Caring for someone with multiple sclerosis (MS) involves unique stresses and uncertainties. The disease is unpredictable, so it’s hard to know what a person with MS will need from one week to the next, from changes in the home to emotional support.
One of the first steps you can make as a caregiver is to stay calm and assess what you need to support your loved one. Do you need help on a regular basis? Or, do you need the occasional break from the stresses and responsibilities of caregiving? Are you feeling financial pressure? Does your loved one have emotional symptoms you aren’t sure how to handle? These questions are common as MS progresses. However, caregivers are often reluctant to ease their own burden and take care of themselves.
The National MS Society addresses these issues in their guidebook, Caring for Loved Ones with Advanced MS: A Guide for Families. The guide covers every aspect of MS and is an excellent resource for caregivers.
Caregivers have other resources available to them, as well. Several groups offer information on virtually any condition or problem that people with MS and their caregivers may encounter.
National organizations are available to help caregivers lead more balanced lives:
- The Caregiver Action Network hosts an online forum where you can connect with other caregivers. This is a good resource if you want to share a piece of advice, or if you feel isolated or depressed and want to talk with others going through the same experience.
- The Family Caregiver Alliance provides state-by-state resources for caregivers, including respite providers.
- The National Multiple Sclerosis Society hosts the MS Navigators program where professionals can help connect you to resources, emotional support services, and wellness strategies.
Some of the physical and emotional problems associated with MS are difficult for caretakers to resolve. To help, informative materials and services are also available to caregivers through these organizations.
Learn to recognize the signs of burnout in yourself. The signs resemble the classic symptoms of depression, such as:
- emotional and physical exhaustion
- diminished interest in activities
- trouble sleeping
- feeling as if you’re on the verge of tears
If you recognize any of these signs in your own behavior, call the National Multiple Sclerosis Society at 800-344-4867 and ask to speak with a navigator.
It’s all right to take breaks and ask for help. There’s absolutely no need to feel guilty about it, either. In the end, you’re doing your loved one a disservice by allowing yourself to become overly stressed out. Taking some time off isn’t a sign of failure or weakness.
Make a list of family members and friends who have offered to help in the past and don’t hesitate to give them a call when you need to take a break. If it’s an option, you can hold family meetings to divvy up the responsibilities and to make sure everyone is doing their part.
If no one in your family or friend group is available, you can hire professional respite care to provide temporary caregiving while you rest and recharge. You can likely find a local home care company that offers this service for a fee.
Companion services may be offered by local civic groups, like the U.S. Department of Veterans Affairs, churches, and other community organizations. Also, consider contacting your state, city, or county social service agencies for help.
A regular meditation practice can keep you relaxed and grounded throughout the day. Techniques that can help you stay calm and remain levelheaded during stressful times include:
- music therapy
- pet therapy
Exercise and yoga are both especially good for fostering your own health and reducing stress.
In addition to these techniques, it’s important to make sure you’re getting enough sleep and eating a healthy diet high in fruits, vegetables, fiber, and lean sources of protein.
By staying organized, you can keep stress to a minimum and free up more time to do the things you love.
It may seem cumbersome at first, but staying on top of your loved one’s information and care can help streamline doctor appointments and treatment plans. This will save you precious time in the long run.
Here are some ways to stay organized while you care for your loved one with MS:
- Keep a journal to track their:
- medication side effects
- food and water intake/nutrition
- bowel movements
- mood changes
- cognitive changes
- Have legal documents so you can make healthcare decisions for your loved one.
- Use a calendar (either written or online) for appointments and to keep track of when to give medications.
- Write down phone numbers of important contacts and keep it near the phone.
You’re not expected to know every little thing about MS, but the more you know about the symptoms, side effects, and treatment options, the faster you’ll be able to get the help you need.
The best way to stay informed is to read information pamphlets. Ask your loved one’s doctor if there is any literature you can read or reliable resources online. Find out about clinical trials in the area. Come prepared with questions to ask the doctor at your next visit.
Knowing more about your loved one’s illness can make you feel more confident and in control of your own life. It will also allow you to adapt more easily to changes in your loved one’s treatment plan.
Last but not least, don’t hesitate to seek professional therapy for your own mental health. There’s no shame in seeing a counselor or other mental health professional to talk about your emotional well-being.
If you’re feeling particularly depressed or anxious, you may need medications to help make you feel better. Once again, there’s no shame in taking medications for your mental health.
You can ask your doctor for a referral to a psychiatrist, therapist, or other mental health professional. Your insurance may cover these types of services.
If you can’t afford professional help, find a trusted friend or online support group where you can openly discuss your emotions. You can also start a diary to write down your feelings and frustrations. Oftentimes, venting on paper can be extremely therapeutic.
The day-to-day wear and tear of being a caregiver can really add up. Don’t ever feel guilty for taking a break or asking for help when providing care for someone with MS. By taking steps to reduce stress and care for your own physical and emotional needs, you’ll have an easier time taking care of your loved one.