Are Family Caretakers of a Mentally Ill Adult Child Helpful?
Last week, I blogged about some good news: Ben, my son, was discharged from the hospital and is getting his life back. He went back to his job, is taking his meds, signed up for fall college classes, and will begin his outpatient program soon. So - some pieces are in place and that sudden lack of structure that triggered his schizophrenia relapse two months ago is gone.
So far so good. But here's the thing. We made a discharge plan that included his "visiting" the family for a couple of weeks while we get the plan cemented, so right now I'm in charge of schedules, medication supervision, and transportation. And yes, I have a "real" job so I can't do this forever. But I am reminded of how much better Ben does when he has a supportive community around him.
Family Caretakers of Adult Children Make Tough Decisions
The question remains: How do we do this? How much caregiving is too much when your "child" is almost 30 years old?
He's getting a little sick of Mommy reminding him to brush his teeth, though - and the dynamic won't be great for long. Plus, there's a business trip coming up for us - we won't be home - and Ben has to be back into his program by then.
So - checking out the options.
I remember clearly the first time I had to make the decision to make Ben homeless. 2003, the year of five hospitalizations. Finally balanced on clozapine, Ben could no longer stay in the hospital - but I knew that, if discharged to my care, I could never get him into the system that could manage his care when I could not. He needed his Social Security, Medicaid, Medicare - and, ideally, a bed in a group home. I made the decision then to be his mother, not his social worker - and it was so difficult. The guilt I felt!
I will never forget the social worker who came up to me after the meeting and said something unexpected that guides me to this day: "Randye, I know that was so hard for you to do - but I applaud your decision. Ben will get into a group home and learn how to grow up. Living with parents, he'd probably never do it. Do you know how many patients we get in here, in their forties or fifties, who still live with their parents and never learned to take care of themselves?"
I took comfort in her words and treasure them now. The reason Ben has accomplished so much since 2003 is due to the fact that he had his own life - albeit guided by the family of caretakers in his group home. Now, in a new "independent living" situation, how do we recreate what worked before? How to guide him from the wings? That's the challenge, and our goal. We are building a new foundation - I hope.
Kaye, R. (2011, August 4). Are Family Caretakers of a Mentally Ill Adult Child Helpful?, HealthyPlace. Retrieved on 2020, February 22 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/08/families-as-caretakers-of-mentally-ill-helpful-or-harmful
Author: Randye Kaye
Dealing with another round of this right now with my 32 year old daughter as I work full time and raise her 2 teenage girls ( had them since they were babies). Feeling sad and guilty, but she chose to spend her money and not stay at the shelter. Absolutely breaks my heart to have to turn away my own child, especially knowing how severe her condition is.
Hello, I just found this site and since I live where there are no support groups. I thought I would try this. The short story is that I have a sister who is diagnosed with schizoeffective disorder, anxiety, and depression. Just recently with diabetes. I naively thought that once she moved home and left her stressful job and had family around she would get better. She has not and I'm not sure why as there are too many unknowns: is she taking all her meds, is she on the right dose? Her psychiatrist doesn't seem very helpful but I don't know. She sees a therapist but told me she has a crush on him so I don't think he hears the whole story.
Her life was in a horrible mess when I first went down south to help her, she owed back and misfiled taxes, spent an entire pension (which she didn't declare) I had to work with work comp to have treatment done on her arm, file for LTD, unemployment, Cobra etc. My husband and purchased a mobile home for her to live in so her rent could be as low as possible. And we had to support her until she had some money coming in. Anyway it took two years of hard work to clean it up. Then it started, she wanted more spending money all the time. Finally it got to the point where she couldn't pay her rent and I told her she had to have a payee, either me or someone else. I just couldn't deal arguing with her all the time. She was ready to have me sign up as her payee until my narcissist mother stepped in and said she was going to do it, until she left for FL for the next 6 months. My sister did get SSdi but once her LTD stopped her income was cut in half. Now one year later my sister has no savings, owes taxes, needs more money for her insulin, other medical bills, her car is 16 years old. She has worked a total of 8 days in two months.
We stopped talking after my mother took over her money except for a bit of chit chat for six months. When she was diagnosed with diabetes we started talking to each other more. I felt so sorry for her, being diagnosed with diabetes was extremely hard on her. It was nice for 2 months before she went back to her old ways.
This whole process has been hell on my health as well as my family. I first was diagnosed with Epstein Barr in 9/15 and in 9/16 was correctly diagnosed with chronic lyme and several coinfections. I am mostly homebound.
This may be horrible to say but I don't want anything to do with my sister or my mother. The stress that has been caused in the last two weeks is murder on my body. Maybe in their on way they love me, but I've been the one that has to do all the work while they just complain and criticize. It's killing me. People tell me that I need to think about my health and I understand that. But it breaks my heart to see my sister living the way she is. Even though my sister has been very difficult I still love and care about her. Not so much with my mother.
Am I awful person for wanting to have nothing to to with my family? Is there a decent book out there for people like me? I just don't know what to do. Thank you.
PS. I meant so say, thanks for this blog Randye. So many stories and descriptions which resonate (albeit painfully). Sometimes it helps just to get things off your chest. Where I live (very rural) there are no groups, indeed nothing at all for carers of mentally ill adults.
I am so sorry to hear of your troubles. My heart goes out to you. It sounds like you have tried very hard to keep your son safe since he became ill. I would listen to his health care team, and ask them what they think is the best course of action for your son. We all have a point we reach when we can do nothing more for a loved one. I would seek a therapist's advice concerning this, so that you can feel confident in your decision. Also, many family members need someone to talk to just to deal with the stress of another family member's mental illness. You deserve that kind of support. I hope you can get it. Take care of yourself.
I've read all the comments and responses on here and it breaks my heart. My son is 25 and was diagnosed with schizophrenia at 18. His father's mother had schizophrenia. I brought up my son on my own until he was a year old when my partner moved in. He acted as his dad throughout his childhood. Like many, my son smoked cannabis at around 17 and his real father has always said this was the reason he has schizophrenia. I don't believe this to be the case, since he smoked so little. He spent some time in his father's home town, had several episodes of psychosis and has been sectioned 5 times. He initially went there for a college course which after one and a half terms he was unable to finish. He has lived in social housing (because after just 5 months his father, who was in another relationship, could not cope) for five years. During his time away he came to me for holidays - half terms, Christmas, Easter, summer.
Many of the accommodations my son has been in have been fully supervised and (even with continuing cannabis use), things did work reasonably well. But they cannot stay in fully supervised accommodation for longer than 1 year and when deemed well enough are moved on to partial supervision. At this point my son's cannabis use gets out of hand and he forgets to take his medication (Clozapine). He then thinks he's much better, discontinues the meds completely, and is sectioned again. This has been the pattern in the last 5 years.
The last time this happened, I was told that a (not very nice) hostel was the last thing available, and since he was now taking legal highs as well, the future looked bleak. His real father withdrew all support in May of last year so there was even less likelihood that he would cope. Unable to bear this, I decided to have him home again, even though he'd only spent 1 1/2 months in hospital and was still very unwell. He has been with me now for six months and although I said immediately that he would need accommodation, the mental health team have drawn things out with several repeat meetings at houses etc., and have now told me that it will be another 5/6 months before he is offered a place, and then (because he has such a bad record) only for a month's trial. I don't know if I can cope with this any more as my son is resentful of my 'rules', i.e. no cannabis in the house. I was an 'old' mum and I am now 64. Having read the other comments, I feel that I must 'let go', but of course I don't want to see him homeless. Should I just present my son (with his suitcase) to the mental health team and tell them to find him somewhere immediately or he will be homeless? My own health is deteriorating. I realise that this is a US blog so there are probably completely different procedures, but do you think this might work? I feel so guilty because I have a daughter still at home who is studying for a degree, my partner is still working and doesn't retire until next year, and his father is now ill so he is under a lot of pressure too.
Hi Deborah, Evie, Karen...
All I can say is I feel your pain - literally. The anger, too. the helplessness, and grief. It is so hard to have an ill relative, and when the illness is of the brain the stigma increases and the support decreases. I hope you can reach out for support (as you have on this page) to NAMI, or other groups who provide education and support for families. How can we help our loved ones if we are at the end of our own ropes?
We are lucky right now. After years of baby steps, our Ben is employed, on his meds (reluctantly, but we supervise) and is getting his life back. This did not seem possible to me years ago. It still can all go away in 2 days if treatment stops. This is why we work so hard to advocate for our rights as family members. My heart goes out to you. You are - sadly - not alone.
I'm lost with my mentally ill son. I am exhausted, my husband has always hid behind his job saying "someone has to make the money here" while all this is dumped in my lap. My career is long gone and still with all my sacrifices I have no idea how we/I ambgoing to get my son settled before I die! Really? I have to make my son HOMELESS before we can get him to help himself?!? He CAN'T help himself! Why do you all accept this? It is inhuman! It is exhaustive and unfair to everyone. The laws inhibit so much of the care our children with mental illness need. The social services are uneffective, buck-passing and immune to everyone's pain. They are either lazy and mean, overworked, burnt out or just completely unable to do what needs to get done because someone or something is tieing their hands. The mentally ill don't have time to worry about if their civil-rights are being violated! While all the legal talking heads try hashing things out we, the actual ones in need of help are ready to scream - then of course solves nothing and creates yet another person too frustrated to use whatever energy they had left flushed down the drain! -Sincerely - who cares?
Love this website. Have a 34 year old mentally ill son who has been staying at a shelter for a week and I can barely stand it. Hands are tied to help. Feel he can't live with us and nowhere for him. The system in this country needs help. People don't understand. I know the potential if he had the help he needs. He needs hope. It has been one failure after another.
I have been looking at my phone every half hour to check if my 24 year old son has texted me. He is in a respite bed,waiting for a bed in a group home. It's late July and he has been homeless since may 1st when I had to call the police(4th time in two years) to take him to the hospital for psychiatric stabilization. WithIn 72 hours he was discharged and believed he was going to return home. I had to tell him that he couldn't return. IHe didn't speak with me for over a month. He was living in a corner of a friends garage while smoking pot and drinking excessively . He didn't take his medication, and had stopped taking it for awhile before this incident.
I have cried a river of tears over the past 8 years. He became delusional when he Was 16 and believed that God was telling him to quit school and pursue a career in music. He was not going to school and I was jeopardizing my job in the process. I am a teacher, and attendance and punctuality is critical. I finally agreed to let him get his GED. He was off the chart intelligent and his scores were remarkable. I took him twice a week into Boston to work with a producer. He recorded four outstanding songs. He was mentioned as one of the up and coming singer-songwriters of Boston.
But his delusions continued and he felt that bugs and animals were communicating with him. He continued believing he was a god. I had to move out of town because he was getting into fights and hanging out with kids who were drinking and drugging. He started stealing his adderal and abusing it.
I couldn't have a life because I was so enmeshed in his care. He verbally abused me every day. Calling me horrible names and making up fictional stories about his life. Accusing me of stealing him from his "real mother" who was a Native American. I cried myself to sleep on so many nights.
I had no idea what to do. It took a few years for me to realize that wasn't going to grow out if his juvenile delinquency, it was something more. One of the guidance council or sat school mentioned that he may have a mental illness. That day I cried in the bathroom for my entire lunch. It rang as true. In my heart I knew he was sick. He was 18 at this point. His music became strange and repetitive. I thought that he may be a drug addict, but I felt that he was far more disabled than his buddies who we're doing similar things. Someone suggested that I find a NAMI family to family support group.
The knowledge that I gained changed our lives. I began to plan. I continued research. I started documenting everything. His pediatrician was not willing to have him involuntarily committed because he wasn't suicidal. But I saved my requests and dated everything. I had a three inch binder filled with events, dr comments and letters I wrote.
I got a strange call one day from a court bailif, saying that I needed to come pick up my son or they were going to transport him to a mental hospital. He had been arrested for stealing a bottle of water from a Pizzaria. They held him overnight in a jail cell because he was speaking in jibberish and they thought he was tripping on drugs. He was still speaking that way in the morning. His mouth would move, and no sound would come out. Or he mixed words and spoke backwards. I wasFREAKED out. I drove him home and hid in my garage as I begged the police to section 12 him. I had learned that this was the only way to have him evaluated involuntarily at my support group. They didn't believe his behavior warranted their intervention. I finally lost it and said that if he had to steal water ,doesn't that prove that his life is in danger? They came. It was a nightmare. A physical fight. Injured officers and my son bleeding from being dragged down the stairs and resisting them. I collapsed in anguish as I heard his screams for help.
He was transported, evaluated and released in 72 hours. he was furious with me. He convinced his father, who lived in New York to let him live there. his dad agreed and ended up packing him up and sending him back after he destroyed his house and was attracting the skateboard drug drug crowd to his neighborhood.
That was five years ago. pain have had to call the police three more times over the following years. He presently has assault and battery on a police officer charges against him. The police are not trained on de-escalation. They come into the situation as though they are making an arrest. It is infuriating.
So I have had to do the unthinkable. Making my own flesh and blood homeless. He has a DMH caseworker, disability income and health insurance, and now a respite bed, waiting for placement in a group home. He agreed to accept a bed in respite because he was being kicked out of the filthy garage he had been living in. He was tired, hot and hungry.
I still cry. I cried the entire time I wrote this. But I have to let go in order to allow room for him to be assisted by experts. These people have chosen a career in mental health. They are Angels in my eyes. It is never ever an easy thing to let others take over. I wonder if I could have done a better job keeping him on track. But my family has insisted that I step back. My friends want me to have fun. My boyfriend would like to have an hour pass without me either taking about jared or crying about him.
I just checked my phone again, he's texted..."when will you be back here? I can't stand this place. Can you put money in my account? I am hungry. The food here is poison. Why are you trying to kill me?"
I have decided to ignore this text. But there will be several more into the night. This is my daily prayer" dear God, please wrap jared in your loving arms. Guide his thoughts. Protect him from harm and lead us all with hope for a productive and healthy future. "
I have an adult son who lives at home with me. He was diagnosed BP II back in grade school. I have raised him alone since he was 8 months old.
He quit taking medication the day he turned 18 years old. I've never had to put him in the hospital. I've always had a plan on how to help him with recovery during and after an episode.
He is now 27 years old. He has mixed episodes of mania and depression and he cycles in days and sometimes hours. His depression cycles are getting longer and more intense and he often gets VERY angry and starts drinking heavily and getting into physical fights with strangers. He goes days and days without showering or changing his clothes. He refuses to brush his teeth, go to the dentist or the doctor. He doesn't seem to have any periods of wellness anymore.
He no longer respects or listens to what I say. He simply does not want to "Have the talk". I know that something has to change. I just don't know what to do. He is not violent at home with me. He is verbally angry all the time but he does not swear at me. He simply refuses any and all guidance.
I've tried to set up a formal written plan with him regarding some house rules with him. Personal hygiene, no smoking or alcohol, no more strangers at the house all night long. Better sleep patterns, eating better. Get him back in college, etc... But he just refuses to discuss anything gets angry and leaves and sleeps in his car for three or more days.
I know that there are a lot of things I've done very poorly. I've supported him financially for all these years, (car, phone, internet, bills). I've slowly been cutting him off financially over the last two years. I'm down to paying his car payment, insurance, and cell phone. I figured if he had a car, he could get a job. He needed a phone so he could apply for those jobs. I had to buy car insurance because my name is on the car.
I know now that he will never be able to hold a job, he will never finish his college, and he will never be well if I continue to enable him.
How do I fix this situation without completely losing what little relationship we still have with each other. How do I cut the ties and let him know that I will always love him?
Do I take his car away, cut off his cell phone and take him down to the homeless shelter and say goodbye?
This is my first attempt at a blog. I do not know if I will get any response. I'd truly like to hear from other parents who've been in my situation and from other bipolor adults who've lived through this kind of situation.
In the meantime, I think it's time for me to schedule an appointment with a counselor so I have someone to vent to face to face until I have some peace.
Sorry it took so long to respond here. As you may know, I have reduced my role here to "guest blogger" so don't always see the comments until later on. As a fellow single parent (for much of my kids' upbringing) and Mom of a son with diagnosed mental illness, I can truly say "I know how you feel". Each situation is unique of course, but eventually we were able to get to a place of hope for Ben. I tell the whole story in my book "Ben Behind His Voices", but yes the heart of the matter is: do I let go or step in? Always a tough decision.
In my case, I did have to declare my son homeless in order to get him back. But it was a risk. After 8 years in a group home (and every weekend with us), he was able to finally secure a job - but that led to a reduction in services where we almost lost him again. Now he lives with us - but follows the limits we set.
You may not be able to "fix" you son, but you can help yourself - and, oddly, sometimes when you take care of yourself it promotes respect from your son.
Have you gone to NAMI? Family tot Family saved my life and helped guide me to know how to help - what I could and could not do.
It's so hard. But it's not too late. You should not have to suffer alone.
I read the prayer and cried...it had to be written by a mother just like me..my son is 20 diagnosed with schizophrenia a little over a year ago. My son is so different now , the once outgoing girl -crazy teenager who was always worried about his clothes and shoes being super clean and always being clean shaved and going out on the weekends is shy,scared, panic ridden anxious,always has a cigarette in his hand...he has no energy no zest for life... my list could go on...but I pray for him and hug him and tell him I love him. Hes my oldest of four children and its very hard we have what I call daily "dramas" with him. It can be that he needs to buy cigarettes or he needs a certain food for dinner. But until he gets whatever the days drama is he is extremely hard to handle. He has been hospitalized twice since diagnosis, in recovery now for 10 months. Every day brings a new challenge and everyday I'm just so thankful that he survived the last hospitalization because he relapsed so bad we almost lost him, his body was shutting down and he was catatonic and had stopped eating and drinking due to the paranoia ...I pray for all the mothers going through this and pray for our sons and daughters ...
Oh, Carmen - How well I know those feelings. How well so many of us know that loss. My Ben is now 31, and while we don't have the outgoing girl-crazy teenager back, there are glimpses of that person now in Ben...and some other "ordinary miracles" too: good college grades, occasional looks of joy, a return of enough motivation to keep a part-time job.
I highly recommend you continue to reach out for support, education, and community - here on Healthy Place, and also at NAMI. The heartbreak is all too real, but you don't have to go through it alone.
Sabra - So sorry for all you are going through. I believe that by speaking out we can make our voices heard, and hopefully make a difference by opening up eyes and ears. Families need support, as do our loved ones living with mental illness. I, too, was a single mother for many years and more than one therapist suggested that Ben's problems were my fault, that I should "let go" of control. This can, as we well know, have disastrous results. We would love nothing more than to be able let go.
By the time many healthcare pros meet the families, we are at the end of our rope - and may seem overly involved, angry, or stressed.
We, too, need early detection, and early support and education for the family so we can learn how to be helpful when possible.
I hope you and your son are ok, Randye
and a comment to donna...i feel like you and i have the same son!!!!! my son did the same exact thing 5 years ago...came home after i called the cops and left with strangers...it was a year of hell after that..and yes, the strangers took full advantage of him...a lesson he learned but i believe he would do it again as he feels I am the problem (and i have been a single mother who has fed him, clothed him, kept him safe and he never left his room-no friends, afraid to go out and having episodes every day of verbal abuse) YOU ARE NOT ALONE!!!!
i live in the bronx ny...my son (23 yrs old) is mentally and emotionally ill (bipolar/agoraphobic-on clonopin)who is also a substance abuser/alcohol abuser..i am at my wits end...i too had him homeless at one point but the state never stepped in...put him in a bad outpatient program which did nothing to help his plight...he's been in 4 psych wards, psychiatrists, exposure therapy, anxiety group therapy, the bipolar disorder group..you name it..we've done it...he is becoming more and more unstable and dont know what to do..i would like him to be in a group home but there are no resources for him!!!! do you know anywhere or can you direct me to someone or something to look into?? i did the tough love thing and it backfired...dont think i can do it again...almost killed me...please any info would be most appreciated!!!
Thank you for your kind and thoughtful response. I am so glad that your son is getting the help he needs. My son has never really complied with any meds and have been kicked out of both inpatient and outpatient programs for non-compliance. This is the first time I have ever reached out for support from someone in a similar situation and I'm glad I did. I will take a look at the book you suggested and get in touch with my local NAMI. Thanks again.
I live in San Antonio, TX and have a 26 year old son who we have taken to the shelter twice and brought back home each time. I am too tired even to list the painful journey of the last 7 years but I suspect I don't really have to. For the first time in his life, my son go a job (washing cars). He's been working for 3 weeks now and just as we always thought he would, he uses his money to buy alcohol. For years we have fed/clothed/sheltered him but have not given him any cash because he uses it to by drugs/alcohol. One of the conditions of taking him back from the shelter was no drug/alcohol use. A couple of days ago, he got drunk on one of his days off and became way out of control. When my husband threatened to call the police (he's on probation) he left the house. He returned the next day with a stranger (i suspect someone he met at his new job)packed a bag and moved out. No matter what we've done, my son has always viewed us as the enemy and strangers as his friend. His delusions are such that he thinks he knows everything even though he has lived in our house in his room for his entire adult life with no friends and/or experiences. I am afraid that whoever he is staying with is only going to take advantage of his lack of experience and whatever little money he is making. He nothing about paying bills or anything needed to live. I feel both terrified for him and at the same time guilty that the house is so much more peaceful with him gone. I know that I'm rambling but I'm wondering what is meant by making my son 'homeless'? What will that accomplish? My husband and I struggle everyday with the agonizing feeling that we are throwing our child away, but while he has never been violent, he is very verbally abusive and does not at all acknowledge that he has a mental illness. He says we are the problem.
Hi Donna - I know, it's so hard. Every case is different, and each family needs to make decisions that are so hard. There is no clear answer, bit it does help to have education and support so we can take some steps. Have you read any books like "Defying Mental Illness" that give some concrete, legal advice? Have you guys found any help/ideas via your local NAMI chapter?
It's about the painful setting of limits - for us, getting Ben into a group home for 8 years gave us all the space we needed for Ben to have other people to supervise his decisions. It was a risk, of course - and now that Ben is living with us again, he knows that his staying here depends on following house rules. That was our process -but it may not be yours. I do know if Ben stops complying with the rules of meds and sobriety, we'd have a tough and risky decision to make -but we would make it.
Like you, we live day to day - and try to share what has worked for us.
I hope you will find more specific responses in a support group of your local NAMI chapter...or wherever you can find kindred, informed, fellow spirits.
hi i just reread my comments regarding my 21 year old son who has been assessed with schizophrenia, just give you an update, he has been taking clozapine for 8 months now, he has had it increased only once, and according to his dr. is recieving a relatively small dosage. He is doing good as far as not expressing any bothersome voices or delusions., But it seems that there may be more we have to deal with in the future as he is still only 21. He has some side effects from his pills that have put his dreams on hold,he wants to be a physical trainer, he didn't finish school, and shows little interest in doing so, he has trouble with taking care of himself, but seems comfortable with the status quo of the safety of our home, his couch, he smokes to much, but thankfully doesn't do drugs, he gets disability cheques, but spends it buying books and video games, I am happy he is not experiencing what he had been just 8 months ago, but would like him to take the next steps to getting back into life, A group home has just opened up in a neighboring town just 25 kilometers from home teach him self sufficiency, how to cook, hygiene, shop for groceries, etc it has rooms, kitchens, tv rooms, equipped with 24 hour care, drs. therapists, it to me is the ideal place for him, and the next step to some form of independence,and to be able to take care of himself. I need to know how i can get him to go, i have mentioned it to him, but he doesn't want to leave his basement gym, which seems to be holding him back I think he might be to comfortable in the security of home and mom. I hope that it doesnt take him 10 years to finally face the fear and anxiety i assume is holding him back. Tough love is not an easy thing for a mother, obviously you know, I guess i am asking how do i get him to seriously consider or to take that next step, without him feeling betrayed. Yikes. His councillor wants to talk to him about it, but he seems to avoid going to see his dr. or his councillor if he isnt forced to. He is suppose to have blood tests and pick up his pills at the mental health center in our community once a week, but otherwise avoids any interaction with the center of his drs if he can.
Hi Frances - oh, my. Yes, this road is no difficult sometimes...and so confusing. Do you live in the UK? Here is the US, I couldn't get my son to "agree" to a group home. I had to make him homeless - very tough choice. Then the state was ab le to step in and "find him a bed". This was hard on us all, but ultimately a great step for Ben towards independence. There is only so much families can do. Your son may still be recovering from his episode, and need time to just "do less" until he is more motivated. Have you been in any support groups for families of those with mental illness? These were of great help to us - if they are realistic and educational in nature.
Hang in there,
I think it's great that you are supporting Ben in his illness; but not enabling him. My marriage ended because my husband and his son were in denial about his son's bipolar / schizo affective disorder. (I wanted C to adhere to his treatment; but they weren't ready to accept it). I pray every day that both my ex husband and his son are making better choices. I am pursuing an MA in mental health counseling because of the profound experience I had, and because I know that there is a lack of support for families dealing with the disorder.
I am a consumer of Mental Illness and my family tried to take care of me when I was diagnoised with schzophrenia at the age of 21. My family was heartbroken and it isn't just my illness, it affects all of society. I have been living on my own since I was 35, but now I know what hell on earth is and it just doesn't affect me. It affects all of my family, and they don't understand my situation. I was doing drugs and I had been since I was 16. The family usually takes the burden of the responsiblity for the adult child that they don't understand and want the best for the loved on affected by the illness. However I feel that the system that is seperate from the rest of services and because it is such a life disabilitating and their isn't much help except group homes which are usually just a economic excuse for not wanting to spend the money because you are no longer useful to society, and aren't contributing to the financaial well being of the social system. However the families are not educated or really aren't sometimes emotionaly capable of helping the loved on because they are emotionaly physicaly and finacialy capable of dealing with a person that is mentally ill. The community demonstrates thier ignorance of the fact that menally ill people do exist and need to be heard. The family assumes the role of sheltering the emoitional afflicted offspring and do feel guilty and their emotional and mental needs do affect them. It is sad that they always tell a person with mental illness that they are in denial, what about the people that are in denial in the community because of their beliefs of a person with mental challanges and need to be more aware of the people with a Mental Illness. Istead of ignoring them and denying them accept them and the more they know of a person, because if we do have a mental problem then don't lock them away and destroy a beautiful work of the creator. And quit denying their fear of them, I am a person too and I do need you as much as you need me.
Thank you so much for taking the time to share your insight and perspective with us. It is so valuable.
One of the reasons I wrote Ben Behind His Voices is to show how education for the family is so vital. Without it I don't know if we would have felt empowered to be helpful to ben. Education helps the family be better partners and help give support in healthier ways.
Hi Mom, I too, found "A Mothers Prayer" on line several yrs ago and posted it in "Parents of Adult Consumers" discussion group on the NAMI website. This prayer reached my core and continues to resonate within me.
After many yrs, hospitalizations, arrest, jail time, homelessness, my, now 30 yr old son is living independently in his own apartment, drives his own truck, has his dog and attends college fulltime. He is maintaining a 4.0+ GPA. But, he is also on an outpatient commitment with forced meds. He lives with schizophrenia, paranoid and suffers severe anosognosia. The challenge for myself is to keep his OP commitment in place, as he will discontinue meds if not forced.
Thank you for posting this incredible poem. I believe it is 'Author Unknown' But, we here know the Author ~ she lives in all of our mothers hearts whom have a child with a biological brain disorder ~
Happy Randye Day ~
i found this prayer on the internet, and feel like it is so profoundly accurate as to what i experienced, from the years before i knew and years since i became aware, it hurts when i think of those years of experience and education that is heart breaking for a mom. we have been through exactly what this mom has been through and all mothers who are advocates and caretakers of our kids, in my case my son who was assessed at 18, and is now 21, he is taking clozapine which has been my god send,as well as his dr.s and councillor, the bcss, and the mental health clinic in our town. its been a tough trip, but i finally see my son again, i pray every morning, and thank god for his progress his smile, his sense of humor, his dreams, i will help him as i need to.. we are now in the position to move on to getting him more self sufficient, he is on disability, i am active, in educating the community awareness and stigma about mental illness, to create the best quality of life in his surroundings that i can. there is now a place in our community that he can learn to be more independant, and i pray that in the future it will be a part of his path, so that he may be more independent of me and his dad. but i am bent on doing whatever i have to do to keep his dreams alive, and letting him know that his experience is god given, we dont always like what we are dealt in life, but there is always a reason and a purpose for it, i hold on to that belief, and believe in it strongly. Peace and love, hugs and prayers to all mothers, families and friends of those who suffer from any form of mental illness, especially schizophrenia, which is what my son has suffered signs of...
A Mother's Prayer for Mental Illness
As I stumble from my bed this morning, help me to remember to be gentle and kind.
My child's mind is shredding into a million pieces. He lives in a constant state of atrocious fear. I can see it in his eyes. Give him peace.
Guide me as I hold him in my arms. Help me to know what to say. What to do. Fill my heart with healing love, understanding, and empathy.
Give me the strength of a thousand angels to hold back my tears. My heart is broken and a tidal wave of grief is overwhelming me with the need to cry. Give me the strength to bear it long enough to keep it from disturbing my child. Help me find someone I can safely bring it to.
Help me answer my family's questions with the same amount of compassion I would want for my self. Help me remember they are hurting too. This is an unwelcomed assault on an entire family. My heart is not the only heart that is broken. We all need time and each other to heal.
As my journey becomes more and more isolative and lonely, remind me that the lack of involvement on the part of family and friends is not always because of the stigma and the ignorance. For many, it is because they are hurting too. They have the privelege of turning to their own lives. This is my family's life now. I must deal with it whether I am hurting or not.
Send me your best physicians and healers. Give me presence of mind, as I walk through the exhaustion of my grief to not settle for just any one no matter how tiresome the journey becomes.
Help me adjust to the idea, that although it appears my son is gone, there will be no goodbye. And that he is still inside somewhere waiting for us to find him.
Infuse the creative part of my mind with solution oriented thinking. Give me hope. Even if it is just a glimmer of hope. A mother can go for miles on just one tiny glimmer. Let me see just a flicker of the sparkle of joy in his eyes.
Guide my hands, calm my mind, as I fill out the multitude of forms for services. Then help me do it again over and over.
Provide me with the knowledge. Lead me to the books I need to read, the organizations I need to connect with. As you work though the people in my life, help me to recognize those that are here to help. Help me trust the right ones. Shine a light upon the right path.
Give me the courage to speak my truth; to know my son's truth. And to speak for him when he is unable to do it for himself. Show me when to do for him what he is not capable of doing for himself. Help me to recognize the difference.
Help me to stand tall in the face of the stigma; to battle the discrimination with the mighty sword of a spiritual warrior. And to deflect the sting of blame and faultfinding from the ignorant and the cruel.
Preserve my love for my family. Shield my marriage with the wisdom of the love that brought us together.
Protect him from homelessness, loneliness, victimization, poverty, hunger, hopelessness, relapse, drugs, alcohol, suicide, cruelty and obscurity.
Lead us to the miracles of better medications, better funding, better services, safe and plentiful housing, meaningful employment, communities who care, enlightenment. Help us to find some way to replace all the greed with humanitarian work and intrinsic reward again.
Most of all, give me the strength to deliver whatever I can to the work of unmasking the man made ugliness of this disease and revealing the human and all of it's suffering beneath.
Finally, when it is my time to leave my son behind, send a thousand angels to take my place
wow, "mom" - your story is so like ours, and that prayer is wonderful. Where does it comes from?
I could bately read this through my tears as my son too suffers, thank uou for this prayer.
Hi Ashley -
thanks for reading my "mental illness in the family" blog on
I couldn't really "approve" your comment, as it is rather off topic, but do
want to answer your question!
Most blog sites are user-friendly - i.e. you just write the way you would
in an e-mail. If you know HTML coding, there is an option to do that as
well - but you don't have to. I took a short course in the basics of HTML
just so I would have some idea of it - but not a must.
If you want to start blogging, then wordpress.com will get you started for
free - including tutorials. Good luck!
Sometimes love means letting go. All the best to you and Ben Randye. x
You ladies give me hope that by making my unwilling son get help, I may be doing the right thing. This is very scary for me to do to him as I know he feels he has no one. He believes that even I am only wanting to get rid of him and I am scared that doing this will drive a wedge into any future relationship I try to have with him. But it's getting so bad that we can't live with him. Someone tell me I'm doing the right thing by forcing treatment on him. I want to have hope that his future is not as bleak as he thinks it is.
oh, Fran - how familiar it all sounds. You know what you have to do...for your own sanity, and hopefully (eventually) for your son's as well. You have your journey, he has his - but you are together for a reason. More support to be had at NAMI - but you probably know that. Hang in there. You are far from alone.
We went through the process of making our son "homeless" early this year, after his 7th hospitalization. At the time, I felt I was "selling him down the river," but these days I can see that, in fact, I was bringing out the safety network of the system in ways I could never catch him when he was to flounder with his illness. He had asked me many times why I can't be his conservator, to which I had to respond that I am his mother, and as such I can advocate for him in ways that brings together diverse resources for him, rather than my having to be so exhausted by his daily care (including the fights over the medications) that I become useless to both of us.
We are still early in the journey to see how it will unfold, but having had the system step in, and with my help to make sure that everyone is on the same page regarding his care, he too has been finally released and moved into a group home and about to start taking classes at the community college.
Reading your post here and your blog (and soon your book) has been very helpful, because your honesty and passion helps those of us int he same situation feel so much less isolated.
Maria - thank you so much for your comments - I'm so glad to know that the blog is of value to you.
Sounds like we have a lot of similarities in our stories! It's wonderful that your son is starting community college, and will have support in a group home - college has been great for Ben, truly, and in his seven years in a group home I felt free to be his mother (you know just what I mean). I am Ben's conservator, btw, and for us it has been very useful (especially if I need access to Ben's medical info).
I admire you so much. You have a beautiful soul, which is most important.
My son suffers schiziprenia and now he is 23 years with the illness.
You have helped me with your story. Thanks.
It's very difficult to know what role to take with a mentally ill relative. Your unconditional love for them binds you to do whatever you can, but sometimes I believe "tough love" must come into play. I am not a relative of someone with a mental illness. I am the person with the mental illness - Bipolar Affective Disorder. I was diagnosed when I was 20 years old and am soon to be 52 years old. I was extremely lucky to have a caring family - mother, father, 5 siblings who all supported me during my episodes.
Now at this time of my life, having just recently had an inpatient stay at the psych ward, my two daughters (19 and 21) cared for me. I absolutely detest going into hospital because of the full blown psychotic nightmare that I experience and also as a patient put on an involuntary treatment order, I have no rights. I "made" my older sister make the decision to admit me as I will no longer admit myself (but that's another story). I put her through a lot of pain and grief as she knew I didn't want to go but she is a very strong person and I knew she would do the right thing and defy me for my benefit.
I am very thankful that I live in Australia with a very good social security system and was put on a disability pension. Everytime I went back into employment I would eventually become sick. I don't understand why doctors insist on getting you back to work especially so soon after an episode. I don't work in a paid job now but I still work for free doing research on mental health, human rights and voluntary work.
Sorry I am going on a bit but just wanted to share something - my 21 year old daughter said to me one day, "Mum I don't you ever want to worry about being alone when you get sick. You can come and live with me". I said to her "I do not want you ever to say that to me. I love you dearly, you beautiful girl but I do not intend to become a burden on your young life." I now have a support system in Brook Red Centre, a peer support organization, and I have a case worker and psychiatrist.
I live with one of my daughters and my niece. I am 4 weeks out of hospital so still have a way to go. Seroquel makes me sleepy and lazy and I've been on Lithium for over 30 years (wonder if that's a record). I am also on Epilim and lots of other medication for various disorders. I feed myself, I shop, I look after my own medication.
I am at present researching the stigma regarding mental health. I agree with Randye about "letting go". I had to let go of my prideful self to let others help me and all I really know is just love your loved ones, even the "different" ones.
Thank you so much for sharing your story here. Your perspective is so valuable, and I applaud your honesty, resilience, courage, and love. To know what you personally can or can't handle is amazing, and I imagine you have gone through a lot to get to where you are. Thanks again, so much. I learned a lot from your comments.