Caregivers, and Stigma

Family
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I had an experience yesterday that brought me back to ruminating om my mishaps and frustrations while trying to care for my brother Billy.

I was at a festival of cultures yesterday that takes place in the park right down the street. The weather was nice, and there were many people in attendance. I knew a lot of people there and I was even pressed into MC duties for a while. It really was nice and also a reminder that I need to get out more.

There was a woman there that had a teenage/young adult in tow that was obviously profoundly intellectually challenged. The girl clung to the woman, who sheltered her in her arms, and kept her face against the woman. She alternated sucking one thumb and then another. I got a glimpse of here eyes (she glanced at me for a second) and what I saw was frightening.

I was overcome with shock and pity. And also guilt; it made me feel overwhelming guilt and remorse at my utter failure to do the best things for Billy. I stopped taking Billy out in public decades ago. He always wanted me to take him to a restaurant for lunch, which I wouldn’t do; he always without fail made a scene and embarrassed me. He was rude, abusive towards the staff, bossy and uncooperative,as well as filthy, smelly, and disgusting; a dog would have blushed watching him eat! Even one hour with him left me exhausted for days, and I was a young adult at the time.

And here’s this woman taking her daughter out in public and smiling through it! I felt so low. To be fair to me, it would have been impossible to take Billy to this festival. There’s no way he could have controlled his conduct through the music, parades, and especially the young women there in costume. No doubt he would have been fully out of control. But still, I felt awful.

People always expected me, a “big shot”, to be able to magically fix my brother. Why don’t you make him bathe and put on clean clothes, big shot? Why don’t you teach him some table manners, big shot? Why don’t you teach him to say please and thank you, big shot? It was written all over their faces.

I just couldn’t take him anywhere. I tried teach him basic manners but we all know how that went. I tried to bribe him (typically with pizza) to bathe and dress in clean clothes. No dice but he wanted the pizza anyway.

I think only people that have experience with mentally ill loved ones can relate to this. Even psychiatrists and social workers that I have shared this with don’t believe it. After my experience I think they all have their heads way up their dark tunnels. They never helped at all.

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I’m sorry you are having trouble moving beyond the anger, guilt and grief regarding your brother. I hope that eventually you get there. His disorder was no one’s fault.

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My BIL and SIL suffered badly from stigma when it came to taking their nonverbal autistic son out in public. They would tell themselves a story about what bad thing would happen and do anything to prevent the bad thing. We realized that they were embarrassed by his behaviors and the bad thing they feared was a public “meltdown”. We were at a ren faire together and their son wanted to have a turn on those hydraulic rope things that bounce you up into the air. BIL wanted to let him try, SIL shut the issue down saying what happens if he gets upset? That was always the concern that shut them down “what if” “what if”. If they had taken him out in public maybe all of them could have learned how to function in difficult situations.

Sure, people are judgy all the time, some of us can handle it and others cannot.

I know a lot of the people that dealt with Mike thought I should have been on their side when there were problems. I wasn’t there to discipline and help who was right, I was there to get us all through the situation of the moment without it escalating.

People have no idea what we are dealing with every day. We just work through it, learn and move on.

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Thanks so much. Thanks for sharing, it helps.

I hope that in the future we can do better. I hope that we can learn from our mistakes in the past.

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Thank you for sharing this I can relate,
There was a point a few years back when my brother was homeless for almost a year,
The guilt the shame weighs heavy on me still.
I didn’t cause him to be homeless but I also couldn’t get him housed it feels like epic failure.

Now my sibling is housed but super isolated he lives in my dad’s house and my dad cannot even live with him even though they see each other several times a week at this point there would never be a time for my dad to move back into his own house.
Even though my brother and I talk multiple times a day throughout the week none of them are connecting conversations if that makes sense.

In the past relatives were in support or at least my brother had family around not anymore.
I feel guilt over his isolation as well.
When I see stories of schizophrenics and listen to podcasts of people who are managing and doing well with the disease or families that are helping to manage I always wonder what could we have done differently what can we do differently.
Especially lately I’m feeling at such a loss
I’m thankful my brother’s housed but he’s pretty isolated I believe he’s having a lot more of the paranoid thoughts that people are out to get him, he’s dealing with that by himself severe PTSD and I can’t seem to get a connection to even try to ask him if he would be willing to do therapy or something? I know he will refuse meds because he does have anasognosia.
And it’s so true anyone that is not dealt with a severe mental illness really can’t understand that it’s not just a matter of helping somebody get bathed and cleaned up it’s so beyond!

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Our limitation to change their journey is another tragedy we have to live with, isn’t it? I always wonder what would have happened if we had recognized the situation much earlier. Would earlier intervention have made a difference in the outcome?

I think the advice of “releasing them to their journey” helped me the most. I eventually came to realize that Mike did enjoy his life - even though it looked extremely limited to me and was so different from the promise of his younger days.

While we can be pressured to always beat the hope drum, during the cancer years I was on a UK bowel cancer forum where the family members are strongly discouraged from asking or saying anything that doesn’t reek of hope and celebration. If a family member posts something regarding negative feelings or lack of hope, they are quickly referred to the “family” section which is a closed area. Some of them felt they were being punished and stuck in a corner. Those people didn’t have all of our experience in keeping a game face on around the person who is dealing with serious struggles.

What they needed to be able to say was “HEY, I realize this is a no-win situation, how am I supposed to cope?” They needed the acknowledgment that their situation was not winnable, they didn’t need another battering with the hope stick. The cancer forum even had another locked section tucked away for those going through the final weeks of life with their family members.

The reality is that some of our family members cannot be helped when it comes to changing the course of their scz symptoms. Some of them will grow worse and worse and the most severely afflicted end up in forensic prisons for the rest of their lives. Many others, who are non-violent, grow worse and worse and live with family members or are housed somewhere by family members. Everyone won’t stabilize and nothing could have changed their trajectory.

So, so beyond.

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Even in retrospect I have a hard time seeing how I could have made his life much better than it was. He was very stubborn and uncooperative, and even when I was in my 30s I didn’t have the strength to deal with his constant crises and demands. No matter what I tried to do for him, he would manage to sabotage it somehow.

This is hard to understand unless you actually try to do it. Billy was a two year old emotionally, in a big stinky man’s body. Words cannot describe how repulsive he was. You had to experience it.

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This is such a hard position to be in. For years people have told me t o detach, protect yourself, set boundaries. Then I hear success stories and my mind wonders what could I/should I have changed. Its an on going battle for me. Then i realize, I really did what i could, offered help, enabled probably too much, and literally was making myself ill inside more often than not. I feel like i dont know the person my son has become. He certainly doesnt show any emotion towards me, nothing, but blaming me and entitlement, and aggression. I actually fear his thought pattern toward me that he voices. I feel your pain and doubts.

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Hello. Another sibling here.

You had every right to be upset about your brother’s stubborn refusal to cooperate when you tried to help him. As for the revulsion over his presentation and actions, that IS very had to get over, for sure. My brother in the past (he’s now 60-plus) was an extraordinary mess on every level, for years and years. I remember the hot buzzing sound or feeling I would get in my head, in my ears, all over me really, the first couple times I took him to a public place to eat. It felt like an out-of-body experience, I was so ashamed of him and distraught. What saved my relationship with him though is how one time after we were seated and waiting for our fast food, he saw me looking at him with what I am sure was a terrible expression and said, “I’m just an animal, right?” And I felt so sad (because he was right) and I stumbled to say something kind back to him and he replied, “It’s okay, I understand.” I guess had we not had that awkward moment I might have given up on him but I still keep trying.

When I see people out and about with their disabled loved ones, however, I think, well, I could never do that. Mainly because I don’t know the disabled person. The personal connection makes or breaks one’s ability to stay in the game and try to do things for someone.

It’s so hard being a sibling to a person with SMI. I’m sorry you went though that with your brother. He was on a singular journey and your lines just didn’t intersect while he was on earth. Maybe you can forge a relationship in your mind somehow with him by imagining him getting to a place of workability–and then you can stop feeling awful and just know that your good ideas to teach and guide him might have mattered and made a difference.

Hope this helps a little.

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