Getting a multiple sclerosis diagnosis can be devastating, not just for the patient, but for the people that love them, too. If someone in your family has recently received a multiple sclerosis diagnosis, you may be wondering how to best care for and support them.
At Premier Neurology, we help MS patients and their families navigate this complex disease by supporting them and offering guidance at every step of their journey. Here are five tips you can use to care for your loved one who has been recently diagnosed with MS.
1. Educate Yourself
An MS diagnosis can feel overwhelming at the outset. But in this situation as in all of life, knowledge is power. The more you know about multiple sclerosis, its stages, progression of the disease, treatments, therapies, and tips for MS caregivers, the more confident and prepared you will be.
There are tons of resources for patients with MS and the family members who care for them. National foundations such as those listed below will offer information, education, tips for caregivers, information on how to support someone with MS, and lots more. Seek out information and support from national organizations such as:
National Multiple Sclerosis Society
2. Plan Ahead For Changes At Home
If your spouse is the one diagnosed with MS, you can expect to make some changes at home. An MS patient should never be forced to give up their independence – including household chores – until necessary. However, it is a good idea to think about the future and plan for ways to redistribute daily chores along with the progression of the disease. There may be a time that you need to do more of the cleaning, cooking, shopping, yard work, etc. Approach these changes slowly. An MS diagnosis is disruptive enough, without changing everything about daily living all at once.
If it’s a family member that you don’t live with who is diagnosed with MS, you may want to work with your other family members to create a plan of care. Who will cook and clean for this person? Who will take them to doctor’s appointments? If the time comes, who will move into their home to help care for them? Again, these changes come with time, so there’s not necessarily any rush. But it is good to think ahead so that when it’s time for a change to be made, you’ll be ready.
You may also want to start thinking about structural changes that will be needed at home, such as wheelchair ramps, handicap accessible bathrooms, and reorganizing the home so that your loved one doesn’t have to walk up and downstairs.
3. Get Organized With Medical Documentation
Multiple Sclerosis is a long-term condition, so over time, you’ll end up with a mountain of paperwork documenting doctor visits, medications, treatments, etc. Start getting organized now. Keep up-to-date lists of medications, appointments, and symptoms. Create binders or spreadsheets that will help you keep all your medical information organized so you can find what you need easily and quickly.
4. Support Their Healthy Lifestyle
You can support your loved ones with MS by joining them on their quest for a healthier lifestyle. Learn to cook healthy recipes, join them at the gym or on a hike, show up at their door with a healthy home-cooked meal, buy yourself and your loved one matching pairs of walking shoes, etc. However, your loved one is focusing on improving their lifestyle, join them, support them, and celebrate their successes.
As a caregiver, it’s critical to take care of your health, too. Caregiving can be an exhausting, emotionally draining job at times. Keeping yourself healthy, well-fed, active, and rested will help you weather the sometimes trying experience of being a caregiver. It’s like what they tell you when you take a flight – put on your oxygen mask first. You can’t take the best care of your loved one with MS unless you take care of yourself, too.
5. Reach Out For Help
No matter how tough, resilient and resourceful you are, you will need assistance to take care of your loved one with MS eventually. Don’t be afraid to ask for help. Reach out to your support system to help you when you need a break, a helping hand, or simply a listening ear. You may not be the person who has been diagnosed with MS, but you are along for this journey just the same. Don’t underestimate your own needs at this confusing and stressful time.
Being a full-time caregiver for a patient with MS can be a thankless job, but you don’t have to go it alone. Many organizations can provide support to help you as an MS caregiver. Find an organization that offers respite care services, so you can take a well-deserved break when you need it, and your loved one will still have someone there to care for them while you’re gone. The Caregiver Action Network can connect you with lots of resources and support for your work as an MS caregiver. Our office is also happy to connect you with MS support groups and resources to help you along your journey.
Need help and support as an MS caregiver?
At Premier Neurology, we believe in supporting our patients and their families at every step of their illness journey. If you need help learning how to care for a patient with MS or want to be connected with organizations that can help you with support and respite care, reach out to our office today. We’re always happy to help.