Things that Seem to Work Well for DX'd and Family

Family
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I wanted to make a thread specifically about things we have done that seem to work well enough. This isn’t really a thread for targeted, individual advice or questions, as much as I’d like for it to be about things we can actually do ourselves. So much of treatment and management of disorders relies on the DX’d themselves being willing and participating. There’s a lot of frustration related to waiting, or trying to ‘convince’ the DX’d to take action for their own well being.
So, I think it would be good to write up some things that get positive, helpful results, without risk of backlash, enabling, coddling, or being overbearing on the DX’d.

I’ll try to start with some sort of structure that hopefully can be carried forward in future posts, if anyone cares to contribute.

  1. The Support System
    Right now, my family has a pretty good support system set up. It’s not ideal, but it seems to work pretty well.
    A. Our Mom maintains custodianship over his disability benefits, manages insurance, makes sure bills are paid, handles any official paperwork, and stays on standby for emergencies. It seems like a short list, but she does about 90% of the important stuff.
    B. I provide calm temper listening (especially when delusions are relatively shocking), “reality check” in a respectful manner, assurance regarding treatment and medication, and a secondary safe place for him to hang out when his own apartment feels too uncomfortable / gets boring. I am the primary person who swoops in on short notice when he starts really struggling with symptoms. Usually, we just end up hanging out at my apartment and eating pizza and playing video games, or he just goes straight for a nap. But we do get around to talking about what’s bothering him and that’s generally enough to help him cope while his mood / mind gets back under control again.
    C. Our sister provides a supplemental safe place for him to hang. The energy level is a lot higher at her place, what with a house full of moody toddlers. But, being around kids helps him to focus on the importance of social interaction, kindness and family. She also provides a “reality check” when needed.

My role and that of each family member has seemed to evolve to be more targeted over the past 3 or so years since my brother’s diagnosis. We were no good at all for him, or for each other for a long time. It takes trust to let another family member handle finances on their own, and even more trust to let another family member have candid conversations about symptoms without becoming nosy.

  1. The Support System to the Support System
    Yeah, each of us ‘care givers’ has our own support system. I have my girlfriend, my mom, and my sister. My mom and sister each have each other and their own spouses to lean on. Our support systems involve a lot of patience and understanding. To let us rush out of the house in the middle of the night to answer a call for help / relief from boredom / be taken back home to chill. They also make sure the house is in order when helping my brother deal becomes a work-night or all weekend long adventure.
    If my girlfriend didn’t handle laundry and meal prep while I was busy getting my brother situated and talking to him about his symptoms, I’d wear dirty clothes all the time and eat fast food more than anything.
    If you can reach out for help with things, even the mundane stuff, do it. Chances are, like me, you need it more than you realize.

  2. Rational Support isn’t Always ‘Sagely Advice’ and It’s Never Emotionally Charged
    If stress starts formulating verbal responses for you, rather than intellect or empathy, take the time to cool off.
    If something the diagnosed person says illicits fear, panic, anger or despair, take the time to cool off.
    THEY are the one experiencing thoughts and emotions that make zero sense. YOU won’t help by getting spun up into a frenzy.
    I mean,
    You don’t have to have all the answers. You don’t even have to have an intelligent or clever response.
    When the diagnosed person tells you something that is confusing, difficult to understand or frustrating, it’s okay to say so. A person with a diagnosis isn’t spontaneously regressed into a baby, nor are they a fragile teacup. When they confuse you with a seemingly irrational declaration, tell them you don’t understand and it sounds concerning / unlikely / weird. Don’t burst into tears, start making demands of behavior, or threaten backlash in an over-the-top manner. Just say so in the same tone you would tell anyone that you don’t understand what they mean / don’t like what they’re telling you.
    When I first started coming right out and saying that I didn’t understand some things my brother would tell me, his response was to shrug or let it slide.
    When he would have an episode and say something really zany, I started telling him it didn’t make sense to me and didn’t seem likely to be true. His response was sometimes genuine surprise that I didn’t agree with his opinion, or declaration. The more calm I was about it, the more impact my words would have. But, it didn’t set off any kind of ticking time bomb.
    Don’t get me wrong, it doesn’t make things profoundly easier or harder for my brother, but it makes the situation less stressful for me. In the effort of trying to headoff rants about aliens and robots, it seems to work better than trying to formulate a “perfect response”, or becoming emotionally over-charged.

So, those are a few things that Team Wreklus is doing which seem to work.
I have absolutely zero medical or psychological training, and it is totally possible that I’m way off with some of the things listed out here. Feel free to disagree / expand / counter-point.
Please add to the discussion with your own system / what works or what doesn’t.

4 Likes
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Hi-
I like your positive approach - I don’t have anything to add, but appreciate your sharing.

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Wow your family are doing AMAZING.

My family is definitely supportive of my son - his brother has been great at taking him to do things like football and running; his older sister takes him out to dinner occasionally and is very warm with him; his father took a long time to accept the DX but has now has started to play tennis with him, waits outside while he plays football on his own and is going to do a cooking course with him; his younger sister is too bound up with her own life at the moment, hopefully she will kick in later. His grandparents also help - having my son over and he cooks dinner with his grandmother and then family members come and eat dinner together.

All these family inputs are really helpful to my son and provide some interest and meaning in his life. He doesn’t have the motivation to initiate or do things on his own but he will do things with other people.

But it still feels like I - the mother - do all the essential: manage all doctors and medication and appointments, think about and organize how to help and energize my son to get some sort of meaningful life for himself, and monitor/hang out with him when no one else is - which is most of the time. I guess that is just how it is.

I wonder how your whole family got to be so involved.

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Thanks for the positivity!
I’m grateful for the likewise input, @francesl

I think that your situation as the mother, doing most of the formal work is sort of a natural circumstance. Your instinct to be heavily involved, emotionally and rationally, is necessary. The DX’d has evolving needs, sometimes for deeper emotional / rational involvement, and sometimes more of a distraction / sense of “normalcy”.
Your family’s variety of input and interaction seems pretty ideal. Kudos on being able to allow a cohesive level of different relationships. I know that it can be difficult, especially when it sometimes feels like the wrong words, or the wrong kind of interaction could be harmful.

I think my family developed this kind of dynamic… Dynamically…
Haha!
My mother’s drive to be heavily invested in my brother’s best interest.
My position as a big brother (lead by example, be a good confidant, generate safety and dependability).
My sister’s developing motherly instinct (forming family, clutivating empathy and compassion in her home).
They’ve all kind of happened naturally. We just tune our involvement based on necessity as well as what is natrual to ourselves.
My father likewise has had a hard time acknowledging my brother’s DX, and finding his comfortable level of involvement.
I plan to speak with my dad about the importance of family and emotional / rational investment in providing each other support and comfort. I think this is inherently more difficult for fathers.