I am not a medical professional. This is not medical advice. My experience is anecdotal and not direct evidence of any outcome.
Mom has now been in assisted living (AL) for almost four years. When she went to AL she was 68, moving without aids, and we were beginning to see the onset of tardive dyskinesia. Tardive manifests itself as an involuntary tremor in Mom’s movements. It is most noticeable in her mouth (her lip quivers), her hands (a constant shake), and her body is becoming increasingly more rigid. For instance, her one hand has two fingers completely seized in a closed position. Everyday tasks like feeding herself, going to the bathroom, and getting dressed are no longer chores, but mountains.
Tardive is directly traceable to years of taking anti-psychotics that deprive her brain of dopamine. Without the medication, Mom is prone to psychotic episodes. These episodes, as it was explained to me, are hard on her brain. The more she has, the longer they last, the harder it will be to get her back to a baseline.
A botched injection and we’re over a cliff.
Because Mom has a history of medication non-compliance, which would lead to months long episodes, the decision was made to give her an injectable anti-psychotic. It is an intramuscular injection that she receives once a month in her arm. She has received this injection for close to ten years without incident.
In July, the nurse administering her injection missed Mom’s shoulder muscle and instead the injection went into the fatty portion of Mom’s arm. This led to Mom’s arm becoming swollen (talking 2-3 times the size of normal), an onset of cellulitis, and the anti-psychotic did not absorb into Mom’s system the way it was intended. Couple this with a urinary tract infection, and we’ve got all of the ingredients for a complete psychotic episode.
By the end of August Mom was descending into manic behavior, roaming the halls of the facility at all hours of the night. Increasingly unsteady on her feet, Mom took a tumble and broke her good arm.
Mom now has two disabled arms. Those tasks that were mountains before – they’re painful to endure at this point.
Paranoia and anger has set in, and to some extent reasonably so. She is angry about a lot of things. She is angered about the cellulitis. She is angered about the botched injection. She is angry she doesn’t have the mobility she used to have, and she wants us to know about it.
She is also convinced there are hidden cameras throughout her apartment and everything is being recorded as a part of an investigation. Everything is striking her as suspicious. I have found myself trying to calm her down which is responded to with, “Chris, you need to smile for the cameras!”
By the end of the first week of September everyone is exhausted. Mom currently needs a higher level of care than what AL can provide. Frustrated with the folks at AL, Mom called Life Alert, one of those fall pendant systems, which I had programmed to call the front desk of the facility, and had them change the outbound call number from the facility to 9-1-1. When I finally sync up with the folks at AL, I am told she has used the pendant, having the squad dispatched to the facility three times in 24-hours, once at 1:30AM. When the squad entered her apartment, Mom requested a glass of ice water. I am told the local station chief is mad at AL, but we can’t control mom’s day to day actions, nor can we physically restrain her if she is not a threat to herself or others.
A waste of public resources? Yes. Acting out? Yes.
But this isn’t the first time she has done this. Mom was an innovator in getting third-parties involved with her problems. Most famously, she managed to get Wow! to dispatch cable repair men to help her troubleshoot Facebook, Gmail, problems with her printer, you name it… for years. When they finally put a stop to it, she managed to get the Geek Squad to come out and managed to avoid paying them for their time for I don’t even know how long. After that, she turned to locksmiths, one of which came to her house four times in a week, each time charging her for changing her locks.
Before being moved to AL, I came to know a good number of police officers on the East Side of Columbus who knew my Mom, most commonly called regarding problems with light bulbs or door locks.
It’s a mess, but Mom is lucky.
Our current healthcare system does not contemplate care like what Mom needs. We have been private paying for her care from inherited money from her dad and brothers. Without which, we would have to hope that she would have a qualifying condition for Medicaid that would hopefully pick up her living expenses and skilled nursing expenses.
Currently, Mom’s monthly expenses ring in close to $6,000 a month and this is cheap! Dad, who is another story, was recently placed in skilled nursing hospice care and the monthly charge was $12,000 per month. Because Dad was on hospice and not receiving any therapy or rehab, this was 100% private pay!
Mom’s STRS pension from 23-years of teaching is around $2,200 per month. Mom receives around $160 per month in social security from years working at Target and Meijer during school breaks.
Thankfully some of Mom’s medications are now more affordable with grants from private non-profits. Without these grants, her medication to ease the effects of tardive would be thousands per month. Until recently, her injectable anti-psychotic was about $1,200 per month.
A typical person suffering from schizophrenia does not receive the level of care that Mom receives. They most commonly become homeless, are victims of crime, and die early in life. Family becomes alienated as the episodes are hard to endure for everyone.
This isn’t pretty. This is unvarnished reality of what I have experienced taking care of my mother who is mentally ill. Is she a typical case? Probably not, but her case is one that highlights a number of shortfalls in our current healthcare system.