Family and Caregiver Schizophrenia Discussion Forum

Please don’t think this

Family
#1

I’m hearing from a lot of people on this forum how distressing it is to see us lead, for want of a better way of putting it, smaller lives.

Yes schizophrenia stole my right to a family, but truthfully there are too many people on the planet and both my husband and I are mildly autistic, so in a way from school days we have not been called forth to be the surviving fittest.

It’s taken my right to a full time job in a high powered role and evenings and weekends socially being fantastic and hobbies and etc but honestly I feel like there aren’t enough hours in the day as it is, when my only responsibilities are towards myself, my husband and mum and sister, who live 35miles away…
I cook healthy home cooked food, from scratch almost every day, (I’m trying to be vegan, and my husband is omni.) I clean almost sufficiently and do all the laundry
I go cycling when the weather is not too raining or windy on my electric bike. I have hobbies like art at the moment, this is an ever shifting thing my hobbies (and I have long breaks from having any)
I watch a lot of tv, I’m addictive and shop on line far too much…But frankly that’s about it.

Overall, I’m not busy like I was when doing 6 months of full time work in my late 20’s, sailing at weekends, cooking for my not live in partner, seeing mum etc

I’m painting quite a rosy picture, but I’m 46 and was diagnosed age 18 the right meds have stabilised me, And I found the man of my dreams.
Someone kind enough and gentle enough for Sensitive me.

I have one sister whose schizophrenia got worse by the year and was hit by a car and killed when she was 25. I think I’m just realising that it was really mchildhood onset beginning age about 12. Worst case then I ever heard of on these forums.

My youngest sister was high achieving and was struck with late onset aged 35, 7 years into non compliant schizophrenia. She does not agree to any treatment or help. Lives with our mum.

So, yes there Are different outcomes…
But I had my share of lying on the couch all year reading or staring into space, not exercising a bit for years and also several years of severe psychosis

For me, my own illness - It doesn’t feel like a loss
It never occurred to me that people around me were grieving
I guess it is just taking everything life throws at you and going with it.

I think people could really misinterpret not doing anything as being bored unfulfilled or lazy even. It doesn’t feel like it… maybe you know this though and grieve because of that?
But with support I’ve lived an exciting and varied and fulfilling life.
I am very lucky
Anti depressants are so important
I’m going to start a new thread about it. They have been so helpful and completely life changing for activities and emotional stability, they also help a lot with anxiety. And all doctors now recognise that depression is a huge part of life for most schizophrenic people
I’m happy as a constant rather than enjoying maybe one day out of ten.

Capacity changes so much year to year, month to month
With treatment, compliance, care and support bigger than anything I could ever give anyone recovery is possible
This makes me feel I have stolen my mums life actually… with all 3 of us schizophrenic she has a really difficult deal.

When my capacity was low, I did also hate it… but I did what I could
Adolescence and early 20’s can be pretty awful for everybody

I’ve heard it said that everyone is always doing their absolute best at any given time

I hope this is helpful
I feel like my family has the full range of schizophrenic illness
I know not everyone makes it but no matter how unwell there is hope
Several people on the other forum are older like me and stable like me… even if we had a bad prognosis earlier on in our lives

I’ve gone a bit off topic.
Feeling sad for the person is not as necessary as it feels I think is somehow my point,
If it is relevant for you now, I’m not uninterested or negating… sorry if that came across
But these things can change in time

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#2

Well said. When you mourn the “loss” of a loved one to a mental illness, you’re actually mourning the loss of your idealized notion of their potential and past self. But, don’t forget, they’re still there, transformed and full of new challenges and different potentials. Try not to let your grief show, or make unfair comparisons. It reminds me of a pivotal scene in Ordinary People, where Dr. Berger asks Conrad what was the one thing he did wrong, and he says “I hung on.” It’s about learning to live with this new reality and making the best of things—as best you can.

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#3

I always enjoy your comments- this last comment is really helpful for me right now- my son stopped taking meds and passed out with 5xs the legal amount of alcohol. Hospital now as of today 30 day program.

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#4

30 days is a good amount of time, potentially enough to stabilise on meds
If he needs or can stay longer do…
Hospital can be so beneficial… if med compliant,

My sister has Quite severe alcoholism… has not had a drink for a few days / weeks…
She seems a little less angry and abusive

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#5

I love this, it brought tears to my eyes - I will try not to ever forget

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#6

Thank you three for this very thoughtful and honest post. I find this so very helpful. I am so happy for you that you made choices that prioritize your health and happiness. Thank you for sharing this with us. I am so proud of you, I hope that is ok to say. Take care and keep sharing, please.

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#7

Thank you for saying and of course that’s okay to say
I’m really happy to hear it’s helpfull

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#8

all my best to you and your son.

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#9

I really appreciated your post. You are very honest and forthcoming. Pertaining to “a smaller life” as you started out discussing. I have had people comment on that toward me (not here but in real life) I had to go on disability 10 years ago, my health was tanking due to self neglect and all of the massive stress I endured caring for my son. Since he got stabilized and my health has improved, I have been so content and satisfied with a very small and yet stable life. Some might say boring, I like to emphasize the word stable —Stable and peaceful feels like the ultimate in success to me after all my son and I have survived. I’ll take it. Happily so.

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#10

I totally understand your emphasis on stability.
After what we have had previously it is like water in the desert
It is so great for me that my relationship With my husband is not very pressurised.
None of my previous relationships would be possible long term, and being on my own would not have been an option

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#11

It was so nice to read your post. My beautiful doughter is struggling the last 6 months and this is so new for us. I have been reading all the posts the last months but i couldn’t find the words to participate to any conversation. It has been a crazy rollercoaster for all of us and i feel that i don’t have the luxury of stopping and talk about my feelings as mother, her health is our number one priority right now. I do feel like i am mourning for a child when she has bad days, but by reading your words it gives me new perpective, maybe changing expectations is another way to look at it, it will be wonderful if she gets to live a life as meaningfull as yours. The most frustrating thing right now is not knowing what the outcome will be, for who am i fighting? Does she know what is happening, can she feel the love? She tells me that the only reason she is not giving in to what the voice is telling her to do is me and her dad, will that be enough? I went to a therapist myself to get some strength but i didn’t feel he could understand what i was saying, talking to my closest friends has helped me more but ofcourse they don’t have answers, they are just good listeners and that is all i need now.

3 Likes
#12

Sorry to hear about your daughter’s illness and welcome to the forum.
How old is you4 daughter?
There are so many different delusions, severity Varies within one person’s life as well as between people
As well the prognosis can vary even the worst prognosis can turn around
Generally, getting well - taking medication is the first priority as nothing can happen without that

Has your daughter started on antipsychotics? Is it helping?

#13

My daughter will turn 20 in two months. It all began with a depression last January, psychologist couldn’t help much although she immediately started setraline. She first heard the voice in June which was very scary for her, voice is very hostile and commanding her to hurt her self. Maybe it’s important to say that she was a very happy child growing up, always considerate for others, funny and social so we never expected that her depression would take a turn like this. I have never known about the illness, never known someone. I now spend my nights reading books and searching the web, sometimes that helps me to understand what she is going through but mostly I get more confused. My daughter is now hospitalized sinds september, she is on medication, invega and olanzapine (maybe the names are not correct?) but we haven’t seen much improvement. She is also doing cognitive therapy. Maybe once a week that she is having a good day and I cherish those days. Seeing a glimpse of her smile gives us hope… Dokters are hopeful, they say that we catched it early and she has all the support she could need but shouldn’t we be seeing more improvement? Even her boyfriend is sticking around and hasn’t given up on her. I try not to be inpatient but that is oohh so difficult. I won’t say I want us to get back to normal, I realize that it will be a new normal. I just want her suffering to stop, no one should suffer like that… That’s why reading your post gave me hope, hope that she will see how strong she is and stop believing that she is weak. Hope she will find a way to enjoy life and keep fighting for her right to enjoy life… Thank you…

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#14

Hi , My son was diagnosed at age 19 years , he will be 23 years old in Jan 2021 , we have good days and bad days . Sometimes you have to give the meds time to work and if not perhaps change them . Everyone is different so what may work for one may not work for others . Sounds like she has insight which is amazing in itself as having Anasognosia (no insight) is part of the illness and trust me ,just that part of it is soooo difficult . Discuss with her doctor that there is not much change with her and see what he suggests . My son is on Abilify 25mg and stable but still has negative symptoms as well as positive ones from time to time .He has tried 2 other meds which were not good for him . Be patient , learn LEAP and i feel a big part of healing is to show her how much you care and love her . I would start to write a diary with dates when this started and what meds work or not and her symptoms and triggers and don’t stop to educate yourself . Its been almost 4 years and i’m still learning . NAMI is a great place to start . It is not easy being a mother and watching your child go through this horrific disease but you must take one day at a time and try and think positive :pray:

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#15

Thank you for sharing your experience. A diary is a good tip, I will certenly start. May I ask what leap is?

#16

It’s a way to help get close to your loved one especially if they have no insight . I believe your daughter does have insight but I’m sure you may find this helpful either way .

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#17

Yes I agree, I think the LEAP strategy is useful in any situation with wide differences in opinion. Politics and religion come to mind. While my recovery predates LEAP my psychologist intuitively employed many of the tenets of LEAP and it helped me in developing insight and openness to drug treatment over the course of a year. I’m not convinced it leads to insight in all cases, but agreements and plans that improve carer and cared for lives are certainly feasible with hard work.

#18

In the recent video on the healingmindsnola.org, Dr Amador says that the vast majority do not gain insight. He says they can come to accept medication.

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