Caring for a loved one with a chronic and debilitating disease such as Multiple Sclerosis (MS) can be a tricky space to navigate. MS is a chronic neurological condition that affects the central nervous system, leading to a wide range of physical and cognitive symptoms. Providing care and support for someone with MS requires empathy, patience, and knowledge. 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.
This blog offers the perfect multiple sclerosis care plan. Through this you will be able to understand the various aspects of caring for a loved one with MS. It comprises some practical advice as well as ways in which you can offer emotional support to your 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 caring for someone with multiple sclerosis. Below are a few detailed blogs on Multiple Sclerosis and everything you need to know about the condition.
- A Guide to MS
- How does multiple sclerosis affect the immune system?
- Fatigue in MS
- Vision problems in MS
- Exercises for MS
Understand the caregiver’s role
Caring for someone with MS encompasses a range of responsibilities, and the caregiver plays a vital role in enhancing the quality of life for the person with MS. The caregiver’s role can include the following:
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 others who are also caring for someone with MS, 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!
Stay Organized
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!
Nutrition
Ensure the patient’s nutritional intake is in keeping with the patient’s condition and diet as prescribed by their doctor and nutritionist. For some individuals with MS, dietary modifications may be necessary to manage specific symptoms or medication side effects.
Collaboration with the Healthcare Team
Ensure the person with MS attends regular medical check-ups and follows the recommended treatment plan. Collaborate with the healthcare team to manage and alleviate specific MS symptoms, such as fatigue, pain, spasticity, and cognitive issues. Be sure to keep track of changes in the person’s condition and report them to the healthcare team. This information is vital for adjusting the treatment plan as needed.
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’t 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 important too
Meeting the numerous needs of an individual with MS can be a daunting task. Hence, for those of us who are caring for someone with multiple sclerosis, 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.
Practical tips for caregivers
Below are some practical tips for you to provide effective care for someone with MS:
- Take the time to learn about MS, its symptoms, and available treatments. With the right knowledge, you can make informed decisions and offer better support.
- Maintain open and honest communication with the person with MS. Urge your loved one to share their feelings and concerns, and actively listen.
- Joining support groups for caregivers of MS patients can provide you with a sense of community, emotional support, and practical advice from others who will be able to understand your situation and empathize with you.
Emotional support
Here are some ways to provide emotional support:
- Pay attention to what the person with MS is saying and encourage them to express their feelings. You can do this by asking them simple open-ended questions.
- Be empathetic and validate their emotions.
- Support their independence, by bolstering their confidence as much as possible. Offer assistance only when needed, and encourage them to do things on their own whenever possible.
- Involve the person with MS in planning their care and daily activities. This can help them achieve a sense of control over their life.
At Plexus, we offer rehabilitation services for individuals with MS, as well emotional support and counseling for their caregivers.
FAQs
How to care for someone with MS?
By being empathetic, updated with the latest in treatment and care for MS, proactive, and supportive, you can care for someone with MS.
What does someone with MS look like?
Muscle weakness, fatigue, vision problems, trouble with balance and coordination, and cognitive issues are some of the most common visible symptoms of someone with MS.
Is it hard to live with someone with MS?
The unpredictability of MS can make it difficult to live with someone with the condition. The symptoms can be varied, and can come and go without warning. This can be extremely frustrating for both the person with MS and their caregivers.
What are the needs of someone with multiple sclerosis?
Regular exercise and balanced meals are the primary requirements of persons with MS.
How do you cope with living with MS?
Coping with MS requires timely and appropriate strategies that include maintaining a healthy lifestyle, getting support from loved ones, managing symptoms through medication or therapy, as well as emotionally adapting to physical limitations. In order to manage MS, doctors recommend engaging in enjoyable activities, staying abreast with the latest treatment options, and adopting a positive mindset.
What are the signs of end stage multiple sclerosis?
End-stage MS comes with severe physical limitations. Some people experience complete disability, immobility, and difficulties with daily tasks. Advanced symptoms, such as respiratory issues and complications, have been known to impact overall quality of life. At such times, palliative care can provide comfort, symptomatic relief and management, as well as support for the individual and their caregivers.
What is the 4th stage of MS?
The fourth stage of MS typically involves significant mobility limitations, profound disability, as well as increasing difficulty in performing daily activities. Its symptoms include spasticity, severe muscle weakness, loss of coordination, bladder and bowel dysfunction, cognitive decline, sensory disturbances, and fatigue. The individual’s quality of life is also significantly impacted, many of them require extensive assistance with personal care and daily tasks.
How fast does MS progress?
The progression of MS varies among individuals. Some patients may experience a relatively mild course with long periods of remission. Others may have a more aggressive form of MS typically characterized by disability and rapid progression of symptoms. Factors such as genetics, age at onset, type of MS (relapsing-remitting, primary progressive, secondary progressive), and response to treatment can also determine the rate of progression.
