What do we really know?

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A woman I don't know died this week.

I knew of her and her life through posts in a mutual aid social media group, which I know is a sliver and not the whole pie. To be fair, this group is a safe space where people share about the things they need, their frustrations (especially about healthcare) and offer recommendations and resources. A lot of what is posted doesn’t qualify for Upworthy.

One of the first posts I read from Trudy was looking for help because of the horrendous care her disabled mother was receiving at a local hospital. She went two days without seeing a doctor and then was unceremoniously discharged with no consideration for how she’d get home or who would take care of her once she arrived. As her a caregiver, Trudy was understandably beside herself, not only for the wretched treatment her mother got but also because her mother lived with her. This was only one occasion she shared about the battles she fought, not only because of her mother’s health challenges, but also her own. 

This is something I can relate to.

My mother has experienced sub par care more than once in her healthcare journey. The last time was after she broke six ribs, dealt with the alarm on her bed playing “Take Me Out to the Ball Game” at random times overnight and having to share a walker with her roommate because they didn't have one to give her. As if all of that wasn't bad enough, there were fights with physical therapy about whether she needed to go to a rehab or was strong enough to go home.

The pièce de résistance came the day of her discharge. When told that I was sick with a sinus infection and couldn’t pick her up, a freshly scrubbed social worker insisted all she could do was call a rideshare. Then she asked if my mom knew what Lyft was. When my mother told her she used a Rollator and would prefer a non-emergency ambulance, she said, “Well, you have one of those at home.” It never occurred to her how my mother would get up to the fifth floor of her building from the car to access it.

I have often felt the guilt of not being able to offer my mother the care I prefer to give. Arthritic knees, a wonky hip and at times, utter exhaustion, have prevented me from doing the more physical tasks, especially after she’s been in the hospital. I’ve worked hard to find people to help with those kinds of things, but it hasn’t always worked out and then I feel bad all over again that I can’t do it.

There were plenty of posts from Trudy asking for other kinds of help. Once, the electric company gave short notice that they were going to be working on the street where she and her mother lived, so they would have no electricity for the entire day. Her mother used medical equipment that required electricity, so she scrambled to find a place for them to stay, but they needed a ride to Morningside because they didn't own a car.

I’m fortunate to have a car. My mother bought it and I cover the maintenance and insurance. But I was a bus rider when I first came back to Pittsburgh almost twelve years ago. It is not a fun or efficient way to get around. Buses often don’t make it to their stops on time, and although the reasons are understandable, it doesn’t matter when you’re standing in the snow or rain. They also change routes without really considering the consequences for those who depend on them. When they did that to a bus I took to and from work, the one due at 7:45 pm often arrived well before the one I’d hoped to be on at 7:10 because they extended the route, which meant more traffic, more people. 

I opened at 8 am and worked eleven hours dealing with tourists, cranky customers and demanding employees. The change meant I didn’t get home until close to nine and I had to return by 8 the next morning. It was annoying and exhausting.

Trudy shared the frustrations about how her mother had run into hurdle after hurdle with Access, the government subsidized transportation for those over 60. Several months of filling out paperwork and answering questions and she still hadn't been approved. Trudy had no idea how her they would get to a doctor's appointment that week since her mother’s disability precluded her taking public transportation.

Access has been tossed out by social workers and healthcare professionals as an answer, almost a panacea, more than once in conversations my mom has had regarding her frustrations with transportation. Most of them have no idea of what the process to get a ride looks like, and they have no understanding how frequently you can't even get a reservation even when you set the alarm for 7:30 and wait on hold for fifteen minutes until they open at 8. 

The rule is that unless it's a doctor's appointment, you have to call the day before you need the ride. This drastically limits the ability to be spontaneous or even get to a class or event. It's also not free. Yes, $5 each way is a lot less than a ride share. But for someone on a limited income, it adds up. Especially if you are active and social like my mom is.

I do my best to take my mom where she needs to go. Trudy and her mom weren't so fortunate.

Over the years I've seen her post about shady landlords, the added stress of getting clearances for a job she applied for, and almost being unhoused more than once. I’ve read about her health challenges, concerns about who would take care of her mother when she was in the hospital, and more stories of being thwarted at every turn in the healthcare system, but for herself this time rather than her mom.

She also made several posts about feeling ready to end it all and wasn’t shy about sharing how debilitating it was to constantly be at war - with the government, doctors, hospitals, insurance companies. Trudy needed the “care” emojis and words of comfort offered by other members who commiserated with the arduous battles anyone with a disability or caring for someone with a disability faces. It helped her to hang on and get up to fight another day.

As an aside, getting older may not technically qualify as a disability but when corporations like Dollar Bank refuse to put an accessible door on their banks because they’re not heavy enough to meet the minimum weight required by the ADA, we’re not far. My own arthritis and repetitive stress injuries make pulling and pushing painful and I’m only sixty.

Trudy was also frequently in a pickle financially. This is what part of a mutual aid group is for, to ask others for help when you're in need. It was never a large amount. $60 here to help until the next paycheck or a couple hundred due to bills being late because a hospital stay had depleted savings. She always said she would pay back a loan but that didn't stop me from judging her.

Why can't she just get her act together? I heard inside my head. When is enough enough?

I’m aware that in judging her I was judging myself for all the times I was unable to help my mom the way she needed. All the times I needed to borrow money to pay a bill or ask for some other kind of help because our society says asking for help means you’re weak. Despite all the memes to the contrary, I still struggle with it. Something in me says that how I take care of myself has to fit very defined parameters, aka doing it myself. 

If I need to involve others, it means I’m defective. Weak. Incapable. Or worse, incompetent.

Intellectually, I know this isn’t true but I haven’t quite managed to shake the voices that echo those sentiments when I need help. 

I don’t know how Trudy passed. A friend of hers, who is also in the group, let us know. What I do know is that there are thousands, if not millions, of Trudys. Women dealing with their own health challenges caring for loved ones who are aging, ill or disabled in some way. I know how exhausting the battles are, from stupid technology glitches to figuring out how to pay for prescriptions and food. I understand the pain of bearing witness but doing it because it’s more important for someone you love to know they are not alone.

Rest in peace, Trudy.

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