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#1
Mar 15, 2009, 02:37 PM
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It took my 26 year old son a year and a half in the hospital to recover this last time around. He had stopped taking his medication and was using drugs and alcohol. He thought his food was poisoned, was not bathing, and let trash pile up all around him in his apartment. I knew that he was deteriorating but I had no idea how bad it was until I took groceries to him and he didn't answer the door. I was finally able to use my key and go inside (he hadn't allowed me access for a month.) I found him asleep in a chair, looking like he did when he was little, peaceful and perfect. There he was, surrounded by trash, rotting food, broken CDs, a smashed stereo, an unflushed toilet. He also has a spinal cord injury that he suffered at the age of 18, while manic and high, due to a dirt bike accident. He needs to use a catheter to urinate. There were catheters strewn all over; not a single clean one to use.
For a minute, I thought about just backing out the door. He hadn’t been eating and wasn’t able to care for himself, I thought if I just left, maybe he would quietly slip away. Maybe that would be the kindest thing to do for someone so tortured. Of course, I couldn’t. Instead, I facilitated a psychiatric SWAT team. They swooped in and whisked him away. He was catatonic when he arrived at the hospital. I thought I might never again see the son I knew. For the first few months, he was so angry with me that he refused my phone calls and visits. With proper medication, and no access to drugs and alcohol, slowly he did get better. At the end of the year and a half stay, he was placed in a small board and care. He spent almost every weekend at my house. He was polite, appreciative and grateful. These were qualities I hadn’t seen in him for a very long time. The board and care was not ideal; he shared a room and altogether there were 11 adults sharing a 5 bedroom house. He didn’t complain too much; it was better than the hospital. Recently, he was able to get a HUD subsidized apartment for disabled and brain injured tenants, qualifying because of his spinal cord injury. His name was on the waiting list for three years. It is ideal. The rent is very affordable, the community is small, nice and secure, it is not far from me, etc. He moved in a month ago. It seems the one lesson he learned after living alone last time was to keep his apartment clean! (He thinks his filthy apartment is why he was taken to the hospital and still doesn’t believe he’s sick.) To my surprise and delight, he is doing a very good job. However, the more important lesson, the one that seems to be so difficult for many with mental illness, is to continue with medication. Right after he moved in, I began to notice little things that made me suspect he had stopped. Last week, he confirmed it. He’s fine, he doesn’t need it, even the doctor (according to my son) says he doesn’t need it. I am devastated. I don’t mean to predict doom and gloom but I just don’t think he will be able to function without the meds. He might be able to pull it off for a while since he is no longer using drugs/alcohol. I am just so sad about his choice. If he loses this apartment, I don’t know where he’ll go. Anyway, I needed an outlet where there might be some understanding. Most of my friends don’t really have a sense of what this is like. Frankly, most of my family doesn’t either. |
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#2
Mar 16, 2009, 11:47 AM
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#3
Mar 16, 2009, 08:11 PM
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i too am schizoaffective. i have problems keeping up the house and neglect my hygiene regularly. it's not that i want to live in a stinking mess, it's just that there are so many things going on inside my head. the voices are there, and it takes so much energy to do anything. it's like the noise in my head gets so loud at times and going out in public brings on the paranoia. its just easier to stay at home in my comfort zone. i'm currently on meds, but it's a struggle every day. sometimes i just don't have the strength. i am thankful to my family as without them, i don't know what would have happened to me.
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#4
Mar 16, 2009, 09:13 PM
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Susy,
I've just put a substantial amount of information in your mailbox. (If you look to the right at the top of the screen, there should be a log-in box. Directly below that is a link titled Notifications. If you click on that you should be able to access your mailbox.) I also have four blogs listed in the signature area of my post. Under the circumstances, you might find the recovery blogs to be most useful. In addition, if you click on my name you'll be taken to my profile, I have an album there of recommended books. Recovering Sanity is one I particularly like for family members because it is devoted to recovery within a home environment that typically includes family members as part of the support team. He’s fine, he doesn’t need it, even the doctor (according to my son) says he doesn’t need it.I am devastated. ... I don’t mean to predict doom and gloom but I just don’t think he will be able to function without the meds. He might be able to pull it off for a while since he is no longer using drugs/alcohol. I am just so sad about his choice. If he loses this apartment, I don’t know where he’ll go. It might be helpful to know that many people move into full recovery and don't require medication anymore. Other people find it beneficial to continue taking medication. This link may be reassuring: Schizophrenia & Hope Hopefully, the other information I've passed on might provide some assistance to you and your son. ~ Namaste .
__________________
~ Kindness is cheap. It's unkindness that always demands the highest price. Last edited by spiritual_emergency; Mar 16, 2009 at 09:29 PM. |
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#5
Mar 17, 2009, 09:14 AM
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Although many people do recover and no longer need meds I don't think it's safe to stop the meds suddenly. Did you son just stop suddenly or did he gradually reduce his dosage? Could you work out a deal with him? Maybe he could agree to reduce his meds in tiny increments and if he remains well he can continue to reduce the meds slowly. And if his symptoms start to return he has to agree to take his meds.
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#6
Mar 17, 2009, 06:06 PM
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#7
Mar 17, 2009, 06:13 PM
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#8
Mar 17, 2009, 06:24 PM
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#9
Mar 18, 2009, 02:37 AM
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Susy, Some words for your consideration...I once read this terrific quote that said: To have a child is to forever have a heart walking around outside of your body. Behind all the words you have spoken I sense this great mother's heart. You love your son. You have seen him suffer. You want what is best for him. You worry. You anguish. This is the cost of fully loving another human being. I can give you the url of a forum where your worries and concerns could be fully supported. The people there would tell you, "Oh, yes... your son has a disease. Oh, yes... your son will never recover. Oh, yes... your son must take medication for the rest of his life and if you really love him, you will hammer this point home again, and again, and again." But I also know that if I give you that url (which I will, if you ask), I might be betraying your son's deepest hopes and desires for his own recovery. Can you imagine what it is like to hear those messages repeatedly, for years on end, and still find the strength it might require to reject them and say to yourself, in spite of all the voices that say, "You can't!" that I think that, maybe, "I can!"? This is the message of determination I hear in what you have shared of your son. ~*~ I have been doing what I do for several years now. My actions initially arose out of a desire to understand my own experience. In the process of understanding that experience I have spoken intimately with many other people who had gone through similar experiences and those who care for the same. I have also had the experience of being in your shoes and watching someone I love... suffer. And desperately wanting for them, that their life could and would get better. In spite of whatever personal experience and insight I brought to those equations, it was still frightening and overwhelming. Something else I realized in the process, (and still struggle with) is that their wants and needs may not be consistent with my own. This raises the question: Whose Life is it? Who does Recovery belong to? One of the difficulties of being in a caregiver position is that what we want and what the other wants may be different things. Needs get muddled and this can serve to separate people at a time when they most need to find some common ground. The site url I could give you seems to be exceptionally skilled at pitting parent against child in an ongoing struggle for control. Ultimately, because the child is not truly a child but an adult with all the legal ramifications of same, the parent loses. But losing their child wasn't the prize they were after -- it was what they most feared would happen. This can be a painful process that challenges growth in everyone it touches, including caregivers. I'm reminded at this moment of a young man, a schizophrenic, who gave his father these words... ~ Be brave and grow ~ As a caregiver it may be helpful to expand your vocabulary. It may be that what you call "schizophrenic" or "schizoaffective" is what your son might call "personal crisis" or "breakdown" or "ego collapse" or something else. Common language facilitates communication where we can meet each other. Do consider that somewhere within your son he carries a vision of his recovery -- just as you carry a vision of the same. If you can find out what his vision is and share with him what your vision is, the two of you might be able to find a common ground you can mutually, lovingly and supportively work towards. Don't be surprised if you find healing within that process for yourself. None of us can truly be well if those we love are not. This is as true for your son as it is for you. I'll close by noting that no one ever makes it through this experience without the support of other people. That support most often comes through family members, friends, peers and professionals. Each plays an essential role for the individual reaching for full recovery but what that recovery looks like must always be self-defined. Bear in mind that the support you need and the support your son needs may be two entirely different things. Ultimately, as parents or caregivers, our goal requires that at some point we let go and allow the other the space to stand on their own two feet... even if they make mistakes... even if they fall... even when it scares us. But they can also become stronger with the knowledge that we have faith in their ability to overcome difficulties and challenges and to also know that if they stumble a bit now and then, we will still love them. Hopefully, by modelling that behavior they'll learn to accept the places where they, like us, are all too human. ~ Namaste See also: Loving A Human Being Music of the Hour: .
__________________
~ Kindness is cheap. It's unkindness that always demands the highest price. Last edited by spiritual_emergency; Mar 18, 2009 at 05:34 AM. |
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#10
Mar 18, 2009, 12:13 PM
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In response to Spiritual Emergency
Thank you for all of the helpful information you sent. I really appreciate it. Because of your personal experience and that of your child’s, you indeed have a unique perspective from which to share. If my son can function without medication, I am the first one to support his choice. Given his past history, I am skeptical that he can. There have been multiple hospitalizations and many poor choices along the way. As I said, though, this time is different because he is not using drugs/alcohol. I am hopeful that the outcome of stopping his medication will be, at the very least, less severe. As far as my son and I wanting different things for him, I disagree with that. I would say that deep inside, I hold onto some wishes that I had for him, a “normal” life, relationships, a sense of purpose, etc. Other than immediate family he has no relationships. He has no desire to work, go to school, or volunteer. Currently, he gets out of bed, chooses to stay alive, keeps himself and his apartment clean, fixes his own meals, does his own laundry and takes out the trash. Since he has not always been capable of doing these things I am pretty darn happy with this list. Heck, I’m pretty darn happy with him choosing to stay alive. If he can continue to do these things without medication, so be it. Prior to stopping the medication, my son had no problem with seeing his primary care doctor when necessary. He is supposed to be seen at least every 6 months because of the spinal cord injury. He is also supposed to be seen if he gets a bladder infection which can happen as a result of using catheters. Well, he has a bladder infection and won’t see the doctor. He has an upcoming routine appointment and wants to cancel because he is healthy and it is not necessary. He also wants to cancel his upcoming routine dental visit for the same reason. Given this, and other, less important things I have observed, I feel like he is on course to crash. Of course, recovery belongs to him. If he endangers himself along the way, I do feel obligated to intervene. On the topic of expanding my vocabulary, I usually avoid even stating his diagnosis. I think it is difficult for doctors to be certain of a diagnosis and I don’t think what it is called really matters. You function or you don’t. If you don’t, let’s find something (support, therapy, medication, etc.) that helps you be the best you can. It helps me to simplify. Thank you for reminding me that it is possible to have recovery without medication. I will hold on to that hope. Last edited by Christina86; Mar 18, 2009 at 09:33 PM. |
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#11
Mar 18, 2009, 03:33 PM
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If my son can function without medication, I am the first one to support his choice. Given his past history, I am skeptical that he can. There have been multiple hospitalizations and many poor choices along the way. As I said, though, this time is different because he is not using drugs/alcohol. I am hopeful that the outcome of stopping his medication will be, at the very least, less severe.
I hope so too. In that information I passed on to you are some guidelines for withdrawing from medication. If you were to go to your son and plead with him to start taking his meds once more, he might not be open to hearing you, but he might be open to listening if you were to reframe your concerns along the lines of, "I really want you to succeed and I'm willing to support you in that process but withdrawing slowly sounds like it might be the best option. Can I help you with that?" Something else that might be helpful is to provide him with some role models in that area. For example, one of the sites I linked belongs to Rufus May, a psychologist in the UK who was diagnosed with schizophrenia at the age of 18 but made a full recovery. He no longer takes medication but obviously, he's quite capable of functioning well without it. Dr. Edward Whitney, Dr. David Lukoff, Dr. Daniel Fisher -- these are the names of some other individuals who might be able to serve as role models to your son. You can find links to all their personal stories in my Voices of Recovery blog. As far as my son and I wanting different things for him, I disagree with that. I would say that deep inside, I hold onto some wishes that I had for him, a “normal” life, relationships, a sense of purpose, etc. Other than immediate family he has no relationships. He has no desire to work, go to school, or volunteer. Currently, he gets out of bed, chooses to stay alive, keeps himself and his apartment clean, fixes his own meals, does his own laundry and takes out the trash. Since he has not always been capable of doing these things I am pretty darn happy with this list. Heck, I’m pretty darn happy with him choosing to stay alive. Frequently, when individuals make the choice to come off medication, the presumption is that they're demonstrating a lack of insight... there was a study done several years ago however -- CATIE, you may have heard of it. One of the surprising results to surface from the CATIE study was that 75% of the people taking one of the drugs had to be dropped from the study because they'd stopped taking medication. The reason they cited was they could not tolerate the side-effects. The medication made them feel dull and zombie-like. They lost ambition. They gained weight. Their thoughts became clouded. They couldn't think. They didn't feel motivated to do anything. Their lives had lost a sense of meaning and purpose. Often, there are very valid reasons for coming off medication but we have to be open to hearing them. I don't doubt at all that you want your son to be healthy, happy, alive, functioning. He probably wants the same for himself. In your case however, you believe that his best options for getting to that space are to continue taking medication. He doesn't seem to share that belief but he may have his own reasons for coming off. For some people, medication gets in their way of recovery. If they wish to come off but their family members wish them to stay on, that can create conflict within their relationship. Ideally, we don't want conflict -- we want open communication so that he will come to you if he recognizes something is off or he'll be open to hearing what you have to say if you recognize it first. Of course all this would be much easier from your perspective if he were 12, but he's not 12 -- he's 26. That means that the most you might get are some negotiation points that he might be willing to agree to if he feels you are truly on his side. If he doesn't feel that, he's simply not going to tell you what's going on and that will work against the both of you. If he can continue to do these things without medication, so be it. Prior to stopping the medication, my son had no problem with seeing his primary care doctor when necessary. He is supposed to be seen at least every 6 months because of the spinal cord injury. He is also supposed to be seen if he gets a bladder infection which can happen as a result of using catheters. Well, he has a bladder infection and won’t see the doctor. He has an upcoming routine appointment and wants to cancel because he is healthy and it is not necessary. He also wants to cancel his upcoming routine dental visit for the same reason. Given this, and other, less important things I have observed, I feel like he is on course to crash. Of course, recovery belongs to him. If he endangers himself along the way, I do feel obligated to intervene. Yes, of course you would. Those acts all sound to me like an indication that his level of functioning has dropped. They also sound a bit like depression. I don't know what medications your son was on. Typically, anti-psychotics, anti-depressants, anti-anxiety agents and sometimes, mood stabilizers are given. If he was on all of the above and he's come off all of them at one time, he's probably set himself up to fail. Ideally, he would withdraw slowly one at a time. During the coming off process it may be helpful to supplement with a medication from a different class of drugs and people may be open to making those kinds of concessions, dropping an antipsychotic for example but agreeing to a short term with an antidepressant. On the topic of expanding my vocabulary, I usually avoid even stating his diagnosis. I think it is difficult for doctors to be certain of a diagnosis and I don’t think what it is called really matters. It might matter to him. Either way, if people are going to discuss these matters openly, you need to have a name for the experience. My preferred term these days is "fragmentation crisis". He may have a preferred term as well that feels less stigmatizing or invalidating to him. You function or you don’t. If you don’t, let’s find something (support, therapy, medication, etc.) that helps you be the best you can. It helps me to simplify. Valid points. People who are doing well without medication are not necessarily doing so because they came off; rather, they have found alternate methods of treatment and learned new coping skills so they're able to continue to function even during difficult periods. The more tools your son has at his disposal, the greater his chances are that he'll succeed. Thank you for reminding me that it is possible to have recovery without medication. I will hold on to that hope. Yes, and hopefully your son will as well because it sounds like that's important to him. I do understand that it's frightening and I know what it's like to worry and wonder if a crash is coming. I'm not in agreement with all the decisions my own child has made but they are back to work, they are back to school, they are engaged in meaningful social relationships, and they are not on any form of medication. They're also not finished their recovery and I remind them of the places where they still have work to do and when the decisions they make frighten me because I love them, I tell them that too. Best of luck to you and your son. I'm hopeful that something I've said might have been helpful but I'm not you or your son. Feel free to discard anything that doesn't fit for your situation. ~ Namaste .
__________________
~ Kindness is cheap. It's unkindness that always demands the highest price. |
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#12
Mar 21, 2009, 03:45 PM
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I feel for both you and your son. I know what it is to watch someone suffer and not be able to do anything. My ex was severely bipolar and stopped taking his meds and became psychotic.
Myself I have psychotic depression so I can relate to your son wanting to go off his meds. I am not sure if he thinks just because he is good right now he can go without. That's a common thought and for some people it works like that. They need meds for just a short time and then they can go off them. Others like me are stuck on them. I want nothing more than to be off them but I can't or my symptoms return. He may not be at the point where he feels his symptoms returning. Maybe they won't. I hope for both of your sakes they don't. It is always hard to watch someone get worse which it sounds like he is by avoiding those doctor visits. It might be time to sit down and talk to him and say you are worried. I wouldn't necessarily tell him you think he should be back on his meds. Chances are he knows you think that already. See what he says. I know there are lots of terms for being psychotic. He may have his own and also he own scale of when he has gone psychotic or needs help. You need to find out what that is. For example mine goes like this- if I don't take my meds, I stop eating or sleeping and if I am seeing or hearing things bad enough to disconnect me from reality then it is time for the hospital. If I want to stop taking my meds I have to talk to my doctor. It's a deal I have with myself for my safety. If I break that deal with myself its time to call the doctor or schedule an appt. Other things like hygene and depression I rate on a scale. If they are mild things like I don't shower for a day or I eat just two meals a day (I'm diabetic) then I have just one more day before I have to tell someone I've stopped eating regularly or showering. And together with that person(my best friend) we will come up with a plan. Your son might not be open to having a scale or a plan for dealing with trouble but he might be willing to tell you what would make him go back on his medicine. If he says nothing will make him then ask him why not? Side effects can sometimes be helped by changing the dose or medication that is taken. If he says nothing will ever happen again to make him need meds then say you are just thinking of his history. If he says you are overly concerned tell him its what moms do best. My mother does it and while it drives me crazy I know she is that way because she loves me. If she didn't say anything it would mean she didn't care. It's hard to manage chronic conditions for everyone. I would suggest you find a support group offline as well as this one . You can pm me if you like about anything at all even just to chat. You are not alone. Hang in there. Kayti |
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