Mom went off the rails sometime after Mother’s Day, which was on May 9 this year. We didn’t pinpoint the reasons for it until much later.
She seemed pretty much herself on Mother’s Day. Not rational, but not so extreme that you couldn’t deflect or distract her when she started going down the paranoia road or wanted to leave my sister’s house and “walk home” or to go find my father who was nowhere in the vicinity.
She was starting to show some signs of mood swings by the following Saturday, May 15. She was much more volatile and she couldn’t be easily distracted.
By Thursday May 20, she officially went totally Off The Rails. She had managed to get out of the apartment at least three times in the week, even getting a quarter of a mile away before someone in the apartment complex recognized her and called the police.
She left the apartment again, with my father’s knowledge this time. He “shadowed” her down three flights of stairs, which she shouldn’t be taking anyway, all the way down to the basement level, where she fell over the last step scraping her arm. My father then took her to my sister’s house, instead of bringing her to a walk-in clinic close to where they live so someone could take a look at her. By the time he arrived at my sister’s, the walk-in had closed and off to the ER they went. What choice was there? She’s 90 years old. She needed to be checked out.
It wasn’t a bad injury, fortunately. Unfortunately, this is when her paranoia and extreme mood swings really escalated. She moaned. Cried. Was convinced my dad would be put in jail. Who knows why? She was so agitated that the chaplain was sent to calm her down. But because she came there for a physical injury and not her mental state, the hospital didn’t keep her for observation. They released her.
And everything got worse.
She became more and more agitated from Thursday onwards. She put every item of clothing she owned into bags and insisted that she was taking them “home.” My father, who has no skills at dissimulation at all, kept telling her that “this IS your home,” which just agitated her further.
On Saturday May 29 of Memorial Day weekend a locksmith was called to install a bolt so that mom couldn’t get out and wander since she kept slipping out without my father noticing. This was the worst day yet with her. There were too many people in the apartment: Dad, my sister, her husband, me and then the locksmith. Mom became more and more agitated and nothing would calm her. She refused to take a walk, which does usually settle her a bit, and started pacing, pacing, pacing. When I arrived at the house mom looked at me with pure venom. If she had had anything sharp in her hands at that moment I’m not sure what she would have done. Stabbed me? Maybe.
It’s unsettling to have your mother look at you that way, especially when it was totally unexpected. I was blindsided.
She kept wanting to leave. To go home. When my sister and I wouldn’t let her leave she got more and more nasty. Then she got onto missing children, convinced that she had been taking care of a baby and she gave the baby to a stranger, who turned into a kidnapper in her mind. She became convinced that the police were coming to arrest her and take her to jail for her crimes.
Her mental anguish that resulted from these delusions was painful to watch because, to her, this was totally true. There was no deception that could distract her, like telling her the mother of the children had picked them up or that they were at school. She just wouldn’t let go of it.
What to do?
I was at my wits end and really, really, didn’t know what to do. My other sister, who lives out of state, called and she contacted the on-call doctor, whom I then spoke with and after describing my mother’s behavior she prescribed Trazedone which is for anxiety and depression. This was supposed to calm her, but had very little effect. It didn’t even make her tired enough to slow her down.
We got through Memorial Day weekend, somehow.
It was getting so bad that we scheduled an emergency doctor’s appointment for June 1 with the Head of Geriatrics the Tuesday after Memorial Day. I was responsible for managing this, but didn’t think I’d get her into a car and to an appointment so we fought to get a virtual appointment. Dad went out when I arrived, of course, and mom was melancholy and droopy. I tried to get her on the virtual call, but she wandered off and my dad came home almost as it started. She became agitated with dad again because she was angry that he had left “without telling her” which he of course had, dozens of times.
I described the escalation of mom’s behavior to the doctor who ordered her taken off of the Trazadone and Mirtazapine and prescribed Seroquel instead, which is a medication used for schizophrenia and bi-polar disorder. It was that or have her committed to a psych ward for observation. I didn’t object to that idea in theory, but I knew we would have to have a family summit to come to an agreement on it. My personal feeling was, and still is, that she needed a number of days of observation by people who know what to look for to adjust her medications and get her back to her baseline behavior which is manageable, but the downside would be her lingering resentment and an uptick in her paranoia.
In the often interrupted conversation with the doctor, mom kept popping in and out of the room asking after the non-existent children, he asked about triggers and I really didn’t know how to answer that question. It didn’t occur to me at the time, but after considering it later came to the conclusion that the trigger was when dad left the apartment. Mom lasted about 30 minutes after dad’s departure before going to pieces and then over the edge. She was convinced he didn’t love her anymore. That he had abandoned her and was never coming back. She cried. And cried. And cried. Then she’d turn on a dime and get angry. Nasty angry. It went beyond depression or anxiety. It was obsessive. Extreme. This was not something we’d seen before and there was no calming her.
We knew about the paranoia and that she had delusions that her parents were alive and hallucinations that there were people in the house and we knew how to deal with that. Well, my sisters and I did. We just hadn’t seen these extremes in her mood before and didn’t have a frame of reference for this behavior. It scared us, frankly, because we didn’t have the emotional or mental toolkit to deal with it. It was just too sudden. Dad, who can’t even deal with mom when she is less volatile, really couldn’t cope.
Solutions. Of a sort.
It was WEEKS before we discovered it was another medication that mom had been prescribed for depression and appetite stimulation was the root cause of the problem. Mirtazapine was the culprit and when she stopped taking it on June 1, she quickly went back to her baseline, which while difficult at times, is at least manageable.
My sister discovered that prescription when she started doing some digging via MyChart. Mom was prescribed mirtazapine on May 11 although we can’t be sure when she started taking it since dad picks up prescriptions and administers them. However it couldn’t have been long after and we know that by Saturday, May 15 she was very agitated.
It is astonishing what a tiny pill at such a tiny dosage could do to her and that, apparently, her regular doctor had no idea about the possible side effects of mirtazapine, which include risk of suicide. Mom at one point had threatened to throw herself out the window if she couldn’t leave to go look for her mother.
The cautions about this drug say that suicidal thoughts, anger and aggression are rare side effects, but the boards where people report their reactions to this drug tell a different story. Mom can’t begin to articulate her feelings. She can only react to them and we can only observe and make some calculated guesses.
It doesn’t take a genius to LOOK IT UP! Jesus, even I can look it up. It’s not hard. The irony is that her doctor, a resident doing his rotation through geriatrics, prescribed it AGAIN after an in-person visit on June 24 when my sister mentioned mom’s weight loss. We had to demand he remove it and make a note that she not be prescribed it again.
This is a journey we never wanted to take. Who would? But it is a journey we must take because there is no choice. We are still learning how to be my mother’s patient advocate. Still adjusting. Still waiting with some trepidation for the next phase of this disease that is sure to come.
