Managing Medical Care
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Oct 8, 2013
I've been caring for my SIL as primary caregiver since her husband abandoned her a month or so ago. She came to us already dealing with infection as well as other significant health issues. The story is in my news feed.
What happened is this: a week ago she woke up to take her morning meds and vomited blood. We took her to the ER. 3 hours later she was showing signs of stroke, but was being held for transfer and the docs did not treat with TPA (because of the internal bleeding). Since she was at a small town hospital, the Dr. wanted to transfer to a larger facility. That took 12 hours.
She was finally transferred straight to ICU and stayed there for 4 days. The upshot was this: The infection(s) I had taken her to the Dr. for 6 times in just over 3 weeks turned out to be MRSA and that went septic. She suffered 5 ischemic strokes, an infected heart valve, acute kidney failure and years' worth of esophageal ulcers. Everything thus far is being treated appropriately, and she is now stable. Her blood pressure is finally under control after a week, but her blood sugar (she's diabetic) is running in the upper 300's consistently.
She has been transferred to the stroke unit (which is a nightmare of mismanagement and incompetence) and we are hoping to get her stable enough to transfer to an inpatient rehab center.
I have dealt with neurology, cardiology, gastroenterology, infectious diseases, psychiatry and internal medicine. I am waiting for nephrology and hematology to consult with me.
After waiting 7 days for her various issues to resolve enough so we can prioritize and address the next critical issue, I found myself losing my temper, and this is where I need some sympathy and support. I have spent 12-14 hours a day at her side, as a loved one, primary caregiver and advocate. This is not the problem.
Today I arrived at the hospital at 8AM to meet with the Drs when they did their rounds (as I have done every day) and they showed up at 11am. At 12, I went to the nurse's station to find out when they would come to SIL's room, only to be told went to lunch. At 2:00, when I asked when they would come, the nurse shrugged her shoulders with her hands in the air and said it depends on them. At 5, I said I had to go look at rehab facilities, but don't want to miss the docs. At 7, I got angry. 11 hours of waiting and not a single face to see the patient they had been treating via computer screen and phone calls. REALLY?
This is when I lost my temper, reassuring the poor nurse that she is not the problem, but if ANYONE had seen or talked to me in the past 36 hours, I could have told them the meds that my SIL would respond to effectively. Had the Neuro docs come after new signs of stroke, they could have told me why they have no intention of treating a new stroke. This is crap!
How does anyone deal with the stress of critical illness when you are "it" when it comes to the care and advocacy of a loved one? I have made special efforts to eat, to take breaks when I can, to go home to sleep, but I have lost 20 pounds and find I have no patience left for the problems of the nurses or doctors. I have a spectacular husband and family giving me all the support in the world, but when push comes to shove, I am afraid that if I miss a minute she may die, and I really feel responsible for her health and safety.
I have no idea when I will have another few minutes to come back here, yet I guess I really need to know that I am not the only person out there that is terrified every minute of every day that a single missed sign or mistake may cost someone their life.
Please, if anyone has support or suggestions, I am open to it. I cannot afford to lose my health, or I can't take care of her. The staff and docs make it very clear that I am an excellent advocate, but there is no support here for what I am going through. What do I do? I am feeling very lost and alone right now.
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Oct 15, 2013
Your message brings memories for me.. The long hours at the hospital, trying to be the advocate for your loved one.. Trying to get time with the Doctor.. I would make sure that from now on you request to speak with the head nurse not just the ones working the floor. That certainly helped us on many occassions. Once we got her involved things would start to happen. We had actually requested for the doctor to call us on our cell because we did not see him come by on a certain "critical" day. I will include you in my prayers.
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