Family and Caregiver Schizophrenia Discussion Forum

How to help my family understand the illness

What problems have you encountered with a spouse or other family member who blames your loved one with SZ for the illness and is not “on board” to help with appropriate care? Or maybe you have your own story about coming to realization that the illness was NOT the person him or herself. I am primarily interested in how you overcame the misperceptions and challenges.

This is a good topic, @hope4us.
Before I moved to assist my daughter and grandson, my son was included in all birthday and holiday celebrations and I was so disappointed that did not happen when I was away. At least he had his dad to visit. They did visit my mom for Sunday dinners or she would send them a meal. When my mom and his dad died there was no contact whatsoever from any of my family who lived where he did.
I get that there is the issue of not really knowing what to do or how but I think it was more of an out of sight out of mind situation.

Since I have been back here I was hoping it would just be a matter of time, and inviting my relatives to my house for dinner while my son was included really helped to connect him once again. However, at one time I was going to pick my son up because he called and wanted to come and visit ( he speaks to no one hardly or goes out of his apt and talks about being lonely :disappointed:) and my brother asked me where I was going. When I told him he said “Why?” In a very condescending dismissive manner. I was shocked and even though it really angered me I tried to stay calm and said, “Remember, it is a disability he has and he deals with much better than you would if you had this.” It would be better to have said you or I but it was a quick response.

Now my brother invites my son and is very respectful and empathetic.

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Here’s the story of a time where my brother finally seemed to ‘get’ my illness. Highly functioning people are often victims of their own success, and family members or partners who haven’t seen us at our worst don’t understand what you’ve been through when you say you’re having trouble. They have to see it to believe it.

I was traveling in Europe in a small country with one of my brothers. I’ve studied a few languages, and while my conversational skills are nonexistent, my retention of vocabulary and my ‘ear’ is pretty good so I kinda understand what people are saying or at least pretend I do. My brother’s language skills aren’t great and he qualifies as an ‘ugly American’ in some contexts. At the time of our visit my impression was Americans weren’t held in high regard in this country. People were whistling in train stations as we walked past similar to the booing style behavior you see at international soccer matches. I was yelled at in a local supermarket by an attendant who shouted names of historic and political figures at me and berating me as best I could tell because as an American I shouldn’t known them. (Some I did, some not)

Whether any of this was true or not, I don’t know, but it seemed plausible and real to me. My brother blustering around and playing the ugly American while I was trying to blend in or camouflage myself as from the UK or Canada didn’t help my anxiety levels at all. Couple this with getting lost while my brother was doing laundry, and unsure I’d find him again and I was getting increasingly freaked out and paranoid.

So when we got on an overnight train to go to a larger country, I was telling him how freaked out I was and how I might have to take a break and up my medication a bit and maybe I should just stay in our room for a day or so, he unloaded on me and said it was all bullshit and how he was trying to show me around Europe and I was no fun at all, and brought up all this stuff about how I lied to him and the whole family when I was in college and covering up for my poor school work and on and on and all the while he was trying to help me. On top on that he seemed to think my hospitalization was just a reaction to a relationship gone wrong and he thought it wasn’t a big deal and maybe I was misdiagnosed etc.

So I said, hey look I was sick and this was a long time ago and why are bringing this up now, and don’t you see how your relentlessly calling me and asking how school was going and telling me what to do and forcing me through a graduation ceremony when I knew I’d failed required classes added to my misery and stress along with my illness. And then a single tear went down my cheek and one went down his, and I think he finally ‘got’ it. So I said, we’ll see how it goes when we get off the train, maybe it’s just the country we were in. I know better how to take care of myself and how I’m doing than you do, and in the morning we were in another country and things got better and steadily improved for the rest of the trip and we had a fairly decent time.

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yea, let the SZ live with them for a couple weeks lol

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I’m glad you asked this. Grateful even right now, as I’ve been feeling a bit at a loss myself recently, and haven’t quite been sure how to vocalize my question or even what kind of responses I was looking for. Though mine has a slightly different spin…
Historically I’ve never before reached out to my MI’s family for support. It was always my understanding that they HAD an understanding that my partner is ‘sick’. Especially since it was his close sibling that ‘talked’ with me years ago when my partner and I were first getting involved, before even I had even realized or decided we were getting involved, and pretty much laid it out for me. “My brother doesn’t think the same way a lot of people do or you or I might. He has a brain disease. He’s going to do things (went into amazingly accurate description with details) and there’s also a lot to love about him (more very accurate details). There is no official diagnosis, as he refuses any kind of help or treatment… But it’s schizophrenia. There. I said it.” I remember this conversation vividly, almost word for word, to this day… Over the first few years we all maintained a fairly active involved relationship, as my partner’s sibling is his closest friend. His sibling and I followed similar professions and dialogued fairly easily. I thought the rest of the family was fairly in-tune, as there has been some family discussion about finding my partner semi-short term residency in an institution as well as his father stood aside with me casually at our second winter holiday and said “I know that you love him. You don’t have to suffer alone”.
My partner continues to maintain his relationship closely with his sibling, but the years separated me from them, though I try to make events, we still do holidays.
My partner is doing exceptionally well these days, far cry from the “constant crisis” days, and what most people see is a functional productive healthy, though sometimes slightly odd, person. They don’t see the “episodes” of delusions and torment that are still prevalent. In fact, apparently they get to hear the confabulations that justify the actions of those delusions, and usually it’s got some way of slandering me.
It’s as if the family sees ‘healthy’ and thinks ‘cured’. And now blames ME. How can intelligent educated persons who’ve LIVED with it and KNOW the disease suddenly think, “Oh. He’s cured. It must be her.”… It’s difficult to wrap my head around. As I said I’ve never asked for support before from them, but when I reached out and asked in a situation that was frighteningly unsafe, just for them to call and talk to him (my partner had an episode and was out in four degree weather for hours. Had been screaming earlier about demons in the house I think) the response I got was that it must have been my fault? I’d been under the impression that they understood confabulation, the skewed facts or otherwise fabrications to validate the reality of delusions… This has been tough for me. It’s like suddenly, the only people out there that I had thought were aware, are gone, and not just gone but somehow making his sickness out to be MY fault.

I find this timely, because I was thinking about posting about when caregivers feel blame whether or not it was intentional on the ‘blamers’ part. Here’s the context: I was recently visiting my mother who’s in her late eighties. All her children were there, and over the years we’ve been slowly taking over caregiving responsibilities for my brother who has Bipolar Disorder and helping out with caregiving for my father who has dementia.

I had brought Dr. Amador’s book and was explaining the LEAP strategy to my sister who’s now the primary caregiver. My role is consulting, wingman, sounding board and good (or different) cop. My mother heard some of this and immediately felt blamed that she had been doing the wrong things all these years.

This isn’t a new thing, she’s thought that all I did in therapy is blame her and the family for their treatment of me. This is a woman who saw my first therapist for several months and came to me and said is this all it is? She doesn’t seem to grasp that therapy is largely about forgiving people and yourself for past mistakes and moving on with new ways to look at and solve problems. I explained the book presented research by a doctor who had a brother who had SZ and how he came to realize that some of his strategies in dealing with his disease were ineffective and counterproductive. As I explained things a bit more, I continually had to reinforce that Dr. Amador wasn’t blaming himself or her or any caregiver, just providing new information on approaches that might be more effective.

We went to church the next day and afterwards, I told her therapy is a bit like communion— each time we reflect on things we’ve done or left undone and are forgiven and go forth and try to do better. I still think her default position is to feel blame, however. Which may be why she goes to church more often than I do. My joke about Christianity is it’s a religion for amnesiacs (or anosognosiacs), they have the need to be continually reminded of the good news.

I’m joking of course, but this speaks to a mentality of people who think you go to a doctor and take pills for a while and you seem better to them, so they think you are cured. My brother in the story above thought that way and it took those events for it to sink in, despite having another brother who’s been ill for years. Or the nurses when I give blood who always ask about my medication, if I got ‘better’ and would I continue to take it. These are supposedly trained health professionals. I don’t give blood any more, because I tired of this routine.

Sadly the world is full of blamers and people expecting to be blamed. I don’t know of a solution other than trying to get through to them both by emphatically telling stories and hoping eventually hitting on a logical or emotional argument that breaks through preconceived notions.

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@Wisdom two things come to mind after reading your post. Even though I KNOW better, I find I slip into thinking that my loved one IS better and that life is going to be fairly rosy in the near future. Well, he IS functioning better, but he’s not BETTER, you know? It’s a reality I have to frequently remind myself of. I have goals for him but I know these must be HIS goals and not mine pre-imposed on him, especially since he is less vocal about his desires for the future. So…(my second thought), this brings to mind the importance of using the LEAP strategy to first LISTEN (I ASK for HIS thoughts, feelings and ideas), then EMPATHIZE (example: I understand how hard it must be to think about contacting an old friend), followed by finding things we AGREE on, then to PARTNER with him on some action or next step. I swear this works, but you have to be diligent, have a ton of patience, and adapt for your own situation. And each person/situation is different. If your goal is to get your partner to take medication, might it be great to offer your partner a pill (even though “he is not sick”) that would soften the demons/voices? But you have to go through the whole LEAP process, over and over again, build on the trust as you gain it, and be willing to try varying approaches, if needed. And to realize that a person’s “insight” can come and go.

As far as family goes, there is a one page article that might be useful explaining “anasognosia” as well as explaining SMIs themselves on the NAMI.org website.