As your multiple sclerosis (MS) progresses, you may develop greater disability and require more help with daily activities. For example, maybe your partner has begun to help you get dressed in the morning, or your child picks up your groceries.

Over time, relying on others to stay safe from injury can become a burden on personal relationships, “preventing a spouse from being a spouse, and a patient from being a human being,” Dr. Aaron Boster commented during a live Q&A on March 18, 2021, hosted by MyMSTeam co-founder Mary Ray. Dr. Boster answered members’ questions about navigating long-term care for those living with MS.

When deciding whether to hire help, Dr. Boster explained, it’s important to balance your priorities and research your options. Ultimately, a strong support system can maximize your health and help your caregivers avoid burnout.

Setting Goals With Your Support System

For some people, having as much independence as possible during daily tasks is a priority. You might want to take some risks so you don’t have to ask for help. In the long term, however, prioritizing safety now can lead to a better quality of life in the future. These measures could include using a walker to prevent falls, asking for help from your existing support system, and searching for outside caregivers to supplement the care you receive.

It might be difficult to acknowledge that you need assistance and will need help as your symptoms change. Embracing your supportive community — and building upon the foundation you already have — will be essential as you confront the changes MS has made in your life.

Broadening Your Caregiver Community

Symptoms of MS can vary from day to day and depend on your diagnosis. Whether you have relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), or primary progressive MS (PPMS), you may experience symptoms such as fatigue, difficulty walking, numbness or tingling, spasticity, weakness, vision problems, dizziness, vertigo, bladder problems, sexual problems, bowel problems, pain, itching, cognitive changes, and emotional changes including depression.

Putting together a caregiving team is a way of taking charge of your wellness.

Watch MS specialist Dr. Aaron Boster discuss how to tell whether it's time to bring in a caregiver.

Hiring a Caregiver

Before hiring a caregiver, it’s important to identify what help you need and how frequently you need it. You may need help with activities of daily living like bathing, dressing, or toileting as well as household chores like meal preparation, cleaning, and laundry. The National Multiple Sclerosis Society offers a needs assessment worksheet to help you think through what you might need. Once you’ve identified your needs, you can take the step of hiring someone to help you in your home.

You can hire a caregiver directly or work with an agency that can match you with caregivers. The National Multiple Sclerosis Society provides guidance for pursuing each option. Hiring a caregiver independently can offer you more control and may be more affordable than working with an agency. On the other hand, hiring a caregiver directly can be more time-consuming than working with an agency.

Whether you hire directly or through an agency, caregivers should be fully vetted, with background and reference checks. You should interview them to ensure that you have confidence in their abilities and will enjoy their company. As one MyMSTeam member says, “I used to look at and think that those with caregivers were sorry souls. Now I think how blessed I am to have good ones.”

Finding a care team you trust can make all the difference in your care plan and your MS journey. Some important elements to consider when hiring home health assistance include:

• Consistency to ensure you can build a rapport with one or two caregivers
• Compatible personalities
• Clear expectations so you and your caregiver are on the same page

Developing a good relationship with all members of your health care team can make the treatment plan and management of your disease process go more smoothly.

Respite Care

Respite care can be an important component of your caregiving plan if family members are your primary caregivers. Respite care is short-term care from qualified home health aides who care for you while your primary caregivers take a break. Respite care can be arranged to take over for the primary caregiver for hours, days, or even weeks. It is important to note that respite services charge by the hour. To locate respite care near you, check out the National Respite Locator.

Paying for Home Health Services

Your financial status and health insurance policy will also be a factor when choosing if home care is right for your current situation. Many public and private insurance companies contribute to the cost of home care assistance if a physician documents such services as medically necessary.

Public Insurance

Home care may be covered under Medicare, Medicaid, or through the Department of Veterans Affairs.

Medicare

Medicare is a public health insurance program available for people over 65. Beneficiaries may qualify for home care coverage under Medicare Part A and/or Medicare Part B. People need to first qualify for services, and eligibility criteria usually include:

• A doctor stating that home care services are necessary
• A necessity for one or more services, including skilled nursing, physical therapy, occupational therapy, or speech and language therapy
• Being homebound, meaning that leaving home takes a great deal of effort

You can learn more about eligibility and coverage through the Centers for Medicare and Medicaid Services. You can also call a hotline for information at (800) 633-4227 (or 800-MEDICARE).

Each state has a State Health Insurance Assistance Program (SHIP) that is designed to provide you with free health insurance information and help on services covered by Medicare and Medicaid, as well as other insurance programs.

Medicaid

Medicaid is a public insurance program for people below a certain income threshold, children, pregnant women, and people with certain disabilities. Federal Medicaid rules require that state Medicaid programs cover certain home health services, including part-time nursing care. The exact services available will depend on your state. To qualify for Medicaid, you must meet state-specific requirements around income and health needs. Note that not all home health services providers will accept Medicaid. The American Council on Aging offers a helpful guide for understanding Medicaid’s home health services.

Veterans’ Benefits

If the person needing home care services is a veteran, the Department of Veterans Affairs can be a good resource for financial assistance depending on qualifying criteria.

Private Insurance

If you have a private health insurance policy, it may cover a portion of short-term home health care, and some policies may cover long-term home health. Make sure to check the specifics of your policy to get a good idea of how much the policy will cover before deciding on services and choosing a caretaker.

Out-of-Pocket Costs

There is a chance that insurance will not cover all the expenses associated with home care services and part of the bill will need to be paid out of pocket. You or your family member can hire and pay a home care team out of pocket if need be, but you may need to consider payroll details such as taxes, Social Security, and holiday pay. The Internal Revenue Service (IRS) or a certified public accountant can help guide you. Occasionally, especially in emergencies and if notice is short, you may need to bring in your own help or pay privately.

Talk With Others Who Understand

MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 168,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.

Are you living with multiple sclerosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.