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Caring for a loved one with multiple sclerosis (MS) can be challenging even under the best of circumstances. When the person with MS is your child—regardless of his or her age—the challenges may seem overwhelming. Knowing what to expect and learning how to cope are crucial to ensuring that you are fully equipped to serve in your role as caregiver.

Coping With the Diagnosis

Parents naturally want the best for their children and have high expectations and hopes about what their children will accomplish in life. It’s normal to grieve over what has been lost.

But grief is only one of myriad emotions caregivers feel. Anger, guilt, and fear are natural and normal emotions, and will likely vary over time as new MS symptoms appear and as your child faces new physical challenges. But if the emotions persist or if it becomes difficult to deal with them on your own, it might be worth getting professional help. A mental health professional may help you balance your dual roles of parent and caregiver and help you set expectations for the future. Most importantly, take the time to learn about MS and its treatments. Not only should this help you identify key areas in which you can best assist your child, it should also help you recognize when to seek advice or assistance from a family member, friend, or healthcare professional.

Preparing for the Future

Regardless of whether your child with MS is young or old, there will likely come a time when your care will no longer be sufficient to manage the demands of the disease. Take the time early on to investigate your options.As shown below, there might be assistive services that could help you with ongoing medical, legal, and financial issues, as well as help you ease into a more permanent solution if the responsibilities of caregiving become overwhelming.

Assistive Devices and Rehabilitation Equipment	ABLEDATA is a national database of assistive devices and rehabilitation equipment for people with disabilities. The free database provides a description of the product with price and company information. For more information, visit www.abledata.com.
SSDI and Long-Term Care Insurance	People with MS often have difficulty obtaining long-term care insurance. Yet for people with severe MS who cannot work at all, Social Security Disability Insurance (SSDI), a federal disability insurance, might be an option. For more information, visit www.nationalmssociety.org/SSDI.
Medicaid and Special (Supplemental) Needs Trusts	Medicaid is a state-run, federally subsidized insurance policy for people whose income falls below a standard minimum. If your income is too high, a special account, or trust, in which to hold the funds above the Medicaid allowance can be set up. These funds cannot be used for care, but may be used for personal needs and expenses otherwise not covered by Medicaid. For more information, visit www.nationalmssociety.org/financialplanning.