Support for Caregivers

If you have ever flown on an airplane, you know the airline staff tells you to place an oxygen mask on yourself first before helping others. This good advice may be applied to your life as a caregiver, too. It can be easy to neglect yourself as you care for someone else.

Why self-care is important

Caregiving is hard, demanding work. According to the Family Caregiver Alliance, roughly 6 out of 10 caregivers show signs of depression. Caregivers also take more prescription drugs than their peers.1

As a caregiver, you may need to manage different activities each day, such as physical or occupational therapy and doctor’s appointments. Caregivers may have unrealistic expectations and hope their hard work results in better health or happiness of their loved one, when this is not possible.2

It can be hard to ask for help with caregiving, especially if you feel like you should be able to handle it yourself. Most people feel like they are imposing on others or failing if they ask for help. However, you need to rest and recharge in order to take care of your loved one. Giving yourself breaks prevents burnout and preserves your health so you can keep on caregiving.

Ask for help

A home healthcare service may be an option to help you with daily tasks like bathing, dressing, physical and occupational therapy, or medication management. Family and friends may be able to watch over your loved one while you run errands or get some exercise.

If the stress of caregiving interferes with daily life or feels overwhelming, a counselor, therapist, or clergy member may help you manage your emotions and stressors. Some people resist counseling. It may help to think of a therapist as someone who helps you with mental and emotional problems the same way a doctor helps you with physical problems.

Remember, you do not have to do it all yourself. Many people may ask, “What can I do to help?” People like to be helpful, so let them. Keep a list in your head, online, or on paper with specific tasks that would be helpful. Suggestions include:1,2

  • Picking up groceries
  • Running to the pharmacy
  • Helping with chores
  • Cooking a meal
  • Driving you to an event or appointment
  • Giving you a chance to be alone
  • Spending time with your loved one

Learn to say no

If your loved one progressively needs more care, you may find yourself being asked to do too many things outside of caregiving. You may have to learn to say no in order to preserve your energy for what is most necessary. Someone else may have to host family gatherings or organize the parent-teacher group. You may have to simplify meals and adjust your expectations. It is ok to set limits.

Tips for self-care

Here are some other ways you can care for yourself while also caring for someone with neuromyelitis optica spectrum disorder (NMO):1,2

  • Make sure you are eating a healthy diet and drinking plenty of water
  • Join a caregiver’s support group, in-person, online, or both
  • Make time to see friends
  • Take breaks throughout the day
  • Exercise regularly
  • Get enough sleep
  • Lean on faith-based support
  • Ask for help when you need it

Resources for NMO caregivers

If you need help or support while taking care of your loved one, start with your loved one’s NMO team. They will likely be able to tell you about local resources geared toward caregivers and NMO support groups. Some support options for caregivers include:1-3

  • The Guthy-Jackson Charitable Foundation offers a list of support services of local and online chapters across the United States on its website.
  • The National Organization for Rare Disorders' Rare Caregiver Respite Program provides up to $500 annually to caregivers providing care to those living with rare diseases like NMO.
  • Local schools, government agencies, and churches may offer day programs and other help.
  • The ARCH National Respite Network offers a database of caregiver support by state.

Remember, caregiving is hard work. Asking for help or admitting you cannot do it alone is nothing to be ashamed of. Dealing with the ins and outs of this illness can be stressful. This is why it is especially helpful to recognize when you need a break or help.

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Written by: Jessica Johns Pool | Last reviewed: September 2021