How many of you have an unmedicated family member and what's happening today?


#511

Long story short - She is not on meds for the same reason you can’t Baker Act her.

Will she be quiet at home for a little while? My son is usually quiet after an event that involves the police.


#512

I have heard NAMI trainers say that it IS possible to have a person with MI participate on the Family side of a support group. However, they have to be willing and able to separate out their own experience from that of support for the other family member with SZ. It is also problematic when the person trying to be part of the Family Support is in both groups (Family AND Peer), because that person is getting both sides of things which makes the Family uncomfortable with sharing.


#513

@hope4us I imagine my friend, the former FtF instructor and trainer, might have been specifically addressing undiagnosed family members. My sister would be the most likely family member to attend FtF and she is currently unaware and undiagnosed. Maybe my sister would take her diagnosis as well as my brother did, I don’t know. She self medicates with alcohol every evening until her voice is a slurry mess.

The sharing part can be a problem - in our FtF class one of the moms whose son suffered from bipolar was in the Peer class going on in the same building at the same time. The mom tended to get a little overexcited in class. During one class when another mom was sharing the excited mom interrupted her asking “IS YOUR SON (SO AND SO)? MY SON WAS TELLING ME HOW FUNNY HE IS!” The mom who had been speaking looked horrified.


#514

Right…not good! This is when a good Facilitator/Trainer should step in (perhaps outside of class) to address the problem. If necessary, the Trainer should politely indicate that the person can no longer be part of the group/class.


#515

@oldladyblue,
So sorry to hear. AnnieNorCal


#516

Thank you for your advice and good wishes. My daughter was loud and active all Sunday and Monday, but last night she ate and slept and was eating again this morning, so she will have good days for the next few most likely.

@gardencat I will try a few of your sleeping suggestions. Yes, one of the three cops was very compassionate, the other was humerous. I can use compassion and humor. That helped. @hope You made me laugh. @AnnieNorCal I hope you are well. @hope4us I attended a few NAMI classes where the facilitators let one group member talk and talk and talk to the detriment of the group. I never tried to correct the facilitator, but it did need to be done.


#517

I have often wondered if our FtF class was very typical of the classes. We had so many people in extreme situations trying to absorb the information while staggering through their own situations. Even the instructors/facilitators had a lot of bad stuff going on in their own lives. I would think that all of the classes would have similar composition to ours, but other people have spoken about maintaining close ties with the other families after the class ended. Near the end of our classes, the excited mom passed around a sheet asking for people to put their email contact information down to create a newsletter/chain email update. No one except the excited woman wanted anything to do with maintaining contact with the class.

Wouldn’t it be instructor/facilitator rather than facilitator/ trainer? When my friend trained people she was training them to run the FtF classes. Personally, I think that NAMI’s strongest and weakest point is that volunteers serve as class instructor/facilitators. It does help to be led by people who have actually been in your shoes - the problem is they are still in your shoes. They give you the paths you can take to help yourselves, but they - and I always get stuck here- what did I want them to do at the time?

Maybe, just maybe, there isn’t anything they can do to directly help the families in dangerous situations. Just like we do here, give people some ideas, hope they can find their way and hope they stay safe.


#518

The FtF class we took was more like yours. We did not exchange emails as a group. We did connect with three or four people or couples including two with a SZ diagnosis that have stayed in touch via email. Yes, it was a lot of information, and staggering at first, but it was welcome and we found it empowering and I refer back to the material now and then. My husband will tell you that it is the best thing that we did. At the time, our son was missing and homeless in another state. You’re right, it would be the Instructor/Facilitator to intervene. The Trainer would not be present in the class. As far as Family Support Groups go, dangerous situations…safety issues…are always dealt with first and there are protocols for how to do that. The NAMI model includes specific ways to guide the discussion to help people and/or give them encouragement. One of the NAMI principles is that we accept that we cannot resolve all problems. Another is that we find strength in sharing experiences. That is also a benefit of this Forum!


#519

My daughter was awake most of the night, was loudly talking from 1-3AM waking my husband, myself and the dogs. I went to a support group last week in which family members were trying to figure out ways to quiet the pacing and disruptive behavior of their medicated schz members. One mom was there with her dx’d son, which limited conversation for a while, but then not. One man, after 7 years, was there to report success with his son being on the right medicine and participating in life again after his 5th hospitalization and a jail sentence. Oh my, such a roller coaster ride we are all on.


#520

I always got something out of NAMI’s support group. Its hard to explain how we benefit by being in a roomful of people with problems similar to ours, but its real. Once my support group broke out and cheered because I said Jeb showered regularly. They were so excited for me.


#521

Yes, @hope there is always something nice in the support groups, as well as a lot of overall sadness.

Tonight my daughter allowed me in her room for the first time in 2 months. It basically looks the same as it did 2 or 4 or 6 months ago. We went over a questionnaire for homeopathic remedies being made up especially for her. It was interesting to see her responses to the questions interspersed with talking to her voices. She didn’t try to hide the voice-talking from me, which is unusual. Usually she speaks into her hands or turns her head. But although her memory seems good (when certain physical problems started), her ability to describe her body symptoms seems very limited. As I left with the forms filled out, she gave me a box of plaques she’s been making for the sign shop she used to work at: she finished the job. I feel it was a good conversation although a little like “the Twilight Zone”, we were communicating for longer than we have in quite some time.


#522

@oldladyblue When I attended regularly I did discover that support group was a lot like brain disorders in general. Sometimes newcomers in crisis would be there - often they were people who just found out because of an awful incident. They just needed a place to talk and say words to describe experiences they couldn’t begin to understand. Just being able to talk to the rest of us did so much for them. Sometimes different ones of the regulars would talk about a recent crisis in their family while the others supported them -and now and then there were no new folks in crisis and none of us had an issue going on at home and we could talk about the good things in our lives. You never knew in advance what the meeting was going to hold. Deep tragedy or just cookies and conversation.

So touching and sad to think your daughter finished the box of plaques for the job she used to have - things like that always make me pause. Often it seems that what is going on in their heads when they are actually controlling their own heads is just simple desires. You learned so much by doing the questionnaire with her.

Your visit with your daughter got me to thinking.

When I walked around my son’s first apartment after college, I remember being puzzled. He had always set up and decorated his bedroom and dorm room - until the 4th year of college. From then on he never put anything on the walls and only furnished for minimum function. Even his bed became just a mattress on the floor. HIs kitchen had a bowl, plate, spoon and a fork and a pan for boiling pasta. i think he warmed the pasta sauces up in their glass jar in his microwave.

I was reading an account a man wrote about his experiences with scz. He talked about how difficult the simplest things are to do and how things just being present add to his struggle. Now my son’s furnishings (or lack of) make sense.

Your daughter must be interested in the homeopathic remedies that she went over the questions with you. She spoke more freely to the voices in your presence - seems like that would be good on one hand and Twilight Zonelike on the other.

I think my son’s annual hiking trip in national parks is his way of escaping the complications of life and other people, just giving himself a break. He buys granola bars and cases of water to take with him (always comes back with a lot of weight lost)

Thanks for listening


#523

@Hope Is Jeb back from his trip or is he still out in CO?


#524

Hi DianeR:) Apparently - though he only told me about Colorado - his plans have covered more distance this year. It’s a week in and he hasn’t made it to Colorado yet. I am beginning to suspect he is saving it for the way home. How is your son doing?


#525

Of course, no thanks needed for listening, I always like hearing your views.

Tonight my daughter opened the door to take food and shut it again: a 10 second “visit”. I felt less worried about her today while I was at work.

I called a woman from my family to family course a few days ago and she returned my call today. Her son is still unmedicated, she is still taking care of him and her husband with alzh dementia. She recently spent time in the hospital and her doctor told her it was “stress”. Sigh. I understand.

It is good that your son is taking his yearly trip. I am a bit jealous as I don’t think my loved one could ever plan anything anymore. Each day is pretty much the same with a touch of variation like “how long of a shower” was taken today (if at all). It makes me smile to think of him out in the world traveling. I like that he is doing it.


#526

How much sarcosine does your daughter take? Does she take any meds at all or just sarcosine?


#527

The best sarcosine is in either the formula from www.profrontal.com or www.brainvitaminz.com
There are also some really good herbs for sz that I just read about this week from ayurvedic medicine. They are Brahmi., shankha pushpi Ashwagandha., jatamansi. Spelling might be a letter off at the end of middle, you will see what I mean when you Google it.
My story is different bc my daughter refuses meds and also refuses supplements. The sarcosine tastes exactly like sugar so you can add it to anything, which I do.
Recently I am trying adding homeopathic to my daughter tea twice a day and having a very good response. There are about 8 selections of remedies that are good choices and it is best if it once part of a multi stack of daily things to take.
Other great things are making sure the sz person gets their omega oils every day, it makes a huge difference along with high potency vitamins such as the ones from www.truehope.com or Mega Food makes great high potency vitamins too.
Directions for how much to use come with the bag or bottles for the sarcosine and it is very good deal.
Sarcosine without any additional supplements will only get you average results, excellent results are from being additional nutrients into the system of the body. Pro Frontal has an additional amino acid besides sarcosine. Google supplements for sz and lots will come up. Protein drinks and smoothies are a nice addition since sz patients don’t eat very well, at least my daughter doesn’t usually. My daughter does not take the pharmaceutical bc like most patients, she’s hates them. There are other choices besides meds.
Have a great week end.


#528

I envy that your daughter is right there with you where you know where she is and that no one is hurting her, but the nightly yelling I do not miss at all. I am beginning to have some confidence in my son’s ability to do this trip, just because its the third time. Really hoping he keeps his hiking simple and trying not to envision him falling off a cliff. Each time he emerges and buys fast food - I can release my breath.

On the old public forum, back when NAMI had a decent family support forum on their website, there was a couple that could not leave their daughter alone ever as she would chase the family pets around with knives, seriously intending them harm. Another family couldn’t leave their son at home alone because he dismantled anything and everything electrical.

My son did so many of those days without change for years - things did begin to change after he worked with a therapist who did Cognitive Behavior Therapy. We had to pay for it ourselves, but it was the best money we have spent, from a payoff perspective. We now wonder if those days where it seemed like he wasn’t doing anything were actually days spent learning to cope with his scz.

When I worry about him becoming lost, hiking in darkness or falling off a cliff, I picture him pausing and looking around at some dreamscape of mountains and valleys. That helps.


#529

Thanks, Hope, you made me smile. Yes, I am thankful for those things. I hope your son is safe on his trek and surfaces soon to buy fast food so you know where he is.

Tonight, my daughter came to me in the living room (she almost never comes into my part of the house to find me) to ask if I could take her out for hamburgers (which I did) and said she loved me when we returned home. It was a very good night.


#530

Now this made me smile - and I’m still smiling.