(Please consider making a donation at my mom’s GoFundMe page: https://www.gofundme.com/ym939shg)
This week marks a month since my mom moved in with me. I knew it’d be challenging. In actuality, it has been damn near overwhelming. On top of being her caretaker seven days a week, I also play the role of counselor, social worker, case manager, advocate and her main peer and family support person. I’ve spent countless hours just being on the phone looking for doctors and dealing with our infamous, impersonal government bureaucracy in trying to get her Medi-Cal case transferred. After some initial problems with finding a clinic or doctor (Many are not accepting new patients, due to the increase in insured people from Obamacare.), I was finally able to find a doctor by searching the Internet. That was a crapshoot because there is no website that lists doctors that accept straight Medi-Cal. And even though a site may state the clinic or doctor accepts it, you don’t actually find out whether or not they accept it until you call.
Interpersonally, challenges abound also. I’ve been trying to bond and build trust with my mom. That has been made exceedingly difficult, though, due to her hallucinations and delusions. These affect her moods, comprehension ability, level of social engagement and just her ability to have a conversation with me. In my estimation, she hears voices around 80% of the time.
As is common with people who have a serious mental illness and hear voices, the voices can vary in the emotions and associations they arouse. Put simply, there are “good” voices and “bad” voices. For my mom, they take a religious form. There are “godly” voices and “evil” voices. The godly voices look out for her and protect her, she says. They can be biblical figures/prophets, while the evil voices can be evil spirits or witches. The evil voices torment my mom by telling her various things like they want to kill her, that she is getting ugly and old and even sexual things. Some days, my mother physically struggles with fatigue, weakness and/or nausea. On days like these, she says the evil spirits and witches are to blame. The voices tell her that they made her sick by spoiling her food or drink and entering her body.
When the evil voices are afflicting her, the godly voices do battle with them. They tell her what to say or do to cast the evil voices/spirits away or vanquish them. At more acute times, this can take a quite animated, even disconcerting form, with my mom talking loudly, sometimes swearing, while walking into different rooms and opening doors around the house. “Get out! Get out!” she will say. She calls this “spiritual warfare.” Some nights, this limits her sleeping to just four or five hours.
When she is agitated, I do my best to assure her and calm her down. I’ll pray with her or sage her room and the house. Though sometimes, I’ll just keep an eye on her and won’t engage with her verbally, because I’m busy or not in the mood to deal or I’m just trying to recharge with sleep. If she was more physically capable, I’d be concerned about her wandering outside and causing problems with neighbors, as she has done in the past. For now, that hasn’t been a problem, fortunately.
When hallucinating and when the evil voices aren’t present, she is listening to and conversing with the godly voices. From what I can tell, my mom enjoys engaging with them. It provides euphoria and self-worth. How could it not, speaking with an anointed voice sent by God? This is pretty typical, according to the literature on serious mental illness (SMI). People who hear voices often times willingly engage and interact with them. It can get to the point to where the person will ask or take the advice of the voices around mundane things, like what to buy or eat.
In Walmart recently, this led to a quarrel between my mom and I. They didn’t have her size in the pants she liked. The good voices, she said, told her that her size would be there the next day. Tired and exasperated, I told her that we didn’t have time to drive across town the next day, despite her insistence. As it is, she often wants to return things days after buying them because they end up “fitting funny” or she doesn’t remember buying them. Just this past week, it took me three days to convince my mom why choosing a Medi-Cal managed network plan was the better choice compared to straight Medi-Cal. The godly voices were telling her that Medi-Cal was the safer bet and better option, despite my best and repeated attempts to explain that the network gave us more options and that it was a bit of a moot point anyways, because she will be on Medicare in a couple of months when she turns 65.
It’s not my mom’s fault she behaves this way or believes the things she does. The illness has progressed, due to her not receiving successful treatment. She hasn’t always heard voices, for example. While she has been exhibiting a SMI for more than ten years, she started hearing voices around five years ago. I understand the road to recovery is long and hard, regardless. But I’m already somewhat questioning my decision and fortitude in taking her in. The books I’ve read on living and helping someone with a SMI give good advice, but are geared towards wealthy people. At least I like telling myself that anyways. Take time off from caretaking and seek adequate self-care? Ha! I’ll just pay for some help with my dwindling savings! Do my best to see and prevent a potential psychotic episode? Ha! The person the author has in mind must already be in treatment and taking meds. How nice it must be to afford a good psychiatrist!
I’m determined to see it through, though. What I’m going through pales in comparison to what my mom has had to live with. Thinking her family abandoned her and such. To heck with the mental healthcare system, I ultimately conclude. Tomorrow is another day to live, breathe and try and enjoy, for both of us.
benevolent neglect 