Family and Caregiver Schizophrenia Discussion Forum

How can we know if they are actually being treated properly?

Yesterday E called from the hospital. It was the first time we’d spoken since we had to have them taken in last Friday. The paranoia and delusions are still strong and E feels they are in hell. E gave a long, somewhat disjointed list of complaints about the place, ranging from bad food and no hot water, to saying the staff and patients alike are evil and horrible and threatening, to claiming the place is filthy, their laundry was stolen and there’s blood on the floor. E wants us to get them a lawyer, or some kind of mental health advocate, apparently under the theory that threatening legal action will get the staff to treat E better. (I guess? Sometimes it’s hard piecing together the logic.)

Since I cannot visit the hospital due to the pandemic (no visitors allowed) I cannot easily verify or dispute E’s claims. Given their history of baseless delusions I can’t help but feel skeptical about a lot of it but at the same time I am aware that the state of institutionalized mental health care is often not great, and if there is anything that can be addressed I would feel remiss in not trying to help.

So I called the staff and asked about some of E’s concerns and it turns out the hospital actually does have a problem with the hot water (apparently they won’t allow the water to get too hot as a safety issue?) and there isn’t anything that can be done. Additionally, the nurse did verify E had requested a dietary accommodation and she said she put in the request for E a few days ago but would follow up on that to be sure it was done. She also said E’s clothes were laundered and returned to E so I don’t know why E is claiming otherwise.

I am not sure what else to do. E even suggested a transfer to another facility but how do we know that would be any better? or even potentially worse? because they take their paranoia with them?

And what would a lawyer/mental health advocate be able to do for E that we can’t?

TL;DR:
E is clearly miserable in the hospital and I feel for them but I’m having trouble discerning what are miseries caused by delusions/paranoia and what are actual issues that should be addressed. If not for the pandemic we could visit to judge for ourselves but since we can’t, what do?

I’ll say what I said to my father when he complained of ‘mistreatment’ at the hospital which was actually nicer than the one I’d been to. “Play along. The best way to get out your situation is to do what they say.” His treatment will likely get no better and may be worse if lawyers or advocates are brought in. The staff are human, and generally once you start making trouble for them, they will resent it and may not be as kind to you. The squeaky wheel rarely gets grease in most institutions. Cooperation is what gets you privledges and better treatment.

The food is hospital cafeteria food. It’s okay, nothing great, but it won’t be much better anywhere else. The laundry issues are a typical inconvenience and won’t improve elsewhere, same with the water. The staff may allow you to send new clothes to the hospital and that would defuse the situation. Staff and patients are much the same everywhere and if any of them misbehaved, they would be put isolation or relieved of duty.

Frankly if the place were too nice, there’d be no motivation for anyone to leave. The blood on the floor either sounds like a delusion or a transient thing. I have a friend whose wife works in a hospital, believe me if there’s a blood spill it would get taken care of and paperwork would filed in triplicate. Beyond that what I’m hearing is discomfort, not anything even approaching a dangerous situation.

Wait for the drugs to start working, and continue to communicate with the staff and E.

1 Like

Thank you so much for taking the time to share your thoughts. I am sure you’re right about all of it. And sending clothes to the hospital is a good idea, thank you for that suggestion. I hope they will let us. Thank you also for the reminder that the staff are human and cooperation is E’s best bet. I don’t know if E will see it that way but one can hope I suppose.

My sister and I have been trying as hard as we can to balance our care and concern for E with trying not to annoy or overburden the staff with all our calls and questions. It’s hard to know where the line is. For the most part the staff have all been kind and accommodating and I just hope they don’t hang up and roll their eyes every time they get off the phone with us. The last thing I want is for E to pay the price because we irritated the staff.

I still feel I have to at least talk to an advocate so that I can honestly tell E I did. I feel pretty certain E will not let this idea go otherwise. I don’t plan to push the advocate into going to the hospital but maybe they might have some thoughts on the situation. Maybe even some personal experience with the staff there.

Thanks again. I truly value your thoughts on all this.

No problem, if you are in the US a local NAMI chapter would be a resource where you can swap stories of feedback of the condition of facilities-- pre pandemic. My understanding is there are virtual resources even during the pandemic.

A few other things to consider: how did E’s depiction of family members and the condition of your home vary from your collective realities? Delusions tend toward themes and they ‘rhyme’ even in different settings, so look for the similarities and differences. I’d also consider that staffing may be reduced during the pandemic and a skeleton crew may mean reduced service which may explain some things mentioned. Often there’s a social worker/case manager that is a main point of contact who may be a liasion or interpretor of what’s going on. It may be best to talk to that person before escalating to an advocate.

In the past, E seemed largely preoccupied with safety of family members etc, and I hear less of this voiced here which may be a change in E’s condition you may not notice, because you’re too close to it.

Talking to the local NAMI folks about the facility is another great idea, thank you!

As far as E’s depiction of family…

In the past there was a significant schism in our family and my sister and I avoided them as much as possible while E was growing up, which means there is a lot of missing overlap in our experiences. However it was easy to take E’s reports of negative experiences with the other side of the family at face value because my sister and I have also had a lot of negative experiences with them. It’s why we were disinclined to believe the family’s assertion that E has SZ, believing instead E’s perception that they were making it up for their own reasons. And so we took E in, welcoming them with open arms, delighted to get to know one another again as adults. And for almost two years everything was pretty smooth, and the more time went by without incident the more comfortable we felt in the belief that E did not have SZ or anything similar.

One of the things we’re having to come to terms with now is that our former family members can be terrible, untrustworthy people and also be correct about E’s mental health.

When it comes to the condition of our current home that the 3 of us share, almost all E’s fears over the week prior to hospitalization centered around safety: E’s, ours, and the environment. (Extremely disruptive paranoia at all times of the day and night over gas leaks, radon, CO, irradiated water, lead paint, etc). My sister and I lived here in this modern neighborhood for about 4 or 5 months prior to E’s arrival without issue, and there haven’t been any environmental concerns in the two years since then either, so E’s reality on this front is markedly different from our experiences.

I would like to believe what you suggest, that perhaps E’s condition is changing in the hospital… I really hope you are right but I am really not sure about that though. The only real improvement we’ve seen is we’re told E is sleeping more regularly and eating about 75% of their meals. The paranoia and delusions still seem as present as ever, and the staff has echoed that impression to us. E did open our call yesterday by asking how we are doing but didn’t appear to be interested in our reply and quickly moved on to their 20 minute rant.

During the terrible week prior to hospitalization I expressed many times to E that I appreciated their concern for my well being, but now, the more I consider this today… well maybe I’m being cynical but I find myself wondering if the fears about my safety and my sister’s safety were more of a way to try to get us to be as concerned and scared as E was, because we “weren’t listening/taking E seriously”. And now that they are hospitalized, it doesn’t serve them to worry about us so much and so the fears have re-centered around E’s safety.

I wish E weren’t going through this. It must feel horrible to be in constant, fear-driven fight-or-flight mode 24/7 for days on end. Unfortunately any attempts to calm E in the past were received poorly. It seemed E wanted us to panic as much as they were and anything less was seen as not listening, not believing them, not taking them seriously, or even not caring. They literally yelled at me once to “stop being reasonable!”

(What does that say about one’s position if the only way it can be maintained is by requiring unreasonability?)

Thanks for letting me blather on about this. This forum is the only understanding outlet I have right now.

3 Likes

Having worked in a few types of facilities over the years, depending on where you are, there can be an incredible variation as to the level of everything from focus on medical care to actual environmental living standards. That being said, there’s no way to tell if there is ‘proper’ care unless negligence or abuse is blatant, nor is there a way to tell if a building is up to code and maintained unless you check for yourself. As far as wondering if somebody is getting the proper attention to psychological care and treatment in a hospital stay or not, there isn’t, unless you can advocate. It entirely depends on your area, their resources in the entire facility as well as their resources allocated to that department, any state or federal funding etc.
Again, your area is going to make a lot of difference. In mine, there’s very little, hospitals will do the minimal then release, facilities will do less and standards are/were generally poor for patients.
You can call the Human Rights Officer that is associated with the particular place that your loved one is and they should be able to give you a better understanding of the patient rights in your specific area.

1 Like

I’ve had a loved one yell at me to stop making sense before. It looked more to me like an example of them appreciating a pattern of logical thinking (coming from outside of themselves, something they knew they might not be practicing at that moment) more than an agitation at a contradiction. This is a good thing. Suggests insight.

You say some great things yourself that show your own ability for compassion and empathy wanting and trying to understand your loved ones pint of view. Not all of us have that. It can take some practice. Keep it up!

Most importantly, we have to remind ourselves that we are not always engaging with a person who’s reality is as fixed as our own, where ration thinking is not as unified with their outside experiences as ours are. Most importantly, when there is ‘treatment’, it’s not a medication, it’s not a combination of medications, it’s also the work of ongoing therapy (CBT for example) in tandem that makes for successful treatment.
Don’t forget. These types of illnesses have no cure. The illness will be there. Always. It will be managed with treatment or not, and THAT is the reality that the people afflicted endure. And the people close to them who love them inevitably will also endure.

1 Like