I don't what it was about 2025, but for me and my family, it seemed like we just kept dealing with one crisis, one disaster after another. And while things like deaths, injuries, and car accidents aren't necessarily directly attributable to the policies and actions of the government, those same factors can sure make things much worse than they might have been otherwise.
Back in January, my brother died of sepsis and kidney failure. He was legally blind, and as a result, was on Medicaid. As a result, he did not receive the same level of care a wealthier, privately insured person would likely have gotten. The hospital he was at kept him in their ICU far past the time he should have been transferred to another facility that could provide him with proper care for the kidney failure he started to develop a week before he died. Instead of immediately transferring him to an appropriate facility once it became apparent they would not be able to properly care for him, they instead lied to me and other family members when we started asking questions about his labs, which clearly showed his kidney function was in significant decline, and that he may have been developing sepsis. Even once he was placed on a ventilator a few days before he died, they still stalled having him transferred a few days, claiming they could not find him a bed at a facility capable of placing a shunt for dialysis.
Finally, the day before he died, they moved him to another facility, but by that time it was too late. I found out once he got to the new facility that the rural hospital where he was staying had lied to us about not being able to find him a bed--instead, they were waiting for a bed to open up at a particular hospital in Lexington due to their contract with them. I was informed by the charge nurse and the doctors who treated him on his last day on this earth that they do not cap beds at their facility--he could have been sent there at any time, and they would have made a place for him. Worse yet, the doctors told me he would have likely lived if he had been transferred sooner.
The doctor and decision makers at the rural hospital he was at allowed the profit motive to override any sense of responsibility to their patient, as is common in US healthcare everywhere. My brother died so the shareholders could make a profit. To them, his humanity did not matter--he was just another low income piece of trash, and they did everything they could to squeeze every nickel they could get out of his situation, instead of providing him with the care he needed.
And this is not the only time this year one of my relatives has been denied the care they need due to the policies of a hospital and the policies of Medicaid in our state. My sister is currently undergoing treatment for cancer of the tongue. She had surgery back in November in which they removed the cancerous tissue, placed a feeding tube in her stomach, and a tracheostomy in her neck. The surgery itself went very well. But the care she received once she left the ICU has left a great deal to be desired.
When they initially tried to discharge her, they said they were unable to get her approved for a stay at a rehab hospital or home health because her Medicaid plan, Humana Healthy Horizons, denied her on the grounds that she was able to walk 150 feet when the physical therapy team got her up to walk. Mind you, she also has significant other health issues--she is oxygen dependent with stage 4 COPD, and she is mostly blind due to a severe stroke she had back in February. (At least she got decent care at the hospital she was admitted to for this). She also has some short-term memory issues as a result of the stroke. I raised Cain with her social worker about the fact that there was no plan in place to see that she received the care she needed once she was discharged. They ended up keeping her for another day while they supposedly made arrangements for her. Still, they ended up discharging her at 4:30 on a Friday afternoon, after the doctors and administrative staff had left for the day. By the way, this is the same hospital that had a contract with then rural hospital that let my brother die—but no other facility in the area could provide the surgery she needed.
The discharge nurse told me that they had trained my sister on how to set up and use the o2 concentrator for her trach, along with the suction device they sent with her. Once we got her home, it was apparent she was unable to remember anything they told her. There were no instructions sent along detailing how to set up or use the equipment. My daughter and I tried to figure it out, but since neither of us have received any training on using these types of equipment, we were unable to get them running. We were unable to reach the DME company, so we could not ask them either.
Once her o2 sat started dropping below 90, we had to take her to the local hospital. The doctor at the ER had one of the respiratory therapists on staff come down and show us how to set up her equipment and use it properly. He also did a CT on her chest and learned she had a bit of pneumonia in her lungs, which he prescribed antibiotics for.
This, however, was not the only way her needs were not met. She also has a feeding tube, and was supposed to have at least one feeding per day in order to help her maintain her weight. No provision had been made for her to get her supplements--I had to pay for them out of my own pocket for several weeks while her PCP worked out the details with her insurance company and the local DME company to get these paid for by insurance. And to make things worse, she lost her food stamps due to Trump's actions during the shutdown, so I have been buying her food since then as well. I helped her reapply, but we were told it could be February before she gets them back, if she gets approved.
Meanwhile, she has no help at home except for what I can do for her after I get off work each day, since she has no reliable caregiver at home. I have to go and set up her meals and medications (her vision is so bad she can barely make it to the kitchen and use the microwave to heat up her food.) She needs assistance with bathing, paying her bills, caring for her cat and taking care of her house, in addition to caring for her trach and feeding tube. She has great difficulty with speech due to the surgery and her trach and often has to write thigs down in order to communicate her needs. She also cannot see well enough to text on her phone. She has a live-in boyfriend at home, but he cannot be trusted to care for her. He has a severe drinking problem, and my sister has told me he often will not feed her or care for her when she needs it because he drinks all day. (In fact, when she came home from the hospital after her stroke, we had to call the police in order for her to be able to get into her apartment because he was passed out drunk and would not open the door.)
I called Adult Protective Services in the hope that they would perhaps be able to at least help her get a home health aide, but even they were unable to get any services for her at the time. I just called them again--her boyfriend has assaulted her from time to time, and a few days ago, he started hitting her and pulling her hair in a drunken rage. On previous occasions when this has happened and the police were called; they would not do anything about it because it was "his word against hers." This time, they actually arrested him, because a maintenance man who was working on the apartment heard everything and gave testimony to the police. As soon as he can come up with $200, he will be able to bond out and will be right back at that apartment since my sister is apparently unable to make him leave without getting an EPO. The landlord is aware of the situation but will not evict him. My sister's situation is yet another example of how misogyny harms all women--not even a cancer patient can receive adequate protection from domestic abuse because of a culture and laws that blame and punishes women for the crimes committed against them.
Meanwhile, I am stuck between a rock and a hard place where she is concerned. I have had to reduce the number of hours I can devote to paid caregiving for my autistic daughter (my oldest daughter has been helping, but legally she cannot be paid for doing it because of the way the Michelle P Waiver is set up.) In addition to paying for her food and other needs out of pocket while getting her set up with her nutritional supplements and hopefully, her food stamps, I am starting to get severely behind on my own bills. Meanwhile, my sister has to sit alone all day Monday through Friday until I get to her house around 5:30 or 6 pm. Since it is obvious she is not going to get any more help on the home health front, and she is going to need assistance for at least 3 or 4 more months while she undergoes radiation therapy and chemo, I may have to resort to more desperate tactics in order to survive, such as taking out expensive loans in order to keep the bills paid--I am already about $1200 in the hole on this month's bills alone. I applied for a loan to cover this but I don't know if I will be approved. If not, we will have to choose between lot rent and my payment on my mobile home, or keeping the heat, electricity, water and car payment made. There are also no options to replace my own lost income due to all of this--since she is a sister, I cannot take FMLA time or use the short-term disability insurance we have at work, which will sometimes pay out for lost wages due to caring for a family member who would have been covered under the FMLA. I am completely out of PTO as well since I used it all up dealing with all of the disasters from last year.
I work in healthcare myself, and I see every day how patients--especially those on Medicaid--are harmed by policies that deny them care, and often subject them to second rate care when they are able to access it at all. I see people with severe back injuries denied MRIs or treatment for their condition, being told they must complete weeks of physical therapy first. Or who are outright denied simple treatments, such as steroid injections, that patients on Medicare or who are privately insured can be approved for easily. I sometimes wonder if Medicaid is this bad in blue states, and if this is just a way Republicans in red states inflict suffering on the poor--and shift caregiving responsibilities and costs onto their families. While this is killing me financially, at least I have some training that allows me to provide at least some of the care she needs. I wonder how many low income people have to suffer every day the way she is having to, and have no one who can provide any care for them at all.
But my sister and brother are not the only ones in the family who have had to suffer because of our crappy healthcare system--this year I have had a few healthcare issue of my own to deal with, and even though I have good insurance through my work, I still had to pay a ton out of pocket. I fell and broke my ankle back in March, and though I was told to go to PT, I was unable to do so because of the high copays, and the fact I would have to miss work on order to do it. Then in April, I got into a car accident when I was t-boned by a drunk driver. I was only able to get the physical therapy and treatment I needed because I had PIP insurance through my car insurance policy, and I got a lawyer to help go after the drunk driver's insurance policy. The physical therapist was willing to wait until the case settles before collecting on my portion of the bill that my insurance did not cover, and was willing to see me after work most days. Still, it will take months to get any money from this, if there is even anything left once all the medical bills are paid.
In addition to the numerous fiascoes above, in the past year, one of my uncles died due to brain cancer. He and I used to talk about politics a lot, and he was very progressive in his views on many issues. He used to help get people registered to vote, and he was a major influence on me--because of him, I became involved in similar activities over the years. While it was expected that he would not recover, it still does not make it less sad and painful.
I had a second minor accident in the car I bought to replace the one that was totaled in April, and had to go through the aggravation associated with dealing with the other driver's insurance company in order to get it fixed. (A young man dinged my bumper at a stop sign.) Luckily, nobody was hurt, but I heard that poor guy lost his job since he was driving a company vehicle.
Back in February, I had a terrifying experience while driving home from visiting my sister at the hospital. While driving down Richmond Road in Lexington, a cop pulled up beside me and started swerving toward my vehicle. At first, I thought he was trying to pass me so I slowed down. He swerved toward my car again, and so I slowed down a little more. Then he put his lights on and pulled me over. Note that I was driving the speed limit, so he had no reason to pull me over to begin with. He got out of his car and started screaming at me like a lunatic, saying I was driving too slow. Frighteningly, he was not wearing his badge. He then got back in his car--no citation, no ID or insurance check. I am sure the only reason I was not harmed in some way by this guy is because I didn't have the skin color he was looking for. If I had been black or brown, it is untelling what might have happened. The police in Lexington have a reputation for being racist and on occasion, corruption and police brutality.
At work, the amount of staff we can have has been cut--people who leave are not being replaced. Meanwhile, the workload has gone up. I now not only have to perform my clinical duties, I also have to do insurance authorizations. Some of my co-workers are so overwhelmed they are talking about quitting--and if they do, I will probably have to take on their work too. I would love to find something that is not so stressful, but in this economy, as a middle aged worker, I am afraid there would be few positions out there for me that pay what this job does. This kind of crap is one big reason why so many healthcare workers are quitting.
I may end up having to move this year as well. That mobile home I am paying on is rotting down. There is apparently an underground spring beneath this place that keeps causing the floors to rot and mold to get on the walls. I keep having to spend money to fix the floors and the walls. Now other issues are developing--some of the light fixtures and outlets have stopped working, and there is a big crack in the fiberglass bathtub I had to fix. I will not be able to keep doing this forever. Apparently, several other people living here have had similar problems with their homes as well, and the mobile home park has known about it for years but won't fix the problem by installing drains. I am within about $3500 paying it off--but isn't that the way things go anymore? As soon as you buy anything anymore, whether it's a toaster or a new car, and you get it paid off or the warranty expires, it seems like many things break at just at that point. There is a term for this--planned obsolescence, in which things are intentionally made to have a limited lifespan so people have to keep replacing the stuff they buy over and over again. This not only cheats consumers, it is bad for the environment.
In addition to the stress caused by my personal situation, there has also been the stress associated with the daily drama coming from Trump and the Republicans, which are harming all of us in the form of higher costs of living, knowing that nearly every day, he is going to do something that makes life worse for us all.
I may have to try some kind of weekend job or gig that I can do in the mornings once my sister gets a little better to keep the bills paid. I know a lot of other people searching for side gigs right now in order to survive. It is becoming apparent that a person almost has to work 16 hours a day, seven days a week in order to make it in this economy—and even then, it might not be enough.
Sorry for the long, rambling diary. I just wanted to get it all off my chest. What is truly sad is that nearly everything that happened to me and my family was made worse--or caused--by Republican policies that screw over the poor and middle class, and permit rampant corruption on the part of businesses, law enforcement, and other government entities at all levels. Hopefully, all of you had a better year than I did! Here is to hoping we win the midterms this fall, and perhaps something can be done that will rein in Trump and the MAGA nutjobs destroying the United States and it's people.
