Multiple Sclerosis Caregivers: You’re Not Alone (article)
In this article we will talk about useful tools to help you be prepared to care for an adult living with Multiple Sclerosis, or MS, and strategies to help you cope. It is based on the video “Multiple Sclerosis Caregivers: You’re Not Alone.” You may not always feel prepared for this role as a partner and caregiver for an individual living with MS but know that there are many skilled professionals and MS caregivers to help you.
This article has two sections. In the first, Everyday Living, we’ll highlight what every caregiver of a person diagnosed with MS may experience. The second section, Advanced Care, speaks to the caregiver when the person they care for needs substantial help with activities of daily living, such as bathing, eating, medication management and more. Those diagnosed with a progressive form of MS may experience the need for Advanced Care sooner than those with other types of MS.
Let’s start with a brief overview of MS. MS can occur in both adults and children. MS is a lifelong, unpredictable, autoimmune disease that causes lesions in the brain and spinal cord. MS occurs when the immune system attacks nerve fibers and myelin, the protective fatty covering of our nerves, causing inflammation. The resulting scar tissue blocks electrical signals to the brain disrupting normal body movement and function.
MS can cause various symptoms including:
- vision loss
- trouble with coordination and movement.
These symptoms will not only differ from person-to-person, but they can also range in severity and duration. Some may live symptom-free most of their lives, while others must navigate severe symptoms that never go away.
Currently MS remains a diagnosis of exclusion, where other potential causes of symptoms are ruled out before an MS diagnosis is made.
Relapsing-Remitting MS (RRMS): It is estimated that of those diagnosed with MS, over 80% have the Relapsing-Remitting type. In this form, MS “attacks,” which are a flare-up of disease symptoms, may occur every so often amid periods of relief. It can be weeks or even years between episodes.
Secondary Progressive MS: Overtime, the RRMS type can turn into a secondary progressive form of MS, where the disease advances at a slow, steady, unrelenting pace. This can occur more often for those who are not benefiting from treatment.
Primary Progressive MS: About 10% of individuals are diagnosed with a primary progressive form of MS where the disease worsens over time without periods of relief.
Please visit the National Multiple Sclerosis Society website for more details about the types of MS.
While there is no cure for MS yet, it’s not considered a fatal disease, and people diagnosed with MS may have the same life expectancy as the general public. Longevity can depend on the type of MS diagnosed and the type of treatment that is being received.
Research is underway to find innovative approaches to treat MS. Findings suggest medications can have the most impact if taken as soon as the disease is diagnosed.
Everyday Living with MS
As a caregiver, it is important to learn about MS. Helping an individual living with MS can be confusing.
You may have questions about how to adjust to and cope with the diagnosis, such as:
- What is the type of MS diagnosed?
- What is the typical course for this type of MS?
- In what ways might MS affect the diagnosed individual, you the caregiver, and your family over time?
It’s important that you seek out information and professionals to help to answer any questions that you may have. For example:
- People living with MS will benefit from a healthcare team comprised of a Primary Care Doctor, a Neurologist, and a Nurse.
- At times, you might find it beneficial to also get help from a Social Worker, Physical Therapist, Occupational Therapist or Registered Dietitian.
To locate a doctor, visit the Find Doctors & Resources tool on the National Multiple Sclerosis Society website.
The Veterans Health Administration also has an established network of Multiple Sclerosis Centers of Excellence to optimize the care of veterans across the nation.
Although some people with MS will decide to solely follow standard medical management of the disease, a growing body of research is showing that also pursuing lifestyle changes can impact the course of the disease. Medication, in addition to modifying one’s diet and health habits, can have a positive impact on managing MS symptoms and any disease progression.
As a caregiver, you can join the person with MS by cooking and eating healthy meals, walking outdoors together, creating an environment to get adequate sleep, and seeking counseling for mental health support.
Fatigue, a common symptom of MS, can make doing things together challenging. For example, while you or I might feel re-energized after a good night’s sleep, a person with MS may wake-up still feeling exhausted. Don’t let this be a barrier. Instead seek out ways to build in rest periods throughout the day so that you can both enjoy your time together.
How are you feeling about your loved one’s diagnosis? Sadness, anger, fear, disbelief? Perhaps you feel relief at having an explanation for the unusual changes you’ve been observing? All of these feelings are normal.
When the person with MS is struggling physically or emotionally, you may find yourself torn between wanting to assist them to make things easier or waiting for the person to navigate the problem on their own or ask for your help.
Being available to talk with the person you care for about fears related to the disease, and providing assurance that you are in this together, can go a long way towards making everyone feel more comfortable and confident moving forward.
As changes occur, it is common to feel grief about witnessing deterioration in physical and mental functions. This can be felt by both you and the person you care for throughout the course of MS. Although there is no one right way to deal with the grief you may be feeling, there are healthy ways to deal with the impact it has on your relationship and on your life plans.
Many caregivers find journaling to be a useful way to document their feelings. Writing down your thoughts can help raise questions, fears, and new ways of doing things. Physical exercise, prayer, meditation, relaxation exercises, support groups, and talking one-on-one with a friend or counselor can help you stay well. Finding ways to reduce stress is a priority for MS caregivers. Take time to do things you find fun and fulfilling.
MS affects everyone in the family in different ways. This includes you as the caregiver, the person with MS, relatives, and friends. Each will require their own kind of support.
As MS advances, or a major relapse is experienced, it is common for caregivers to feel especially isolated and overwhelmed. Too often, just when you need more support, friends and even family may stay away due to their inability to witness your pain and that of the person you care for. They may not understand the disease or how they can help.
If you’re feeling anxious or angry, know that these emotions are hard to deal with on your own. Consider talking with your doctor or a counselor. Caregiver support groups can offer a safe environment to share your experiences and learn from others in similar situations. Support groups are usually free and can be online and or in-person. The National MS Society website contains links to support groups, online MS Communities, and other support professionals and services for people with MS and their caregivers.
Don’t wait to ask for help! There are effective ways to help you cope with your feelings.
Legal and Financial Planning
A common question caregivers ask is “What will happen to the person I care for if something happens to me?” One action that you can take is to make sure that your own legal and financial documents are updated. Encourage the person you care for to create or update their legal and financial documents too. As appropriate, you may speak with an attorney who specializes in disability law and estate planning.
Key documents to complete include:
- Durable power of attorney for finances
- Advance Health Care Directive
- Will and/or trust
- POLST form
- DNR, for end-of-life medical interventions.
When discussing advanced healthcare preferences, it is also a good time to talk with the person about signing a release of information to allow medical staff to speak with you and others who may be actively involved in caregiving.
If you or the person with MS is employed, it is important to contact the employer’s Human Resources department to learn about eligible benefits, such as long-term disability and family leave options, both paid and unpaid.
Depending on the type of MS and the predicted disability, now may be the right time to investigate how to secure disability benefits. Securing financial help from the government can be a challenging and confusing process. We recommend seeking out experts to help you early on. Consult with an attorney or other professional who specializes in Social Security Disability Insurance, or SSDI, and Supplemental Security Income, or SSI. They can also help you navigate Medicare and Medicaid.
If the person you care for is a veteran, applying for benefits and enrolling in the VA health care system should be done as soon as possible. Your local Veterans Service Organization can offer guidance.
A person is eligible for Medicare when they turn 65 or if they become disabled before 65 and have been receiving SSDI for 24 months. It’s important to remember that Medicare does not pay for long-term care, such as care provided in an assisted living or skilled nursing facility or for private care at home
Long-term care insurance may be available even after receiving an MS diagnosis. Start by checking with Department of Insurance in your state.
Take some time for yourself. Respite can come from having a family member, friend, or in-home care professional allow you time to rest and replenish your energy. You can also create self-care moments throughout the day by taking small, intentional breaks for yourself, even if it’s just 15 minutes to drink a cup of tea, exercise, or engage in another enjoyable activity of your choice. Call a friend to meet for coffee or join you for a nature hike.
If you need more time-off and the person you care for needs more assistance than what a friend or aide can provide, there are out-of-home respite options, like adult day programs or short-term stays in a care residence.
Too often caregivers don’t feel they need a break until they experience a crisis or problem with their own health. We encourage you to seek respite early and as often as you need it.
Some signs that you need a break include:
- A persistent ache or rash that doesn’t go away.
- Your blood pressure is rising.
- A health condition you have worsens.
- You have trouble sleeping.
- You’re feeling anxious, irritable and less patient.
- You’re turning to alcohol or drugs in an effort to relieve your stress.
Remember, if the individual with MS needs an increasing amount of care, it’s easy to put-off your own healthcare needs. Be sure to also take care of your physical and emotional well-being! Keep your doctor or therapist appointments, visit with friends, and do activities you enjoy. Self-care benefits both you and the person you care for.
It may cause you anxiety to take time for yourself because you worry something bad will happen, or you feel guilty doing it. However, it’s essential to confront these concerns and make time to step outside of the caregiver role.
Because MS can cause motor changes, it’s important to identify potential hazards that may exist in the home. A person diagnosed with a progressive form of MS may lose a significant degree of balance and mobility and will need help with basic personal care, such as bathing, using the bathroom and dressing.
With Relapsing-Remitting MS a person may need help during a major relapse or attack, but then can recover to near or full-normalcy.
A Physical Therapist can do an assessment and suggest modifications, such as installing bathroom grab-bars for getting in and out of the shower.
An Occupational Therapist can help identify ways to manage daily activities such as cooking and eating. They also have an extensive knowledge about assistive devices.
For safety outside of the home, consider recommending that the individual with MS carry identification – a card or ID bracelet – identifying that they have MS and who to contact in an emergency.
When more personal care and homecare is needed, often people suggest hiring in-home help. But what does that mean to have someone come to your home “to help”? Find out more about how this option might work for you in the Family Caregiver Alliance fact sheet.
If the individual with MS begins to experience problems with cognition (or thinking), reasoning, or remembering, a neurologist can perform a brief screening to identify what might be causing the problem. The doctor may recommend a neuropsychologist to perform a more complete cognitive evaluation and assist with rehabilitation and helpful coping strategies. In some cases, depression, side effects from medications and even interactions between medications, can mimic cognitive problems and can be treated.
A registered dietitian can provide guidance on nutrition to help prevent or manage issues often associated with MS, such as fatigue and weight gain.
Palliative care is a type of supportive healthcare to improve the quality of life for people with chronic conditions. Palliative care teams can help a person to manage symptoms and reduce suffering. A person does not have to be on hospice to qualify.
A person living with a progressive form of MS will eventually need constant help with personal care and daily living activities. Talk with the medical team about medications, assistive devices, and other interventions to help enhance functioning and mobility.
A time may come when the person with MS requires a higher level of care than can be provided at home. Moving the person to a full-time skilled care facility can be a tough decision, but a necessary one. You may feel like you’ve failed or that you’re breaking a promise – even when you know placement will provide more safety and needed care than what you can provide.
It is helpful to get a list of local residences that you can visit. You can check Medicare.gov for ratings of skilled nursing facilities.
Even when the person moves to a care residence, your role as a caregiver does not end. Your ongoing presence and advocacy will help ensure that proper care is provided.
Hospice and End of Life Care
Hospice services are designed to support individuals towards the end of life. Care can be provided wherever the person resides – at home or in a care residence. Hospice includes visiting nurses, pain management, and personal care. Hospice may also provide spiritual, grief, and bereavement support as well as respite for family caregivers.
Hospice is a Medicare benefit and individuals are eligible when a doctor has determined a patient has 6 months or less to live. You can ask the doctor for a referral to begin services, or hospice can assist you in getting a referral from the doctor if the individual is eligible.
We hope that the time spent reading this article has helped you feel more informed and supported in your caregiving journey. And finally, we want to remind you of these key take-aways for caregiving:
- Get support early! – This is a caregiving role that requires flexibility, patience, and being attuned to disease symptoms that can easily be misdiagnosed.
- Connect with knowledgeable health and medical providers. Learn about new treatment options, lifestyle interventions, and research.
- Learn about the type of MS diagnosed.
- Make sure that your medical, legal and estate plan preferences are up to date
- Find local resources and services to help.
- And please make time to take care of yourself!
Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
FCA CareNav: http://fca.cacrc.org/login
Services by State: www.caregiver.org/connecting-caregivers/services-by-state/
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s, and other debilitating brain disorders that strike adults.
Other Organizations and Links
National Multiple Sclerosis Society website: Visit for a more details about each of the types of MS.
Use Find Doctors & Resources tool on the National Multiple Sclerosis Society website to locate a doctor.
The Veterans Health Administration also has an established network of Multiple Sclerosis Centers of Excellence to optimize the care of veterans across the nation.
This article was underwritten with funding from Adira Foundation with additional support from other generous donors and written by Family Caregiver Alliance.