My sister-in-law suffered a series of embolic strokes in early November, upending her life. We moved her in with us, a multi-state adventure that racked up our credit card debt while we work to get her new life sorted out. She’s on Medicare, and inexplicably, her plan changed from a PPO in Colorado to an HMO in Oregon. We had to put up with this until January 1, when we could enroll her into a PPO here as well. This meant six weeks of dealing with the only hospital in the area that would take her insurance. This hospital is also the sole Medicaid hospital in the area.
Medicare, in its wisdom, decided to release my sister-in-law from rehab on Thanksgiving day. Her brother managed to get her two days prior and bring her with him to our house for Thanksgiving. Rehab let her go with no prescriptions, not even a blood thinner, which even I know is the first thing you give to a person who’s had an embolic stroke. Even I take the damn things.
It quickly became obvious that my sister-in-law’s lifelong anxiety had blossomed into a near-daily state of constant panic attacks. This extreme state kept her awake most of the night (she paced — all night). It was also obvious that she was dementing noticeably day by day.
We were able to get her into a doctor on December 3. We begged for antianxiety and sleep medication. He demurred. “Wait until you see the neurologist,” he said. But at least he gave her a blood thinner and 50mg of trazodone for sleep.
On December 18, both my sister-in-law and the rest of us were losing our minds because she couldn’t sleep and we were trying to peel her off the ceiling. We begged the neurologist for antianxiety and better sleep medication. She referred us back to the GP — “That’s his thing,” she said.
We called the GP to phone in a prescription. He was on vacation. We would have to make an appointment with someone else. My sister-in-law was suffering. We unilaterally doubled her dose of trazodone. In desperation, I gave her some of my homemade cannabis tincture for anxiety and inflammation and pain. It helped. And then, it helped less and less with each passing day, until we stopped giving it to her altogether.
A few days later, the home nurse suggested we take her to the ER because of her extreme sleepless and anxious state. By this time, my sister-in-law felt the urge to pee every 5 minutes. She didn’t actually have to pee. She just felt like she had to go. (Our water bill is $80 above normal for December as a result.) She couldn’t sit for more than 5 minutes, either. We waited (and paced and peed) for 4 hours while they did a urinalysis, EKG, and blood test. At last, they called us back to see the doctor.
A young man walks in and says, “There’s nothing here that I can admit her or treat her for.” I explain that she’s crawling on the ceiling and hasn’t slept in days. But “antianxiety and sleep medication is not in my wheelhouse,” he says. In other words, “I’m declining to treat her.” Here is a large hospital on a weekday, full of employees, and apparently there is no one with expertise available for him to talk to in order to help this poor woman. Pathetic.
We wait for the doctor’s appointment. There are no “same day” appointments here. That does not happen. If it’s an emergency, go to urgent care, where they will also decline to treat you. A home nurse, for the first time, mentions the phrase “vascular dementia,” which is apparently common after a stroke. One of the symptoms is an urgent need to pee. No doctor or neurologist has brought this up.
Finally, she goes to a doctor who is not on vacation. He has a reputation as a “lifestyle doctor.” He does not believe in drugs. An advocate takes my sister-in-law and fights for some medication. The doctor declares she is simply “bipolar.” At 75. After a series of strokes. He gives her an antipsychotic that can help you sleep.
The antipsychotic helps her sleep, but also makes her feel dizzy, nauseous, and generally hung over the next day. The home nurse suggests we stop that, then lets us know my sister-in-law has been discharged from their care. The last visit with the home nurse is not in her records. No mention of the vascular dementia. No mention of the extreme dementia, anxiety, and sleep issues that I put in writing to go into her record. Nothing.
On January 2, we take her to a doctor in our clinic. He is thorough and spends 2 hours with her. He describes the antipsychotic as “entirely inappropriate.” He gives her Zoloft and increases her trazodone dose. We finally have hope that she will be treated properly, not simply punted off to the next doctor or specialist.
Medicaid saves thousands of lives every year. It is a necessary program, and those who would cut it further have blood on their hands. But the quality of care isn’t always there. Part of this is systemic — mental health care is frequently ignored. And part of it is lack of political will. My sister-in-law is not destitute. She has good Medicare insurance. And the pattern of neglect we encountered during her first six weeks with us could happen to anyone. Fight for #MedicareForAll. Fight for a common system wherein decent health care is a fundamental right for rich and poor alike. How we treat the vulnerable people in our society says everything about who we are. No one should have to suffer because they can’t afford “the right hospital” or doctors.