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.

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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.

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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.

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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

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This is so beautifully said. Thanks for sharing

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Happy cake (anniversary) day!

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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.

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Get a dog.

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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.

Having pets really helps me.