MS and Hospice Care: How to Know When Your Loved One Needs It

MS and Hospice Care Guidance for Families Supporting Loved Ones

Multiple sclerosis is a chronic, often slow-moving disease that can span decades. Because of this reality, many family caregivers don’t know when the disease is entering its end stages. Most of us don’t want to admit when our loved one is approaching the end of their life and instead carry on as normal. However, entering hospice care is often one of the best ways to keep your loved one comfortable, despite their diagnosis. Learn more about the disease’s progression and when hospice care for MS may be appropriate.

What to Know About MS Disease Progression

Most people with multiple sclerosis (MS) deal with occasional symptom flare-ups, not constant discomfort. But over time, many transition to secondary progressive MS, where they’ll have fewer flare-ups but increased, consistent difficulties with things like walking and cognitive function.

Advanced or end-stage MS is not always clearly defined by a specific timeframe. Unlike terminal cancer, where a prognosis might be clearer, MS affects the nervous system in complex ways. The accumulation of nerve damage eventually compromises the body’s automatic functions, such as breathing, swallowing, and speaking. Recognizing that the disease has moved from a manageable chronic condition to a life-limiting one is the first step in getting the right support.

When Is It Time for Hospice Care for MS?

Because MS varies so much from person to person, there is no single alarm bell that rings when hospice is needed. Instead, physicians and families look for a combination of signs that signal a significant decline in health. If you notice any of these symptoms in your loved one, it may be time to talk to their doctor about hospice or palliative care for MS:

• Challenges With Breathing—Weakness in the chest muscles can lead to shallow breathing. You might notice your loved one struggling to catch their breath even while resting, or they may require supplemental oxygen.
• Swallowing Difficulties—When the muscles controlling swallowing weaken, eating becomes dangerous. It can lead to choking, inhaling food or liquid into the lungs, and even severe weight loss.
• Frequent Infections—A weakened immune system and immobility often lead to a cycle of infections. Pneumonia and sepsis are among the most common infections seen in MS end-of-life care.
• Complete Mobility Loss—In the final stages of MS, your loved one may be completely bedbound. They will likely require assistance with all activities of daily living, such as bathing, dressing, and toileting.
• Cognitive Decline—While MS is primarily physical, late stages can involve significant cognitive impairment or dementia-like symptoms that make communication difficult.

What to Expect from Multiple Sclerosis Hospice Care

MS end-of-life care includes a wide range of services, all designed to keep your loved one comfortable despite the late stages of their condition. You can expect all of the following from a certified hospice team:

• Medical Equipment—Hospice coordinates the delivery of hospital beds, wheelchairs, oxygen, and other necessary medical supplies to your loved one’s home.
• Medication Management—The team carefully oversees medications to ensure pain, anxiety, and other symptoms are controlled effectively.
• Pain Management—This is the main goal of hospice care. Teams are trained in the types of pain that come along with MS and how to keep your loved one comfortable.
• Personal Care—Home health aides might assist with things beyond medical needs, like hygiene, bathing, and changing. This allows family caregivers to take a break and relieve some of the stress of caregiving.
• 24/7 Support—Families have access to on-call nurses 24 hours a day to answer questions or handle emergencies. While nurses aren’t at your loved one’s home all day, their constant support helps prevent trips to the ER.

How Hospice Supports Families, Too

In addition to caring for your loved one, hospice providers also help you and your family along the way. MS family support includes everything from caregiver education to bereavement support as you deal with the loss of a loved one. Caring for someone with advanced MS is physically exhausting and emotionally draining. Hospice offers caregivers a respite, giving them the chance to take a break, rest, or attend to their own needs, knowing their loved ones are in safe hands.

A Compassionate Hospice Team in Los Angeles

Deciding to move a loved one into hospice care is one of the hardest decisions a family can face. It requires acceptance that the battle against the disease has changed. However, families who choose hospice often report a sense of relief once the support is in place. At Agape Hospice & Palliative Care, we’re glad to help people in Los Angeles and Orange Counties take advantage of all the benefits hospice has to offer. Get in touch with us today for details about how we can support you.