This is a day in which God needed to be at my side, and equipping me with the same fire in the belly for justice and righteousness that made Jesus kick over tables and accuse the moneychangers of being hypocrites.
This was the day of my family's third long-term care meeting with the administration of her nursing home facility. To give you the quickest update: those of you who read regularly may have noticed that I am no longer receiving comments from the Anonymous Peggins. That's because she had a stroke the Wednesday of Holy Week. Anonymous, who also goes by the moniker, "Hurricane Peg," started out at one facility, was moved to another with more of a nursing home component, and finally was transferred to the one she's currently in called The Laurel Center. At first, it seemed like a good fit. But...
To give myself a break, I'll simply cut-and-paste the entry from her CaringBridge site:
1. Mom was cut off from skilled therapy on September 26th. I had been with her for two-and-a-half hours, but nobody came by to say anything about it to me. Instead, they called my brother, Tom, her guardian, and informed him. He told them to go talk to me, that I was there, etc. etc. As I said, nobody did.
2. The next day, I was told she would be in "Restorative Therapy" with basically low-paid nursing staff massaging and moving her right arm and hand. I had my brother, Edward, with me and we forced an impromptu care meeting with the head of the PT department, the speech therapist, and the bureaucratic social worker who is in charge of the facility. At that time, we were promised that mom would be doing "some" therapy, including bilateral movement of her legs. However, there would be no more speech therapy because the speech therapist believed that she had plateaued, and it would be "good enough for the staff to stop by her room and say, 'hi.'" The ST then gave us a lecture on the brain that would have been impressive had you never studied anything about the brain, or read books on strokes. Unfortunately for her, I have done both, and her presentation simply confirmed things I already knew, thank you very much.
3. My brothers and I had observed that mom had been often too drowsy to have a conversation much less any kind of visit. When we were in the impromptu care meeting of September 27, I inquired about her medications and what she was taking and how much of it. I noted for all present that I had pointed out, back at our first care meeting on August 22nd, that I realized it was a tricky balance to medicate a person who had brain damage such as a massive stroke. I wondered where we were on the pharmacological front, and how the medications might be affecting her ability to perform in skilled therapy sessions. There was some hemming and hawing, and making excuses that the nurse was out sick and therefore they would be unable to answer those questions. (I would later learn from a friend familiar with PT in these kinds of facilities that it was outrageous that my mother's care team couldn't tell us about the drugs.)
That was the "September surprise." Enter October.
I received several phone calls from my brother, Edward, irate because the facility was calling him and asking him to be at their door within 90 minutes to accompany my mom to a hospital for an MRI. We don't know who'd ordered it, or why, or why they didn't bother to let my brother, Tom, her legal guardian, know that there was a test being ordered. And then the ambulance that was to transport mom didn't show up, and they missed the appointment.
About two weeks later, another irate call from Edward. It was the night of Game 2 of the American League Championship Series. He'd called to check on mom. The nurse claimed that mom was "talking to them and telling them about their body types." This didn't sound right to me... or to him. They put mom on the phone, and, of course, she wasn't "talking"; she was crying, and the nurses were laughing. He told her to give the phone back to the nurse at which point he gave the woman what-for. And I called the nurses station, and inquired as to what had happened with my mother that evening.
"Well, she was upset because she wanted to go to bed, and we still needed to put the trays away from dinner."
They claimed mom had tripped one of the nurses. I scoffed at that suggestion, and made sure that my mom was safely in bed at this time.
"Yes, she is."
"Well, I'm glad to hear that!"
Another week goes by, and another phone call from Edward. Turns out that the "restorative therapy" mom was supposed to be receiving was ordered stopped on October 5th, which incidentally is the anniversary of my dad's death. October 5th was ONE week after she'd been moved into the restorative therapy group. We were just being informed of this change in her status at about October 25th. So, for almost three weeks, my m the Hurricane was stalled in the waters of a bureaucratic hell.
Meanwhile, the drugs, Ativan, Seroquel, and Depakote, had stayed at the same dosage level since the day she arrived despite the promises that they were going to scale back the anti-psychotic medications once they'd found the right level. End result: the Hurricane was being downgraded to a tropical depression. It wasn't for lack of her effort; it was because she was being overmedicated.
All of this was confirmed for us last week when mom went to see Dr. Kent Logan, the neurologist in Exeter who had first evaluated her when she'd had her stroke. In advance of that meeting, I sent along videos that I had made of mom when she was at the other facility in Fremont. The contrast was stunning. And Dr. Logan immediately recognized the problem. Mom then saw her orthopedist this week. Same result: a realization that mom was on too many drugs.
Mom was just happy to get out of the Laurel Center. According to Tom, she dozed off for a moment on the drive to see Dr. Logan, but then woke up to realize that she was on Route 101, and--hey--"why isn't the van driver taking the exits to get me back home?!" There is NOTHING, repeat, NOTHING wrong with her cognition!
But there is something very wrong at the Laurel Center. That became clear again today with our care meeting. This time, however, our family had an advocate in the room with us: the state's long-term care ombudsman representative. This man has been a hero for Tom in his effort to stay on top of what's happening with our mother.
As you might expect, the facility's administrator was on the defensive. In fact, she was on the OFFENSIVE, or being offensive, questioning my brothers and me on our knowledge of drug interactions, dismissing Tom as "an attorney"; hence he has no medical background, and the rest of us could look things up on the internet, but we weren't "the experts" on these anti-psychotics, normally given to people with schizophrenia and bipolar disorder. I had promised Tom that I would behave, but I was well-past my tolerance for this kind of dismissal.
"Well, where IS the psych nurse and the doctor then? I have in front of me the notes from August 22nd where we were told you'd be scaling back some of these drugs. Clearly, that hasn't happened. Why hasn't it?!"
Now begins the Alice in Wonderland-like experience of a conversation with a long-term care facility like The Laurel Center. First, there was the lie that they had actually started correcting the dosages BEFORE we had mom see Dr. Logan. In fact, the only drug they moderated was the Ativan, and only because that's the one Tom mentioned in an email. Because Tom is "an attorney" and not "an expert," he didn't know to look at Seroquel as another culprit in mom's drowsiness. Heck, they'd been giving her Seroquel, as Edward noted, as if it were an after-meal mint!
And then the real shocker. The ombudsman alerted me to the fact that a piece of paper had just been passed across the table which shows that not only has the Hurricane been doped up, she's lost 10 pounds since she entered the place. Given that she hasn't been working out in a therapeutic setting, and just laying in bed or sitting in her chair, this was alarming. Again, the excuses. Again, the assurances that they work as a team with the dietitian and the psych nurse and all these other people who were not present in the room to monitor and adjust for the patient's needs.
"With all due respect," (and that was the most Southern I was going to use in this conversation with people in Bedford, NH) "If you've been talking to one another and working together and monitoring, then why is it that nothing has been done to address this issue and we're now learning about this weight loss?!"
I could hear the agitation in Edward's voice as he noted that he calls regularly and inquires about her eating and her weight, and no one had ever said anything about her loss in weight. Tom wanted to know if this, too, was a result of her being overmedicated and that she's just too worn out to finish her meals. Again, the MSW administrator attempted to dress him down as being "an attorney."
That's when our new friend, Michael Lucio of the long-term care ombudsman's office, stepped in to correct her.
"He's an attorney, and he's her son." You see, we, her children, might actually know our mother better than these folks do, or even care to try to know her.
And that's what's most disturbing. They'd rather keep her sedated than nurse and rehab her back to some level of independence. This will not do for Hurricane Peg. Or us.
Hurricane season isn't over yet. And with your prayers and support, we are aiming to get her back over warm waters to gather strength and get away from the Mad Hatter's Tea Party that is The Laurel Center.
Please pray. For all of us.