To the Mothers ( and Caregivers )

Family
21

Hi Holly!
Your story is very similar to mine, my son is 21, and began with sz sympthoms about four yrs ago. He doesn’t go to school any more, his hair is very long and tangled, doesn’t shower either. He has two older sisters, my youngest is the boy. My daughters hardly talk to him, and my son almost doesn’t leave the house. I used to cry a lot at the beginning of his illness, now I’ ve learned to chill, as you said, and began going to therapy myself. Hope you keep going as you have, wish you the best.

Blanca.

22

Hi Bianca!

Does your son takes meds? Are you by yourself or do you have a spouse to help? Do you and your son get along?
Yes, your story sounds very similar to mine. I’d like to know more about you guys…

Holly

23

Your story sounds similar to mine. Had you told me that my future would be like it is I would have said no way. I have an older son who is married and has a family of his own and is doing well. The younger son is schizoaffective. He also doesn’t shower or brush his teeth like he should. He also smokes weed everyday. He has hit me on occasion and has terrible mood swings. I also don’t speak to him much when he has these moods swings to avoid problems. He does not live with me. His father is not in the picture he divorced me and his sons. I know what you are going through and sometimes you wish it was a nightmare I am sure. I pray that things will get better but they just get worse it seems. There was a time that he was doing real well going to NA meetings and not using as much but that is not the case now.

Maybe in the future there will be a medication that works wonders or so I hope.

I used to laugh and smile but sometimes I just feel so sad. Why me and why him?

24

Hello Holly!
Thanks for replying to my message so soon, I haven’t been able to write to you until now. I am divorced, since 2001 me and my children don’t have any news (or money) from my ex. My son takes meds since he was diagnosed in 2013, but it has been a long and difficult path of trying different medications that don’t make the desired effect, and my son Enrique has undesirable side effects from the meds. He’s been taking Clozapine for 11 months, and it’s causing him seizures, and mood changes, (more than usual). We don’t get along very well, but I try my best. Hope everything gets better for us, mother and caregivers.

                                      Blanca.
25

Hello Blanca, sure hope your son has a medical team who knows about this. Clozapine needs careful monitoring and it is very important that regular blood tests are done. My son is now on clozapine and after 3 months is still having regular tests.Thank you for sharing your story. It’s challenging being a single parent, even with one child so I admire your attitude. We can only “try our best” as you say - took me 12 years and a new husband to stop beating myself up about not doing better. Bless you.

26

Thank you for your post. It touched by heart.

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27

This is my first post, and it took me a bit to find the new forum, but here I am.

My son has been in psychosis for four months, so he has the offical diagnosis of scizophreniform disorder, but with all the research I’ve done, I’m predicting the change to SZ in two months. He’s 17 and four days before Thanksgiving, I came home from taking my 15 year-old daughter to school, and my son was in a full blown panic attack with suicidal thoughts. Took him to ER, where he was then taken to hospital for depression and anxiety. He was given Paxil and Buspar and sent home on Thanksgiving. Over the next month he lost orientation to time, and then a few days after Christmas he was fully in psychosis and has spent a total of two months in hospital. He’s been home for a month, still in psychosis as we try new meds.

Our life as we knew it is gone. I miss my son. He was always shy with others, but not with us. He was so funny with dry sarcastic humor to match my own. I worry so much about everything. Will he ever get out of psychosis, will he ever finish high school, let alone go on and get a career in music that’s he’s always dreamed of, and will all his friends just trickle away?

He had a 4.21 gpa in school and is musically gifted to the point of prodigy. Was in three bands with young adults, and also played with a jazz trio of adults making $400 a show. He can play guitar, bass, sax, and drums excellently.

Amazingly, he’s retained his ability to play, but the ability to be on stage, or interact with others? No.

How have I changed? In every conceivable way. Our home is as quiet as a tomb at most times, because excess sounds are confusing to him. No TV, no boisterous conversations, and no teasing with anyone in the family as he takes it literally even if directed at someone else.

Strangely, when he plays the noise doesn’t bother him (perhaps it quiets the voices?), and me either as at least I know what he’s doing.

I’ve only been able to glean a small amount of what is going on with him as he doesn’t talk about it, but he hears voices, both male and female, they seam to make him laugh. He sees the world in vivid colors, and has seen figures that are not there. Our faces at time look “weird” to him, but not sure how as he never articulates much of anything. I’ll get one bit of info every once in a while (only ask occasionally), but then can’t ask follow up questions as he gets aggravated and just says, “I don’t know.”

I used to cherish my alone time, the quiet, being able to write. That’s gone. I now look forward to bedtime and the scarce couple of hours when I’m up before him.

My daytime now consists of clock watching for meds, worrying every time he’s not in the same room, making up excuses for checking on him, and hoping for the voices to stop in his head. Occasionally I’ll see a glimpse of the old him, but it quickly fades into his new reality, which is not reality.

I fear I’ll never be able to leave him for longer than a trip to the store. I took my daughter last week to Florida for Spring Break, which was supposed to be a family vacation, but… Anyway, he did not do well with my husband, he thought I’d left my husband because he cheated on me. I stayed the other two days because I’m trying to keep life somewhat normal for my daughter, but that is not easy.

I am also numb now. Used to go to the bathroom to cry, but now I’m just going day by day.

Sorry for the long post…don’t have many people to talk to about all this.

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28

Dear Worried,

The forum just changed over the past few days and I just saw your post. I’m glad you wrote. Probably you read around the forum and have seen how many people go through similar difficulties. I want to let you know that you are doing your best and most close, caregiver family members become worried, numb, and live different lives. It’s a big and unexpected transition without any clear outcome.

I am writing to encourage you to keep posting here and to possibly find a support group for family members near you. http://www.Nami.org has some. Also, there are so many great people who have been diagnosed with sz.

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29

Thanks so much, and I’m looking into finding a local support group.

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30

Welcome to you. I hope you find these forums as helpful as I have. The News Forum is very interesting as well; @firemonkey and @SzAdmin do a very nice job of keeping the members updated on the most recent advances in the related fields. I’ve learned more about this illness that I ever cared to know, but knowledge can be helpful when it comes to navigating through the difficult decisions we caregivers have to make on a daily basis ( and I emphasize daily)

My son was too. He was an amazing drummer. I know it’s still in him. [quote=“Worried, post:27, topic:275”]
No TV, no boisterous conversations, and no teasing with anyone in the family as he takes it literally even if directed at someone else
[/quote]

Ditto.[quote=“Worried, post:27, topic:275”]
going day by day
[/quote]

Ditto.

I felt like my life was over when “it” started happening. I had no idea what was going on. My son started saying and doing the most bizarre things and I couldn’t explain it. Now it all makes sense and while I have accepted it, much of my family has not. They keep waiting for him to “snap out of it” - I’m tired of trying to explain.

It’s very hard. The mothers, in my opinion, suffer the most. I try to keep things as normal as possible, but it’s always there in the back of my mind. I start thinking of how things used to be. I’m just now starting to look at pictures of his youth. Many times I’ll cry, but not as much as I used to. Time heals and things will get better. You have to stay strong and keep trying, but also take care of yourself and get to a NAMI meeting. You will realize that you’re not alone and that helps so much.
Keep us informed okay?

Hugs

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31

I know what you are going through. I am so sorry. My sister has had schizophrenia since she was 18. Once a perfectly normal, outgoing, smart girl…the next day - schizophrenia…and she’s never been the same. Please read the below…there is hope…and they are finding that many mental illnesses are caused by infection, bacteria, and sometimes parasites. Check out below links, and also google the following to rule out these things that bring on psychotic problems: Toxoplasmosis Gondi, Lyme Disease, Cytomegalovirus, Borna Disease Virus. Best of luck!

http://www.hopkinsmedicine.org/hmn/f09/feature1.cfm

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32

Sounds familiar @Holly67 and others here… thanks for sharing.

It’s been 11 years since my son was diagnosed with paranoia schizophrenia during what should have been some of the best years of his life. I’ve been searching for answers and solutions ever since. It breaks my heart.

All his friends bailed on him… even his childhood pals who he was honest with about his illness years later. His siblings have not been in touch with him for years due to a rough patch when he sent them a few threatening emails/text messages. His grandparents send a card once a year, and I’m pretty sure none of them including his uncles and aunts have called him in more than 5-7 years. No one knows how to deal with this, so they’ve all basically turned a blind eye. Sadly, my son is all alone except for me, his mom… and when I meet with him it’s a struggle to hold back the tears, I try to make him smile, but the joy that was once in his eyes and the passion in his voice are gone.

What’s even more upsetting is that family doesn’t respond to good news about him now either… it’s like they feel nothing at all. After several years of him being homeless (he could no longer live with me) he’s finally in an apartment for people with special needs. When I told his siblings and the rest of our family the great news, only his younger brother replied to say he was happy for him and hope it works out… and he only replied after I asked 3 days after sending the good news email if they received my email at all. It’s so hard to watch… I’m constantly having to bite my tongue. The voice inside me wants to say, “what if that was you and not him?”.

The last 11 years has taken a toll on my ill son. I’ve told him many times that I would give my life in return for his return to having no mental illness so he can live a happy life… I’ve had many happy years (before he was ill). What hurts most is the lack of moral support for him from family, and I only have so much to give and the stress is now affecting my physical health. I meditate and other to try and stay positive and strong for him and for his siblings… and like you Holly, I’ve learned to let a lot go as well.

I am hopeful that once he’s settled in his new home he will begin to make friends again.

Light and love to everyone here… xx

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33

Upon joining this forum very recently I see a lot of HOPE. That’s encouraging. As a mother of someone with paranoia schizophrenia I too know just how important Hope is… often that’s all we have left. I’ve been reading posts in this forum for hours and the common thread is that we are all “holding the space for our loved ones”. Thought you may enjoy the following articles…

What it Really Means to Hold Space for Someone

Four important ways you can learn to be truly present

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34

How very brave and supportive and just a good person you are. There is such a stigma with mental illness, especially paranoid schizophrenia. The general population just doesn’t understand and until something affects someone personally it’s better for them to stay away or ignore. I pray a cure for mental illness will happen and I believe it will some day. Just wish an illness of the brain was understood as much as a physical illness such as cancer is. No cards or casseroles for the mentally ill. These family members that have seemingly abandoned you don’t understand that this situation could be them and how would they like to be treated in the same situation.

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35

So hopeful. thank you for sharing this with us.

36

Sadly so familiar Holly 67, Geneva 60 and others. Family are not interested, friends try to be supportive but just dont understand.

My main source of stress and distress is trying to deal with the competing needs of my two sons. Neither of their fathers provide any help or support and are nowhere to be seen!

My sz son has a volatile relationship with a pattner who regularly tells him to leave so he has to come to me because there is nowhere else. My youngest is studying and when he is home for the holidays i am on tenterhooks in case sz son has to cone and stay.

Youngest cant cope with sz son because he is so hostile and it is heartbreaking to see him so nervous around him. I am tearful just thinking about it.

Sz son resentful that youngest doesnt bother with him. Doesnt see that his intimidating manner frightens him.

Constant anxiety is making me depressed.

On the positive side, sz son has improved, and our relationship is much better since i learnt how to communicate with him and understandand him better.

Any suggestions on dealing with this complex sibling situation would be really welcome.

Hope and strength to us all.

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37

This evening with my daughter in the hospital I am reminded I don’t know very much. I believed I had it all together and I’m not even close. Thank you Holly for sharing your personal story as I can see myself in you. The huge challenge for me is not to become frustrated and angry but rather become better at calming myself down. Sometimes I forget my daughter has a serious mental illness and how I expect her to function at the same level as her two other sisters and this will never happen. She will always have this illness and for her it’s become progressively worse but she’s still my baby and I love her so much.

Her two small children who I am raising have become a huge blessing — albeit it is extremely challenging at 67 to raise a 5 and 8 year old. While talking to her doctor in a private conference room I received a call from the children’s school to ask why my daughter isn’t there. My grandson’s teacher seemed embarrassed when I told her that my grandson’s mother is in t he hospital. I didn’t share with her that my daughter can barely handle life and that she suffers every day and that she feels scared and abandoned by her own mind.

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38

Sounds to me that you are keeping your life on track pretty well. It is so easy for every life touched by SZ to get derailed.

Just yesterday, a good co-worker asked how my son is doing. It just came out of my mouth that I have had to really adjust my perspective on improvements, and think in terms of years, not days, weeks, or even months. I had never really formalized that thought before, but I know keeping a longer perspective helps me not to get discouraged on bad days.

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39

The illness is indeed heartbreaking. As a mom we remember when our child used to light up with smiles and laughter and that is gone. Occasionally a glimpse of the old personality shines through and that is what keeps me going. I am sorry though that you do not have a supportive family. Being a caregiver is tough, but we at least share the responsibility among several members in our family. Not all of us really have come to grips with what this disease is all about, but all of us know we need to be understanding even when we really do not understand what is going on in the deluded mind. Perhaps if you let your close family members know they don’t need to deal with the illness but YOU need some emotional support from them so you can deal with the illness they may soften. Best wishes.

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40

It sounds like you are doing the best you can under difficult and challenging circumstances. I admire your devotion to your son and how you found a way to cope. Each of us who are dealing with mi sons and daughters can relate to your story.

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