Multiple sclerosis (MS) is a chronic disease that attacks the body’s central nervous system. MS destroys the protective coating (myelin) that covers and protects nerves. The symptoms of MS vary from person to person. For each person, symptoms can vary from relapse to relapse. MS can go into remission—it will not cause any symptoms for a period of time. Then the disease can flare or relapse, bringing about a period of increased symptoms.
The typical lifespan of a person with MS is similar to that of people who do not have MS, but MS can be unpredictable and can make everyday tasks more difficult. Individuals diagnosed with MS, their family, and their friends will likely face many challenges as the disease progresses. (1)
The Importance of a Caregiver
Providing the emotional and physical support a person with MS needs can be deeply rewarding to caregivers. After all, this is a crucial time in the relationship between you and your care recipient. It’s also an important point in the relationship between you and your care recipient’s friends and family. Most caregivers are a spouse or a child, so it’s also an important point in the relationship between you, your loved one, and your family members.
Again and again, research demonstrates that the biggest improvements and successes appear in people who continue their treatment plan without interruption or delay. The patient’s caregiver is an important part of that success.
Help Your Loved One Stick to a Treatment Plan
Each person with MS will have different levels of need at different times. While the disease is in remission, a caregiver may only need to check in occasionally to make sure the care recipient is doing well and maintaining his or her medicine schedule. Once MS enters a period of relapse, a caregiver may need to provide more constant, hands-on care to the care recipient. The caregiver may need to stay with the patient throughout the day, helping him or her eat, get dressed, bathe, and conduct everyday activities.
A caretaker should help the care recipient:
- Make and keep all doctors’ appointments for check-ups and injections. Finding and sticking to a treatment plan helps the patient reduce the frequency and severity of MS relapse.
- Research treatment options and the risks of each treatment. Each medicine comes with its own side effects and concerns. Other health issues may complicate these potential problems. Discuss all concerns with the patient’s doctors.
- Handle health insurance forms and financial concerns. Financial planning for both your health expenses and your personal expenses is an important part of disease care. Patients and caregivers may see an impact in wages as a result of the time needed for disease care. You may wish to meet with a financial counselor who has experience in healthcare expenses.
- Refill and pick up prescription medicines.
- Make the home MS-friendly. It may be necessary to renovate your home (or the care recipient’s home if you do not live together) in order to make it more accessible and comfortable for the person with MS.
The Toll of Caregiving
Caregiving can be overwhelming. The job of caring for a loved one with MS can be a 24/7 job. You may find it impossible to balance your personal life with your responsibilities to your care recipient. You may also hesitate to ask for help when you need it most. But that can be dangerous for both you and your care recipient. In fact, research shows ignoring your own personal needs can lead to feelings of anger, isolation, and regret. (2)
- Don’t be afraid to ask for support. Sharing the responsibility of caring for your loved one helps both you and your loved one. It allows you the chance to pursue your own personal interests, and it allows your loved one the opportunity to interact with and share important moments with other friends and family.
- Take care of you. Each day, you look out for the personal health and well being of your loved one, but if you’re not also looking out for yourself, you will pay a price. For your sake and the sake of your loved one, it’s important you get adequate sleep each night, eat balanced meals with plenty of fruits and vegetables, and get regular exercise. Encourage other members of your family to do the same, as you will all need the strength and stamina that a healthy lifestyle provides when taking care of your loved one.
- Don’t hide your feelings. Caregiving is emotionally and physically demanding. Though you will be tempted to hide your emotions from your care recipient for fear it might upset him or her, you need to find a space, a person, or a group of people who allow you to be open and honest about your frustrations, concerns, and worries. This may come from a loved one, a group support service, or an individual counselor. The sooner you take care of your emotional health, the better.
Resources for Multiple Sclerosis Caregivers
National MS Society
1100 New York Avenue, N.W.
Washington, D.C. 20005
Phone: (800) 344-4867
Web site: www.nationalmssociety.org
National Alliance for Caregiving
4720 Montgomery Lane
Bethesda, MD 20814
Phone: (314) 718-8444
Web site: www.caregiving.org
Caregiver Action Network
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Phone: (301) 942-6430
Web site: www.caregiveraction.org/
Centers for Medicare & Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244
Phone: 800-MEDICARE (Medicare Service Center)
Web site: www.cms.gov