My Mother and Why We've been MIA...
As many of you know, my mom had two life-changing strokes at the beginning of April. But there is a crazy backstory that hasn’t been made public. This is the reason I’ve backed out of so much this year and all of my projects got delayed.
My mother went to the hospital to have a tumor removed to help with her eyesight. As far as intra-cranial surgeries go, it was a fairly low-risk procedure. I was with her both just before and after the surgery. It was successful. I gave her a kiss and went home. However, things took a sudden turn in the next few days. My mother's previously clear speech turned to slurred speech and then to no speech at all. She developed a lingering fever, and as it would turn out, she had suffered a stroke.
I find out about the stroke over the phone. I was told it was “minor.” However, when I arrived at the hospital I found my mother unable to communicate, partially paralyzed, and completely unaware of her situation. I ask, “How is this a minor stroke?” The doctor on duty apologized for the previous miscommunication. Over the next few days, she regain her ability to communicate via slight head nods and by squeezing my hand.
A few days after her initial stroke, one of the neurosurgeons revealed to me that my mother’s strokes were potentially the result of their instruments getting contaminated due to a breach in the central sterilization room. Their scalpels, etc., had dust on them that transferred to a fatty graft, becoming a source of infection in her brain and causing the strokes. It was a shocking revelation. Even more shocking was the fact that it was documented in multiple places. I contacted a medical malpractice attorney who instructed us to play it cool and calm. He told me not to bring it up and to take lots of notes. We followed his instructions.
The neurosurgeon also recommended that we immediately have a second surgery to remove the contaminated fatty graft. I had to make a call right there on the phone, so I said, “Yes.” They said she would be in surgery within 3 hours. Emily rushed down there to get a medical and financial power of attorney signed. We knew this might be our last opportunity to get them, and we wanted to be able to protect my mother’s interests.
While the doctors and nurses were wonderful, the administration and social workers were horrible. They fought us on getting the power of attorney, and we had to involve multiple people to secure it. This appeared to be a turning point in our relationship with the social workers. We are labeled as troublemakers.
My mom didn't have insurance. Her surgery was granted on a payment plan. The social workers heavily pressured us to send my mom to a charity nursing home, which would have ended up costing a fortune and wasn't a charity at all. But before we could do that, we needed to provide them with a bunch of my mom’s financial details. They acted as if, and claimed in the medical notes we requested, that we were purposely delaying turning in documents. The truth was, it’s hard to figure out someone’s passwords when they can't talk, and convincing financial institutions to give you all the information you need is a challenge.
We were open to the charity nursing home as a last resort. We wanted something closer to us that could provide her with better care. So we reached out to several care facilities that were open to receiving her. However, the social workers called every other nursing home we tried to get her into and convinced them not to accept my mother. They were dead set on undermining us (and mom’s desire) and sending my mom to the charity facility. Why? We still don’t know.
During all of this, mom’s ability to communicate improved drastically. She also regained a good deal of her mobility. The repercussions of the strokes were still a big deal, but the future wasn't as bleak as it had appeared in those first few weeks.
So, we had to hire yet another attorney specializing in Medicaid and a patient care advocate (PCA). These women were a huge blessing. They informed us that they had never seen anything like the behavior of the social workers. The fact that I was assembling a team unnerved the hospital, and things got even weirder.
They ask me to do video meetings several times a week. These meetings include 8-10 hospital staff members from different departments. In one of these meetings, they threatened to discharge my then still paralyzed and incontinent mother to her medically unsafe home. So, I revealed that I knew about the contaminated graft and emphasized that it was in their best interest to go out of their way to help my mother get somewhere safe. This sent a chill through all of them. They had never heard mention of it and probably were hoping I didn’t know.
This bought us a little time, but they got even more aggressive. They sent someone to pressure my mom into signing discharge papers. My mom asked for me to be there. They said I was in big trouble and that they were filing elder abuse charges against me. The claimed that I was withholding information from my mother but he talked over all the details in front the hospital staff. Nonetheless, I contacted yet another attorney to look at the Ohio legal code related to elder abuse. It was a total lie.
We found a place that was willing to take my mother. Again, the hospital lied to them and claimed that my mom had a bunch of money. I wish. Thankfully, they didn’t trust the hospital staff and worked with our lawyer. My mom was accepted and was about to be discharged. They again sent us a governmental form and acted like this form would prevent my mother from being discharged. I made a few calls and got the direct number of the person who signed the form. She assured me that it would prevent her discharge. I emailed this to my mother’s doctors and higher-ups at the hospital. Her papers were signed, and she was finally discharged.
My mother continued to recover and make ground at her skilled nursery facility. While she did that, I worked hard on getting everything needed for the medical malpractice lawsuit. My main motivation was getting funds needed to secure my mother’s future in light of hernia acquired disabilities. Everything was looking up and then she died.
Her death certificate blames her death on the infection from her surgery. But…
After my lawyer had reviewed all the medical files and contacted potential expert witnesses, we concluded that the likelihood of winning the case was extremely low. We decided it wasn’t worth it. My mom was dead. She didn’t need the money where she was. Emily and I were exhausted. We both spent 16-20+ additional hours away from home every week for four months. It was time to move on. So we did.
I was gutted by the death of my mother. We fought so hard to get her the medical attention she required. It was the hardest thing I've ever faced down.
Nonetheless, our family is slowly arriving at a new normal. We are excited about getting back to We Made People and a few book projects. Once we've corrected our margin issue, we’ll do it. I expect that to be by the end of this month.
A few takeaways from this experience…
Maintain some margin in your life. As a family, we were running at nearly 99% capacity when all of this happened. It would have been overwhelming even if we were at 80%, but it wouldn't have been as destructive. Our health was affected, it disrupted our kids' education and household discipline. We are just starting to recover. I saying “no” to most everything outside of my career and the needs of my church.
Hire professionals. If you ever find yourself in a situation like ours, enlist the help of a skilled lawyer and a patient care advocate from outside the hospital system. It's worth the investment. Navigating the legal and financial aspects of such situations can be confusing. It's easy to be misled and make mistakes without proper guidance.
Get all your documents in order and encourage your extended family members to do the same. Create a master password list, establish a will, and appoint an executor for your estate. If you're undergoing surgery, consider arranging a conditional medical and financial power of attorney.
Research estate planning. You need to understand this stuff. Probate sucks.
Our medical system is a mess. No surprise there. It's your responsibility to be your family member’s advocate. Social workers act as the hospital’s advocate, guiding you as best as possible. Many of them are undoubtedly good people genuinely caring for their patients. However, ultimately, their job is to free up those expensive beds and move you along, especially if you don’t have insurance. If you don’t play along, they’ll get nasty.