By teddy s.
I have posted in this forum several times about my caregiver relationship with my fiancee Tracey. She is a 23 year SPMS survivor, who is in the end stages. In addition to her MS, she suffers from multiple stage 4 bedsores. Several days ago, I had to call an ambulance after she suffered a major seizure. She does not receive any DMT medications, she is too far advanced. She receives 3900 mg of Gabapentin a day for the burning nerve pain, for which Medicare will only cover 2400 mg. (not a big deal), but she is also prescribed 100 mg of Baclofen per day to control her spasms. My research shows this is a very high dosage. My research also shows that there is a lot of documentation of Baclofen induced seizures.
The ICU doctors immediately reduced her Baclofen dosage, but will not admit that this was the cause of her seizure. Now she is on a respirator, and the pulmonary doctor is reluctant to remove her breathing tube, for fear that she will not be able to breathe on her own, despite her DNR and my POA. She is responsive enough to say she wants the breathing tube removed, and does not want it reinstituted if there are problems.
This is the end game. If she survives the removal of the breathing tube, she will be forever subject to pneumonia, which she will not survive. I do not want her, nor does she, do die in a cold, sterile hospital. Her doctors, and Medicare, do not want to release her. She and I only want her to come home, where she can live out her final days in a loving, supportive environment.
We are prepared for the end game. The hospital and Medicare are not.