hI well the house is small enough so I know whats what and i think he would flip out totally if he caught me doing that. I already monitor his social media although he posts virtually nothing now. but thanks for the heads up.
A hard few days I am drained.
IM really drained the past 2 days my son took a sudden dive for the worse. Staying in his bedroom almost all day. Coming out only to eat. All offers of going for a walk or sitting in the garden rejected in a cold way. He Didnt eat much yesterday and he normally eats for England at the moment! its like he is angry with me and IM trying to work out what I have done. No thank yous or please for anything I do for him. I dont expect it but its missing from what it was a few days before.
Did manage to get him out for an hour I sat had a drink he went to buy a macodnals and didnt say a word all the time we were out. He is totally withdrawn to himself again. Tomorrow his new care co-ordinator arrives , and just in time it seems. The risperidone he is on is shiit. I worry in case his delusions are returning.
Negative SZ is terrible as the person just does not connect on any level. Sometimes im terrified for the future. I am on my own with him, no friends around little or no family. The isolation can be hard. I know its all self pity and im sorry. Just feeling it tonight.
And here you all are with your own struggles ā¦ my brother is an OT and he gave some decent advise - not to view this totally as him being defined by the SZ but rather it is a transient state based on where his emotional and mental state is at any one time and can and will be subject to change, not always for the worse. But days like today it feels impossible. I miss my son the funny happy vibrant young man, whos life has been turned upside down and inside out by this wretched wretched illness. Why me ? why you ? its not supposed to happen to us is it ? its always over there happening to someone else ā¦ until it is you or yours.
Hope everyone is keep well ā¦ thanks for having me here Dino
@Simdad, along kinda the same lines as what your OT brother said, itās really important to remember that this illness is cyclical. Maybe the Risperdal is shit. Maybe the Risperdal needs a dosage increase. Maybe your son is just in a bad āphaseā.
Youāre gonna get a better handle on this horrible disease. Your heart is broken, but youāre going to survive this. Breathe.
thank you for the words of encouragement - one day at a time I guess for us all. Someone here said its like a car crash when it happens finding a loved one / child diagnosed with SZ ā¦ so true. And everything goes on hold. I was planning to travel the world when my son hit 21 as in my mind he would be setting out to university and striding forth with building his life. Now that is gone at this time. My focus has to be him. He rejects me daily at the moment does not comprehend his situation but I know he needs me. Hope your well @Day-by-Day
My son has his first home visit in 50 minutes with his new designated care co-ordinator. I have to get him out of bed in a minute. Im nervous for this but relieved also someone is coming in. I have felt at times out my depth the past few weeks dealing with this on my own. The past 8 months before this when he was in hospital at least then I managed some respite. But the hospital was not doing him any good so I had to take him under my care. I hope his care co can at least look at his meds again and any treatment in the community. Im just learning what MHS are like back in the UK. House is clean, sons room is a mess and its a battle to get in there to clean it. But this morning I focus on the meeting. He is very withdrawn so I have forewarned the team he will probably say all is well and for them to not bother.
Hope everyone else is okay today
Dino
I hope the care coordinator meeting went ok. Sometimes those meetings end up being more about supporting us, rather than our loved ones, particularly when our loved ones are still too unstable to participate.
Our son continues to reject any and all community-based supports. I hope you have better luck with your son. Time will tell.
I heard Dr. Amador speak recently at the NAMI National Convention. My best takeaway (in addition to LEAP) was this: The top two predictors of long-term medication adherence:
āWe never win on the strength of our argument. We win on the strength of our relationship.ā Dr. Amadorās own promise to his brother with SZ (successfully resulting in the brother eventually becoming med-compliant and having a quality of life) was that he would not tell him what to do ābecause I want our relationship backā.
I understand because I have seen similar negative symptoms. My son was away at college so I did not live it daily every moment, however, as you are. It was only after his situation deteriorated further (he was not med-compliant at the time) that he eventually got the help he needed. Even then, it was a long and hard journey. But our son is still there and bounced back to a huge extent!
@Simdad I feel your pain, like so many of us who love our children it is extremely hard to see them suffer. My son and I were very close during his childhood. He first got sick while in college, but managed on medication for over 13 years. When my son first got sick I joined NAMI National Association Mental Illness for support. I took the 12 week Family to Family class in 2003 and again in 2017. I learned how to cope with this illness that my son now has. He is in the hospital again, I think this makes around 30 hospital stays since 2015. I would love to have him live with me, but he has no insight and is not compliant with his meds. NAMIās quote is ānever give up hopeāā¦I hope that some day my son might be able to live with me, or close to me in his own apartment within walking distance. This is a heavy cross to carry. My sonās friends also left him and so did his wife. My son graduated with an architect degree, but did not pursue that career. He did work for 13 years prior to 2015. I am talking too much about my son, but I just want you to know that this is a very hard road and from my experience, a very long road too. I am new to this site, and I find this to be very supportive. I havenāt been to NAMI support lately, but I do know that support for us caregivers is very important.
@Day-by-Day my son also rejects any and all community-based support. My son does not have any insight which makes it extremely difficult to get the help he so needs. He has been in hospital again and forced meds were required. They get him stabilized, released to group home, again no insight so he does not believe he needs medication. This has been since 2015; he was compliant before from 2001 until his medication was switched in 2015. I might be repeating myself, but he has had many hospitalization since 2015. As @hope4us stated, number 1 predictor of long-term medication adherence is insight. Never give up hope!
@spanky, what med was your son on for all those years, and why did the psychiatrist switch his meds in 2015?
After reading about your sonās experience, as well as the experiences of others, Iām really worried about switching my sonās meds. Iām concerned itāll make things worse. Itās such a crapshoot.
@Day-by-Day My son was on Geodon for the majority of the time prior to 2015. My son was having side effects of increased prolactin - which is a hormone that usually only concerns females. My son was married at the time, so I was not involved in his life. So this is what I interpreted. His psychiatrist at that time did not believe he had schitzo-effective because he never saw an episode. He was diagnosed with this when he was still in college, 2003 graduated. My son, his wife and the doctor was on board with trying a new drug that treats seizures that they found also works on people who have bi-polar. Well as always it takes time before you know if the drug works, going back on Geodon was not working.
My son was always compliant until 2015, after his first release from hospital he went straight to the drug store to get his new prescriptions. However, my sonās employer had stopped all his benefits. My son terminated his employment, making 80K on March 30, 2016, pursuing a job with the CIA was going to make 250K. My son researched everything and was under the impression he would have benefits for 30 days. NOT. So that was the beginning of his noncompliance. He went back to taking Geodon. He has had many hospitalizations and I found that the Invega Sustaina works best for him. He was taking injection and orally, was being compliant until January came around when his new insurance kicked in. They wanted him to pay 1K a month for the injection (he was getting samples of the injection prior to insurance). His medicaid was and continues to be in pending. Consumers who have medicaid has no problem with getting the help they need.
So my son continued to go down the slippery slope to the point he has no insight. This breaks my heart because at one time he was compliant and did everything he was to do to be healthy. His wife left him, I had to sell his house and return his vehicle, he lives in a group home - which breaks my heart because he wants to live with me then eventually get his own apartment. I want this too!!! I have cried so many tears these past few years that I thought my tear ducts were all dried up; well they are not as I write this.
Worked for about a year then no longer effective ā¦ and yes, i would shoot her myself, big cost savingsā¦
@GSSP, Iāve been wondering for a whileā¦Did your wife (and/or daughter) ever have a higher dosage of Invega Sustenna (156 mg or 234 mg)?
At first, cant remember, to long agoā¦
@spanky, I often wonder myself why the AP that worked really well the first time doesnāt work the same way the 2nd time. My son was on Risperidone after his major break, and it worked well for him for 3 years. Then he thought he was āall betterā, stopped all meds ācold-turkeyā. ALL HELL BROKE LOOSE.
Went back in hospital, and because of HIPPA, they wouldnāt tell me anything. My only option was to tell them what he had been taking. They tried Risperidone again, did NOT work.
He is currently on 7.5mg of Zyprexa, and so far relatively stable. However, his negative symptoms are still very noticeable, and often, very withdrawn where he does not want to be bothered with anyone/anything. Heartbreaking.
You said your son is currently in a group home, but he wants to come live with you. And you said you wanted him to. Is that not a possibility? Can this happen if both of you want this? I mean your son lost everything, the house, the car, his wife, all he really has is you.
Wishing the best outcome for you and your son, whatever that may end up being
@mbheart I want him to live with me more than anything but he has no insight into the severity of his illness. When he gets discharged, he takes his medication for awhile but does not continue to get him the the next step, which is his own apartment or with me. For example, this last hospitalization resulted from the following event, which I understand were he is coming from. Across the street from the group home there is a house for sale. My son decided he was going to take possession of this house, so he went and sat on the porch smoking cigarettes and would not leave. I know all he wants is a home because he lost his. Another time when he ended in hospital, he was looking to buy a huge house, (his wife and him talked of moving into a bigger home because they were both making good money), so he went to this upper scale home and sat in front of a house for sale because he said he bought it. The neighbors called police, this was scaring the people at 6:00 am. He said he was just waiting for his father to bring him the keys to the house. His father died in 2014.
It is so sad, whenever he has one of these events, I know what he is trying to do. Another time he needed cigarettes, but he did not take his debit card or wallet, so he banged on the plexiglass enclosure demanding cigarettes.
I just pray that he stays on his medication long enough so he understands he must take his medication. I have had to call the crisis center on at least 3 occasions. It is extremely hard watching your son being taken down and transported in an ambulance. Again, my tears flow.
@spanky, but it sounds like he was doing extremely well for YEARS on Geodon. He was making good money, married, had insight and was doing what he was supposed to do (taking his meds).
I truly believe that some of their delusions stem from something they want really badly, or wish they could have had, I truly believe it stems from some type of MAJOR trauma. And your son losing his wife, after they talked of having a big home, and how heās shifting towards home ownershipā¦ there is always a meaning behind their delusions.
I just hope he can stay on meds, gets his insight back, and REALIZES, he needs to be on SOMETHING that works, in order to LIVE WITH YOU. This has to be a condition of the living arrangement with you. Mother & son both want this, and itās so so sad. Then once heās stabilized living with you, then the next step of getting him his own place eventually.
Itās so hard when they say ābut I want to live youā, but for reasons we all know on here, they just canāt.
Truly hoping for insight for your son. Its doubly sad because to me, it sounds like, at one time, he had it all and lost it.
Unlike my son, who has never known that kind of a life, which is also beyond sad. I canāt imagine how devastating it is, to get a taste of that and thenā¦ itās gone.
Best for you and your son
About 20 years ago, last time wife drove, lost south of Nashville, laying on side of road, out of gas, 2am, cell phone and several hundred dollars in cashā¦ LOLā¦ one winter morn, many years later, she did a walk about, 2am, February, no glasses, barefoot, only little night gown, lost 1.5 miles away, I was ready for work, and after looking around for her, heard ambulance from a distance, smiled, went on to work, LOLā¦ Some years later, she served some real time, criminally insane contractor operated facility, two cops at front door, she to the rear, attack from behind, attempted murder, I stayed at work after the call, full blown bench trial, hospital basement, super cool event for me, thoroughly enjoyed the process, indefinite sentence, served three monthsā¦ could not fix and very expensive for themā¦
You will get use to itā¦
Daughter full blown med resistant SZ, gone, dope, drugs, shooting H, went from this (pic 1, 2)
to this, 6 month out of state rehab, straight into 9 round, one flew over coocoo nest ECT, over 3 weeks, on heavy meds but fixed, functions, apartment, bf, drives, school, wrap your head around that LOL fixed:
She made this ECT vid for this forum, day after release, listen to itā¦
