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Post Encephalitis – for caregivers

Caregivers, family members, loved ones… .this section is created for you.  It contains information which may be desperately sought by folks recently touched by encephalitis.

There are certainly questions family may need to ask the doctor, including:

  • Has a Neurologist seen her ?
  • Do we know which type of encephalitis has been diagnosed ?
  • Has she had seizures, how many?
  • What type of testing has been done?  What results were found ?
  • What medication has she been subscribed ?
  • How is her memory (short term / long term)?
  • How does she function, speech, walking, bladder control etc.?

The following is a collection of thoughts and ideas shared since Encephalitis Global was created in September 2000. Please remember that no one at this site is a medical representative in any way. We are a support group, offering suggestions and strength to each other. We have used the female gender for sample suggestions… either would do, of course.

What is encephalitis?

Encephalitis is inflammation of the brain. You may know of the word meningitis… which is:  inflammation of the linings of the brain. Encephalitis touches the more inner areas of the brain. Weeks, months, after encephalitis touches, its survivors and loved ones must learn the most difficult lesson.  Patience. Patience to play a waiting game, while the brain make all efforts to recover, repair and resume normal functioning.

What does it feel like to them?

“My name is Wendy. In April 1999, on a Thursday morning, I had a wee bit of a headache on arrival at work. I told the boss I was going home…. and that’s the last thing I remember. I do not remember driving home. I do not remember being cranky at home through the weekend. I do not remember my Goodspouse taking me to Emergency on the following Monday…. he being told that I just had the flu…. and he standing his ground, until a neurologist walked by, and realized what was going on. Herpes Simplex Encephalitis. To a middle age woman, who’s never even had a cold sore in her life! Even now, I don’t recall the following four weeks. “

It’s my feeling that when the brain is in a crisis mode; it shuts down any of the non-essential services, to focus all attention and strength in the area in crisis. In that sense, my memory just was not functioning, in any way. From the outside looking in, I was walking and talking….. it is just that I don’t remember it.

What can the family do?

Survival, basic survival comes first. Second? Learn more. Then? One day at a time. Yes, it sounds trite, sounds like a saying from a 70’s TV show…. but it is true. Some of the folks here are survivors, some are family and friends of encephalitis, and many are parents of young survivors. Everyone here has a piece of advice for you, a suggestion for you.   Information is power, and you need to give yourself all the strength you can to assist your loved one.

What do I say when I visit her?

Now? Just hang in, and hang on. The visits, the gentle visits. Yes! And, perhaps, to reassure. Not to expect magic, or to test or push your loved one to show his limitations. Speak…. With memories, and thoughts. Do not request/demand answers or replies. That will really fluster a survivor who is trying so hard!!

My adult brother and sister used to come and visit me, and discuss our childhood. For hours, I am told. I have absolutely NO memory of that time. But. But…. it’s my opinion that support from my family (and a large dose of blessing from above!) added just as much strength to my survival, as the excellent neuro care I received.

She looks so sad, acts so weird!

I have absolutely no memory of that time. I’ve been told that I was known to hide my gown under my pillow…. Then when no-one was looking, I would rip out my intravenous needles, and dash for the door. When staff stopped me and asked, “Why?”… I would tell them, “I’m very, very late for work, and I just have to get there!”

Once I was home (after four weeks in hospital), I often tried to step forward and do the right things. Apparently, one time I pulled on the heavy oven mitts…. then plunged my hands into the sink to wash the dishes.

In a coma state, a survivor may cry or/and seem agitated, and then don’t remember any of this when they regain consciousness. A survivor says, “ I am told that I was ‘weepy’ during the coma, but have absolutely no recollection of it.”

Wendy says, “I remember while still in hospital (around the 25th day), my Goodspouse was given permission to take me home for a brief afternoon visit. I remember feeling… nothing. I didn’t want to go. And I didn’t want NOT to go. A feeling of that type was beyond my ability at that time. I did what I was told. I knew that this was my family, my home. But… no emotion. And I was very comfortable to be taken back to my hospital bed.

It is my personal opinion that my brain was in such a state of catastrophe, my memory capability just shut down. As if, that was a part of my process which was not vital at the time, and could be put on hold. (Or, perhaps God thought that there was nothing happening in those four weeks, which would be a very nice memory for me…) After the four week hospital stay, I would go back to hospital two or three times a week, as an outpatient.

When will she be back to normal?

….”seeking the outcome? Ah, just be delighted, today, that your loved one is still here. The outcome will not be finalized for quite a while yet, my friend. While some zone, some area of his brain has been permanently destroyed; other areas of the brain will make every effort to ‘fill the blanks’. The first six months after the illness will be the most remarkable, with two steps forward and one step back in progress. But, for long after that, small steps will be made, improvements here and there… Hang in, my friend…! “

How long until she ‘gets well?’ As you can imagine, every case is different… from a touch of encephalitis which folks don’t even get diagnosed, to a very serious illness.

And, even at the date 18 months after my illness, I was told, “Wendy, take it easy. Slow down. Be kind to yourself. Be mellow. You are still healing.” I suggested that I thought I had reached a sort of maximum, full measure of healing. Professional advisor said, “No. We will do another test, an EEG, at your two year mark. It is our opinion that healing is still happening.”

The Catch 22? Well, it seems, it is not the best thing to push and strive to do more, accomplish more, and try to return to the ‘old Wendy’  Pushing and stressing  does more harm than good. Life has enough stress in a Survivors day-to-day existence. We are doing ourselves no favours by pushing ourselves, and raising the stress level.