Multiple sclerosis is an unpredictable disease with many faces, and though there are effective medications available to treat it, people with MS often need help. If someone close to you has been diagnosed with MS and you will be an MS caregiver, you may feel overwhelmed. Armed with information and a positive attitude, though, you may find you get back as much as you give. Here are some tips to help you manage your new role successfully.
Because MS is a complex disease, the more you know about it, the better prepared you'll be to understand and respond to the needs of your loved one. Make sure you know which of several forms of MS your loved one has. Understand the medications and other treatments that are prescribed. MS patients have a team of healthcare providers; don't hesitate to ask them questions. You can also find good resources through reputable organizations such as the Multiple Sclerosis Society.
Be part of the team
Managing MS well is something you, the patient, professional caregivers and the healthcare providers will do together. Communication is key, so encourage your loved one to tell you what they need and when they need it. Join in where possible - for instance, exercise can help MS symptoms, so talk to the doctor about a safe activity program that you can do together with your loved one.
A person with MS can experience significant periodic or even daily changes in how they feel, so be ready to respond to symptoms that wax and wane. People with MS may be fine for periods of time, or they might have difficulty walking, numbness, vision loss, and bladder and bowel problems. In more serious cases, they may have difficulty swallowing or experience paralysis. If you don't feel comfortable handling some of these matters, get help – there are professionals out there to assist you.
Many MS symptoms are “silent,” so sharpen your powers of observation. These signs include memory loss, muscle pain and, in particular, fatigue. If your loved one is the type that likes to power through, you can help by making sure they don't overexert themselves, which can cause a relapse.
Adjust the environment
Make sure the home is MS friendly. People with MS can be sensitive to heat, so check that you have adequate climate control. If stairs are a problem, minimize their use or be ready to help out with a trip upstairs to bring down an item that's been forgotten. Be innovative about assistive devices that will let your loved one do more for themselves – from elastic shoelaces and buttonhooks to specially designed kitchen utensils and bathroom safety devices.
You want to do your best for the person in your life with MS. That means getting help when you need it. You don't have to be a hero every single day. Look into support groups and seek out professionals who can help you tackle challenges. It's not only good for you, it's good for the person you're caring for.
As treatment improves, people with MS are enjoying longer and better lives, giving you lots of opportunities to enhance their quality of life. MS caregiving can be challenging, but it can also be an opportunity to create a rewarding relationship for all involved – the patient, the family, and the professionals.