Tell us how you are today?


#82

Yeah, me too. Hugs, it always back to waiting.


#83

We’ve had two snow days without power in NE. Yesterday everyone was a little stressed and I saw how fragile sanity was for my son as he lashed out at my husband. Later he calmed as the he (my son) and I took care of the animals and the wood burning stove and even prepared to play my first game of Magic.
Today - another day of wood stove and close quarters. More calm, and I actually enjoyed the game of Magic. He won but he was very patient with me and did a very good job of teaching.
Now the power is back on, so a bath and a nap…


#84

Hi hop4us, Thanks for your reply, It is awful with the state your son is in now,I remember how scared I was when my son used to go into a catatonic state for 8 hours posing in a yoga position. My prayers are with you that your son becomes more stable. I am trying to schedule time off for myself, but I feel bad leaving my son alone, He really seems to enjoy my company, which for many years he was not stable enough to. I also enjoy his company, not what I expected our relationship to be at his age, but the new normal I try to except. Keep us posted about your son, many hugs!


#85

Thank you @irene. We have seen various degrees of catatonia in our son before, but it seems the episodes gradually get worse, and they tend to get worse AFTER son is hospitalized (but not always). It is not pleasant, but this time it is allowing our formerly non-medication compliant son to get ECT treatment for the first time. His new doctor initially thought he actually has bi-polar illness and not SZ but I still think it is SZ with elements of mood disorder, so possibly schizo-affective disorder. This is an over-simplified statement, but I am learning it is more important to treat the symptom. There apparently is much thought in the medical world that SZ should not be considered a specific disease but rather that it has multiple possible pathological components that are more important to know for treatment. (See Brain and Behavior Research Foundation).

Would you mind sharing your journey to get your son stabilized? Does he take medication? Do you fear for future catatonic episodes?

I have great appreciation for your desire to want to spend time with him, especially that he welcomes it. It is a mixed blessing! Easier said than done, but I do believe you need to take care of you and that perhaps there is some way you could help your son have a reasonably nice day or few hours without you. Would a pet be an option??


#86

@hopeforus and @irene, I am sorry you both have to experience the extremes of this disease. My heart and hope go out to you both.

@ hope for us, it makes perfect sense not to label the illness, but view it as various forms of the disease and treat it as such. Over the years, my daughter developed extreme forms of ocd, not wanting to even wear shoes more than once. After reseaeching the subject, in Brain and Behavior, one Dr suggested to treat the symptom. The psychosis, the s hizo part of the illness would be a constant. We did with Prozac, and it has made a dramatic difference over the months.

If you can point me to the issue in Brain and Behavior, it would be appreciated.

Today, we begin anew.


#87

Hi hope4us, Thanks for your response, my son does have a companion dog that he got 4 months ago, it is a poodle mix pup and we both adore this little guy. My son is very proud of his dog and he does take good care of him. Again tho, I do take his pup for walks every day because my son can be unmotivated and sleep a lot. I am a dog lover so these walks are great destressers for me. I will write a little later about my journey to get my son stabilized, yes, he does take 20mg of zyprexa daily now. Many hugs to you and your precious son, it is a journey no one would understand unless they lived it, and not one I would wish on anyone.


#88

I finished this. A gift for a friend with a pet duck named Aflac. If I didn’t have yarn, life would be harder.



#89

@Vallpen - Very cute!


#90

Those are so cute! My neighbor had a white goose named Aflac. I loved that goose:)


#91

It’s good to have a hobby or something you enjoy!


#92

Thank you @irene. Glad for the dog…that both you and son enjoy him!

It seems that catatonia can certainly be unique in the realm of SZ (or bi-polar illness). Our son has now had 5 ECT treatments (doctor wants to do 12) and Zyprexa for a couple of weeks at the most, but he got significantly better (in terms of catatonia including muteness) late last week and now he is again saying he does not want treatment/meds. He had been sitting in the same position on the hard floor for so much of every day that he has pressure sores. The hospital is treating those. He is now talking and eating well and so much more himself. Still using wheel chair some but he can walk. His short-term and long-term memory seems entirely intact. And he is the same sweet and gentle young man. It is hard to find something that we can use as a reason in HIS mind for him to take meds/treatment other than without it he will have repeated catatonic episodes. He can even state this, but it is always “THEY think that…” and his brain just hasn’t been able to connect the dots. He says “I can get a job.” Keeping a job is another story. He is had 3 jobs in his 23 years (but has a college degree). One was an unpaid internship (he raised a small amount of support including form his parents :slight_smile: ) that he walked away from when he disappeared last August, and the other two he was fired from due to some aspect of illness (I know the last one was during probation and he just didn’t show up for work one day). We know that lack of insight, his inability to see himself the way he really is, is a common challenge, but will keep trying. It is scary to think about the future if he continues to refuse meds/treatment.


#93

Oh my gosh, I had a terrible day that had absolutely nothing to do with schizophrenia.

This morning when I read about @hope4us son in catatonia, I felt so deeply for the family. My family member’s illness started with sudden onset catatonia; in just one day everything was different. Reading about other families in which a beloved person has sz opens my heart and puts things into perspective.

But at work this afternoon I would have sworn that the soundtrack of hell is a computer printer getting ready to do its thing for minutes at a time prior to printing each page. While a migraine appears and my boss comes over to help by questioning every single thing I am doing.

Little rant over.

Now sending lots of love to everyone. I start my day here, visit when I can, and come back later because I need these connections in order to go through daily stresses that in the past I could not manage. Thank you


#94

We are always “here” for you Hereandhere - you are always here for us.

Social Security called today and asked if I had returned the paperwork to start the 3 year re-evaluation. I had, and informed her I knew my son had signed his paperwork so hopefully she will get it soon.

She had not reviewed his file and didn’t realize he wasn’t living here, I had informed them when he moved out. She needed up giving me a “bless your heart” after I explained why he had moved away. It wasn’t the condescending “bless your heart” it was the wow your life has been awful “bless your heart”. I finished getting the apartment ready today and need to call the family who built it for us and ask them to repair it. I am dreading how disappointed they will be when they see it.


#95

Same here this forum has helped me so much ,Thankyou everyone for being there :kissing_heart::smile::heart:


#96

I have had this site always open for months now, first thing in the morning, the whole day while I’m working, and at night like now. Because of the time difference, most of you post at night for me, so sometimes I stay up way too late reading here. Thank you everyone, this forum has been invaluable for me!


#97

I’ve been meaning to put an update, or check in…I guess this would be the best thread to post such a thing.

I’ve been quiet, although I read every morning over coffee…and try to keep up with everyone. The med worked for the first few days, but then stopped and instead gave me the “gift” of a few of the many possible side effects. Apparently migraines, fatigue and rashes are the perks I get. Enough…I don’t like to think about it, as it seems the “last med there is to try” is not working. I’ll wait until the end of the monthly prescription as the doctor requested. And maybe, just maybe, it takes a month to work completely?

Aramis is still drawing, focusing on getting specific details mastered. Which is great…as he hasn’t been motivated in quite some time. He is also playing video games of a more…well, thinking sort. Not the mindless games that he usually gets lost in. These actually have stories he must follow…that’s great. He talks about various writing outlines…but prefers to spend what time he is awake with the drawings or researching techniques.

His sleep schedule does not exist. Some days it seems as if it’s flipped, and it is. Awake at night, asleep during the day. Other times, he’s awake, then down, then up, then down for the long haul…and back to “day shift”. Until a few hours pass…Still within the “8 hours of sleep per 24 hour period” that the pdoc wants to see.

He still touchy with brother, but is listening to my re-directions in this regard. Sometimes, it’s a simple as brother being “too happy” or “irritating”. And there are times where brother really should leave him alone…he IS being irritating. The times that he thinks his brother is “out to get” him or “did that on purpose” are the only worrisome components…as these situations result in extreme (for Aramis) anger and upset. In a way, it makes sense to be really offended if your brother is “out to get” you. Dad says it’s normal brother interaction, but we’ll continue to keep an eye on this too.

With that in mind…I’m happy to report that brother has been reading more, and listening as well. He is admitting that perhaps he shouldn’t say things a certain way, or mock things that are a challenge for his brother. It’s only through reading about others that this enlightenment has occurred really. He also began looking into various laws regarding mental health (he’s interested in becoming a lawyer) and THAT really opened his eyes. (Just the subject of med compliance vs mandated injections opened his mind and heart to the realities so many face.) He said he had no idea how much he should appreciate what his brother does that is successful, and how the world actually looks to someone who must see things through the “eyes” of scz.

Aside, as some of us have concerns/interest for “sibling” issues…older brother graduated from the UC of Irvine Saturday Academy of Law. He had to argue a case before three Superior Court Judges, and received a special commendation due to his skill at doing so. There was a huge ceremony, which, at the last minute Dad got to actually attend…with a formal luncheon and the entire school board, etc. at the University. Quite exciting, Dad was over the moon of course. We weren’t present for the “final” (which was the mock court trial I mentioned earlier), but two members of the School Board and a Congressman wanted to meet us specifically due to how well he argued his portion of the “case”. That was really cool…Dad was literally beaming with pride the entire time. He needed this, we all did. Oldest boy did it…he knew he did it…got past all the anxiety, while dealing his own concerns, and accomplished something really challenging. He made some nice friends in the process as well…

Aramis told me that, simply put: he hates public activities. It’s absolute misery to go, so why is this something I would think he would like to do? Further, why are we pushing for him to do it?

Well…because we are a family and that’s what families do…they go to their brothers graduation ceremony.

He honestly stared at me like I was insane.

It was so illogical to him that we would insist that he goes, just because other families do stuff like that. Dad and I looked at each other, and thought about it…really, he’s telling us in a very calm and clear manner, that this is not his thing. It IS misery for him…so, why? Do we need to wait for him to act out before we agree?
That doesn’t make sense. Without any other idea of what to do, and knowing he could handle a bit of time alone (it wouldn’t take too long I thought) we left him home for brother’s ceremony.

He thanked us for not making him go, and kept his word…he was safe while we were out. I was worried, as he didn’t answer his phone or text when I would check in, and we were gone for many more hours than I anticipated…but, he was safe and quite happy.

Wish it didn’t make me nervous. I find myself thinking: it was safe this time…there may, or will come a time when he’s not? When do we decide this? After something has happened? There’s really no clear cut answer…we just have to try to make the best decisions as we go along, just like any other family.

On a very happy, final thought…I have referred to husbands work from time to time…that he does high end construction. What he actually does is build specialty concrete art features. Think zoo exhibits, monolith sculptures…and theme parks. He’s been working for Disney this entire time (we moved here for this job), and as Disney is uber private he couldn’t say what he’s been doing…(even to me!) until Disney “officially” publicly releases the new ride/theme park/attraction. Well, after a year of hearing only references to code names, Disney released what husband has been doing. It’s really amazing…and I find myself in absolute awe as to the things he does.

The truth…we know how much is on his mind, how much worry and stress he is under.

To be able to produce something like this,
well…

he should be proud.

Enjoy…here’s the link. It’s too cool.


#98

Hello alwayshopeful,
How is your daughter today? One of your other post, you shared about the peacocks and how your daughter showed interest in. Wouldn’t it be nice to get some actual feathers? I was just thinking she may like that.
How are you doing today?
Well today is my son’s birthday, Lou is 31 today. He is currently a resident of a state hospital. We are able to call him. Lou was in an auto accident a few years back, he suffered a traumatic head injury. He was forensically committed by our judicial system and is currently a ward of the state.
Our family is doing okay with our situation, my daughters and husband were able to gather together for a visit last weekend. We all really enjoyed each others company.
Take care annie


#99

It seems we all feel deeply for each other! Thank you, @Hereandhere. And I can SO relate the slow printer thing! However, I have realized that I don’t stress about some things that I might have previously. I just say (mostly to myself but not always) “Hey, I have a son with SZ! This is nothing compared to that! No worries!” I do worry some for the future but realize I don’t hold the keys. I just do what I can.

Good news for us is that our son still in the hospital went for ECT today! This after telling me 2 days ago he didn’t want to do it anymore. This is #6 out of 12 that the doc wants to do! At visitation today, he even talked to me about it because he was having some minor short-term memory loss so he was explaining that to me (which, of course, I already knew was a common side-effect). He did not seem anxious or overly concerned; he was just making observations. For example, he said that earlier he had not known what month it was. And while he didn’t say he would continue treatments, he also didn’t say he would not continue treatments. He continues to refuse Zyprexa injections (he won’t IM…that must mean “in mouth”??) but I am cautiously optimistic on the ECT! And there was no wheelchair for him in sight today, which means he is becoming more physically able. And when I hugged him before leaving he said “Love you.” Sweet. Day by day.


#100

I really enjoyed reading about the successes in your recent post, @Squid! And also seeing the logic of allowing Aramis to stay at home, even though I’m sure it is hard to not have him be a part of something so meaningful in the life of your family.


#101

@Cerium, here is the link to the recorded webinar I thought was interesting! Brain & Behavior Research Foundation Meet the Scientist Webinar featuring Dr. William T. Carpenter on their website at: bbrfoundation.org/february-webinar-2018