The Destroyer
My mother just turned 73 two weeks ago and until a few months ago she was a vibrant and intelligent writer, artist, and pianist. With curly strawberry-blonde hair that defied her age, she looked much younger than 73.
It is hard to comprehend how this disease can destroy her so quickly. The diagnosis was confirmed with two spinal taps, although 2 EEG's and the MRI had all pointed to CJD. With the spinal tap, the doctors said it was an "86% chance that it is CJD."
Last May (on Mother's Day) my siblings and I first became aware that something was "not right" with our mother. She had been grieving over the loss of her 91-year-old mother who had died suddenly in a car accident several months before. Some of my mother's short-term memory loss and confusion was blamed on stress and grief; but, by August when she was repeating herself constantly and then ephasia (Aphasia?) set in and she was having trouble connecting the right word with the objects, we knew she was in deep trouble. Her 'family doctor'said it was grief and anxiety related and prescribed anti-depressants. As you have probably heard many times from other CJD families, we went through many weeks of doctor-visits, multiple phone calls to the doctors from each of us and it wasn't until the middle of December that we got her to the specialists in Houston. After two rounds of tests the same diagnosis of CJD was made. Seeking medical attention for the appropriate tests was aggravated by our father who has lived in complete denial until the last few weeks.
Hospice has now been coming to care for my mother everyday and the latest report is that they estimate "she probably has another 6-8 weeks."
It is difficult to believe Mother's body can survive that much longer, especially since her spirit has been traveling to the other side for many weeks now. As her family, we have decided to let her die at home with no technical support that would only postpone the inevitable. I have a sister in Houston who is able to visit 2 or 3 times a week (I live in Austin so I see her less), but my father is the main caretaker for her. He is still trying to feed her pureed foods, has functioned FOR her for several weeks now, and is still believing that "God will heal her". The rest of us are simply praying that she will be delivered soon.
They live just north of Houston (many of our friends and family live in the Galveston Bay area though) and the Hospice in that area is wonderful. Everyone has been so kind, and wise in dealing with my old Marine Corps daddy! And yes, we have been in touch with at least one department at the TDH, here in Austin in the office of communicable diseases.
Excuse the length of this letter, but my sibs and I have all been curious as to why the doctors have not asked, wondered, probed, nor tried to figure out HOW my mother got CJD. Other than asking, "Did she have surgery recently, or travel outside the US?" they have merely said it is "Sporadic"and they don't seem to care much about the reasons why. We've tried to think of everything possible,including the fact that she had cataract surgery about 3 years ago. For awhile my sister was frantic to find out who else might have had eye surgery around that time at the same clinic and perhaps see if anyone else has contracted CJD....but again, we haven't had much energy to pounce on some of these suspicions.
So....thanks for inviting me to write you, although
you probably weren't expecting such rambling. You just caught me
in a week where I actually have a couple of free hours. Again,
thank you for caring out of your own loss and suffering, and for
your ongoing work.