Family and Caregiver Schizophrenia Discussion Forum

How it used to be


#1

I have been feeling a sense of mourning the last few days over the loss of my husband: SZ has changed him so much that he is not the same person I met 24 years ago. We started out as really good friends, going out together and chatting. He was the one person in a room full of people that I would have the most interesting conversations with. He was and still is very intelligent and I learned a lot from him. He made me pay attention to the world around me and introduced me to new things. He was outgoing and driven. After being good friends for 2 years, he asked me out on a date one night and 2 years later we moved in together and 7 years after that we were married and had a son. He started a business which we both worked at, him more than me, for 11 years, the bottom fell out and we had to move to his parents house. After that, everything went downhill. I guess he was depressed and I didn’t realize it. Two years later he was in a full blown psychotic episode and so the story goes on… in and out of institutions, no insight into his illness and not able to step out of the revolving door.

I can’t help but wonder why this happened to him. How did a normal guy end up schizophrenic at 45? I wonder if the symptoms were always there and I didn’t see them. I go over conversations in my head. We are not living together right now due to my sister in-law kicking him out of the house after being arrested for vandalism. He is having problems again and he was just released from the hospital in January…already it’s starting again! I am very worried about him and am calling the doctor tomorrow as he has an evening appointment and I’m going to tell her what has been going on. He is back to having conversations with someone and so consumed by his thoughts/delusions that he is barely engaging in conversation with us.

The part I find the most disturbing these days is the torment he must be feeling. The way his mind is playing tricks on him and the paranoia he is experiencing because of it. My son and I go to visit him and he has nothing to say and when I say something to him I have to repeat it because he doesn’t hear me the first time. And when I do repeat myself, he has no reply and just looks at me like he doesn’t understand what I am saying to him. I have been on my own with my son for 3 years because he can’t wrap his head around anything I come to him with. He is a great Dad to our son when his meds are working but when he isn’t doing so good, he barely talks to him. My son loves him unconditionally and seems to understand and feels much compassion towards his father, which is a relief to me. It’s a relief because my son isn’t angry at him over everything we have been through since his SZ symptoms appeared. I, on the other hand can’t say I haven’t been angry. But lately, I have just been feeling sorry for all of the torment he is experiencing. I looked at the pictures of our wedding the other day and he looked so happy, so full of life with that devilish gleam in his eye. My husband used to be a real ball buster, but in a fun way and always used to make me laugh. His heart was golden and he would help anyone who needed it. But now, I look in his eyes and that gleam, that light he once had has faded and just looks dark. He looks like he has aged so much in the last 3 years from all of the stress his mind has put him through.

I don’t know. I am sure that everyone on here remembers their loved one before mental illness reared it’s ugly head. I wish there was a cure so they wouldn’t be tormented by their thoughts or voices anymore and we could have them back in our lives like they used to be before SZ. Thanks for listening…


#2

I could be thinking: how would my life be if my mom did not have sz? She would have loved me and provided emotional support for me, so I would not have to marry the first person I’ve met. Etc, etc, on and on… In a way, it is self torture…

No, i just rather deal with the reality the way it is, although it is Very important to go through the grieving process and to vent

Hugs!


#3

@Ginger, I hear you…and your grief and I am so sorry. When I describe this illness to those not impacted by schizophrenia and to those with no experience with severe mental illness, I talk about what a wicked thief Sz is…I share how it robs our loved ones, and too…how it robs us, as we desperately wish our loved ones would return to us in their pre-Sz form.

Something I am working on today is better understanding what it looks like for my son to decision make around being stable, healthy, and well…and then working on what that requires of him, the support services around him, and what that requires of me. I am working on being clear about what is mine…and not only what isn’t in this experience, but what can’t be in order to continue to be present and strong as his caregiver. As we all know, this experience can implode a family.

I say over and over and out loud to myself…“supporting my son is okay, supporting schizophrenia is not.” I try to clearly identify my struggle at the moment, and I ask myself…am I enabling schizophrenia? OR, am I helping my son? That is my litmus test. Sometimes, the answer involves letting him run with schizophrenia all by himself, rather than running with me toward wellness. Certainly, I am always trying to bridge the gap toward wellness, but I cannot do that alone…he has to do his part. Even when he is not in control, when schizophrenia has all of him, which is the hardest part…I am trying to commit to only supporting decisions that assist in his health, stability, and wellness.

I am not where I want to be with that yet…and neither is my son. It does help me to feel like I can stand on something, though. The hardest part…is closing the door when you know they are in need, when you know there is a huge risk not to give in to that boundary. It is hard when you know that psychosis rules, and the system (court, civil rights, evaluations that fail to display what is necessary for treatment) is the barrier. It is so hard to stand in the face of schizophrenia…knowing it has consumed our loved one in the moment, and to stand on a boundary that insists they take the healthy fork in the road (hospitalization, medication, no alcohol/drugs, etc.)…or be without our assistance…but sometimes we have to do that. It is so hard to choose healthy decisions for ourselves rather than have them drag us on their twisted road.

Stand tall, sweet friend…and know that your post makes me think that the man he used to be would want you to hold the bar high for him, for you, and for your son. I might bet he would see how above and beyond your support, unconditional love, and compassion both you and your son have extended to him…and be so grateful.

Wishing you the best in your journey.


#4

Thank you! Your words are inspiring…


#5

This is really helpful jmarie. I’m struggling with whether or not to over extend myself financially to prevent my son from being evicted or to let him be evicted and hopefully realize that he needs some help. It is excruciatingly difficult and I’m in agony. I’ll think about what you’ve written and hope that it helps me live with whatever decision I make.


#6

I know where you are coming from in a way. My husband had his first (witnessed by me) psychotic episode in early December 2015, he was 55 and we were just ready to celebrate our 30th wedding anniversary. Two months later he had another major psychotic episode in which he made two attempts on his life. I found him trying to carbon monoxide himself, and then he turned around and drank weed killer in a second attempt. He almost died…and was diagnosed with schizophrenia with having actually having had the diagnosis when he was 19 however no one ever told me that he had done this before, had spend time in the mental hospital or anything else. I was told him had a problem with “depression” when his father died. Looking back there were tell tale signs, just not ones the normal person would recognize. He, to this day claims that his brother is telling me lies about when he was 19, he was not trying to shoot people who were calling him names / teasing him or that he tried jumping off his mother’s house roof.

I tell you this because I, like you, am grieving. I have been since February 29th 2016, the day my life changed. The day SZ entered it full steam ahead and the day I lost what I knew to be a “normal” life. Loosing my husband to this illness and becoming wife, mother, caregiver in one to him is hard work. I am totally exhausted ALL of the time. Things that we loved to do together like going for a ride on the weekend and getting an ice cream cone are gone. He doesn’t want to leave the house, or even talk to me most nights. He does, THANK GOD, still go to work (he works alone as maintenance in a motel so his voices are his own when they are there). I have had to take over basically all household duties, bills and choices. He shut down as soon as he walks into the house. We have five children and two grandchildren and four son -in - laws/signifiant others who are involved. He has two brothers and a sister and I have three brothers. All have helped at some point, in the beginning. Unfotunately as time goes along, they forget, move on with their lives and assume that things are back to “normal”. For them they are. For us? Never.

That being said, my husband still swears that he is not sick, nothing is wrong with him and that we are all crazy and just trying to control him. He refuses to see a psychiatrist or therapist. He will go for his injections (is on Riperidone Consta twice a month injections at 50 mg / shot) and will take his oral meds ONLY if I make him. He sleeps most of the time when he is home. I believe he is tormented but I also believe that he doesn’t realize it…I have to believe that or I would literally be joining him in crazy. I spent many times in the begining reminding myself that i have married the love of my life “for better or worse,” that this is likely the “worse” which those vows included.

Things happen that break my heart…like two weeks ago not knowing for sure that he would be able to walk our daughter down the isle when she got married…He did it! Or when this summer, my 10 yr old grandson said, “Grandma is Pampa still sick?” (He came with his mom to visit when hubby was in the hospital) And I having to tell him yes. His next question was “when will he get better?” I said he is better than he was and as long as we make sure Pampa takes his medicine he will be okay for a long time. I know in my heart that that may be a lie, but it is one I have to tell myself.

know that you are not the only one who has a late in life shock…thief in the night…who stole you husband and you are not the only one who questions things and sheds tears when no one is looking Or yells at God in the shower for what He has done to your love. we are here to support you, hug you and cry with you! One thing this group is, is here all day every day, every hour. Hugs sweetie! You’ll make it just like the rest of us…with tears and anger, love and hate. Hurt and strength.