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Multiple Sclerosis: Exploring Long-Term Care Options

Over the years, many, many people with multiple sclerosis (MS) have asked, “Am I going to end up in a nursing home?” Like everyone else, you probably find the idea of long-term care to be really scary.

The short answer is that the vast majority of people don’t end up in nursing homes. However, a person with MS may need assistance — sometimes more than her or his family members can handle alone. And, remember, if your situation stabilizes and you find that your care needs don’t increase, you haven’t lost anything except the time it took you to have these discussions. Following are some options to consider when looking into long-term care.

Getting help in your home

When looking for help in your home, the two primary options are hiring someone from a home care agency or finding someone on your own. Although each option has advantages and disadvantages as well as different cost implications, a home helper generally offers the following services:

  • Companionship and supervision

  • Assistance with basic housekeeping tasks, including light cleaning, cooking, and errands

  • Personal care, including assistance with dressing, bathing, going to the bathroom, and grooming

  • Nursing care, including help with medications and certain kinds of medical procedures

  • Rehabilitation services, including physical therapy, occupational therapy, speech/language therapy, and social work services

For some great tips on how to hire help at home, check out Hiring Help at Home: The Basic Facts as well as the information for family caregivers provided by the National Association for Home Care & Hospice.

Looking into adult day care

Adult day programs, which are sponsored by various community agencies, provide a range of social and wellness programs, as well as some personal care. The services available in adult day programs generally include:

  • Meals

  • Social activities

  • Rehabilitation therapies

  • Counseling

  • Personal care

  • Nursing assistance

To check out the National MS Society’s Guidelines on adult day care services on their website or call (800) FIGHT-MS.

Identifying assisted-living options

Many communities have assisted-living residences where a person who needs help with daily activities can receive individualized support and healthcare services. The goal of these facilities is to provide people with the assistance they need while at the same time ensuring their safety and as much independence as possible. Assisted-living residences typically provide the following services:

  • A call system for emergencies

  • Meals in a common area, if needed or wanted

  • Housekeeping

  • Transportation to doctor appointments and social events

  • Medication management

  • Health promotion programs

  • Social programs

Assisted-living residences may offer single rooms, studio apartments, or larger apartments, and they may stand alone or be part of a larger healthcare facility that offers various types of living and care options. You can get the National MS Society’s guidelines on assisted living by calling 800-FIGHT-MS or on the website.

Considering nursing home care

Nursing home care is an option when you feel that you’ve exhausted all other possibilities. Even though no one wants to think about moving into a nursing facility, you may find it comforting to know that they exist if safe care at home is simply no longer possible.

As difficult as it may be to believe, a good nursing home can sometimes enhance the quality of life for someone with severe disabilities. Some of the benefits of nursing home care include

  • Twenty-four hour care by qualified staff members

  • Opportunities to participate in social and recreational activities

  • A sense of safety and security that’s no longer possible at home

  • Assistance for a family member whose health and well-being are being severely affected by caregiving activities

The National MS Society’s guidelines for nursing home care are available online or by calling 800-FIGHT-MS.

Long-term care resources

Not too many years ago, people facing long-term care decisions had no resources to help them. Rest assured that the National MS Society (800-FIGHT-MS or 800-344-4867) is aware of community resources and is happy to help you and your family members with any decisions you have to make. You can also get valuable information from the following resources:

Agencies

Books

  • In Multiple Sclerosis: The Questions You Have; The Answers You Need, third edition, edited by Rosalind Kalb (Demos Medical Publishing), you can find a section on long-term care by D. Frankel on pp. 407–425.

  • In Multiple Sclerosis: A Guide for Families, third edition, edited by Rosalind Kalb (Demos Medical Publishing), you can find a section on planning wisely for possible care needs on pp.169–180.

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