I was moved this week when I watched the video of a Maryland woman who was distraught because she was told by hospital staff that she would have to leave her mother-in-law, who was in severe pain and has Alzheimer’s, alone in the emergency waiting room due to COVID-19 restrictions.
As a former dementia caregiver, I can empathize with the helplessness and the frustration that Laura Kramer felt. It’s ridiculous that Kramer had to take her mother-in-law to another county in order to receive treatment and be at her side as her family caregiver. You can watch her emotional plea.
My own father had multiple trips to the emergency room in the last year of his life while he was a resident at a memory center. Their procedure was also to leave the patient at the ER once admitted because they didn’t have the staff to wait with the resident. I often thought about how confused and scared my father must have been, alone in a chaotic emergency room atmosphere.
The good news is that Kramer’s experience forced the hospital to revisit its guidelines and admit that they had made a mistake. Of course COVID-19 restrictions are necessary in a healthcare setting, but no-exception policies could have deadly consequences when it comes to caring for those with cognitive issues. Kramer’s actions should be a role model for other caregivers who find themselves in similar situations.
Photo by Kenn W. Kiser
One of the most frightening calls I received when Dad was in memory care was that he had been taken to the emergency room. Unfortunately, I received several similar calls over the course of the year Dad was in residential care.
The emergency room visits were usually prompted by falls. Even if Dad seemed OK, regulations required the memory care staff to send Dad to the hospital to be checked out. The worst part was that no staff member accompanied Dad. I can’t imagine the confusion Dad must have experienced, on top of his dementia, with the chaos that accompanies an emergency room visit.
Even for a person without dementia, the emergency room is a daunting experience. I’ve only been to the ER once as a patient, in high school, and it was an exhausting, fruitless experience. I’ve been to the ER several times with others having medical issues, and it is always a nightmarish experience. Why do medical emergencies seem to always happen in the middle of the night? Really though, it doesn’t matter if it is high noon, emergency rooms and hospitals in general seem to be caught in a time warp where it always feels like it’s 3 a.m.
There is so much hurry up and wait. People rushing in and out. Poking, prodding, medications being shoved in your face, or pumped into a vein. So many questions that have to be answered rapidly, and repeatedly. It’s enough to rattle a mentally sound person.
That’s why I am optimistic that some hospitals are reinventing the ER experience for those with dementia. Lutheran Medical Center in Denver was recently profiled for its Senior ER program. They’ve taken half of their emergency room space and retrofitted it to make it a more soothing, less chaotic experience. Everything from mattress thickness to lighting and noise level has been moderated to prevent the onset of delirium, which can hasten death.
The Senior ER has been such a success that people of all ages are asking to be admitted to that wing.
I never was with Dad on any of his emergency room visits. By the time I flew in from Atlanta (if my presence was recommended), he was already in ICU. Dad had several ER visits in the last year of his life, while he lived in the care center. None of these trips involved Mom or I being by his side. He would fall or have some other minor issue, and the nursing home would send him to the ER, then pick him up when he was discharged.
Today, Mom was sent to the ER for what turned out to be yet another blood clot. (That would be #3 if you are keeping track. I know I am.) Luckily, Mom still has most of her mental capabilities and knows why she was brought to the hospital. She can interact and joke with the staff. No one enjoys visits to the ER, but Mom can maintain her good spirits throughout the ordeal.
But I thought about Dad today, and all of those ER visits when he was in the latter stages of Alzheimer’s. Was he frightened? He was no doubt disoriented. He could name some of the staff members at the care center, the ones he liked the most. (Well, he would get close enough to their names, say Ronnie for Ricky.) All of a sudden, he was whisked away to a new place with new people. Perhaps it didn’t faze him that much at all. It’s just one of those things I’ll never know.
I’ll also never know the degree of loneliness that Dad felt, if he felt any at all. The emergency room is a lonely place to be, and you usually have plenty of time to sit around and think about it, as long waits are legendary. Did Dad yearn for human companionship of some sort, even if he couldn’t remember his family any more? I don’t know.
But I am glad I made the decision to be with my mom now.
I started a new job this past week and one of my managers had a terrible bicycle accident after work, and suffered serious facial injuries. He’s going to be okay, thanks to some fine work at the local trauma center hospital. However, he’s also diabetic, and despite telling the staff multiple times, they didn’t even bother checking his blood sugar until the second day he was in the hospital. Luckily, his wife, a registered nurse, arrived at the hospital and was present to be his medical advocate.
This incident made me think about my dad’s final ER visits. He had a bit of a revolving-door relationship with the local hospital during the final two months of his life. When Dad came back to Ruidoso to move to a local assisted living facility that finally had an opening, he was quite ill with what was most likely pneumonia. When the nurse did the intake process at the local care facility, I was told the red flag went off in their computer system when they entered the drugs that Dad had been prescribed by the other facility. I took a look at all of the medications he was on, and Risperidone was on the list. This is not FDA approved for use in elderly patients with dementia and essentially is used by care centers to “gork” out the residents so they are less trouble. Studies suggest the drug may have contributed to an increased risk of stroke in elderly patients.
When Dad was taken to the ER because he was so ill, he was also very lethargic. I asked the medical staff there about the Risperidone, and perhaps they could start weaning him off that, since it is known to make people groggy and clearly Dad was not a “problem” patient at the moment, due to his medical issues.
The doctor just shrugged his shoulders and said their policy was just to keep them on whatever drugs they are currently prescribed. While this might make sense in most cases, wonder if the assisted living facility had been giving him a combination of drugs that was making him ill? Shouldn’t the hospital take that into consideration, instead of blindly feeding my dad pills just because they were on a list?
I’m not usually a fan of being a bitch, but when it comes to hospital care, often, the nice and meek finish last. You have to speak up for yourself and the loved ones you are caring for, even if the staff roll their eyes and get frustrated with you. When someone’s life and well-being are at stake, you have to fight back against an often indifferent healthcare system.
Yesterday I wrote about how my dad defended me against a pint-sized bully when I was three years old. That sticks out in my mind because dad was typically hands-off as a parent, and let my mom handle the bulk of the parenting duties. This became more true as I got older, as I think it’s pretty typical that girls gravitate to their mothers when they approach adolescence.
But the summer I turned 13, my dad came to my defense in a big way. On one Saturday night, I started feeling very ill after dinner, with stomach cramps and nausea but still scarfed down the cherry pie that my mom presented for dessert because I didn’t want to worry her. Well, that plan backfired. Of course, I started feeling even worse and my mom offered some Pepto-Bismol but that didn’t help. It was probably just a bout of the stomach flu but as a teenager, everything seems more dramatic. It was a weekend night and back then I don’t think urgent care centers were as common so off to the ER we went. And of course, since my symptoms were vague and not acute, we were in for a long wait. I believe we were there for several hours, until after midnight. Over the course of the evening, I started feeling better, and they gave me some kind of medication to calm the stomach cramps.
They also had me submit a urine sample. When the doctor did his brief examination, he asked if I was sexually active. I was a bit shocked but said no. Well, this question made it back to my dad, and he was none too happy about it. He grilled the nurse and the doctor on why his barely 13-year-old daughter was being asked such a question. The medical staff, who I’m sure had seen plenty of pregnant 13-year-olds in their time, told my dad it was routine procedure. Dad backed off but he was still steamed. Of course, at the time, I was embarrassed that my dad would cause a scene like that (how dare he steal my thunder, I’m the one that’s sick here!) But looking back at it now, I think it’s sweet that my dad defended my honor without hesitation.