How do we get better at living with having a child with schizophrenia


#1

It is nearly three years into the diagnosis of schizophrenia of my son. Its drained the life out of me and continues to.
Will I ever work out how to look after myself so I’m living again? I feel trapped in his world fearing him struggling alone. Any advice or encouragement from others that have managed to live their own life again.


#2

I feel the same way. It’s been a year since our son’s diagnosis. He was doing well and now has decided to go off his meds, so it’s a slow slide downhill now. I can’t make plans or do anything except go to work - which is even questionable because all I think about is what’s going on at home with him. This is a horrible disease. I’m definitely losing what little hope I had.


#3

I feel yr pain and loss i feel its a beareavement to there once joyous life they had and being so young, in return it makes us fragile as parents. Im not sure how to cope i feel numb my son first was admitted at 9 but looking back as a small child things wer not right not all the time but areas. I think ive been in denial but this last admission has nailed it. Looking forward inner strenth the forum here knowing we are not alone and rembering to take even if its small a slice of time for you just ti be you. Sending hugs


#4

it is s struggle for all of us who are dealing with this evil illness. I have been dealing with it since June 2015 and my life is never the same. I work 2 jobs and try to stay in contact with a family friend and my brother constantly since my Son is now hospitalized in California and close to my Brother and Family friend and he is miles and miles away from me.

I have been in contact with many law enforcement officers and the court systems and the lawyers to track him down every time he leaves home. I have spent quite bit of money to pay a family friend to keep an eye on him when he is not with me and spent money to get a guardianship and all I have a temporary guardianship. it is a struggle to get the permanent one since he is always escaping from my home.

he had used his credit cards to the Max and I have a load of Hospital bills and Student loans that I cannot possibly pay.

I am trying to enjoy whether days I have before he get discharged from Hospital because I know once he is discharged from Hospital, he will stop taking his meds and the cycle starts all over again.
I have been trying to get him Conserved in California ( assigned to public Conservator) so some load can get little light for few months)
I cannot live a normal life and all I can think is how he life will be in many years to come.
I am trying to set a Trust fund so he is taking care after I am deceased.

But I must have hope. it can get better. my brother is now 59 years of age and he was diagnosed like 35 years ago and he is been on medicine for the last 25 years. he is OK, he can socialize fine and staying home with my dad. he never worked but content with his life.

we should all hope for better tomorrow and think positive and things will start changing for the better.
take care of yourself jaxy. you deserve a break. Just think that your son with get better with the right medicine.

God will never abandon anyone. Pray always. prayers are powerful.


#5

I understand. My son was diagnosed in January 2013 after almost a year of hiding his depression. Once treatment started, Schizophrenia was in full effect. The horrible cycle of refusing medication and adjusting to the “New Norm.” It has been very difficult at time but I remain hopeful because in 2015, when he was medication compliant on Invega Sustenna (156mg), he was able to return to work; he worked at a grocery store 5 days a week, 4-5 hours a day. My son also was consistent with most of his appointments, taking public transportation on his own, being on time for work, etc. Unfortunately, he discontinued his medication and it took several months to get him back on his monthly injections. Now it has been approximately 17 months since restarting his injection and he is not functioning as well as he was in 2015. I am considering changing his medication but due to my work schedule and the lack of family support, oral medications may open up the non-compliant road again. Jaxy, this is a never ending story. I encourage you to attend the Family to Family 12 week workshop that NAMI offers, it gives you the support and direction you need, especially with dealing with the “New Norm” in your life. You and your family are in my prayers.


#6

Jaxy, it takes as long as it takes but I think you might get there quicker if you realize unless you take care of yourself, you won’t be able to help your family or your MIL. I wish you peace and and patience as you recover your life and help him recover his. God bless all involved.


#7

If you have a family to family from NAMI in your area then go to it, these folks are families who are trained to tell their stories to other families experiencing the same thing. Also if you can seek counseling for yourself, this was the very best decision I made for myself. My son’s journey to recovery is on going andbecause I sought counseling for myself IAM stronger and better able to help him , hang in there , prayers for your family. It is hard and tiring and confusing I know


#8

Have you ever attended a NAMI Family to Family class? My son was diagnosed a little over a year ago with sz. He has been hospitalized 7 times in the past year and 1/2, and we’ve been on a wild, scary roller coaster ride with him. I also felt like I was losing myself, and I felt hopeless for our future. Then when I started taking the FREE F2F class, I found others with whom I could connect, and I learned so much in the 12 week class. The more I learned, the more empowered I felt. I learned how to let go of the things I could not control, and I learned the importance of taking care of ME. If I don’t take care of myself, how can I expect to be able to help my son? If you are interested in looking into a class near you, you can find that info on the NAMI website. I pray that things will start looking up for you soon.


#9

Thank you all for your comments, it feels like a big hug!:slight_smile: My son, 21, not right since 4 diagnosed at 16, lives with me or at his dad’s abandoned filthy house with a broken air conditioner. We live in Florida and just survived Irma, sheltering at my work place with 18 others and our 6 cats and lots of dogs! He is allowed to smoke inside his dad’s house, but not mine. He has started doing that while I am gone at work and all I can do is bitch about it, or appeal to him that it is killing me and 2 of the cats with allergy/respiratory issues. He does nothing but sleep, take baths and watch videos, smokes and binge eats and throws up. He does not even clean up after himself and it is wearing me out. He doesn’t seem to remember how to do anything. It is like he is 8 again and I am trying to teach him skills to be independent but just doesn’t do anything unless I am right there directing him and I am 61 and work long hours and I’m exhausted and my fibromyalgia is raging. I have to get back to gratitude that he is safe and takes his meds and keep praying that he will begin to take charge of his illness, before I can’t anymore. Thank you all for being here xoxo


#10

What is your plan? What will happen when your gone? Do you have any assets or trust or planning or not worry about it like me…?


#11

Maybe he can’t do any more right now. I’m sorry you are exhausted. Please take care of yourself in whatever small way you can. In my experience, we must find things we enjoy and put ourselves back on the list. I hope things improve for you and your son.


#12

I have a friend who is a caretaker of a man in a wheelchair. He lives in his home rent free and works and takes care of him. I hope to do that, keep him in the only home he has had. When my ex pays off the HELOC, I am told to create a special needs trust for him. Otherwise, I will have to appoint another guardian and maybe get him into Volunteers of America housing. Or move to a county that has more resources…Trying to focus on self care…


#13

Good plan…


#15

Thank you everyone for sharing and for good advice. It is crazy to think what we all go through with this illness and amazing how everyone finds strength to stay afloat. I get so extremely tired and run out of ideas to help my son. I feel very overwhelmed most of the time. This illness certainly changes your life. I am watching someone I love struggling trying to fight for sanity but they are not getting far. I’m watching, feeling helpless and no matter how hard I try to find a solution I can’t. Not being able to help a lot or save my son torments me. I am looking after myself better and spending more time with friends after isolating myself for over two years, I really didn’t have the energy before. So trying to keep the cup a bit more full.


#16

I feel the same way, my daughter will not take her meds either. long and slow is right. If it was quick then they would understand better.


#17

I’m checking back in a week later…my son’s court date was postponed to November 9. He threatened my husband again today. We live in hell. Literally.


#18

Hi Maggie, I’m on guard all of the time with my son after experiencing attacks in the past. I have to say I’m a lot safer with him taking clozapine/clozaril. We have a court pending from about 3 years ago, we have been pushing to move the charges from criminal court to mental health court. We have it now in the high court for that decision and I think it will end up in mental health court. We were very fortunate the lawyers felt it was a duty of care to help so they saved us 50,000 in fees. We would not of been in the position if it wasn’t for the treating doctor at the time not listening to us in he first place telling her that her treatment was not working as well she said he should just go to prison grrrr so we had to get 2 other psych reports which proved her wrong.
I have my son living in his own place so I get the space with goals to try and get a bit of my life back but by bit, but needs a lot of help with his finances, cooking, groceries and cleaning. The worst thing is his isolation which is very important to address because he will get unwell being isolated. I read the ones that get better are the ones who have the support from family and try to get there life back of some sorts.
My son has only my husband and I. But I was rescued wit respite services that are funded by our government so I used it to get my son a mentor to spend 3 hours a week. We need a lot more of this but it’s a start…we all have to keep trying and keep hope or find it somehow with the little strength we have.
Most important for you Maggie and your husband is safety first. Sending love and strength, there will be light at the end of the tunnel and try and let go at times to take care of yourself.


#19

Hang in there Maggie, it can be hell


#20

THank you. Yes, his psychiatrist wanted to start him on clozapine but he refuses to go to the doctor. He’s still on Invega so we have about 1.5 months until something really bad happens. In the meantime, I have got to get him out of our house. I have no idea how but it has got to happen. Thanks for the advice and words of hope!


#21

I have seen signs of struggles in my daughter all her life; but she has always functioned well and managed a home, family, college and a business without many outward symptoms until recently, when she was hospitalized and disagnosed w/SZ. She is responding well to medication right now and seems to be fairly happy; but she is still not her old self of course. I am grieving the loss of my daughter as I knew her, celebrating any signs of her true self, and working hard to get to know her as a person with a severe but controlled illness. She does not seem to be willing to talk about it; though I have not really tried to make her in case she is not comfortable talking about it yet. I am really just thinking short-term now. It looks to me as if she she will need to live on SSDI. I have a spinal cord injury myself so I know how living In subsidized housing with Medicaid can help lessen stress at least. I am wondering how to approach the current day to day things just now. For example, the holidays are approaching. Are there any gifts that a person newly diagnosed may enjoy? I looked at a weighted blanket; but it is beyond my budget. My other daughter and the one recently diagnosed is a single parent and both of their children are all in their teens; so no one has much money. I realize everyone with any disability has different needs and tastes; but I am wondering it there may be some items that may have common interests for people who are recently disgnosed with SZ. She does seem interested in home decorating but has trouble focusing on reading books and magazines, She does need clothes; but seems a bit tactilly sensitive. I will focus later on the sadness each of us is feeing; but I am happy that everyone seems able at present to focus on the one with the most to bear. Any suggestions appreciated. TIA![quote=“hope, post:6, topic:4363”]
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