Caregiving and SPMS: What to expect

When you’re caring for someone with multiple sclerosis (MS), the change from relapsing-remitting MS (RRMS) into secondary progressive MS (SPMS) can bring new challenges, both practical and emotional.

Understanding what this transition means and what to expect as a caregiver can make a difference in how you support your loved one and yourself.

Spotting the transition from RRMS to SPMS

You may begin to notice that your loved one’s MS symptoms no longer fully resolve after relapses, and daily functioning gradually declines.

Because this change can be subtle, diagnosis is often made retrospectively, based on how symptoms progress over time rather than on a single event.

Unlike RRMS with its fluctuating pattern, SPMS is marked by a continuous decline, with less recovery between relapses and steady progression even without new relapses. At this point, certain symptoms may become more persistent, including:

loss of mobility, with walking or balance getting harder
muscle stiffness, spasms, or tightness in the legs
weakness in the arms and legs
“brain fog,” worsening memory, and trouble concentrating
bladder and bowel problems, such as an urgent need to go or constipation
numbness, tingling, and other sensory changes
fatigue that affects physical energy and clear thinking
emotional changes, including frustration, sadness, or withdrawal.

Recognizing these gradual shifts early can help you plan ahead, adjust care routines, and access the proper support when it’s needed most.

Shifting physical needs

Supporting someone through SPMS may mean taking on more physical caregiving tasks, such as:

assisting with moving, bathing, and dressing
modifying your home to prevent falls, adding grab bars or ramps
helping coordinate medication routines and monitoring side effects
adapting routines and meals based on ongoing fatigue, spasms, and bladder issues.

Talk with their MS care team to develop strategies to manage increased physical care needs, which may include using assistive devices such as transfer lifts or shower chairs and seeking support from family and friends.

Shifting emotional needs

Caring for someone with SPMS can be just as emotionally demanding as it is physically challenging. As their needs change, the unpredictability of the disease and the ongoing responsibilities can bring feelings of anxiety, grief, or burnout.

Staying connected with others, making time for activities you enjoy, and seeking respite or professional help can make a meaningful difference.

Health aides and care homes

SPMS brings new challenges at different stages, and having extra help can make daily life more manageable.

A home health aide can provide skilled assistance, giving you more space to focus on your relationship rather than on daily tasks.

If caregiving starts to feel too difficult to manage alone, your loved one’s MS care team can help you explore assisted living or long-term care options.

Support groups and coping strategies

Mental health counseling and support groups can offer resources to help you manage the emotional and practical sides of caring for someone with SPMS.

Counseling provides a safe space to process your feelings and develop coping strategies. Support groups can connect you with others facing similar experiences, offering shared understanding, encouragement, and practical advice.

In the U.S., several national organizations provide caregiver-specific resources, support groups, and educational programs, including:

Caring for someone with SPMS may mean adapting physically and emotionally as their care changes. By staying connected with their MS care team, tapping into community resources, and focusing on self-care, you can continue to provide meaningful support.

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.