Future Planning for Caregivers

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

People with neuromyelitis optica spectrum disorder (NMO) might be cared for by family or friends. Sometimes this extra support is only needed during a first episode or during attacks.

Providing care for someone with NMO changes over time, based on their symptoms and the level of help they need. This can become very challenging for the caregiver. This is especially true because NMO and the damage it causes is so different from person to person. How can you prepare yourself and your home for what is to come?1

Progression of the role as a caregiver

In the early stages of NMO, your loved one may only need occasional physical help and emotional support. This is a good time to work with the person on care planning, any legal and financial plans, and set them up with support services.

If you are going to eventually care for the person at home, you may need to hire a contractor to remodel doorways and rooms to accommodate walkers and wheelchairs. You may need to improve lighting to help with low vision. You may also choose to move to a one-story home to eliminate stairs. All of this requires time and planning.1

As your person moves in and out of NMO attacks and more nerve cells are damaged, your person will require more and more support. An occupational therapist may be able to help you plan for what is to come.

Caregiving in the middle and late stages of NMO will shift over time. Eventually, there may need to be several caregivers to help with various tasks. Daily routines will need to change and be replaced with new routines and habits. Changes in vision, abilities to do everyday tasks like feeding, toileting, and dressing may all require more support than before.

As NMO progresses, you may need additional help. A trained home healthcare professional can help with medical care, safely moving the person, changing soiled undergarments or bed pads, and feeding.

Sometimes, home caregiving cannot provide the level of help your person needs, especially if their breathing is affected. When this time comes, moving to assisted living may be required to keep your person as healthy as possible.

Each person’s journey with NMO can look very different. Some people progress very quickly through the disease stages, while others have long periods of time between attacks. Some stay in certain stages longer than others.

Talk to the person’s doctor about any symptoms that arise and how to best deal with those. Become educated on ways to help your person manage their symptoms, especially as the disease progresses.

Long-distance caregiving

In the early stage of NMO, family members may be able to provide long-distance support, since the person may still be able to live independently. This may change as the disease progresses and the person needs more help more often. While it may seem daunting, there are things caregivers can do for the success of long-distance support, such as:1

Learn everything you can about NMO

Learn about the medicines and your loved one’s healthcare team. This will help you plan and better understand your person’s needs.

Plan regular visits

Talk ahead of time about errands and chores you can do while there. Consider going with your person to a doctor’s visit and meeting their health team. Advanced planning will help organize your visits and ensure everything that needs to get done gets done.

Stay in touch with your person’s care team

Your person will have to give their team permission to share their health information with you.

There is so much to do in caregiving that it is easy to forget to just be with the person. Make time to simply hang out or do something fun together.

It may be worth hiring a local caregiver to help with caregiving basics that you cannot deliver long-distance. Local caregivers can also be on alert to let long-distance caregivers know when long-distance care is no longer safe and your person needs more intensive support.

Caring for the caregiver

Caregivers should take care of themselves to help reduce the risk of burnout, depression, anger, and staying healthy. Caregivers cannot care for others if they themselves are not well. You cannot pour from an empty cup, as the saying goes. Signs that caregivers may be under stress include:1

  • Anger at the person with NMO
  • Social withdrawal
  • Depression, anxiety, or irritability
  • Exhaustion that interferes with everyday, necessary activities, or tasks
  • Sleeplessness
  • Health problems that crop up

If any of these signs regularly happen, the caregiver might be under enormous stress. Managing stress in a healthy way is needed. This allows caregivers and the person with NMO to both feel supported. Ways to manage stress include:1

  • Finding community resources to assist caregiving, like visiting nurses, in-home nurses, respite care, or adult day programs
  • Support groups for caregivers, either in-person or online
  • Counseling
  • Relaxation techniques like meditation, breathing exercises, or yoga
  • Exercise
  • Regular doctor visits to take care of general health and wellness
  • Taking breaks when necessary
  • Eating a healthy diet
  • Asking for help as needed
  • Maintaining social connections, friendships, and hobbies
  • Talking with clergy

Caregiving for someone with NMO is a wonderful thing to do, but it is not easy. Caregivers need to take time for themselves so they are able to better take care of others. If caregiving starts to become detrimental to a caregiver’s health or well-being, then talk to someone immediately. Everyone needs help sometimes, and it is nothing to be ashamed of.

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