Caring for someone with a chronic illness like MS can be deeply satisfying. Partners, family, and friends can be drawn more closely together when they meet the challenges, but caregiving can also be physically and emotionally exhausting, especially for the person who is the primary caregiver. That person is most often a partner or spouse, but can also be a child, parent or friend.
As a carepartner, you likely cannot — and should not — handle everything alone. The most successful carepartners welcome and appreciate the practical and emotional support of other people. Also, successful carepartners don’t give up the activities or hobbies they enjoy. You can adapt the activities that you and your partner used to enjoy together in order to continue enjoying them together, and you can pursue your personal hobbies as well.
If your loved one with MS needs full-time support while you take time away from home, ask family and friends for help. Other family members or friends are often willing — even pleased — to spend time with the person with MS, and many organizations have respite care programs.
Learn more in our Guide for Support Partners and other publications.
You can best provide care for a loved one when your own health and wellness are adequately addressed. Pay attention to physical needs and changes, and keep up on preventive health measures like exercise, diet and regular medical examinations.
In a family affected by MS, everyone — carepartners in particular — may experience mood changes. Common feelings in carepartners include guilt, resentment and depression. Pay attention to changes in mood and to find an effective way to acknowledge feelings, maintain communication and seek help.
Time spent caring for yourself is not selfish. It will not detract from your care for a loved one with MS, but in fact will bolster the long term success of the carepartnership as a whole.
Care options and additional resources
Some people manage independent lives by employing personal-care attendants, housekeepers and/or home health aides. Others decide that a residential long-term care facility – such as an assisted living or skilled nursing facility – will best meet their needs. The goal is keep everyone healthy, safe and even happy, and to avoid unstable, draining or even dangerous situations.
- The Society's Hiring Help at Home (pdf) publication includes checklists to help assess needs, sample job description forms for use in hiring and a sample employment contract, along with suggestions on recruiting voluntary or paid help at home.
- National Adult Day Services Association - Adult day centers, also known as adult day programs, are non-residential facilities that support the health, nutritional, social, and daily living needs of adults in professionally staffed, group settings. NADSA provides an online search tool to locate adult day centers (with over 5,000 listings) throughout the U.S. Also provides resources to educate consumers on how to locate and evaluate an adult day center.
- When looking at in-home care assistance or long term care facilities, it's important to look at what insurance coverage and government assistance programs such as Medicaid can provide. An elder law attorney can help look at your financial picture and plan for any future assistance needed to cover these services.
- MS in Focus
- Tips for People with MS and Their Partners – Planning for the Future-webinar
- Easter Seals Adult Day Care Services - Easter Seals provides a variety of home and community-based services affording adults and seniors opportunities to live, learn, work and play as a vital part of their own community or neighborhood. Use locator to find your local Easter Seals and contact them for more information.
Contact an MS Navigator if you need help identifying carepartner resources in your community and download this resource guide (pdf).