My 83 yr old mom who has been suffering from bcell lymphoma and being treated sucessfully for it, suddenly oct 13 2015, my sister noticed her speech was weird and she was speaking a little nonsense. Nontheless she was awoken by my mom in full seizure. Never had one. She was rushed to the emergency room at Elmhurst hospital where she was immediately entubated. We waited for a room for 2 whole days. Where we saw prisoners chained to beds as well as witnessed three deaths.
Eventually she was taken to room. They tried to perform 2 failed lumbars and finally a guided one which came back negative for malignancies or meningitis, infection, as was the CT scan and MRI. They had no amswers and she continued to seize. After about a week, they removed the tube and she was somewhat i. Recovery mode, but then had another seizure, and she has not come back from this one. We tranferred her to NY Presbyterian Queens not only because they are SUPPOSED TO have a great neurology soecialty but her oncologist is also an attending. Well its been almost a month and they have fed her all types of antiseizure meds, adavan, kappra, vinpat, dilantin and they placed her in ICU. Once again entubated.
She is not waking up, yet her vitals and organs are perfect. The medical staff has seemed to write my mom off becauae they dont seem to know whats causing the seizures, and pretty much are asking us to meet with pallative care to discuss "options".
My mom, although is not waking up has not loss use of her brain however the more seizures she continues to get,the more damage. mY sister and i REJECT the comments because we see life in her and she is reacting to pain.
We are going by our extreme faith in God because we know this is not her time. We played Nat King Cole for her and she flickered her eyes. The nurses tell us to talk to her because she hears us.
I think, and i may be wrong,that because my mom is 83 with lymphoma shes not worth saving.
Are there other options besides taking her off the brathing tube aor tracheotomy which we are against?
We are asking to speak to the head of neurolgy becauae each day is a new Dr. And we have to start from scratch. Can anyone offer guidance. We are not giving up hope or faith that all doctors do not have the answers and God can intervene, but while that happens, can you offer any advice? Should we request a transfer to another hospital with a focused specialty in Neurology that cares about elders? In a brief conversation with the pallative care team it sounded more like " we cant do anything for her, and i quote, its an insurance thing..."
I ma not taking this sitting down
You've come here asking for advice.
My advice is that you listen t the medical professionals and, at the very least, accept alliative care for mom.
Although your mom is not awake you "know" that her brain function is still good.
From your description, it sounds like the hospital staff has tried and tried any treatment they deem MIGHT have a positive outcome. Yet you also think their attitude is "because my mom is 83 with lymphoma shes not worth saving." Then why have they gone to so much trouble to try to save her?
Here is the deal. Medical science has made leaps and bounds of progress in the healing science (and arts). But it does not yet know everything. We do not have a cure for diabetes. We have treatments but no cure for AIDS. We are living much, much longer than previous generations, and a huge portion of the oldest old have dementia. In my mind, this is simply a lack of knowledge that may be overcome in the next decades. I don't think it is a conspiracy to rid the world of "unworthy" individuals.
I'm not sure about moving your mother, but could you bring in an expert for a second opinion? Or would you just reject that if it didn't conform to your beliefs?
I think the opinion you really need is one from your religious leaders. What does your community of faith have to say about this situation? You don't "believe" in the motives or the skill or the intentions of the medical professionals. So talk to those whose motives and beliefs you trust. Get their take on what you should do.
About the insurance ... I can think of a lot of criticisms to aim at insurance companies. I favor major reform in that industry. BUT ... they have a certain pool of money and resources to work with and they must try to use that for the greater good of the most people. To continue to pay for treatments, therapies, drugs, etc. that are not working and that the professionals have concluded are not going to work takes resources away from people who might really benefit from them. I am very sorry to be so blunt.
You "know" that this is not you mother's time. If it isn't, then she won't die now. It is as simple as that. (My mother spent 3 months on hospice care and was released from the program since she no longer seemed likely to die soon. I guess it wasn't her time, in spite of what it looked like to the professionals at the time.)
I suggest bringing in one more expert of your choice, learning what the options are for your mother, and discussion the options with persons in your faith community.
I would bring your pastor or priest in to see her and to talk to the doctors and then be guided by his advice.