MS and is an excellent resource for caregivers and families.
- Their brochure, “A Guide for Caregivers,” covers in 30 pages the major topics of Emotional Support, Caring at Home, Hiring Help, Other Care Options, Practical Decisions and Resources.
- MS Atrium.
- The MS Atrium is an educational site that presents emerging trends and innovative information on MS. Content and presentations were developed in consultation with an advisory committee of MS experts.
- The website includes comprehensive tools and resources designed to help enhance patient care, disease insights, emerging trends, and hot topics on MS.
- http://www.healthline.com/health/multiple-sclerosis. The section of this website devoted to MS provides background on the disease, tips on caregiver support, and lengthy lists of related articles and videos.
- The Dakota Travel Nurse Homecare Blog features many helpful tips for caregivers. See especially, “Parkinson’s Disease: Tips for Caregivers,” and “ALS Disease: Caring for Patients and Caregivers.” Many of the tips in these blogs are also applicable to MS caregivers.
- The National Family Caregivers Association hosts an online forum where you can connect with other caregivers if you feel depressed, want to share a piece of advice, or feel isolated and want to talk with others who might be experiencing the same thing.
- The Family Caregiver Alliance provides state-by-state resources for caregivers, including respite providers.
- The National Council for Independent Living is a national network for people with disabilities. They offer technical advice, advocacy, and training to help people stay in their own homes.
Get help. Whenever possible, a family member should accompany the person with MS to their medical appointments and ask questions of the doctor, nurse and social worker. The areas to assess include your loved one’s needs – both your perceptions and theirs, your home environment, and your own health, emotional state, and other commitments. A family caregiver has to determine how much they can and can’t do themselves and what type of outside support is needed.
Help is available through local and community services. These include neighbors, friends, churches, synagogues, senior centers, Meals on Wheels, and door-to-door vans. Maintaining a relationship and communication with the person with MS and the family can be the most challenging and rewarding aspect of caregiving.
Dakota Travel Nurse Home Care provides custom care for patients with MS disease through ongoing communication and evaluations of the patient’s and the family’s needs. Visit our website to see a list of our services, which include but are not limited to:
- Skilled nursing services
- 24-hour live-in care
- Safety supervision
- Medication reminders and management
- Companion care
- Respite care
- Meal preparation
- Shopping & other errands
Call us today at 701.663.5373 for a free consultation.