Family and Caregiver Schizophrenia Discussion Forum

Tell me your caregiving story

Tell me about your experience with being a caregiver for Schizophrenia. I would like to hear about the challenges you face, the struggles you feel, and anything else that you find relevant to the topic. My hope is to create something others can see and not feel so alone in the caregiver journey. I have tried googling about the challenges and the experience of caregiving, but there is little that talks about the day to day experience of being a caregiver.

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I don’t want to retype the pages and pages I have wrote about my caregiving for my son with sz but feel free to look through all of my many posts, I think if you click on my name it might take you to them I’m not sure and feel free to message me if you have anything you’d like to talk further about.

Thank you so much. I’ll be sure to look through your posts.

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@BRitt you’re in the right place but you should spend a few hours reading through these heartfelt posts. I’m a nube (19 year old just received SZ ex) but have found great solace in these tomes. Drink deeply from these Pierian springs for wisdom and insight into our challenging reality.

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Welcome to the site. I agree Britt that the best way to learn about the day to day trials of caregivers and their loved ones is to search this site and read the threads. There are hundreds and hundreds of different things you can learn. I learned so much on here when I first came. The caring people here who shared valuable information helped me get my daughter stabilized on meds and into a successful new life. I come back regularly too.

Are you a caregiver? What is your story?

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Hi, thank you for your response. I am a caregiver and have been for almost 9 years. I started dating my now wife when I was 17 and at the time knew nothing of her condition. After we graduated the fear of moving forward through life caused her to become severely depressed. I took her to every free and low cost clinic I could find, but nobody would help us because of our age, we were 18 by this point. I went to bed every night exhausted from trying to stay up, and I woke up every morning fearing that she may have taken her life. This went on for sometime until I couldn’t take the stress anymore and broke down to my parents. My parents got her parents involved and she was sent to a psychiatrist and put on anti-depressants. At this time she was experiencing SZ symptoms, but hadn’t told anyone. Eventually when she finally did tell me, she indicated that she has been hearing voices since childhood. The anti-depressants help a little but not as much as we had hoped. After a few months she said she didn’t like her doctor and got herself of the meds.

For a few years she seemed mostly normal, just anxious and easily upset, but nothing seemed that bad. Of course she was just hiding the struggle. 5 years into our relationship, just before we got married, she told me that she heard voices and likely had SZ. I was the first person she ever told and I was happy about that, but also conflicted that it took so long for her to tell me. Especially since I was studying psychology and had made comments about how mental illness is misunderstood and how people stigmatize mental illness too much. At the time she did not want to see a psychiatrist because she said she was in control and she only heard voices that she said she could ignore. This I found out not to be the case but I looked for whatever non medical treatment I could find. CBD capsules helped her mood, but just not enough. She became suicidal shortly after we got married and I had to reach out to my parents for help. At this time they found out that she had SZ and we were able to convince her to see a psychiatrist. She got started on Abilify and began improving. The voices almost went away completely. I didn’t know it at the time, but her paranoid delusions were still present, she just wouldn’t let anyone know that she felt everyone was out to get her and looking to hurt her or lock her away. It’s also important to note that she has been called extremely high functioning, and this can make noticing her symptoms very hard for people who are not aware. Also most of her delusions are tied to things that seem to make some sort of sense (ex, if I go get treatment for sz they will put me in an impatient facility and keep my drugged up).

About a year after she started the meds we moved so I could go to grad school. The year following our move was very hard. The delusions got worse and with both of us being under stress from our new situation she turned to alcohol and weed. These two things are obviously not good for her, but its hard to convince an adult that they can’t do something. The delusions got so bad that she thought I was trying to have her sedated and locked away and she didn’t tell me because she thought I was trying to hurt her.

The experience I had at this time was extremely stressful and I am still not out of the woods entirely. Not knowing the extent of her symptoms I would spend so much time trying to rationalize with her and I could not understand why she just wouldn’t budge, or she would see my point and agree to it but then reject it. It got to a point that I would gauge how bad she was doing by how confused and lost I felt. This was so bad that we almost got divorced a number of times. We had to do something and in a moment of clarity she agreed to stop smoking weed. This was a start.

I came across an article that showed how the keto diet could be used to treat SZ, and specifically delusions. (I have a post that explains the logic of how the diet helps). It took about a month but the difference was night and day. I don’t want to sound like I am over selling this, she is considered high functioning and holds a job no problem. But with her on keto, I was finally able to see exactly how many symptoms she had. She was not a new person but very different in a positive way. She was more confident, could think and process information much faster, and could handle stress without buckling to it.

That brings us to now. We have seen the effects of her dropping out of ketosis and she goes right back to where she was. We have also determined that she can’t drink anymore because she has a problem controlling herself. Things are still up and down but they have improved, and just in time. The stress from caring for her made it so I almost failed out of my graduate program, and I am now on anti-depressants to help me through. I can’t imagine how tough this is for many of you because I am struggling and shes high functioning and we have found many answers and our own treatment routine. I have been largely dissatisfied with psychiatrists. I in no way mean to overstep my place, but many of the psychiatrists just don;t give her the time of day and they prescribe medications that make things worse. Anyways we have a good system now and I can see and feel everything coming together. We have hiccups here and there but shes able to return to clarity much faster than before.

It’s weird, I intended to spend a lot of time talking about my actual emotions and experiences but even though I know what I went through, I can’t seem to remember specifics.

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I really feel for you. I’m going through similar problems with my wife. We have been married 14 years but her psychosis started just three years ago. Like your partner, she believes she can manage the voices herself, although she spends much if her time talking away to them instead of with me or other people.
She spent 2-3 months in psychiatric hospital in 2019 and was getting better on her meds but has now gone off them and is back to talking with the voices again.
It’s hard for me and our daughter, who is just seven, and I find it hard to see a long-term future if she refuses to get help

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I can feel how tough your situation is. My daughter has schizoaffective disorder and is highly functioning as well. Her situation worsen when she is under stress, mostly from school work and social interactions. It helps when I was able to help her de-prioritize school work and talk through some of the issues she faced with people. Less stress always helps. At times it can be tiring for me, cleaning up after her, telling her to keep the volume down, etc. At times, I may say things that I don’t mean. But it could get her worried, so that is another area I have to keep reminding myself of. Best of all, lots of love, and when I am tired, she would volunteer to help even though she hates cleaning up. That makes my day.

Hope the best for you.

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Chong. We have a recently-diagnosed 19 year old son w SZ. Did your daughter have other issues as a child? Our son was ‘different’. Struggled w school. Very few friends. Often explosive in anger demonstrations. But some spans of normalcy. Just curious as to whether adult caregivers with SZ kids had similar experiences or more went from “perfect” to SZ. Thanks

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Hi Sando. My daughter started to hear voices when she was 9 or so. She was very much a bubbly happy little child then and her adverse behaviours emerged around 11’ish. It started off pretty mild like not waiting at the appointed place for pickups. When I asked her why she went to another place to wait, there was justifiable logic to it. It’s just that most people with experience won’t have thought it that way. Other behavioural issues such as not wanting to go to school, becoming rebellious in class likely stem from one or two teachers who treated her unfairly and also being bullied by other children at school. Moving her to another school didn’t help as she lost a few good friends who were close to her. Currently her biggest challenge she needs to work on is organization. She gets frustrated often because she forgets and misplaces things. Take away the frustration and she is back to her bubbly caring personality.

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Hello Sando,

Had no clue that my son would have a serious mental illness. He’s 24 years old and was diagnosed with SZA at 20 years old. Problems started about a year and a half earlier. As a child-sweetest, kindest boy you’d ever meet. Average grades, had a few close friends. Easy going - rarely a problem. A few months after high school, moved in an apt with friend and everything went downhill. Apparently smoked lots of pot. 5 months later, was evicted from apt - came home and the paranoia started. Pot does not agree with him, although he still uses when he can get it. Son was pretty reserved, socially awkward in high school, but had no idea of a serious mental illness. He’s been on meds for 4 years. Still heard voices till recently. He has problems holding a job, organization-messy room with dirty dishes etc, memory, handling finances - spends every penny he has. I wish things were better for him, but I know they could also be worse. I try to be thankful for everything that we have. I know he would love to have a “normal” life. He’s still a kind person - willing to help anyone in need. It’s difficult to communicate with him - speaks in few words. My biggest frustration is trying to get him to cooperate for his benefit. I’d like to apply for disability so he could have a steady income - albeit less than $1k but he would have to commit to work only part time so he would not disqualify himself. He refuses to do this and keeps trying to work full time. The most he’s worked at the same job in the past 2 years is about 7 weeks. Most jobs lasted less than a month - many about a week. Don’t know how to get thru to him that this would be to his benefit. Also concerned with health insurance. He will “age out” from Dad’s insurance in about 18 months. I’m hoping something will happen between now and then to solve the insurance problem. Wishing you, your son and family the best. Take care.

I am glad that you are posting here @TXm0m , @Monkey67, @Sando, @Chong, @BRitt. It is soooo hard to caregive long term. Coming here is a way to get ideas, to keep hope up, and to keep caring for yourself too while you care for your loved one. Much of the advice and support I got here kept me going, and when my hope was almost lost, things came together for my family. I hope you find ways to improve things little by little. I remembered reading posts from @Catherine when my daughter was at her worst (thank you again Catherine) and from @hope (thank you again hope) among many others here. The hope and support given helped me to find a way through the maze of what to do. Some meds work well, while others don’t, some psychiatrists are helpful, while others aren’t, some advice is good, while some is harmful. It is hard to weigh it all out. Keep coming here to learn, and to share, that participation makes this site so, so valuable.

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Thanks for your advice. It’s very comforting to learn that things have improved for you. It gives me some hope for the future

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Hi @Sando. Re your question about whether SZ kids had issues as children - My son was diagnosed last year with SZ as a 24 year old. He was definitely a “different” child and I have been curious about this too. Is it a condition that is there when they are a child, but dormant? He has always been sensitive to noise and movement and has always had difficulty controlling his impulses. He couldn’t sit still at school. He would have night terrors often and sleep walk. His school had a psychologist visit to assess him (one of the teachers suggested he may have Asperger’s Syndrome). It turns out he doesn’t, nor is he autistic, but there was definitely something “different” about him. I noticed as he got older (teenager) he became less able to organise himself. Also he became depressed and suffered severe social anxiety. I think a change was taking place gradually over time until he had his first psychotic episode at age 23 and then the changes happened quickly. Now he is like a different person in many ways, and yet still himself … Sometimes I see a glimpse of that sweet, kind boy and cling to hope that he will be okay.

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@Lilies, welcome to the forum.
.
You may be interested in looking over some of my post history concerning my childhood, as I was/am a bit of a ‘different’ child similar to your son (sensitive to sound, etc). I became florid with Schizoaffective Disorder (SZA) at 26 after a long prodrome. I recovered and entered the white collar workforce. I post here to offer a ‘lived’ perspective and share experiences as a part-time caregiver.

I try to limit comment on these sorts of threads to avoid unduly interfering with grieving and fellow feeling processes. I’ll mention, however, that everyone changes with experience over the course of their lives, especially after trauma-- caregivers and the cared-for alike. You are not the same person you were before because of your son’s illness and neither is he.

I caution caregivers to have care not to be paralyzed by grief, as the people they care for are still there and need your help and succor. If anasognosic, they may not fully comprehend why or how, but will suffer a form of grief or loss over their past selves, and may be confused, angry or depressed and dispondant over the loss of friends, jobs, future plans etc. I find SMI analogous to physical injuries to the brain like strokes, tumors, head injuries and the like which have varied outcomes and ocasional success stories, but deep-down, those who recover are never quite the same, nor is it necessarily expected.

There are some who view the ‘special children’ whose sensitivities guide them to recover from such traumas as modern day shaman, since their paths echo those of more ‘primative’ societies. My Jungian therapist thought that of me, I suppose. While I considered answering that call as a healer, the long road to becoming a therapist was not for me, so I do what I can through this forum as humbly as I may. It often pains me to read through the grief of caregivers at how their charges are stuck on their roads of transformation, and I can offer mere glimmers of light to guide them out of their mazes.

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Your son’s story is so similar to my son. My son had issues with sensitivity to noise, touch…as early as preschool, unable to function in school at outset. He was different child as well, very bright but very reactive to change. He too was thought to have aspergers and does not.He was then thought to have mood disorder in his late teen years. He developed psychosis at age 21 diagnosed schizoaffective. . He is currently medication, holding down a part time job and working through substance abuse issues in a half way house. This was after teen and young adult years of hell, mood swings, medication refusal, hospitalizations, 3 prolonger periods psychosis and anosognosia. After outpatient treatment order, another hospitalization he gained some insight while on injection. He has switched back to oral antipsychotics and has been stable 18 months with no positive symptoms. His organization and motivation are still challenges, but he works, enjoys life, has couple friends and I see glimpses of the sweet boy before he was lost in psychosis more and more each day. He is 26 years old and has gained more function than I ever thought possible given how bad his function was when he was at his worst.

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Thank you @Maggotbrane for the welcome and words of encouragement. I will read through some of your post history. It’s very helpful to have people with lived experience of illness adding to the discussions. I’m glad to have found this forum, the people are very respectful and helpful.

You are right, I must concentrate on supporting and encouraging my son where he is at and without expectations. We all change over the course of our lives and he, though very different now, is still my beautiful son and I love him to bits.

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@Elsa - Yes our sons do sound similar. My son is also very bright - the way his mind works still astounds me. He used marjuana for a time when he was around 20 and regrets this badly now as he believes it is what pushed him over the edge and caused his psychosis.
He took himself off his meds twice - the first time landed him in hospital. The second time he did it very slowly and has lived without it for the past 5 months. So far okay but not brilliant. He’s studying and living in student accommodation. Took off to another state to buy a car recently, didn’t tell anyone, no-one could contact him. We thought he had been abducted or had an accident or something and filed a missing persons report. The police found him in his home when he finally returned after a week. Such a scare!

That is great that your son has a part-time job and is managing his life. And that he has you to care for him. I hope that he continues to do well and that you take care of yourself also.