Family and Caregiver Schizophrenia Discussion Forum

We Feel So Incompetent


#1

It’s almost been one year since we recognized our adult son was not well. In hindsight there were red flags a few years before, but we were more confused than convinced something serious was happening to our loved one.
He flip flopped back and forth, living with his girlfriend for a few months, then moving back home. He never stuck around long enough for us to get a clear picture. At some point it was obvious, but he didn’t have any diagnosis. He began practicing bizarre spiritual rituals. The rituals gradually consumed him. He listened to the same genre of music day and night. He made handmade instruments and taught himself how to play them. When we would try and open a discussion with him about all of his newfound spiritual practices he would tell us we had nothing to worry about. That seemed fair enough we thought, until his behavior caught the attention of the local police department when he took to the city streets to share his ideals. He was very noticeable because we live in a small community of 14,000 people. His dad and I were so confused. We suggested he see a doctor, and he refused.

The next significant event came on Christmas Day of last year. Our son had been up for 3-4 days. He had taken a large kitchen knife to his room. His prayers became louder and his speech was incoherent. We thought he was in danger of hurting himself so we called 911. Law enforcement was ill prepared and the event was traumatic for everyone. Our son was hospitalized and placed on a 72 hr hold at a local hospital. We weren’t able to participate in anything because he chose not to sign a consent.

Fast forward almost one year. I know if you are caring for a loved one with schizophrenia that is going untreated, you understand I could write a book about all we’ve been through as a family the past year. At this moment our son is in secure detention at a medical facility after we were asked to testify at a competency hearing earlier this week. this is the first time in a year that I have had time to regroup. It’s the first time I’ve been alone with my thoughts and not living in crisis after crisis and I’m tired. And I just want to run away. I feel so incompetent trying to navigate a broken health care system and a justice system who don’t work together. I feel like a bad parent for not seeing things earlier. I’m immobilized and stuck while my son is out of the home right now. Maybe that’s normal. Maybe that’s o.k. for right now. I don’t trust my own judgement anymore. My son has schizophrenia and I want to help him. He didn’t deserve this. nobody deserves this. How do you put one foot in front of the other and move forward?


#2

It wasn’t your fault that you weren’t able to detect it, many of us just want to believe that they’re ok, that they’re normal and that they’re just stages that they’re going through as they grow up and find themselves. Alas, that’s not always the case, but it’s not their fault and it’s not yours either. Things happened. All you need to do is to accept that they happen; no, you can’t change the past, but you can do something to change the future and that is what counts right now. Your son is possibly getting the best treatment that he can currently in the hospital so that one day he can live a full functional life with a disease that can be manageable. The best thing you can do is to support him and be actively involved in his life and treatment. Ask the doctors about his treatment and medications, get his perspective too, and read as much as you can about signs, symptoms, and how to cope with the disease itself. How to help him and how to help yourself too. It can be very debilitating for the individuals who have it, but also for the people around them as well. You need to take care of yourself too in order to be able to take care of someone. My fiancé actually did the same thing as your son spreading his ideals, but on the internet. He even had this plan to sell free soap and give posters out to his website by setting up a kiosk, but for some unamusing reason he changed his mind about it and shut it down. Then he started publishing audio tracks, but way before he had a YouTube channel expressing his ideas which became very popular. That could’ve been the first sign of it and nobody in his family noticed it, and that’s not their fault either. The first step is to forgive them and forgive yourself so that you can move forward with a clear head and a clear heart. You’re going to need it.


#3

I completely understand your frustration, heartache, and emotional paralysis. We are beginning guardianship proceedings next week for my 20 yo son who has been living with us since his first hospitalization last July. We spent 8 months before that hospitalization in a situation like you where he was navigating his life on his own while in college, but looking back, there were many signs…we just were not present enough to grasp a clear picture. Today, he has no awareness of his illness, has refused medication and treatment since he moved here in July, and although he is going through a “good” phase (which might challenge our outcome) we are requiring that he allow us this next step, that he seeks and follows through with treatment, or he leaves our home. In some senses, I wonder if I should have secured guardianship at the time of hospitalization. Like many in these forums, the hard part of caring for a loved one with schizophrenia is there is no end in sight, no “return to normal” that you can create in your decision making as the parent. Our lives are also not entirely within our control because of this disease. I don’t claim to have any answers, as we are also at the beginning in this diagnosis with our son. I wonder if any reprieve at all ever arrives…? Or if this “new kind of normal”, and the realization of it, becomes the reprieve. My son’s psychiatrist during the hospitalization told us that dealing with things like this can often be a lot like a marathon. He said try not to spin out all of our stamina in any single episode, circumstance, or “battle.” I pray that for all of us loving those with schizophrenia, that we learn to find balance in our own lives, and we become better at caring for ourselves so that we can continue to support and help our loved ones navigate this truly awful and uninvited illness.


#4

Your post is very similar to my own experiences. None of us really know what we are doing.

I am also in the helpless place where my family member with schizophrenia is being punished for having mental illness, but we had never been able to access treatment. Even after many efforts to attain medical treatment over years, including hospitalization, interaction with law enforcement, all of it—stories and experiences for the book any of us could write, as you so aptly note—my family member’s right to suffer choicelessly with a terrible illness prevented treatment.

Of course, the law that states a person must become dangerous prior to treatment is a cruel Catch-22. The moment this criteria is met, the system becomes extremely efficient with endless rapid response resources for removing a person’s rights (Why not do this to help when it becomes clear a person is gravely ill? An extreme psychosis has physiological consequences for the brain and body the way a heart attack does.). The system is then able to provide continuous 24/7 punishment and confinement, though necessary long-term treatment and hospital stays were never for a moment an option due to lack of resources.

Just this morning I was thinking about my own early mistakes, not knowing what was going on, not being able to act in the most useful ways. The system of medical care for mental illness is not a system at all and this is not our fault. It’s not the doctors’ and other providers’ fault; most professionals care or at least do their jobs well.

No one deserves this illness, you are right. The illness is not our family member’s fault. It is also not their fault that they were unable to understand the causes/origins of their immense suffering in the framework of mental illness. My family member definitely wanted help, but did not cooperate with treatment for mental illness because this was not the difficulty they believed they were experiencing. (Again, with the heart attack analogy, if someone insists they merely have indigestion, they still get to be treated and possibly have their life saved.)

I have not seen my family member for many months.

The way I move forward is as you said, one foot in front of the other when I can move. I have been so down, so sad and frightened.

Being separated from and unable to help or comfort an extremely ill child is the worst feeling I have experienced in my life. Watching the illness become worse when all of us family members painfully learned that evidence based treatments could have helped so much more in the beginning and would still be hugely effective, improve quality of life, and possibly save our family members’ lives.

I have felt like an animal in a cage, agitated and anxious, with only pure physical will to get to my family member’s side while being prevented from doing so. With this energy, when I could, I tried to do simple projects or chores around the house. For awhile, this frantic feeling alternated with total collapses from pure frustration, abject fear, and helplessness. Mostly, I have become extremely detached, unable to be part of the world or function that well, except when I am allowed or asked to do something for my family member. Then I am able to focus and engage somewhat until I become too frightened or sad again.

My advice is: as much as possible, anchor firmly to the present moment. Today there is still a chance of an okay outcome. Your child is alive. Where there is life, there is hope. We don’t know what will happen.

Also, take the best care of yourself you can. Some of my family and a few friends have been truly helpful and supportive. Gratitude is a comforting and good feeling. I look for all the genuinely positive and supportive aspects of the world I can find and this helps me feel thankful. Taking care of yourself allows you to take care of your child. Is there a place where you feel safe that is beautiful and makes sense to you? (mine is nearby paths to walk) Be there as often as possible.

Because the only thing on this earth that would really make life okay is if someone helped our children, something we did not have the power, information, or resources to do.

When I feel very guilty that I did the wrong things or not enough, I try to remember: I would have done anything to help. I didn’t know what to do. No matter how many people I asked, no one told me how to help. I keep asking. Maybe someday someone might tell me.

Best to you. Thank you for writing and sharing. I hope your son receives the best medical care and accompanying compassion and comfort possible until he is back on his feet and able to recover in all the ways he wishes to.


#5

“How do you put one foot in front of the other and move forward?” At the moment your son is safe and in the hospital. Perhaps you and your husband can take this time to go on long walks – I find walking outdoors so healing. You can choose to talk or not talk. Allow yourself to feel and cry if you have to. A mental health care worker once told me that anti-depressant medication is fine but he told me to not stuff my tears and to let it out because our tears is our safety release. If you need support from people who understand your broken heart and helplessness stay on this forum and receive support from all of us and also give support those who are hurting. There is also NAMI a support group in almost every community in the United States. I was involved in NAMI for a number of years and found it helpful to talk to other parents who also have children with a serious mental illness. I also led a needle arts group at NAMI.

So that you can continue to give your son support please don’t ignore your relationship with your husband. You two really need each other right now by making it even stronger. Have fun together. Don’t ignore each other. Having a strong and loving relationship with your husband will not only help you and your husband but help your son tremendously.

Give yourself permission not to talk about mental illness and spend time doing something you’ve always loved. If you have a religious faith think about strengthening it by attending regular services and get involved in your faith community. This is what I have done and I can’t tell you how much it has meant to me.

I think all of us on this forum can say we understand what you are going through. It’s not an easy road to put one step in front of the other but what are the alternatives.


#6

First of all know that you are not incompetent. This disease is undetectable and who really would go there immediately.

Our son was being treated for depression initially by his aunt who is the psychiatrist and she totally didn’t see it. She noticed the anxiety disorder and addiction issues. In the early stages, he announced he had supersonic hearing, and saw fractals. We thought it was due to mind altering drugs.

I always knew my son was different but we loved him so much, I didn’t care. In fact I loved that he was more sensitive than most kids his age and thought he was just smarter, more creative, and more well rounded. I remember a stage where I was ashamed of the diagnosis. I’m not proud of that but I was. I stopped going to church, family gatherings, and drew into our world to regroup. He is now 22 and I still at times struggle to just accept the illness. I realize we are blessed in that for now he wants to be around us.

You will find your way and most importantly, he will find his way and it might be a balancing act of where those paths meet from day to day. We consider it a small victory if we can sit down together and enjoy a meal or program. Learn to tea if a day at a time and look up DBT therapy for all of you. The more you say we, perhaps the less alone he will feel but that aloneness is part of the illness.

God bless your family and you have found a good place. Come back and share as often as you want. You are not alone. For a year or two, I cried every morning by myself. I soon replaced that habit with a long walk with a couple of people and now I really don’t discuss much with them. I still have tearful times but then don’t last long. I remind myself it could be so much worse. Our son has never been homeless yet and I’m grateful. He is improved from last year and I’m grateful. You will always find someone who has it worse. Take care of yourself and each other and read all you can about this illness.


#7

I thought it was stages he was going through as well. He’s our youngest and has 3 older sisters. We blamed some of his behaviors on immaturity and it seemed he just couldn’t get his act together after high school. He used street drugs and drank too much.His risky behaviors lead to short incarcerations in the county jail and he was on probation more than off. My stomach would do a flip every time the phone rang. That was his normal and ours throughout his early 20’s.
As his social life deteriorated he used a very popular social network online as a platform for his peculiar ideas. His peer group posted cruel and ignorant comments and as a response he began isolating himself from society. The internet is here to stay, but it seems very unhealthy for his illness. Has that been your experience with your fiance as well?
Thank you for taking time to share. It’s the first voice I’ve heard that understands how hard this is.


#8

Anytime, I’m happy to share my experiences if it can help anybody or at least offer some comfort. Yes, I’ve felt the same way quite often with him. People can be very cruel, I recently had to shut that website that I was telling you about down when he was in the hospital and make a message myself there and in another website for to leave him alone and explain that he was sick. Some people on there and other forums would even tell him to kill himself, it was just awful seeing him being rejected constantly and hurt needlessly because of an obsession that will never get him anywhere. The rude comments on the YouTube continue (he lost access on that account), but some people are now aware that he doesn’t want to be contacted and to stop harassing him with emails, private messages, and even stalking him near home. We are moving because of that. Things have been stabilizing, so I’m content with the direction that they’re heading now, but it’s still not easy. Slow progress is better than nothing, I suppose.


#9

Well said jmarie, it’s is truly awful. Right now he is safe. I don’ yet know what guardianship is but I will research it. I’ve come to realize that terms vary from state to state and country to country. We had our son in the hospital a little over 2 weeks ago after he was unable to get his anger under control. He flung a cup across the room and broke a window, slammed a glass door on a piece of furniture and broke it, and took his Dad’s guitar and smashed it. He was eventually tased 4 times and brought to the hospital where he was placed on a 72 hour hold for evaluation. He has been charged with 2 criminal charges, one for resisting arrest and the other is obstruction. The incident took place over the weekend so his 72 hour hold lasted about 5 days. He was sent out the front door because neither the doctor or the staff could verify any of the behaviors we have seen here at home. He came home and refused to take the prescribed medication because he lacks awareness of his illness as well. He was unable to sleep and had managed to remain awake for 4 days. I didn’t know that was humanly possible. but he did and was really going off the rails. He went into the garage and came out with a hand saw, went into the basement and sawed a 5 foot section of pipe from our active plumbing system, covered his entire face and both hands with red paint. My spouse and I fled out the back door of our home and called emergency 911. At that moment we didn’t know what pipe he cut, or if we were seeing blood or paint. All we were certain of is that our son was suffering beyond belief and our hearts were breaking. We took the next step available to us and called SocialServices to file a 3 party petition. We were terrified he would again walk out the front door 72 hrs later and I ask myself how can we possibly live like this? Is this our new normal? The timeframe in which decisions can be made is so small and maybe there won’t be a next time. .they have already held a probable cause hearing which extends his hospitalization at least until the final hearing set for next Friday. To our knowledge our son has yet to sign a release of information so we are pretty much in the dark. I am so grateful to have you and others share useful information to help me help him. I’ve been unable to find it elsewhere. We do have a chapter of NAMI and plan to participate in their next support group for caregivers. They meet once a month and a meeting is coming up on December 7th. Best wishes to your son and your family.


#10

There are a some incredibly useful replies here for you, Esq. I think the most helpful thing for you to know is that you are not alone in this. I, too, am so grateful for the wisdom to be gained from the sharing that goes on here in this forum. I will know more in the coming week of what will take place in pursuing guardianship of my son. I will share it as it unfolds, as I believe it will be a bit of an uphill climb for us to accomplish it…as well as what it will do to my relationship with my son. As many have stated above…sometimes, it is just one foot in front of the other. I loved what you said, Hereandhere:


#11

Hereandthere, Thank you for your candid and supportive words. I cried a year of tears as I read your response and all the others. I’ve told myself that nobody but those that have walked in these shoes could understand how painful it is to have someone you love suffer from a treatable illness that through no fault of their own, goes untreated. How did we, as a nation, get to this spot?. A police officer said to me, “Unfortunately we live in a time where we fill our prisons with those who need medical help. Maybe someday it will change.” How tragic for our families, and what does it say about us?

I am sorry you haven’t seen your family member for some time. That’s so scary. Our son has left home with nothing but the shirt on his back. Most recently he posted our car on craigslist and sold it for cash right under our noses. He purchased a one way ticket to Colorado to go to the mountains, and ended up homeless on the streets of Denver. At least we can make sure they have access to shelter and food when they are near. I hope you will be reunited with your loved one as soon as possible.

Thanks for reminding me that just for today my son is in a hopeful place. I called him yesterday. It was the first time I talked to him personally because he thought I was a demon and all the awful stuff that goes with it. Without knowing if it’s best to manage his delusion in the way I do, when he sees me as a threat I make myself kinda scarce and let him come to me when his thoughts move on and he no longer thinks I’m a danger. I cautiously started a phone conversation with him and he was no longer thinking the way he was. He told me that his doctor tried something new and he was able to sleep with no nightmares. He shared insight into his own illness. He said it’s the first time he is sure he’s awake and in the present, not living in a nightmare or flashback. He tolfd me the new med was geodom. I am finding myself cautiously optimistic. His condition can change in a heartbeat as we all know. Thank you all again. I’m here to stay.


#12

YOU ARE NOT INCOMPETENT. It’s the life cycle of education and learning. I have to remain anonymous on this site as my adult son over 30 years of age would take me to court for making remarks about him on any site. I and my family members have been harrassed, sued by this member for many years, reported to every governmental agency possible displaying psychotic remarks about abuse (very typical with borderlines and SZ), and now my family won’t speak to me for fear that I am still in contact with my child. On the incorrect medication, of course. Clozaril or other antipsychotics are a blessing. The # of restraining orders, legal entanglements that protect an adult are all on the mentally ill person’s behalf. GET A CONSERVATORSHIP if you can. It’s most important. You may have to renew it every year, but it’s worth it. I’ve been living with a SZ (2 of them) for 30 years. You have to get treatment before they turn 18. We all know that, but sometimes fear the diagnosis. If you have a partner (husband, wife etc) consider yourself very lucky as this disease tears families apart, especially when there is borderline personality disorder involved. (No insight that they themselves have an illness and need medication).

I know my reply seems very pragmatic (I do wish you good luck), but strength within yourself and help from family members is what will help you. UNDERSTANDING from family members or others is what will help you. Counseling is what will help you and family members.

You do put one foot in front of the other every day, and hope there is a light at the end of the tunnel as there are many high functioning mentally ill people who stay on their meds.


#13

@esq, I’m so sorry you had reason find us, but am glad you have come and poured out a little of your sorrow here. This is a group that can handle it, even as we deal with our own situations.

I bet there is not a single caregiver here who hasn’t had those moments - or days, or weeks - when they felt lost and alone. Tired and frustrated. Stuck and confused. Navigating through the mental health system, the legal system, the social service system - ugh! It is overwhelming! I think we all dream about moving to that isolated island…

I’m sure we all can look at past events in our loved one’s life through a different lens now and realize that we probably missed some earlier warning signs. But you stepped in at an important juncture, and this is such a tricky illness. It hits when people are mature and supposed to be able to make their own life decisions, and we are trying to let them, and then, bam!

Does your son now allow you to participate in his care? If so, guardianship will simply formalize that, and eliminate the need for filling out multiple forms and trying to get his permission when he is in psychosis. (I will note that in many states, a person under guardianship loses their right to vote.)


#14

Guardianship is not as scary as it sounds. We were made guardians for our 22 year old last year. I think when they are so sick, it is almost a relief. It was so hard emotionally but we had enough reasons and professionals that agreed it was the best thing. I think it has kept him alive and I plan to do that as long as I am able.

Our son has never wigged out about it only when he wants money. He hasn’t made a big deal about it. He has addiction issues and spends every dime on drugs if he could.


#15

As to the law that say’s one must be a danger to self or others, this can include things said or done with in the past several weeks, sometimes months. If you have a good mental Health team, and your loved one is talking suicide or getting knives out, etc over the week end tell his/her Dr. My one good thing is being in Texas, they are very well trained in crisis response teams.


#16

I wish we lived somewhere like that… Bexar County is one of the best places, so hopefully the rest of Texas is learning from them.


#17

Yes I agree:wink:I keep wanting to move to Seattle area, have kids and grand kids there, or Arizona. But it would be a leap of faith. I’m waiting until she is stable enough for me to replace the great team we have here in Hays…county, TX.


#18

Esq,

You are not alone and we all get it here. Our son is a few years older and has struggled in the same way in the hospitals and with law enforcement.

Here is what I’ve learned and I hope a nugget helps you:

  • Come here often and read and write to others — it helps big time
  • Learn as much as you can about being in the moment and looking around to calm yourself down. Hiking with my dog helps me and that’s where I pray to God even when I’m mad at him for our situation. Whatever your higher power is or ability to meditate and listen to your own “gut” instincts it will likely help.
  • Our objective is to keep our son out of jail. So no drugs and we’re requiring that he get back on his prescribed meds, as prescribed, again, or out to live in independent living in a few weeks. Like many family or caregivers here, our son self-isolates. Our next step is just to get him to go to one SZ support group weekly at our health care provider. Over time, we hope to get him involved in addiction support group too.
  • Buckle up buttercup… initially we thought this would pass and it took us years of what I think was a bereavement process to accept it and start to enforce rules (we let our son take marijuana for years because we thought maybe it helped— addiction does not help and only made the escalation inevitable - for us)
  • Baby steps as others have described are extremely important
  • We went to a lawyer about guardianship and it’s great if you son cooperates. Ours would not and we were told it would be a waste of money.

Wishing you a moment out in nature to breathe. We get it. Hugs and love to you and your beautiful family.


#19

This is so true…!

My son’s psychiatrist upon my son’s first admission and psychotic break multiple states away from our home was wonderful. The first 1/2 hour of his conversation with me was not about my son. At the time, it struck me odd when the first thing out of his mouth was, “How is your marriage?”…and I shared with him where we lived, what was available near us, he expressed deep concern about our resources (we in a town of 100 people…70 miles from a grocery store…3 hours from his psychiatrist or a hospital that houses inpatient needs for a psych admission). He was concerned about the isolation, the absence of case management in our county…so when he shared what he felt about my son, he said…“You are going to need to put your boots on…” and I thought to myself, what does that mean? Well I certainly know today!

I am glad I am not alone in this…grateful for the dialog in these forums. As our son’s support family, we get better at navigating this every day. I wish it was because my son was on a correct or better path, as that is not the case. We simply are getting better at knowing what hill we want to die on, accepting the nano-steps of progress, and being more clear on what is important not only related to our role next to him, but in life in general.

Wishing all of you peace and some joy this Holiday Season!


#20

“Our objective is to keep our son out of jail.”

Yes, alive and out of jail or prison.