What to Consider at the End Stage of Multiple Sclerosis

Although multiple sclerosis (MS) is not a fatal disease, it is highly unpredictable. The course of MS is different for every individual with the disease. Most people with MS will experience periods of remission, in which their symptoms lessen or disappear, and periods of exacerbation, in which symptoms become worse.

Each exacerbation can lead to more scarring and new symptoms. As symptoms progress, they can affect mobility, cognition, and mental state. Eventually, the disease can reach the end stage at which independent living becomes more difficult.

This article will discuss the symptoms of the final stages of multiple sclerosis, how to find the right care during this time, and what to expect.

Symptoms of the Final Stages of MS

In the final stages of MS, symptoms can become more severe and debilitating. This symptom severity can affect your quality of life and your ability to remain independent.

Symptoms can include:

• Spasticity, or a tightening of the muscles that limits mobility
• Weakness of the muscles
• Loss of balance and coordination
• Tremor, or a shaking of the limbs
• Bladder and bowel problems such as incontinence
• Cognitive issues, including difficulty processing information
• Dizziness
• Difficulty swallowing
• Speech problems
• Hearing loss
• Breathing problems
• Loss of vision or blurred vision
• Depression

Complications

In the end stages of MS, symptoms and some treatments can lead to complications. These include:

• Pressure sores: Lack of mobility or spending long periods in bed or in a wheelchair can cause sores to form on the skin.
• Osteoporosis: Bones can become more brittle due to limited mobility and weight bearing. The use of corticosteroids can also affect bone density.
• Aspiration pneumonia: Having problems swallowing can cause food to enter the lungs and start an infection.
• Severe bladder or kidney infections: Bladder issues and urinary dysfunction due to MS, such as being unable to empty the bladder, can lead to infections.

Care Options to Consider

Considering care options for end-stage MS before they are necessary can help you make a decision that is right for you.  

In the end stages of MS, daily activities can become extremely taxing and difficult to do. People with advanced MS may need extra care and trained professionals to help with their needs as independent living becomes more difficult.

Long-Term Care

Long-term care can help people with advanced MS live as independently as possible for as long as possible. As symptoms progress with MS, daily activities such as showering, dressing, and eating may become difficult to do alone.

Often, long-term care is provided by loved ones in the home. However, some people may find that this puts too much strain on the relationship. Outside service providers can help.

Long-term care is typically provided in the home and can include personal care such as help with bathing, home care such as someone to help with meals and upkeep of the house, and health care such as physical or occupational therapy.

Palliative Care

The focus of palliative care is on providing a holistic approach to care.  

Palliative care aims to improve quality of life by maintaining activity for as long as possible and relieving pain and other symptoms. It supports the family of the person with MS and integrates psychological help to deal with the mental challenges that come with the many changes occurring in the body.

In palliative care, a team of healthcare professionals, including specialists, will work to address the medical, emotional, and social challenges of living with advanced MS. Palliative care can take place at home, in a hospital, a nursing home, or a specialized facility.

Hospice

A person may transition from palliative care to hospice when a healthcare provider believes they have six months or less to live. Hospice is much like palliative care in that it provides comprehensive care to the person with advanced MS plus support for family and loved ones.

Hospice can take place at home or in a facility such as a nursing home, hospital, or specialized hospice center. While in hospice, the patient has someone from the hospice team checking in regularly and providing around-the-clock support.

Finding the Right Care

The type of care you need depends on your symptoms, how mobile and independent you are, and your comfort level.

Talking to your primary healthcare provider and MS specialist can help you decide your best options. If you need more support in finding the right care, an MS navigator at the National Multiple Sclerosis Society can also provide guidance.

Questions to consider when looking for the right care are:

• Where would you feel more comfortable receiving care? At home? In a nursing facility? A hospital?
• Do you have someone who can give you care, or would it be best to reach out to healthcare providers for support?
• Have you previously explored your options? Did you visit a skilled nursing facility or nursing home that felt like a good fit?

What to Expect During the Final Stages of MS

MS is a highly unpredictable disease, and the final stages will look different for everyone. As symptoms become more complex and complications arise, quality of life can decrease. Independent living may become more difficult.

Certain symptoms, like spasticity, can make it hard to remain mobile and perform daily activities such as getting dressed.

Depression caused from changes in the brain itself and from the burden of living with the disease can create a sense of feeling overwhelm. It can affect the desire to continue healthy habits or adhere to a treatment plan. The risk of suicide may also increase.

Cognitive problems can affect skills that may have once been easy. Managing finances, driving, and remembering to take medications can all become difficult. Memory can also be affected.

Summary

MS is an unpredictable and progressive disease that can worsen over time. As symptoms progress, quality of life can be affected, making it difficult to live independently. People who reach end-stage MS may need to consider different plans of care such as long-term care, palliative care, and hospice.

A Word From Verywell

Living with an incurable and unpredictable disease like MS can be overwhelming. While many people live a long, independent life with the disease, and medications work to slow the disease’s progression, there is no cure.

As symptoms progress it may become more difficult to live independently. Exploring your options now can help better prepare you for the future and allow you to make your wishes known to family and friends so that you can live the best possible life with end-stage MS.