You've likely heard the following airplane analogy: if the oxygen masks drop, you must take care of yourself first before helping your loved one. But most caregivers feel guilty about taking time for themselves. They may be inclined to forgo social invitations, pass up the opportunity to see a movie, or even ignore their own health concerns; but setting aside time to attend to their personal needs is critical to prevent “caregiver fatigue.” 

​Encephalitis411 likes to emphasize the tremendous role of caregivers, honoring the radical impact of the illness on their own life in addition to their loved one.

​Dr. Stephen Chock, a Plano, Texas-based neuropsychologist, frequently speaks at our events. He cites the Family Caregiver Alliance organization as a great resource for caregivers. Most caregivers have jobs outside their new role, or children to also take care of, so the juggling act can be overwhelming. There are social services available for assistance to explore.

Given that encephalitis typically has a sudden onset, a family member, friend, or even neighbor is often suddenly thrown into the role of a caregiver. This can be a shock to the system if you’ve never assumed the role before. There’s much to learn about keeping up with doctor appointments, medications, therapies, documentation, insurance, and other things; often it can demand round-the-clock attention. That's why it's so important to lean on your support system and take friends and family up on offers to help. Doing so is critical to prevent burnout and allow yourself to rest. Identifying yourself as a caregiver can help you locate and navigate resources you might not otherwise find.

These are some of the tasks caregivers do daily and/or weekly:

• Arrange medical appointments (often among a variety of specialists and therapists), drive to the doctor, sit in during appointments (highly recommended as typically the encephalitis survivor’s memory is compromised), monitor medications
• Talk with doctors, nurses, care managers, and others to understand what needs to be done—get documentation in case it’s needed for disability or for the survivor’s employer
• Manage the household, such as cooking, cleaning, doing laundry
• Help the care receiver get dressed, take a shower, and take medicine (usually this is in the acute phase and into the first few months until they are adjusted to their “new normal”)
• Arrange for assistance for someone who cannot be left alone
• Handle finances and other legal matters

​Initial Phase for First-Time Caregivers

​As you’ve probably already discovered, it’s easy to become stunned by all the responsibilities as a new caregiver. Here are some tips that can help:

• Get an accurate diagnosis of your loved one’s health condition from a certified provider (this will come in handy with insurance, potential disability, etc.)
• Learn what specific skills you might need to care for someone with this diagnosis (encephalitis can cause a wide variety of debilitating symptoms, from the potential of a feeding tube to learning how to work on memory deficits)
• Talk about finances and healthcare wishes
• Learn about encephalitis and what you can expect – please note that infectious and autoimmune encephalitis are very different 
• Complete legal paperwork, e.g., Powers of Attorney, Advance Directives
• Don’t go it alone. Include family and friends to discuss the care plan, and them keep them updated on progress and/or setbacks
• Identify resources, both personal and in the community, who can provide support for you and the survivor (churches, community programs, public assistance, etc.)

​​Be Good to Yourself

When encephalitis is first diagnosed, it’s often impossible to know if this is going to be a short-term crisis or if this is a permanent, lifelong change. The more successful caregivers learn how to take care of yourself. Here are some helpful reminders: 

• No one is perfect and now that you’re cast into this role, you can’t expect anymore out of yourself than before. Things will go wrong. Mistakes will be made, but do not blame yourself. It’s called being human. 
• Accept that this is a depressing situation and that taking anti-depressants can help you manage the stress. Taking anti-depressants is not an admission of weakness. Successful caregivers admit that this is a great alternative to suffering from a decline in mood/spirit. There’s a lot of emotion involved and you have a right to feel those—guilt, helplessness, hopelessness, exhaustion, and even rage are natural; but taking something to help it spiral out of control is a good idea.  
• Talk to someone you trust about setting realistic expectations—for yourself and your loved one. This can help manage anxiety. 

• Understand what you can and can’t do to care for your loved one. This might mean that the survivor needs assistance standing or getting out of bed and a social worker might be necessary if you cannot perform this activity on your own. We like to emphasize that it’s so important to take care of yourself. 
• Learn that it’s okay to say “no.” That might be to things you cannot do due to sheer exhaustion or it might be that you just don’t feel up to it. Make choices that are healthy for you. 
• Accept help when it’s offered. Many of us are wired to say “no” because there might be guilt, shame, or another negative emotion tied to it. If someone offers, accept it and give yourself a deserving break. They wouldn’t offer if they didn’t care. 
• Be aware of what causes you the most stress so you can eliminate them, learn to cope with them, or understand them before the pressure builds. 
• Take care of yourself physically as well. This includes getting enough sleep, exercising, and preparing meals with good nutrition. 
• Do things you enjoy to maintain your identity—walking, gardening, reading a book, going to a movie, etc. On the occasions when someone offers help and frees up some of your time, try not to run an errand that still falls on the continuum of caregiving. Do something for yourself!
• Find a support group. Within the encephalitis community, there are many Facebook forums—some for caregivers only, so you can be assured that your words are reaching the right ears. Also, the Encephalitis411 forum on Inspire.com contains a wealth of information with years and years of history. 
• Make a list of things so that if someone were to offer help, you already have a prioritized list. You can even show them the list and let them pick something they’d enjoy or have the skills to do, such as cooking a meal, running an errand, etc.