Late in trying to take action?


#1

Anyone can relate to being late in taking action when it comes to helping or caring for our loved afflicted ones? I thought it’s sad how not all information is new, I received their diagnosis at an earlier stage but I thought it was wrong and resisted to realize it is true until few years later when it impaired their judgment and functionality… It won’t help me or anyone to think about the past though recent but it’s making me understand to be more open minded when anyone would tell me anything next time…


#2

I didn’t understand how my brother’s SzA was effecting him all the time.
I thought there were periods of time where he was able to think clearly, but it was just really his ability to pretend things were fine that I was seeing.
Even now, chaos still rules in his mind. He might habe conversations that seem reasonable, but the disconnect between what is happening and how his choices will play out in the near future is still as real as ever.


#3

I was way late. My son’s first dramatic change, while there was subtle stuff in high school from time to time, then it would smooth out, the first dramatic change was when he called me from college to tell me his friends were all mad at him. He said they were mad because he didn’t want to hang out with them anymore. This was so unlike him. He always loved spending time with his friends.

I remember looking at the phone for a long time after that call. Really wish I had listened to my gut instinct that something was wrong. I did call him back sometime later and he seemed fine. It went that way for a couple of years. He would say something to me, then later when I followed up, it was all fine. I didn’t know that a mental illness could come and go like scz does.

It was 13 years later when he finally told his dad and I that we had just said something that we knew we had not said. When we told him we knew we had not just called him a name. He said that we just didn’t realize we had done it. We looked at each other and left his place shortly after. My husband and I went and sat in a local brewery’s bar and just sat there in silence. Our world had just tilted, but we didn’t know what it meant. That was the little crack in our past world that was big enough for the folks at Family to Family to pry open our real world for us many months later.

If we had known I believe we could have gotten Jeb on meds years ago before his judgment and function became so impaired.


#4

I am dealing with a simmilar issue. My wifes meds have not worked since late spring, she really started struggling by June. However she would kinda joke things off, would tell me she was ok, go to work, etc.

Fast forward to now. She can barely focus, her attention is almost never on people in front of her. As you have experienced she thinks people have done and said things they havent. Including me. The persons she hears tell her I am cheating on her, which I most certainly am not. I dont even know the people she is talking about in some cases. I completely blew up one day which I’ve regretted from the moment it happened and have apologized to her multiple times, but the accusations continue.

At this point whether she likes it or not she is going to be admitted to the hospital by the end of the week. It’s one of the hardest things I’ve ever had to deal with.

This disease is like watching someone’s soul die, I just pray that, what I get back when she comes home is still my wife. I am well aware that she will never be the same after this, but until they make things quiet for her, she cannot even begin to heal.

I wish everyone the best with thier loved ones.


#5

I am so sorry this is happening to you and your wife. It is the hardest thing to force a loved one into the mental hospital. I felt like a traitor when I had to do it. I wish you strength and a good result.

It probably is true that we can all look backwards and wish we’d taken action earlier, however, that does not usually have any benefit in the present (to beat oneself up over what should have happened).


#6

Thankfully she is willing to go for now, but tomorrow is another day. Shes been very calm tonight and I’m worried its calm before the real storm. I know once they silence it she will ne ok.


#7

If your wife is willing to be hospitalized and have her meds adjusted, you hopefully will have a great result. I wish my loved one was willing to be medicated, one set of meds had almost all symptoms abate for her, but she could see no difference or benefit and didn’t even remember hearing voices while the meds were working. My struggle is still to find a way to get her willing to receive help. Once the meds wore off the psychosis returned fully. Her rantings cycle: getting deep and consuming for days, then letting off for days, but the paranoia and voices never go away totally. I think you must get your wife to the hospital as soon as you can, if she is willing to go. I am hoping for the best for you both.


#8

The thing that makes this entire episode even more difficult is that for 3 years plus she was completely symptom free. Then it’s like someone flipped a switch and it came back stronger and louder then ever. I would get hopeful when she would string a couple if good days together that maybe we were out of the woods and then things would get bad again. I am hoping she is not in long both for her sake and our son, but she has to get better letting this continue it will only get worse.


#9

I think a lot of us feel this way, @Love_Hope.

This article posted by NAMI (although about suicide, not particularly relevant here) wrote a piece that really struck it. It was written by a mom of a boy with sz who ultimately died by suicide. She wrote " Sadly, I hear stories of other parents who thought their child would outgrow these behaviors, too. When these behaviors change someone’s personality, it could signal a growing mental illness. I stopped really seeing my son because I thought I knew him by heart. I dismissed his complaints and his tears. I didn’t reach out to help him find his way because I was lost too.

Parents cannot look inside a child’s head to see what dark thoughts may be present, thoughts of worthlessness, of being a burden or thoughts of death. These are thoughts they can’t shake. Too ashamed to speak them aloud, our children suffer. To share these with another person they fear judgment, advice giving and not being taken seriously, or worse, feeling weak and powerless."

I think if we could, all of us would go back in time and do things differently. Its not your fault things happened the way they did. You didn’t cause it, you didn’t know the signs and you were doing what you thought was best for your loved one at the time. All we can do is forgive ourselves and look toward the future. It is a special kind of hurt though, you’re not alone.

Heres the blog post if anyones interested:

https://www.nami.org/Blogs/NAMI-Blog/October-2018/Why-I-Don-t-Say-My-Son-‘Committed-Suicide?fbclid=IwAR0EQAt9o9YWbMM3Nn0UeoW8beT8ibTUveh73wFsERBTwv-PFmes3OOTJv4


#10

It is never too late. My son started showing symptoms that we attributed to bad crowd/drug use/petty crime. He was admitted the first time to the hospital about 5 years later and we received the diagnosis but all of us disregarded it thinking it was just a passing break down due to stress. So all told about 8 years of ignorance/denial.

There are many articles talking about the importance of catching early and introducing antipsychotics asap. While I am not a doctor, I can tell by reading this site, no two cases are the same. Perhaps early intervention might stop some destructive coping mechanisms from setting in, but the disease itself runs its course individually.

Don’t beat yourself up. But now that you are taking another look, do not lose focus on how YOU deal with it. Meds alone will not bring your LO back to where they were and this simply passes. Life has happened. Experience has changed the course. Even if your LO is med compliant watch Dr. Amador’s videos and see if your LO will try CBT. Because chances of a period of meds efficacy failing or non compliance are strong. And how you learn to cope when your LO is literally losing his mind will help more than any med. Compassion to do what is right doesn’t come in a pill or patch. As always we all here hope for the best for you.


#11

@wreklus thank you so much for sharing :heart_decoration:


#12

@hope thank you so much for sharing, this place is giving me much needed support…

With my sister diagnosed scz (& brother undiagnosed affliction) countless signs from when they were teens but we didn’t have the understanding then… Sighs…


#13

Sounds about right… so sad to watch my loved ones lost interest in everything and have nothing to look forward to… I reminded myself of this today, that I need as a current caregiver (visitor) to strengthen myself somehow so I put a plan for myself, things to achieve, places to go to and look forward to… to keep my spirit up amid this calamity…


#14

@Cura this is so beautiful! and feels like the right thing and what I want to hear to feel better and do better :sun_with_face:


#15

@thereisalwayshope thank you thank you thank you


#16

I have to keep myself going for our son (my stepson) He has had to endure a lot in 9 years of life he will be 10 in a month and i can think of no better birthday gift then her being home and better.

His father died when he was 3 and he was taken away from her twice because of drugs. She and I have been together for 5ish years. I helped her get him back a couple years ago and shes been clean for 4 years. I wasnt blind going into my relationship with her. We never really intended to get together it just happened. I find ways to take care of myself. Its important. If I don’t take care of me I’m no good to anyone else.

I’ve learned a lot about this disease in the last few months and have read many heartbreaking stories here, but also seen a lot of hope. So I choose to have hope. I want my wife, partner, and best friend back. I have faith the docs will figure it out.


#17

that is one powerful article!


#18

I was early and late. Early on I noticed some odd things about my daughter, but because I taught autistic children, I felt that I was imagining symptoms. In preschool she would cry because she thought no one liked her and I found out the other children adored her. She’s continued to feel that way up until present day. Around 4 she wanted to die and live with Jesus, but I felt she didn’t realize what that meant. In Kindergarten her teacher noticed several odd things in her behavior, but she was so smart, I thought it to be OK. In 1st grade her teacher saw some more odd behaviors and when she had the same teacher in 2nd grade we had her tested. She was diagnosed ADDHD. After Ritalin she was diagnosed as Gifted. But when she was 8 she would cry and say she wanted to die so often that I took her to a psychiatrist. After a year of counseling he said she was a perfectly adjusted child. But when she visited with him she would lay out the charm and be her bubbly self never talking of things that bothered her or her weird ideas. Her oddities continued on through school. She received lots of awards in High School and was the one student chosen to go to the Youth Leadership Quorum in DC. It was a great honor. She was accepted into George Mason’s honors program after high school and that’s when things really worsened. She tried to commit suicide and never made it to college. Maybe I could have made a difference if I had just trusted my judgement. I’ll always regret that. But then I think, what would be the process to help someone like her when she was young. What could anyone have done to prevent what happened in her teenage years?


#19

Yes, I like to think it might have been different, but even if I had realized and had gotten him on meds earlier, his scz probably would have been like many who are med compliant at first and become non-compliant later as the scz worsens.

Your daughter has some huge accomplishments, its rather striking how much promise so many of the sufferers showed before scz.