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To the Mothers ( and Caregivers )


#1

How has your child’s illness changed you? Did you ever imagine being where you are now? What have you learned and what do you feel about the future?

My son lives as though he is homeless. He sleeps at random houses, doesn’t shower, and will only eat a small variety of foods. He will not take meds. He hangs out in a mountain town during the summer and collects money by playing a guitar on the street corner. He smokes weed as often as possible, and If you had told me five years ago that that this is how I would describe my son, I would have called you a liar.

My son has a sister who is two years younger. She is graduating high school this year and plans to go to college. She plays sports, is in student council, has a job, and lots of friends. She hated her brother two years ago. He did some pretty bad things, but now she understands why, and for the most part, has forgiven him. She stays with me a few days during the week, when she wants, I’ve left it up to her, because my son lives with me. It’s hard for anyone else to listen to him when he is delusional. Nobody else wants to try to understand him. All of his aunts, uncles, cousins, and grandparents ( except on my side) have bailed on him, and therefore bailed on me. I’m not sure I can ever forgive them.

So how have I changed?
Well, I’ve become a little numb ( and this is a raw emotion- no antidepressants…yet). I don’t laugh like I used to, and I don’t cry very much anymore. I need to save that emotional energy. Three of his hospitalizations have taught me this. ~ I’m much more patient. If things escalate, I go to my room and chill. I now think before I speak, and have found that many times it’s just better just not to speak. I’ve learned to let go.

What about you?


#2

I think you have good responses: listening, patience, letting go.

I try not to think about the future.


#3

I too think about how different my life is now than I ever would have imagined. This illness is something that no one who has not lived with it can imagine. You start to see really what is meant by unconditional love. Of course, balancing your love and loyalty for your son with taking care of yourself and others you love is an incredibly difficult chore.
It sounds to me that you are a very brave and loyal woman, and that you are understanding of your daughter’s needs as well as your own.
Everyday I try to remind myself of the people I have not lost. I have not lost my son. He is changed, but he is stable and has a kind, loving heart. I still have my Mama and my daughter. I cannot dump everything on them, but I know that they will stand by me. I have also been blessed with 2 new friends since my husband left.
I would not have chosen life to be as it is, but I have grown in strength and wisdom. And I pray that I will continue to do so. I can tell from your post that you are wiser now than in the beginning. Stay safe and stay strong. My heart is with you and everyone who chooses to walk this path out of love.


#4

This journey is still new for me. I have learned to never get comfortable and complacent though. I never in a million years would have had schizophrenia on my radar. And right now my heart breaks every day for my daughter. I just fear so much for the future. I don’t even know what to think about it yet.


#5

It’s nice having people in your court, isn’t it? I had to leave my job because of all the time I was taking off. My FMLA ran out and I had used all of my sick/vacation leave. Thankfully, I’m still employed as a sub (librarian) and can choose when I want to work.
I feel more insightful, and yes, wiser.

Being on these forums has helped me get through the hard times. People like you remind me that I’m far from alone.

Hugs


#6

very wise words.

hugs


#7

My beautiful baby has been diagnosed with schizophrenia. Whether this is good or bad I do not care the relief is knowing that some of her (MORE BIZARRE)… Behaviour can’t be helped and we can learn to live with it…


#8

No words to describe the fear, the denial, the grief and eventually the acceptance of a serious mental illness. I am the primary person taking responsibility for my 30 year old son. It’s so difficult…words cannot describe. Look beyond the illness, see the person inside, take time out to take care of yourself.


#9

It is not an easy journey, but it’s important to know there is some hope. My son is 33 and was diagnosed about 8 years ago. A lot has happened during that time, some things I’d rather forget. At the beginning, I was in total grief and NAMI classes were very helpful. He also refuses medications, but he no longer smokes pot which is good and he just recently quit smoking cigarettes. We used the nicotine gum to help him off and then tapered that down very slowly. His condition improved a fair amount from this. Also, certain vitamins and nutrients have helped his mood. In the last year his personality has returned including his sense of humor. I am very thankful for this. Some people do eventually recover in the long run and I’m trying to improve his odds to be one of those. Fortunately, my husband is very supportive and we include our son in as many family functions as possible. There are times it is overwhelming but you do what you have to do. I read these forums sometimes but this is the first time I have posted.


#10

I totally understand…


#11

My daughter sounds the same. She lives with her father and I, at least technically. We only see her when she gets really dirty or really tired or if someone hurts her. She’s been gone a week today, but was only home 24 hours before she left this time. She leaves with no money and no personal belongings. She tells us, when she is home, that if she needs money she panhandles, steals, or prostitutes. She stays stoned or drunk as much as possible when gone. She demands alcohol when she is home, but we refuse. Usually she leaves shortly thereafter. She is 21, but her doctors have told her not to drink with her psych meds. She never takes her meds (including her birth control pill) when she is gone, only at home. Her 18 year old brother will graduate this May and plans to move immediately. He hates that she lives with us. He says he can’t bring friends over because you never know what will happen when she is there. She has four older sisters, all married with children and none of them will let her anywhere near there kids. She has been violent in the past including assaulting me.

I understand the numbness. The worst part is that we have raised our kids and this is the time we should be relaxing and enjoying our time together again and time to be grandparents. The only problem is the girls won’t bring their kids over because of their sister. They are afraid she will have an episode. I feel like I can’t go out of town afraid she will leave the stove on and burn the house down, or steal our thing for drug money, so it’s like being a prisoner.

I have two different friends who have been the caretakers of adult sz daughters. Both of their children have died. One at age 55, the other at age 39. That’s scares me! No matter how hard you try to keep them stable and safe, it may all fail down the road. Do we continue to sacrafice our quality of life? People tell us those with sz are more resourceful and self sufficient than they let on because we are enablers and make it too easy for her. I don’t know what to do…


#12

Your story made me sad. I’m so sorry.

I’m close to the next chapter too, but also feel like a prisoner. My husband wants to go all of these places, and I tell him someday, but not now. I also worry about coming home to a burned down house and stolen valuables. I have a hard time not feeling resentful towards him because my daughter stays more with her dad because of my son. I only want her to move forward, so keeping him with me (he won’t live with his dad) allows for her to have some normalcy so she can focus on school. She misses me as much as I miss her and I do everything possible to stay involved with her life. I am taking her on a long road trip to New York when she graduates and have no idea what I’m going to do with my son, but she is so excited, I have to follow through.

I wish I knew what to tell you, but I don’t. But I’m here for you and understand exactly what you are going through. we are not alone…


#13

Finding this website has been a blessing! Prior to this, we felt so alone. Your friends who don’t have sz in their lives, don’t understand and those who do have so much to deal with themselves.

Thank you for your kind words and thoughts! I will also keep you in my prayers!


#14

I’m really glad you did, thank you

inspiring, thanks again


#15

I also learned to keep quiet much if the time. But my son lives independently in a beautiful flat in London. He’s on disability. I help him out financially but right now he is studying computer programming online. He also works out regularly, and cooks and eats really well.
A few months ago he was detained in a psychiatric ward for almost two weeks, but since then he has been on depot injections and is doing well. He is 30 and was only diagnosed three years ago. He diesnt drink or do drugs and never has.
After he was released I went and looked after him for three months while he recovered. Psychosis is really exhausting and demoralizing.
My son doesn’t want to take the medication all his life. But when he stops taking it, he slides into psychosis. That’s the big heart-stopper for me.
But right now, he’s well, so I may as well relax and enjoy it! There is hope for recovery.


#16

I feel your pain as well! It is so hard not to respond to his accusations that I chirp him all the time. I have learned to be cautious around him and I was never like that in the past. I am still very emotional as it’s still new and have recently told my boss as I wanted to explain why I can be distracted at times. He was quite understanding which helped! He is finally seeing a Psychotherapist so I’m optimistic that they can help him get the right medications! This has changed me as a mom but I’m trying to stay away from his drama to keep sane!

This forum and not feeling alone helps me to cope as well! Thanks for sharing and keep your chin up! You are not alone!


#17

Hey Holly, so glad you have found this forum. There are many here who are in a similar situation and I expect we each wonder how we came to be here. Thank you for writing, and encouraging me to share.

I find it so hard seeing my much loved son change from a loving, caring, thoughtful child who was interested in learning and planning for happy relationships and to be a great dad, to a vulnerable young man who is isolated even when well, paranoid when unwell, and finds it difficult keeping friends because they cannot cope with his bouts of instability. Although 34, he’s emotionally about 22 and really feels low about the lack of future choices he now has. Like your son, in the early years he had little insight into his illness and would self-medicate or be non-compliant which, now years (and dozens of hospital admissions) later, means his recovery level is less complete than it might have been if he’d been able to work with the medical team when first diagnosed at 17. I am sad at the loss of the man who might have been and grieve for him still.

For a long time I thought I could have prevented his illness, fixed it, made it disappear, if…, if only, and being my only child, it’s been difficult to step back from worrying, mothering, protecting him, rescuing him and I still have to work on consciously. I admire that you learned to let go but still listen and try to understand without passing comment. Only in the past 18 months I realised that much of what my son talks about is quite symbolic, so trying hard to understand keeps me more silent than previously which is good.

These years have been quite a learning experience for me. I’m more critical of treatment preferences advocated by the medical team of the moment (public health system) and know my way about the mental health legislation, what support systems and resources are available in his area, and keep in touch with his team. The furniture dumped on the verge, new clothes bartered, and continuous smell of tobacco, at his place don’t phase me too much anymore - they’re just things and, practically, can be replaced/cleaned etc. Looking inward is quite different and being practical is my way of numbing the emotions that could be overwhelming at times. I do find connecting with others who have mental health concerns often easier than connecting with those without - empathy perhaps, or insight from experience. Oftentimes these others help me understand, or learn, something that helps me relate better to my son, and this is oh so rewarding.

There is always more to look forward to, experiences that I learn from, hope for better quality of life for him, and for me. Giving up is not an option, but those who have or do, are missing out on depths of humanity. Doing what’s possible whenever possible in the kindest way I can is my aim. I will forgive others their ignorance and inability to understand but justifying nastiness is ignored. There’s so much more loving to be done.


#18

I have learned over time to be very slow in my actions and speech around my son. He picks up on any anxiety I might be expressing. Sometimes I feel I am moving in slow motion around him, but it seems to help. I try not to rush him, and give him plenty of time to answer questions. The answer is often coming, it just takes a while to get formulated.


#19

I can totally identify with this.[quote=“MamaD2, post:16, topic:43565”]
I have learned to be cautious around him and I was never like that in the past.
[/quote]

I wasn’t either. I used to wait in parking lots for him as he was in so many types of bands/clubs and I would read in my var until he was finished. He’d always hop in the car and tell me something exciting that had happened. We’d go get something to eat. Now he has lost his friends, transportation, job, and I’m the only one he can be angry at. My daughter came by yesterday when he was having a meltdown and said “mom, I’m so sorry.” I just told her that it would pass…I can’t figure out why he refuses to see his dad. He’s a good man and not at all abusive. I’m hoping he might stay there for a little while I take my daughter on a road trip.


#20

Dads/pops/step-dads (role model) express expectations differently. Being a “good man and not at all abusive” is perhaps something that’s too hard for sz sufferers to be consistently.
In a lucid period, he shared things that impact on his relationships, including that he (son)

  • hates having a poor relationship with me (mum)… pops would never tolerate it, or repeat it;
  • is still very idealistic (immature) and sees failure as insummountable… pops is so successful;

We talked gently about expectations and how they are the cause of disappointment, even failure, when not set at a realistic level, and how there can be follow-on expectations - meaning false premises often lead to false expectations leading to more disappointment.
Since then, “pops” (his step-dad) has shared more of his experiences of growing up to be who he is today - the mistakes, how he learned something, and suchlike - many of which are somewhat amusing in retrospect. However, there is still hesitancy in asking to speak with pops directly, so he asks “how is pops?” instead. I’ve become more open about my own experiences too and have come to understand that sz sufferers often see things very literally and need help to relate the experience to the principle beneath.

Sharing has improved their, and our, relationships significantly in the past year or so. I’ve found recalling one of these shared incidents in a non-judgmental way has helped son see the theory behind the the specific event and in some fashion, be able to relate it to what might be happening at that moment.