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| Eunice |
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My name is Kim. My Mother, Eunice Shafer, 72 years old, was diagnosed with HSE in December 2006. When I spoke to her on the phone mid December one night she sounded ill. I asked if she was ok and she remarked that she had had a touch of the flu, not really the flu but she just didn't feel right. I asked to speak to my Dad after that and he mentioned that she had gotten lost with him as she was driving twice that day.
He has been sick with Congestive Heart Failure, over the past decade. My Mother has completely taken care of him and done most of the driving, etc. I thought
she was having mini-strokes or something so suggested that he bring her to the ER. They diagnosed her with pneumonia, which she did have
from aspirating food from losing her swallow reflex (from the E.). They kept her in the hospital, the next day she failed to improve.
Her condition only became worse. Her doctor tried to obtain a L.P. four times without success. Instead of calling someone else to do the
procedure, he dropped the ball and said he doubted it was a meningitis or encephalitis anyway. Four days later, when my sister from CA
and myself from MA, went to see her, as she was now "unresponsive", she became extremely agitated, didn't recognize us, and eventually
had a grand mal seizure.
The hospital staff was clueless as to what was happening until my sister and I (both nurses) demanded to see a neurologist and have her moved immediately to the ICU. We had to threaten to sue the hospital if they didn't' move her! It was absolutely the most frustrating moment of my life! He was able to get the LP within minutes, sent her for a CT, started her on Acyclovir and moved her to the ICU. By that time, her temp was 106*, they put a cooling blanket on her for days; she was unresponsive for about a week and then began to wake up. She couldn't talk and only moved one side of her body so the radiologists told us that she had multiple strokes, besides the E.
When the same neurologist came back to see her in a few days, (others in his group had been in), he was outraged that the radiologists has dx'd her with strokes. He showed us the MRI and said it was absolutely classic HSE. She ended up with a trach and GT, as her swallow reflex didn't return. Fast forward many months: My Dad tried to take care of her at home but she was so confused and it only worsened his own health condition, that we had to admit her to a nursing home. She "escaped" three times going Christmas shopping, etc so we didn't feel it was a safe environment for her.
At this point, nearly one year later, she is in an Alzheimer's Unit. It is a locked unit but because she looks so normal to those that don't know her they have let her out thinking they are helping her! Thankfully the staff is especially aware of her and hasn't let it happen again. She knows us now, and some of her friends but still talks on and on about things we have no idea about! She makes up fantastic stories! She is such a blessing to those in the Alzheimer's unit. She thinks she works there and is so kind and helpful to everyone! She makes beds for the staff and helps with meals etc! She encourages all of the patients. In that regard, we are so blessed. My Dad is able to take her out for lunch and dinner frequently. He is very lonely without her. He now lives alone in their condo but is doing amazingly since he has to take care of her now! He is driving, and going to visit her almost daily! He has continued to amaze us! So there are many blessings, but how I miss calling her for recipe or just to talk about my boys. It is such a devasting illness. From the many stories posted here and reading hundreds of emails, I have been so encouraged and continue to hope that she will improve.
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Kim
Massachusetts, U.S.A.
Posted: November 16, 2007 |
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