The tangled web of emotions that come with Dementia would put most spiders to shame. I’m terrified of spiders but not Dementia and I don’t know why. The idea of having such a debilitating and confusing disease really should scare me more than something smaller than my palm (in Seattle anyway). My years in patient care taught me how to be more comfortable with Dementia. Yes, I’ve seen a man break a toilet. I’ve seen a woman experience grief over her husband’s passing, over and over again, every time she remembered. But there is more to the disease. When the mood is right, talking with a dementia patient can be like entering another world. I’ve seen the joy on a soldiers face when he talked about seeing his wife again after the war. I’ve been instructed how to properly fold laundry by the owner of a laundromat. I’ve even chased a purple cat through a house the size of a small mall. I really did enjoy that cat. I like cats. Most important, I’ve met people where they are in their mind while keeping them safe in this world.
When an elderly couple and their son arrived at my office for an exam they seemed like any other loving family. The wife immediately complimented the flower arrangement in the lobby. Multiple times. I just figured she was in to gardening and told her I appreciated her thoughts. She then approached the holy grail known as our candy bowl. “I think I’ll have two,” she said with a mischievous smile. I told her to go for it, only to have her son interject and take the candy away. He explained that she has dementia and often forgets that she’s diabetic. Oops, my bad. I listened as she told her son more about how much she loved my flowers and how she kept meaning to get in to gardening again. Though he was aware her health wouldn’t allow this, he suggested they go buy some seeds later. I instantly liked the son as I saw the smile spread wide across her face. A few minutes after their exam started, the woman emerged and made a beeline to the bathroom. I thought nothing of it until her son peaked his head out to look for her. We found her in the bathroom scrubbing the toilet. “You don’t have to do that,” her son said in a rather amused tone, “work is over for the day.” She squeaked with child-like delight and zoomed back into the exam room with her husband. The son turned to me and said, “sometimes you just have to live in her world.” Yes indeed, good sir, you do!
*disclaimer- I am touching on a delicate subject here, as I am a white woman discussing cultural differences. I love to explore and learn about other cultures. It is not my intention to sound ignorant or xenophobic in anyway and I apologize if I offend anyone. This post lacks my normal humorous commentary to avoid any misunderstandings.
I am flooded with a montage of indistinguishable emotions whenever I think about my former roommate, Banu (name has been changed), and her duty to her grandparents. As Persian immigrants, her grandparents spoke only enough English to survive. They needed Banu’s help multiple times per week for everything from doctor’s appointments, rides around town, and shopping. Banu was in her mid-twenties while trying to launch a new career and live independently. She would often get frustrated by her family obligations and how much more demanding they were than many American families. As a 20-something American-born human my conditioning spawned resentment towards Banu’s grandparents on her behalf. She always seemed so overwhelmed with school, work, and family commitments. However, when I asked her why she didn’t set any boundaries, she was appalled. She refused to consider any alternative because she loved and respected her grandparents with such a complex depth that I could never understand.
Fast forward to the present, to a typical day in the office, when an Indian couple and their son arrived for an appointment. I asked if an interpreter was necessary, and the son said he would be translating. He had taken the entire day off work to drive his parents to various doctors and translate for them. I smiled and said he was a good son for taking such good care of his parents. “That’s what we do in my culture,” he said in a friendly but absolute manner. The idea that he wouldn’t take time off work or would just set up a ride for his parents was just as unfathomable as me riding an elevator without anxiety. As in, it would never happen. We continued to chat for a few minutes about his large family and the connection they share living in a place who’s customs differ so much from their own. I was humbled and grateful for this perspective. I witnessed an unbreakable bond, which is hard to come by in the land of the Seattle Freeze.
Elevators and airplanes have a lot in common, mainly because they both involve cramming into tight spaces with strangers and hurling through space. Also, a malfunction with either one could mean certain death. Not that I’m being dramatic or anything. Contrary to what my rambling seems to indicate, I love elevators for saving me and my asthmatic lungs from climbing 8 flights of stairs every day. I’ve always thought of elevators as inoffensive since people can just choose not to use them. That is, until I met Mark and Steve (names have been changed).
Mark entered my office in a stressed-out state. Due to a building-wide remodel, remnants of unfinished construction assaulted the eyes with bare, bright white walls and the ears with clanging, banging, and crunching loud enough to wake the dead. Among the chaos was an elevator covered only by plywood and a “pardon our mess” sign. This seemed to be triggering for Mark. A few years back, he had purchased an office building with plans to set up his practice and rent the other offices. He just had to make it ADA compliant with a ramp and elevator. Soon after the purchase, he discovered it would take over a year before an elevator could be installed. After that, it would be at least another year before he could get the elevator inspected. Also, the elevator would cost almost as much as the building to install. He held out for two years, unable to bring in any money from his investment, before selling the building at a loss. Lets just say elevators were a real sore spot for him. Steve, who had been silently listening from his chair in the waiting room corner, shed some light on the situation. The building he owns includes two elevators freshly built and ready for inspection. Well, they were fresh 3 years ago. Now they just sit unused because of a shortage of qualified elevator inspectors. Don’t worry though; he’s on the waiting list. The two men continued exchanging stories about the maddening process of building renovations and ended up leaving together. It would seem the cure for the Seattle freeze can be found in shared suffering.
I’ve worked in healthcare for years and I could pack a humpback whale full of paper shreds containing the names of people who have been screwed by the American health care system. And that’s really saying something because paper shrinks so much when it’s wet. I’ve spent hours fighting with insurance companies on my patient’s behalf. I’ll always remember the look on my coworker’s face when she walked in on me doing a happy dance because I got a treatment approved. In all fairness, the dance did involve “the swim.”
While waiting for an appointment, I struck up a conversation with the flustered woman next to me. This meeting seemed kismet when the source of her distress was revealed to be a battle with her insurance. L&I was using a loophole to avoid paying for an injury she sustained at work and her health insurance was refusing to pay because the injury was work-related. Her employer was now trying to force her into retirement because said injury was keeping her from doing her job. I shouldn’t have been surprised, but my face still contorted in a comical manner, causing her to choke on the water she was drinking. At least I was able to lighten the mood. She continued her story by saying she was afraid to retire because she didn’t know how to get health insurance. Cue my random but useful knowledge of Medicare and Medicaid. By the time she was called back for her appointment, I had helped her find a resource for free legal advice to battle L&I as well as contact information for a health insurance navigator.
I try to keep this blog humorous, but seriously I wonder how many people struggle with navigating our healthcare system without help from a random person who is socially awkward enough to break the ice and actually communicate with the person a foot away. A good question to chew on.