Family and Caregiver Schizophrenia Discussion Forum

How has this changed you?

I’d love to know how this experience of our children’s/loved one’s diagnosis has changed you all. I’m such a different person as a result of the last few years. I just don’t know who that person is yet. I feel like there are people in life that just become better versions of themselves through trial. I’m hoping for an improved perspective.

3 Likes

My experience with my brother’s illness before I developed mine had a profound effect on my recovery, and hence my wellbeing and my life. My mantra at times was I’m not the same as him, I won’t make the same mistakes as him, etc. In my prodrome I tried to be invisible, handle my own problems and hide, because I felt my parents had enough trouble dealing with him. But when I faced my own illness, I met it head-on with the help of parents better capable and educated to handle my challenges. The dream of caregivers and most parents is for their charges to become their own caregivers and take care of themselves. And I feel observing and struggling to contain and clean up after my brother’s manic episodes was a seed to more objective thinking about my illness and my behaviors and I was the better for it.

7 Likes

I think that this is such a thought provoking question and an important question as well.

I agree that I am not the same person I was before I met the love of my life. He completely changed me as a person. I always thought that I was a compassionate, gentle and understanding person. I thought that I had reached the heights of the love I could offer. This experience with him has taught me love, above all things. The most real love I have ever given and received. It’s taught me patience. Incredible patience. It’s changed my levels of understanding- my commitment to understanding someone and what they’re going through. Having to truly listen to my man when he’s trying to convince me someone is after him, someone is poisoning him- trying to constantly put myself in his shoes and feel for him. It’s changed my appreciation for “normality” - simple walks, going to restaurant , watching movies, eating dinner - all these things became special if we could just get through them without a fight or a discussion about who’s going to hurt us or poison us. I mean, one little thing out of many we stopped eating in restaurants at one point because he didn’t trust restaurants.

This experience also changed my own mental health. I had to learn how to truly take care of myself - not depending on him to take care of me, to love me - there are many times including now- where he is in no position to love me, to give me the love I need, the love I desire. The love for myself has changed. I almost lost myself in this experience - I wanted to die so many times - I’ve cried many times curled up in the bathtub - I’ve been brought to my knees, sobbing so many times - I’ve had to pick myself up off the floor and take care of my own health - I’ve had to strengthen my faith and hold on to hope.

Take care everyone.

6 Likes

We adopted two children One at 8 yrs old and the other as an infant. Our son at 8, had some learning disabilities and lied. Overall though we had a great time-- we lived in a rural area then moved to a more suburban area. He had an incredible voice, went to college in NYC to a prestigious music school. He no longer listened to us… first year he did well then it went south…drugs etc… we became estranged… though we tried for 6 years-- his deceit and lies wore us down. By then our beautiful daughter, 9 yrs younger, developed major Biopolar 1 Disorder. I used to be a Special Ed Director so fortunately or unfortunately knew what lay ahead though… really had no idea. With our son, after 6 years trying to connect we knew we were not strong enough to deal with both (2 therapists and a lot of thinking)
Our daughter was violent, many assaults, many hospitalizations… I became involved with NAMI – she was two years in a private residential treatment facility… she did get a partial scholarship… it saved her… she met someone there, moved to Louisville and actually finished a Masters there… but then it went South. She is back in MA in an apartment. She is 38, never worked but so, so sweet… very kind. Very smart. Here 3 years… 2 hospitalizations…
Our son died last Sept down in GA. We had not seen him in 20 yrs… Though not charged it appears his wife accidently killed him by hitting him in the head during a fight. She was arrested but not charged. He collapsed a day later and died.
There were two boys and I feel the courts felt it was better to leave her with them. He was still doing drugs… we found out later…
Our daughter – it’s a day at a time. She’s helpful, kind and sweet… gained 140 lbs on the Invega shot… and her motivation is gone… We see her daily especially with Covid -19 happening.
It changed us — You learn love does not cure everything. Yes, if you want to survive you will need to set a bar and when you hit it be able to walk away. Everyone has a bar. If you don’t then you go down with them. A good therapist and a lot of reading and support groups can help with this. You learn people that have never had this experience have no way of understanding.
You have to accept that the dreams you had for your child are gone. and then you have to see it in their face that they know this…
I do not believe in organized religion as when it came time for her Catholic School to step up they failed. She was failed by many.
We’re different now, she is 38. We’re in our 70s. Just downsized to a condo but realize that not quite ready for this. WE are her support and she knows it and helps us, is funny— really funny and fun to be with.
I am an advocate for mental health. My husband has some health issues but he is there for Chris… You build a different life then you thought. You also realize that you live in a country where services in Mental Health have been cut and cut and cut… ie: homelessness… so hopefully it will improve but both political parties have failed over the years so who knows.
Our family was great with both kids… so were are friends ironically two closest friends who lived on either side of us… each had a severely mentally ill child as well… all three kids about the same age… it changes you…You need to learn you have to find the things you can do to escape or you won’t make it. That’s what gives me the strength to be a family… a different family

12 Likes

This is so beautifully said. Thanks for sharing

2 Likes

Happy cake (anniversary) day!

2 Likes

It is a long process SueML. I am realizing this more and more. I am in the new stages of this, since it is only 2 years since his diagnosis. I have weeks where I am just fine coping with what has happened. Then a bad day shows up and I realize what I’m in for and I slip into despair. My faith was so central to my life, but I have jokingly told my other kids I am not on speaking terms with God right now. This is one trial that has shaken my faith and resolve —instead of increasing it—that scares me. I vacillate between apathy— bc I feel powerless— or abject terror. I am a far less judgmental person. I am less likely to speak to anyone without thinking first. I’m more comfortable with silences, where I used to feel the need to fill them before. I look for peace and pleasure in the simplest things. I am frustrated with friends who have normal worries with their kids. I listen to their concerns, bc I can’t tell them what has happened. The stigma is too great and is such a violation of his privacy. No one would understand.

3 Likes


Get a dog.

5 Likes

I understand totally what you mean by having your faith shaken, but I will say through it all God has always been with me and carried me through some times when I lost all hope. My appreciation for what is truly important has changed and that’s where I direct mind and my heart these days. Normal isn’t what it used to be, and that’s ok.

2 Likes

Having pets really helps me.

1 Like

It’s now 5 years since my son’s diagnosis and this followed 3-5 years of what I now recognise as his pro dromal period where he used illicit drugs snd alcohol to manage symptoms, dropped out of Uni etc etc
He has been sectioned twice since diagnosis.
The illness has put a huge strain on every member of the family, him most of all of course.

The last lines of your post really resonated with me as that was the mistake we made and it meant that we denied ourselves the support of friends and wider family. Professionals offered no help as to how best to manage this aspect and saw us as a family that were financially secure, stable and able to offer him all that he needed.

However, the toll of his illness has proved huge in that my previously happy marriage of 30 years ended in 2017 when his father left… he could not stand my constant need for reassurance ( I had always been the one who coped well with worries, this was so very different and impossibly difficult for me to cope with). He also found the unpredictability of our sons mood and condition too stressful to.live with. He sees him regularly and lives a couple of miles away but our son lives full time with me.

I am now in my mid 60s and am trying to prepare my son, now on Clozapine as he had multi resistance to a number of other meds, to move towards living somewhere separate from me, even if he comes round to me every day for dinner. This needs tiny baby steps and may take another 5 years to fully come about I suspect. I do not want him to lose his home as well as his Mum when I die.

Meanwhile, our close friends all now know he has a serious and enduring MI, they’ve mostly worked out which one. The stress of keeping secrets is one you don’t need… SZ is all a lot more common than you think…1 in a100 people, you need to share and confide for you. If you can afford it then I have found sessions with a good psychotherapist to be a lifesaver.

My son’s brothers have also fretted about who they may confide in… They do not regret having chosen wisely, and talk to each other of course.

My son has told other family members of his diagnosis himself. This required a lot of courage but he says all the secrecy was making his symptoms worse, his father was concerned for older relative’s welfare and still dies nit speak.of it to them. I have to say I wasn’t that worried as by the time you are 80 you have seen a lot, and what’s most important is my son’s peace of mind. It all worked out well anyway.

Take each day at a time,
Celebrate what you’ve got
Trust others who love you, you need them so let them know how much

3 Likes

@SueML beautifully written, incredible words of wisdom. I admire your strength!

1 Like

This is bittersweet. What a lovely person you are, and you deserve to have your care and love reciprocated so I wonder why you stay…yet, I know what you mean. The self-absorption of those with MI is so hard, and so frustrating, but also so heart wrenching. It’s like you see the person at every age all at once, as if their identities have been turned inside out and they are showing you everything (whenever you like it or not). I feel discouraged today. I’m not a blood relative (just a long-term GF) and it feels like everyone is saying “walk away. Save yourself.” He’s gone so far off the deep end into abusive behavior (now in jail), but I can’t let him totally go. Advocated today (again) for health and mental exam…and he’s probably never going to talk to me again. It’s tricky. But when I read this, I want you to have the love you deserve, which is what everyone is saying to me. Not a one-way Street.

3 Likes

I tried to keep pressing my :heart: button (As I’ve often done in this forum) because I wanted to do it five times. But it only lets me once. Thank you for that post. It’s like you guys speak so I don’t have to. My heart breaks most every day… and when I try and speak anywhere else I just hear judgment. It’s my fault for staying… it’s crap. People just really can’t grasp the reality of it if they’ve never lived it. Thanks again so much to everybody for sharing here.

3 Likes

This is my son’s second psychotic episode. The first one was 2 years ago this month. I now realize that his illness may be forever and that’s changed how I look at the future. What happens after his mother and I pass away? We’re in our late 60’s. I ordered Planning for the Future: Providing a Meaningful Life for a Child With a Disability After Your Death I didn’t think seriously about end of life planning before.

I look back over my life and think about what my delusions were. They weren’t exotic ones like the CIA after me, but there have been delusions – if that’s what we mean by believing in something that isn’t real.

Nothing seems that bad anymore. If my son can get through the day with what he has to go through, with the voices in his head and not knowing what to believe, nothing I face can be that bad.

Compassion – I’m more compassionate. Who knows what other people are dealing with and why they believe the things they do. I’ll take care of myself at the same time I respect others.

4 Likes

Yes, sigh, that’s the big one with me. This post made me look back at the old me, how I was when my daughter first became ill.

I used to be a hard-nosed no-sympathy type towards those with no self discipline, who had mental illnesses like anxiety or depression and especially toward those with severe mental illness whose weird-to-me behavior, bad hygiene, and disregard for others appalled me. I was actually a downright mean short-tempered person with my daughter in the “old” days, and I thought tough-love was going to whip her back into shape. What she really needed, and what others really needed who crossed my path in the past as acquaintances or even strangers in trouble, was more compassion, not grumpiness from me. It took me awhile to learn that mental illness is real, doesn’t just go away on its own, and that some mental illnesses will never go away.

I also had to learn how to make decisions for my daughter, to call police, speak out in court, press charges, and forgive myself for invading her privacy. Without my actions, she would still be lost in her delusions/hallucinations as she could not break through them on her own without forced help. Setting up a plan for her for when I am gone brought me a lot of peace too, as at the beginning of the planning, I thought it was impossible to make one, but it wasn’t, even with my modest financial status.

7 Likes

Got a dog… He’s therapy for all of us… actually our tenth dog… Christina loves him…as do we…

1 Like

How’s everything going Grace? Bill, my husband, just had emergency brain surgery in Boston… all is ok… benign… He and Christina, our daughter with Bipolar, are so close…
We have friends now – having their two kids and four grandkids over for the week. All tested negative for Covid… we’ll never have that… just the way it is… Most of our friends seem to have one child doing well and the other mentally ill or an addict or both… It would have been nice if one of the kids we adopted turned out… but our daughter is a sweetheart… so kind and fun to be with… it’s the loss of her dreams that hurts… Stay well…

2 Likes

Hi Grace. My 28 year old son is dx’d as paranoid schizophrenic. He cannot live on his own. Only been dealing with this for a little over two years, which actually seem like 20 years.
I don’t know who I am anymore. I don’t know who my husband is anymore. We are simply caregivers for our son. I don’t know how to get us back. It’s very scary. I just need someone to talk to. And vent. I hope someone can relate to what I’m saying. I guess I just don’t want to feel alone.

3 Likes

2 sisters with schizophrenia and my own, has made me quite hard to trauma, it mostly bounces off if there is a new trauma… I mean I see how my husband might react and he can be seriously affected for a week after something is said, whereas it is normal for me

I’m the one who has recovered.

I feel like we were the Graeae sisters scrabling around for one eye… and I have won.
My sisters illnesses, one dead one so unwell it is unlikely she will come back from it… has made my soul sad
Sorry. I can’t be uplifted by it all

3 Likes