My son s illness is the main focus of my life


#1

My son was diagnosed about 2 years ago and since then I have not really felt joy the way I used to. I am always waiting for the next shoe to drop. He takes his medication, but he spends so much time isolating himself in his room. I am so heartbroken for all the things he is missing out on and any smile or laughter we have together means so much to me. I often feel am in auto pilot going thru my day, he is always in the back of my mind. He is the youngest of 4 children and the older ones understand that I need to focus more on him. I feel a great responsibility to make sure he gets to doctor appointments and other daily things. I also try to get him out of the house to go to dog park, store and maybe lunch on a good day. This sz illness has taken over both of our lives. Does it get any easier as time goes on?


#2

Yes. And no.
I think over time we get used to the idea our children are not what they used to be. Some times we even have really good days or weeks. In that sense it gets easier to live with the illness.

But then there are crisis and really bad days or weeks and we feel like the rug has been pulled out from under us. It is not fair…we had learned to adjust and now we seem to be going backwards. That is definitely not easier.

It has been a little over 8 years since the official diagnosis, but with hindsight can see the struggle really began over a decade ago. There is no shining sense of accomplishment by the world’s standard my son can claim. Sometimes though he will make a joke or smile about something and his eyes light up like they used to when he was a child. Somewhere my child is still with us amid his terrible struggle. Yes the illness takes over our lives, but those beautiful moments make it easier to go on.
From a practical standpoint, strong supportive friends and family helps. It helps too if you find an activity you enjoy and do it. We are no good to our children if we are burned out so remember to take care of yourself too.
And know through this forum, you are not alone.


#3

It has gotten easier for me with my sz son…at 2 years into treatment I was still much like you, lacking personal joy and purely on autopilot, My son is 33 now and is well into probably 7 or 8 full years of steady effective treatment and things are better with each passing year, not so much because my son does more with his life but because I have accepted that he is content with his own limitations and his limitations were only making me miserable and sad, not him. I started out (once I saw that the meds were working for him), I was trying to get him to get his GED and try to work part time and get his driver license and talking about all kinds of things that would eventually lead to him living on his own again and each time I pressed him on these things–his progress would stop and in some cases the delusions and confusion would return.

My son is happy and stable on a very simple and uncomplicated daily routine that I orchestrate. He gets up and eats, takes his meds, watches a little TV and goes for a long walk or goes to the gym nearby depending on the weather and usually I go too. After that he goes with me to run errands, pay bills, shop or go to doctor’s appointments, whatever is on the agenda that day. We may also make a stop at a local park or go to a farmer’s market or local festival, whatever is happening. Later he checks his bird feeders we have out back, maybe waters the trees, he also recycles everything he can, paper, cans, plastic etc…he may do a few household chores on some days and then he watches TV the rest of the evening and smokes outside with a neighbor…he stays up late and sleeps in.

On occasion he will skip TV and go to his room and listen to music and look at his coin collection. He is so set in his pattern now and so stable with it that I can often go off and do my own thing for the better part of a day and he is fine. He will text me with questions and always ask when I will be back but he manages okay. When I am out of the equation he may skip exercise that day or he may not eat as balanced that day, or he may smoke more cigarettes and watch more TV that day but he is still okay and I am still off doing my own thing which gives me back my personal joy. In a couple of weeks I am driving about 5 hours away to see my best friend from high school and I am spending a night (or two) with her so we can catch up. This will be a first for me in 12 years…I am excited and nervous and my son is the same, he feels very positive that things will be fine and he is happy that I am trusting him. Am I scared, yes I am but it is just an old habit that will take a long time to go away if ever. I think he can do it and I know I can do it.

I have wondered so much about whether my son mourns the loss of the things he doesn’t do, lack of friends, lack of a social life, lack of a job, lack of complete independence etc etc etc…and recently he had to fill out a lengthy questionnaire at his psychiatrists office and it took him a long time to fill it out he took great pains to do it completely and my son is exceptionally honest even if what he believes is true is not the reality I see he stands by his truths.

I didn’t want to interfere at all but the next morning while my son was sleeping I stopped in the office and asked to see his questionnaire and the psych nurse commented how positive he scored on it and how tremendously well he must be doing overall. He wrote that he had plenty of friends, he was very satisfied with his social life, he felt well loved and well cared for, he felt safe, content with the amount of activities he does, content with the amount of money he has, satisfied with his goals and accomplishments in life and the answers went on and on like that and very detailed. These answers were my son’s truth as he perceives it. Not mine as I see him. I explained to the nurse that these were factually inaccurate to someone like me who lives with him day in and day out. He has no real friends just the neighbor that smokes with him in the evening but that is it. I explained he didn’t really do very much in any of these areas --but she said to me this is how he sees it and he seems happy and content, it is not a “problem” that really needs to be “fixed” in his situation. I had to agree with her on that. She and my own therapist have said, that I need to focus on my life now, what I want to do, things I want to accomplish and my son knows I love him and will always be in his corner but physically I am free to do what I need to do within reason. I am not sure I’d leave for 2 weeks or anything (yet) but a couple of days at a time I think is do-able. Life is good again, for now. I absolutely believe that things can get better, given enough time, effective meds and a lot of patience and resilience. My best to you and your son.


#4

Yes, it really makes you appreciate the small things, and having a child with sz is a very humbling experience. On a good note I have a new sense of empathy and compassion for others. I have new insight when I see a homeless person struggling , and I I feel sad for others who don’t believe mental illness is a real illness. We are all stronger than we thought possible dealing with this, even tho some days it definitely doesn’t feel that way.


#5

Hi @irene. What got better for me is accepting that my daughter has a very serious illness and that I’ve done everything that I can think of to help and advocate for her. I do believe some our children do get better with good support but sometimes it isn’t enough and some of our children the illness worsens over time. That is what’s happened to my daughter. Her cognitive abilities have dropped dramatically and she is completely unable to care for herself. After a time sometimes a certain hardness sets in when a parent have to deal with their child’s illness when nothing works or gets better. Today I cried a lot and that helps a great deal. I can only hold things in for so long until it erupts into raw and unremitting grief and crying is the only thing that helps.

There are many times for me - such as now - I can only get through the reality of my daughter’s devastating illness hour by hour and force myself to focus on other things. My focus now is raising my daughter’s 6 year old daughter and 9 year old grandson. My other two daughters, some very close friends of mine, and at times my ex husband have been a huge support for me and my grandchildren. Without them I don’t know what I would do. My siblings live in another state and are not really aware of what’s going on in my family nor do I expect them to. People have their own lives and problems to deal with.

I’ve come here for support where I know folks understand the challenges I am going through. Families who’ve never experienced mental illness in their families have no way of understanding nor do I expect it. It’s often a very lonely road for us and coming here for support has given me a lift that I’m not alone – we’re not alone.

For me my one little bright spot has been my daughter’s mental health care provider. She’s been with them for over 15 years and they’ve never given up on her and have gone out of their way to help her. I can no longer help my daughter without damaging my own mental and physical health and I have to stay strong for my grandchildren – they count on me to love, provide for them and keep them safe. It’s tough raising children at my age but I feel I’ve received so much more from them. I pray every day that I can hang in there mentally, spiritually and physically until they are well into adulthood.

What you are going through is very difficult and there are no easy answers. Make sure you find time to care for yourself so you can continue to help your son. You are also very important and please don’t forget that.


#6

My son does continue to be the main focus of my life, while at the same time I have added distractions that help keep me strong for him. If I think about him and his situation without a break, I can feel myself becoming vulnerable to depression. This illness is a rough trek for all of us.

Since I was fortunate that I was able to work in a field that was my passion, I have returned to work on a volunteer basis. While adding work back into my life seemed like a miserable idea at the time, and was a struggle at first, (the line “I’ve forgotten more than you will ever know” felt like my theme) my work does occupy my brain and knocks Jeb out of it when I am at work.

I really, really needed Jeb’s situation with his scz to be out of my brain for periods of time.

I look out at his home just as frequently, but can now turn my thoughts to other matters.

They have a journey that has changed our journey. We can do this.


#7

I am able to enjoy life again, knowing that while my son is ill, he is safe. He is not as content about his life as I wish he could be, but I know there is nothing more I can do to help with that.

My problem now is that my continued involvement with my son is causing some marital problems - my husband, who is not my son’s dad, wishes I would have more time with him. I feel that is partially HIS doing, since he will not interact with my son.


#8

I don’t know if my husband, who is Jeb’s dad- yet- would have gladly dumped Jeb on a street corner, finally realized he didn’t want to put the matter to a choice for me - the outcome would’t be what he hoped it would be, or if he finally found enough compassion to make sure his son was safe.


#9

Finished this last weekend. Definitely a good hobby for me.


#10

Both my son and my husband (also his dad) have tried the “choose him or me” thing on me.

I’ve told them both I would never turn my back on either one of them, so that didn’t work for me.

However, my husband isn’t home very often these days. Before my son had his recent relapse, he pretty much just came home to sleep & shower since he was out with the dogs on our country property all the time. We got him a nice camper out there a year ago & now he comes home one or two nights a week.

I’ve gotten used to it & like how quiet it is at home with him gone most of the time - now, he feels a little rejected and I have to remind him that it’s what he wanted, and that he had pretty much stopped coming home anyway.

Hopefully, we’re only a year out from putting something fairly cheap out there that’s easier to live in than a camper.


#11

YES!! YES YES YES YES!

I love it and I bet making it helps a lot:)


#12

Mine used to throw down ultimatums like “if he does this - he’s out of here” “if he doesn’t do this - he’s out of here” really got tiring and I would get so caught up in it emotionally. I finally decided, after he actually yelled at Jeb that he had scz after my months of prepping for that medication moment, that I was taking him out of the decision making process.

Now when he says stuff like that, I don’t get caught up, because I won’t let it happen. I think that has worked for us as he seems to try harder to be compassionate at times and the ultimatums aren’t so often.

And maybe it hasn’t worked for him, I really don’t know, but at least it has worked for me.

I do make my husband’s safety a priority. We have the cameras, the lights, the dogs.

No one throws my child into the street without compassion. Now if I were to determine that was the best action to take, as many parents have in the past, I would do it myself, with compassion and deep sorrow. To me, there is a difference.


#13

I’m not sure what my husband’s problem was, other than he just didn’t want to see that his son had a severe mental illness.

Bipolar runs in his family. His uncle proudly showed everyone who would look some card from the VA hospital showing that he was certified mentally ill. (He thought it was funny.) His aunt spent a very, very long time in the hospital. We’re not in contact, but I see on her facebook page that she’s bipolar and in recovery.

He had caught his mother in the middle of who knows how many suicide attempts - they talked about it like it was nothing.

He most likely has either mild bipolar or delusional disorder - he routinely loses all impulse control in the spring. Or did when he was younger. It’s a running joke between us that he’s got at least 99 different personalities & I started numbering them - and telling him if certain numbers came home, he might as well turn around & leave until he could put the crazy away.

A few times, he did something stupid enough to spend a few days in jail - and he always befriended someone who was seriously mentally ill. Including some who ran out of meds & went manic. So, he’s seen it - he’s not ignorant.

But, he had every excuse in the world about our son and why he wasn’t really mentally ill until this year. Now he’s finally accepted it for the most part.

We’re careful, but my son has to be really, really, really sick to be scared enough to be violent - but he has attacked his father before. If my husband can see it coming & is exercising good sense, he’ll usually hold him until he can get him under control - it usually ends up with them hugging each other & both crying. The one or two times when they pretty much charged each other like bulls, they both got hurt - and I’ve been hurt trying to break it up.

Our dogs just get out of the way when it goes down like that. I’m hoping those times are behind us.

He’s never been violent with me, but he will block my way or hold me so I can’t leave, and I don’t like that at all. It’s only been a couple times & I triggered him - so, I’m learning to not do that.

With his new meds, none of that is a problem - as he told his doctor, he’s chill now. And, he pretty much is.


#14

aww I love it! :heart_eyes:


#15

I used to think my husband’s problem was the way he was raised. Since becoming aware of Jeb’s illness and having scz confirmed in husband’s family, I have more questions than answers.

Does a tendency for mental illness in a family show up in several forms of mental illness?

Are some of my husband’s difficult traits because he was raised by a mentally ill person? Being raised by someone with a mental illness - in a situation where no one realizes mom is mentallly ill, - her odd behaviors being a subject that none of her sons would allow anyone to address - surely that could affect my husband.

Before we knew about the scz, I thought his paranoias -jumping to negative conclusions, unwillingness to trust, low threshold for frustration and driving rages,were definitely from having been raised by a woman who told him lies constantly and created a shifting sand beneath his feet sort of childhood. His mom used to tell her children that so and so didn’t like her, had said bad things about her and about them. They believed her and all of her sons grew up with the same exact paranoia, unwillingness to trust, low threshold for frustration and the driving rage issues.

I know that she was mentally ill, but are her sons mentally ill or just damaged from growing up under the influence of her mental illness? She punished them emotionally all of their lives by depriving them of affection when they displeased her. My husband in his late forties finally began to see the reality that was his mom. He is now convinced she was a psychopath because he believes she had no conscience.

So glad the clozapine is working so well for your son. Maybe at some point there will be a difference in my son if he continues to take the meds he was prescribed. You never know.


#16

Thanks for heartfelt reply. Things have been fairly calm with my son last few weeks. We are learning all the time how to accept things. Boy, does this disease changes our perspective on life. Glad I found this forum, it really helps to read and relate to others experiences.


#17

It is good to know that things get better with time and having a routine. I find my son likes to be at home on his computer or games, but we do run errands or go to lunch or try to do something everyday. My son is also a smoker and smokes outside of our home which at least gets him out of the house. We have had a calm week, so that s been nice. It is nice you are going on a short trip to see your friend.


#18

I pray there will be a cure soon. I know exactly how you feel. I know my son was not destined for this type of life. He was so bright and fun loving. It breaks my heart to see what this illness and the medication is doing to him.
You are not alone.


#19

It takes a while , we were told five years from when we started at our therapist and it will be five years in January, so many changes. He is now looking towards an in between place and has started that process of getting his application in. But the in between times and the meantime is hard some days you just want to curl up under a rock , others look bright then collapse. Check out me and my son’s journey here www.transcendingdarkness.wordpress.com
There is hope especially if he is taking his meds and doing the therapy, but you also need to take care of yourself, this is hard because your son’s illness is consuming, but if you can take a walk every day, write your thoughts in a journal, breathe, find a good counselor for yourself and know you are not alone, for the Lord goes with you and He is in all things, over all things and through all things. Do take care


#20

My heart goes out to you.