I have fooled myself, but not for long. Telling my mother's story is something I have avoided for a very long time. I was inspired to write the first part of Taking Care of Mom by something I read on OS that day, as is so often the case. A well-turned phrase sparks the muse within me. This is what happened the day I wrote part one of my mother's story.
Yesterday, I prepared to write the second part. I spoke with my sister for the better of the day, via phone, email and instant message. I gathered information on all the drugs Mom was taking when Kathy rescued her, taking her back to New Mexico with her. I read an extremely well-composed letter that Kathy had written to Mina about my mother's "care." I perused the list of drugs (over half a page long) that my mother was taking, all prescribed by the hospice doctors and provided by the hospice team. I researched each one so that I could write intelligibly about them. I listened with growing discomfort as Kathy describe the ridiculous, exaggerated nurse's notes in Mom's files. I heard my sister's pain as she leafed through page after page of Mom's medical files, files which Kathy had demanded copies of and finally received, although in an altered state.
As I prepared to write Part Two, I realized that it was going to be much harder than I had anticipated to tell this story. So much for fooling myself into thinking I was ready to write this. A miasma of facts and emotions swirled in my mind as I attempted to form them into a cohesive whole. This story should be told, because it shouldn't have happened to my mother, and because it should never happen to anyone else.
When Kathy got Mom back to her own home in New Mexico, it became increasingly obvious to her how much our mother had been overmedicating herself on the prescribed drugs that the hospice doctors were giving her. She had three separate prescriptions for morphine - two were for morphine pills, one that she took every night and one that she took once every twelve hours. The third prescription was for liquid morphine that she could take at will, which she did - usually 4 or more times daily. There were also prescriptions for various narcotic painkillers, Ritalin, and an anti-depressant with an extremely high prescribed dosage. She was also on an oxygen cannula which she wore 24 hours a day - except when she remembered to take it off to smoke. The oxygen level was set at a very high concentrated dose.
Mom didn't have access to her liquid morphine (or any of her other drugs, for that matter) and that didn't set well with her. She kept telling Kathy, "I have a terminal disease, you know!" It was a rough couple of days for both of them. A few nights after arriving in New Mexico, Mom woke Kathy saying that she couldn't breathe. An ambulance was called and off they went to the hospital in Albuquerque with the list of medications in tow. The doctors were shocked at the amount of morphine Mom was taking and the decision was made to admit her to begin weaning her off the morphine, as well as to evaluate her overall medical condition.
I sat in the room with my mother and Kathy a week or so later as a doctor explained to my mother that she was dying in the same sense that we are all dying, but that her death was, in no way, imminent. He told that she had many more productive years ahead of her. To my dismay, she didn't seem happy to hear that news. In fact, she argued with him that he couldn't possibly be correct because Mina had told her that she had a terminal disease. He carefully explained to her that COPD could ultimately be terminal, but that we all are destined to die of something.
"What I am telling you," he carefully explained, "is that you can go on to live a long and happy life and you do not need this oxygen you've been on." He went on to tell her that her lungs were in a weakened state because of the high doses of oxygen she had been receiving and because of many of the medications she had been taking, but that it was simply a matter of time before her lungs would be strengthened again. He reminded her that she was already walking the length of the hall and back, without the aid of any oxygen. "You've made great progress already. We are going to get you weaned off this morphine and some of these other medications and put you on breathing medications to help you breathe better. You have many more years, Mrs. McVay."
My sister and I returned home that night to her house and began going through the box of medical records that Kathy had demanded Mina mail to her. The records had obviously been altered and many pages were missing, but there was still a lot of information to be gleaned. There were many references to "the patient being unable to ambulate without the aid of a walker." Kathy and I stared at each other - our mother never used a walker. In fact, she didn't even own one. Up until the last few months, Mom was still driving and had made numerous trips to both Houston and New Mexico. This was the same woman who was "unable to ambulate without the aid of a walker"?
By the time I left to return to Houston, it was obvious that Mom's physical state was greatly improved. Her mental state, however, was another story altogether. Since she was hospitalized and under the care of competent doctors, we assumed that as her "detox" progressed, and her physical condition continued to improve, her mental state would improve. We were wrong.
Whether from the withdrawal from the drugs or from the prolonged abuse of the drugs, Mom's fragile mental state shattered into a full-blown psychosis. She was convinced that my sister and I were trying to kill her. She claimed that a rapist was roaming the halls of the hospital and even climbed into the bed of another patient one night. She hid behind the door of her hospital room and attempted to conk a nurse over the head with a flower vase. She repeatedly called 911 from the phone in her room. Finally, she was moved to the psych ward.
There, things went from bad to worse. Mom had a series of panic attacks, which increased in severity until ultimately her throat swelled shut and she had to be intubated. Her mental state was such that we were never able to communicate with her again. She never came off the respirator.
Do I think that hospice killed my mother? Yes, absolutely I do. They committed Medicare fraud using her unwittingly for years and when push came to shove, they increased her drugs to a level that would eventually kill her. Was she terminally ill? No, she was not. She was obviously psychologically disturbed, willing to trade her health for the "comfort" she was convinced she received from the nurses of the hospice. Obviously, not all hospice organizations are like this one. There are legitimate ones out there. Unfortunately, my mother found one that was willing to take advantage of her and she played right into their hands.
I miss her.