Caring for someone with a chronic and debilitating disease such as Multiple Sclerosis (MS) can be a tricky space to navigate. The condition is so unpredictable that it often becomes a rollercoaster filled with ups, downs, twists, and turns. However, with the best treatment for Multiple Sclerosis, coupled with a little support and guidance, one can go on to become the best caregiver for their loved one.
Know the Condition First
A basic understanding of the disorder is essential, as the symptoms and type/degree of disability may vary for every individual with MS. For instance, while some people may have mild symptoms that do not warrant intense treatment for Multiple Sclerosis, others may have trouble getting around and doing daily tasks such as taking a bath or wearing their clothes. Hence, it is crucial to understand the specific challenges that come with caregiving.
Connect With Others
One can feel as if they are on their own and that others will not understand what they are going through! Networking with other caregivers, either in a support group or through online message boards and chats, can help prevent the guilt and turmoil that can arise when negative emotions surface. Talking with others can also help see the situation from another viewpoint, brainstorm new solutions for coping with MS-related issues.
Say Yes to Help
Turning down offers of help or not following up on them can be a big mistake. Instead, it is crucial to ask for help wherever necessary. For instance, if you need someone to stay with the patient while you go shopping once a week or need help with the transport to and from the clinic — do not be afraid to ask!
Staying organized can help reduce stress and free up more time to do other essential things. It may seem cumbersome at first, but staying on top of the information and care can help streamline appointments and treatment plans. It will save a lot of precious time in the long run. Keep a log to track medications, symptoms, and the results, and use a calendar (either written or online) for appointments. Also, try to store all the information in the same place so that they are easy to find and keep updated.
Get Assistance With Movement and Mobility
Weakness, muscle tightness, balance disturbance, and general fatigue can mean that people with MS can find it difficult to get around. In such cases, as a caregiver, opting for wheelchairs, building ramps, making kitchen renovations, and installing lifts or mobility aids can help. Hence, it is important to take care about the accessibility of these accommodations. Calling ahead or having a backup plan in place before outings is a great idea!
Follow the 4 P’s of Energy Conservation
For individuals suffering from MS, it can be difficult to complete daily chores due to fatigue and decreased activity tolerance. Hence, it is important for them to conserve their energy throughout the day. Keep these four simple steps in mind:
- Prioritize: Decide what needs to be done today, and what can wait for a later date! Organize the daily activities in such a way that the MS patient gets enough rest each day.
- Plan: Plan activities ahead for the patient, so that they can get a good balance between work, rest, and leisure. Gather all the supplies and equipment needed before starting any activity.
- Pace: Maintain a slow and steady pace, instead of rushing the individual suffering from MS into performing as many daily tasks as possible, as quickly as possible. This may lead to complete exhaustion or increased fatigue, and in turn, inability to perform tasks later in the day.
- Position: Bending and reaching can cause fatigue and shortness of breath. Hence, think about the patient’s body position while completing various tasks throughout the day. Ensure to use adaptive equipment to make them less stressful.
Self-care Is Also Important
Meeting the numerous needs of an individual with MS can be a daunting task. Hence, for caregivers, it is important to keep in mind the following steps:
- Follow a well-balanced and nutritional diet: even on the busiest days, be sure to eat healthy and nutritious food to get all the energy needed.
- Get ample sleep: for most people, this means between seven and nine hours of good quality sleep every night. Get a 20-minute snooze to refresh and recharge.
- Exercise daily: The physical needs of caring for someone with MS will vary but may include bathing, dressing, lifting, feeding. Since all of these activities can be physically demanding, exercise is key to overall mental well-being. At least carve out a half hour or so every day to take a walk or do yoga.
- Take a break when needed: take breaks throughout the day to engage in relaxing, enjoyable activities. Try reading a book, call a friend on the phone, or go out for a walk with a friend or another caregiver to get rid of mental stress and exhaustion.