Challenges for Caregivers

Reviewed by: HU Medical Review Board | Last reviewed: September 2021

Taking care of someone with neuromyelitis optica spectrum disorder (NMOSD) can be both rewarding and challenging. There may be many things you need to do to keep your loved one healthy, and seeing a loved one sick or in the hospital is difficult.

The disease can also interrupt your daily life and take a large emotional toll. This is especially true because NMOSD attacks usually happen quickly. The sudden vision loss and paralysis, which may become permanent, is shocking and disrupts everyone’s lives without warning.

Given the realities of NMOSD, you will need to take care of your own health while providing care for your loved one.

What is the role of caregiver at home?

The first thing to do as a caregiver for a loved one with NMOSD is to educate yourself on the disease. It is good to know what symptoms and complications are possible. Then, you can build plans around how to handle and treat symptoms at home and know when to go to the hospital. It is also important to make sure they regularly see the doctor and get the tests and procedures they need.1-4

You will also need to learn to expect the unexpected. This is where educating yourself and planning can help. Be sure you and your loved one keep important medical information updated, such as:2

  • Contact information for all your doctors
  • Emergency contact information for friends and family
  • A list of all current drugs and supplements, with doses for each
  • Health insurance information
  • Medical history and records

NMOSD first attacks and relapses occur without warning and vary greatly. Recovery may be quick or slow. Vision and mobility may return fully or partially or not at all. Every person and every episode can be quite different.3

You, the caregiver, may also need to help with practical aspects of daily life, including:1-3

  • Adapting the home for a wheelchair and other mobility devices
  • Improving lighting to help with low vision
  • Investing in tools and aids for those with vision issues
  • Keeping the house clean to reduce the risk of infections
  • Encouraging healthy sleep habits
  • Planning meals that support bladder and bowel health
  • Helping them apply for and manage insurance and disability benefits

Trial and error is a necessary part of helping someone living with NMO. Tools and routines that worked at one time may not later. Be open to trying new things, and encourage your loved one to continue to seek what works for them.

Helping with pain

Pain is a common complication for people with NMOSD and can be hard to manage. Talk to your loved one’s doctor about your role in their pain management plan. When pain starts, you may need to:3-5

  • Give them pain medicines
  • Make sure they drink water or other fluids
  • Encourage them to move and stretch to relieve sore muscles
  • Help them with heating pads, warm baths, or massage
  • Keep them from overheating or getting chilled
  • Decide when to go to the ER

You can also help your loved one stay physically and mentally healthy. Make sure they eat a balanced diet and get as much regular, mild exercise as possible. Help them cope with the disease by encouraging them to join support groups and making sure they have people to talk to.

What can I do to help my loved one in the hospital?

A hospital stay can be difficult for everyone. Hospital stays interrupt routines, and you and your loved one may miss social events. They may be bored or scared about what is happening to them. It is important to openly talk about these feelings.

Anxiety and stress can create a large emotional burden and can worsen the physical complications of NMOSD. There are some ways you can help reduce hospital stress, including:3,6,7

  • Prepare your loved one ahead of time if the hospital stay is planned
  • Talk to them about any fears and concerns they have
  • Arrange regular visits from family and friends, both in-person visits and phone and video calls
  • Bring their favorite blanket and pillow from home
  • Bring in electronic devices and chargers, books, games, and puzzles
  • Bring them a favorite meal or snack from home

Focusing on you, the caregiver

Caring for someone with NMOSD is often a special experience that brings some loved ones closer together and makes other relationships more difficult. Caregivers also face large financial and emotional burdens. NMOSD affects every aspect of family life. Careers, personal lives, leisure, and social activities all change when someone is diagnosed with NMOSD. Some ways to maintain your own mental health while providing quality care for your loved one include:3

  • Learn as much as possible about the disease
  • Get help with housework and laundry
  • Simplify meals and shopping
  • Join a support group for caregivers
  • Help your loved one control their own care
  • Build regular breaks into your routine
  • Take time to maintain your own relationships, career goals, and hobbies
  • Find someone to talk to, like a therapist, friend, or clergy

NMOSD is a challenging condition for your loved one and you. However, you are not alone. The Guthy-Jackson Foundation Charitable Foundation sponsors a list of local support groups for caregivers of people with NMOSD.

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