Providing Care for the Caregiver

FEB. 23, 2016

By Dawn Brown

Dawn Brown with her son, Matthew. 

My name is Dawn Brown and I am my son’s caregiver. My son, Matthew, is 33 years old and has been living with a mental health condition since he was 8. He has schizophrenia.

In addition to being Matthew’s caregiver, I am professionally committed to making a difference in the lives of other families and individuals affected by mental illness as NAMI’s Director of Information and Engagement which includes member and HelpLine services.

The research study being released today, On Pins and Needles: Caregivers of Adults with Mental Illness mirrors my experiences as a caregiver and also reflects those of thousands of moms, dads, husbands, wives, sisters and brothers whom I’ve spoken to on HelpLine calls. So I want to think that this opportunity allows me to speak for them as well.

When mental illness strikes an individual, it affects every aspect of their life, and everyone in the family. In most families, caregivers emerge as the ones that step up and step in to meet the challenges of providing care and support to their loved one with the mental health condition.

In my family, I am and will always be Matthew’s caregiver. It’s a lifelong responsibility.

Matthew was a very difficult child to parent. By second grade, he’d received a psychological evaluation and afterwards, meeting with the psychologist and psychiatrist, we were told that our son was psychotic. I was heartbroken and grieved the loss of what I’d hoped and dreamt for my son. This was the beginning of our journey through the mental health system.

When a minor is living with a mental health condition, parents are key participants in decisions about treatment, special education services and meeting their child’s needs. Matthew received the best in all these areas. Still over the course of his childhood and teenage years Matthew required three hospitalizations because violent rages and manic episodes. I was taught how to drop him to the floor and physically restrain him until he regained control as a way to protect him and us from harm.

The stress and isolation were significant. Every outing was unpredictable and friends and family feeling helpless drifted away. The exhaustion of daily battles with Matt was unending. The strain on our family’s relationships rose to the breaking point, and Matt’s father and I divorced. Matt’s older brother broke ties with him. The break-up of families is common and leaving single parent caregivers with a huge responsibility that negativity affects even their ability to maintain employment.

When I remarried, Matt moved in with his father. Still I was the parent that took Matthew to appointments and worked with the school. At his father’s house Matt’s mental health deteriorated. The summer Matthew graduated high school at 18; he moved back into my household and experienced a major psychotic break.

Since Matt was now an adult, I’d lost the ability to have him hospitalized, require he take medication, and see a psychiatrist or even doctor. Becoming progressively worst, Matt would wander through the community sometimes running or hiding because he believed people were hunting him. He’d sit outside of the basement storage area listening and sometimes talking to the voices he believed were from dead people living under the stairs. He thought I was dead and needed his help to get to heaven. He refused to get help. I couldn’t force him, and the mobile crisis team that visited said he wasn’t sick enough or “a danger to himself or others”. There was nothing they could do. “Be careful and call us back when he gets worse,” they advised.

Matthew’s psychiatrist suggested I stop offering him medication expecting that within a few days he would become even sicker, and we’d be able to get help. “Be careful,” he warned. This is one of the most heartbreaking and dangerous situations we deal with on the HelpLine. A caregiver and the individual with the mental illness are put at great risk because help isn’t available until a dangerous situation develops.

Without medication, Matthew’s behavior became even stranger. As precautions, we removed all the knives and sharp objects, placed motion detector alarms in all the hallways and dead bolted the doors at night so he couldn’t leave. We moved the other children into our bedroom. Within four days Matthew’s condition had deteriorated and the Mobile Crisis Team arranged for Matt to be hospitalized. He was cuffed and taken by police to the state’s psychiatric hospital. My beautiful son, so young; he’d never even shaved.

Caregivers of adults with mental illness have great responsibility and very limited authority. After Matt was hospitalized, I was faced with a maze of social support services, mental health care providers and treatment options that required competencies in social work, psychiatry, psychology, case management, negotiation and conflict resolution.

Helping caregivers at this early point after a diagnosis or hospitalization could avoid missed opportunities and false starts and insure that all resources and services were utilized.

As Matthew’s caregiver some of the things I needed to learn, on the fly, included:

  • What was HIPPA? How could I overcome this obstacle, so I could be informed about Matt’s condition and participate in treatment decision?
  • What was needed to apply for disability and access Medicare and Medicaid benefits?
  • What were our community mental health services and how could Matt access them?
  • What were supported housing, day programs, peer support, job training and rehabilitation and what role would they play in Matt’s recovery?
  • What was cognitive behavioral therapy and how to apply its’ principles?
  • Nine different medications required learning about psychiatric pharmacology and drug interactions.

Struggling to comprehend what had happened and how it would change our future, I asked at the hospital about programs for patient families and was told there were none. As an afterthought, I was given a day and time when an “outside group” met at the hospital. It was a NAMI Family Support Group. Later I attended the NAMI Family-to-Family education program. Peer support and family education play an important role in a caregiver’s well-being and equip them better help their loved one.

After two weeks in the hospital, I was informed that Matthew was being discharged and when I could pick him up. Despite the fact that he was still activity psychotic, they felt he was stable enough to come home. I was faced with one of the hardest decision of my life. As my son pleaded to come home, I was advised to say no. Far too often patients are released to a caregiver while they are still in crisis.

Refusing to allow Matthew to come home was also a strategy for finding a long term solution to meeting his overwhelming needs. Patients in state psychiatric hospitals that can’t be discharged to a family member and are too fragile or vulnerable to be dropped off at a homeless shelter are kept inpatient until appropriate community services become available. In fact, they are moved up the waiting list ahead of people in the community because of the expense of keeping them hospitalized is far greater than community services.

It’s all about the money and lack of community resources. A person can wait years, and without a long term solution for meeting the needs of a person with mental illness, caregivers often watch as their loved one begins cycles of repeated hospitalizations, criminalization and substance abuse.

I didn’t abandon Matt when I refused to take him home. Two evenings each week and one afternoon on weekends were spent with him at the hospital. I was a member of his treatment team. I was lucky. Many families are miles away from their loved one because the only available psychiatric hospital is across the state or they live in a rural areas without services.

Matthew was discharged from the hospital into community mental health services 12 years ago, and while he’s made amazing progress, I’m still his caregiver. We talk every day and twice a month we go shopping together. Matt’s receiving disability and working part-time, but I still need to contribute to his income for essential needs. I’m his representative payee for SSDI. I meet twice a month with his group home manager and twice a year with this treatment team. I manage his doctor and dentist appointments. I fuss about hygiene and eating habits.

Occasionally, there have been set backs and my involvement has become essential. Matthew had a period of homelessness, and I spent weeks finding emergency housing and providing transportation. He was falsely accused of a crime, arrested and jailed until the investigation cleared him. I hired his attorney and paid the legal bills. He didn’t receive his medication in jail and required exhaustive support and crisis care services until he stabilized. He fell and broke both elbows that required four surgeries, and I was with him through the hospitalizations and rehabilitations. A housemate and friend was stabbed and killed at their day program, major setback.

Everyday caregivers wait on pins and needles for another call that turns their life upside down, and for many of us the endless stress and uncertainty leads to depression and anxiety.

Despite the schizophrenia and all that Matthew’s been through, he’s accomplished so much. He’s comfortable and happy with his life. I’m his caregiver and recovery partner. I can only imagine how things might have turned out if I’d not been there.

If I had a message for other caregivers it would be “Hang in there.” Well-informed, supportive caregivers are best positioned to provide the time and effort necessary for essential support. A family’s involvement is the best indicator that an adult with mental illness will reach and sustain recovery.

Today, I work at NAMI helping to inform and support other caregivers so they can continue to play this important role.

Today, I want to ask all of you to consider how to best support caregivers through legislation, resources and recognition for their role in the support and recovery of others.

The above post is Dawn Brown’s remarks she shared with members of Congress, policy makers, family caregiving advocates, mental health professionals and others for the release of the research study On Pins & Needles: Caregivers of Adults with Mental Illness on Feb. 23, 2016. It has been edited for clarity and length.


SEP, 17, 2018 08:48:27 PM
I am disabled bipolar with PTSD. veteran but only get SSI. my mother is old together we just have rental a car and very little food we are broke every month if she has a bad tooth or anything happens we have no family. Now I’m 53. I tried to work many times but ends badly how can I get enough help to make up the difference

AUG, 11, 2018 07:35:40 PM
please i need help my son has esquizofrenia and he was having a psychotic episode when he was thinking the dog of the house was the demon and he stabbed. the police arrested and when he was already in the custody the police what they did to my son by beating him up and putting him in the hospital they cause him trauma he has multiple fractures on his face and the police in order to cover they misbehave they charge him with another felony i am a single mom not working and i need help i know some one is going to help me please!!

AUG, 06, 2018 12:34:45 AM
please i need help my son is 20 yrs old, he had a psychotic episode on may with hallucinations and delusions he was in a mental hospital only for 5 days they told me he was going to be ok but after 3 weeks taking risperidone he refuse to continue he told me he does not needed any more !! and is when my nightmares beginning he made drugs y he was walking every day all city with out stop i am a single mother so sometimes i was sleeping with out not he was out side!! then one month ago he came home very delusional and he told me the dog was the devil unfortunately he kill the dog i have to call the police the police was advice he has mental problems, he got scared at the police station and he stared to walk and is when the police beating him up to the point the brake his bons on his face and they put on him another felony to cover they misbehavior !! please plese some one help me !! i

JUN, 28, 2018 04:54:12 PM
Marbella Medina rochin
My son Have a schizophrenia so chronica bipolarI I don't know what to doHe live in the street he Don't One any medicationsPlease help meHis 34 years all

JUN, 25, 2018 09:46:06 PM
I have a son that is court ordered to be in a group home and his life has been changed he has learned so much from being in this group home for almost a year his charges will be dropped and then I can take him home I want what's best for my son but he got help he's doing amazing doesn't he deserve to be with his family

MAY, 20, 2018 10:43:56 AM
Thank you Dawn for your comprehensive article! I am hoping one day a cure will come when we understand the biology/cause behind these horrible disorders. Often the symptoms are beyond difficult to manage even with medication. The disorders seemingly act as a virus wearing down all loved ones in the path...especially the caregivers. No wonder stigma exists. The stress alone compromises the caregiver mental health. There is no blood test as we know. Prisons are the default solution. Mass media talks of the flu or any epidemic other than mental illness and their vaccine (highly profitable for big business?) readily at hand to keep us all safe. I propose we continue to shift the conversation stressing scientific diagnosis and discovery like that of insight with synaptic pruning. Mental illness is a physical illness. As I like to add when quoting NAMI statistics, the brain operates the body. #MentalisPhysical

MAY, 20, 2018 04:09:21 AM
Pamela K Delmonte
I have been taking care of my 44yo daughter for44 years. Its diffucult. Lost my daughter to schizophrenia middle son to suicide, youngest son on herione. Dad died last year! Now Im all alone dealing with both. .cant believe the cruel heartless things people say to me about my kids. Of which are friends and family members. They dont understand the illness and dont want to. They have said a burden they wouldnt want. Needless to say its been daunting. Im very isolated because i dont care to be around ignorant uninformed people. I have had people say my daughter is retarded. No she has a mental illness. Her mind thinks differently. Just cruel. Live in Mich no help here mental health is first place states cut revenue! No day treatment no transportation etc just pitiful!

MAY, 05, 2018 01:07:16 AM
There were times I felt the only answer was suicide/ murder... these were the times I've felt like I can't do life like this anymore. My son refuses to take meds and lives with me. He also refuses any suggestions and refuses to participate in any mental health programs. One day it will all end I hope.

MAY, 03, 2018 09:46:04 PM
My sister is in dire need of help. My 15 year old nephew is in need of going through his ?5th detox for his treatments. He is going through puberty and struggling with the voices and is often physically hurting himself in order to “stop” them from going through with violent/sexual actions. He has now been black listed at many facilities in their state as he is too dangerous when in his manic state as he is already 6ft tool and as you may know they have super human strength when in mania. He was admitted to the hospital temprorarily as he said he would kill himself if he couldn’t stop him from hurting his sister. They cannot commit him to the physciatric ward as he is a minor. My sister has already worked with many doctors and her case worker who are also great but out of options. We are terrified he is going to hurt himself and others eventually, does anyone know of long term solutions for minors the drugs, therapy, and current environment are not enough.

MAY, 01, 2018 10:32:17 AM
Great article - thank you!

APR, 09, 2018 12:29:21 PM
My niece is bipolar/schiz and I am witnessing my once vibrant sister deteriorating before my eyes from the non-stop stress of caring for her ill daughter. She's depleted all of her savings and yet can't return to work due to 24/7 care and supervision of her adult (21 y/o) daughter. Her marriage has crumbled and husband has checked-out and no longer wants to deal with his daughter or the financial burden it has caused. My sister lives virtually isolated because maintaining friendships and relationships is too difficult. She spends her days driving her daughter to see doctors she can't afford and to activities she can't afford trying to keep her daughter involved in life and reality. My sister keeps all knives and sharp objects under lock and key due to her daughter's numerous suicide attempts. She is always bruised and has had fistfuls of hair yanked out of her head from her daughter's psychotic meltdowns. Sometimes the meds help and other times they seem to make my niece worse. There seems to be no way out of this black hole for my sister or her daughter. I'm at a loss as to how to help her. This is a nightmare we can't wake up from.

APR, 07, 2018 11:01:10 AM
Michelle Peterson
I am 61 years old female who's been taking care of my now 67 year old paranoid schizophrenia brother with COPD and heart failure. Married and raising grandchildren. One 14 year old grandson left and I just can't take it anymore. He does well except for when he doesn't get his way and he's six foot tall and he speaks satanic words. And I'm just so tired I can't take it anymore. I love him with all my heart but I cannot do this and wake up every day. I'm going to be in a mental hospital

APR, 03, 2018 03:19:12 PM
Jackie Marquess
My two boys are in their early thirties as so many in the comments are in that age group. WHAT HAPPENED during this period of time, 1980's, that so many children developed serious mental/ psych disorders. Perhaps it is the key to a cure.

FEB, 21, 2018 12:30:52 AM
Rose Stingley
My 29 year old son has scizofrinia. I am has caregiver and will always be. This is a problem for my marriage. My husband and I disagree on how to help him. How do help someone who refuses meds. HEIP!

FEB, 05, 2018 06:33:00 PM
Linda Lewis
I am 64 and have been caregiver for my now 37 year old daughter, whom has been diagnosed with schizophrenia since she was 8 years old in second grade. I am broke, unable to work because she is in need of 24 hour a day 7 days a week supervision per her doctor's orders. I AM TIRED.

OCT, 10, 2017 06:02:32 AM
Mother of a 36 son with bipolar/schizoaffective disorder.

AUG, 09, 2017 07:48:27 PM
Dawn, I can so relate to this blog, because I have an adult son that was diagnosed when he was 19 with schizophreniform. As a divorced single parent, it has been really tough because I had to leave the workforce for 2 years and just returned to work in 12/2016 as a substitute teacher. Thank God that he has been stable enough, for the most part, for me to return to work. We have been living with my sister together for the past 3 years, because my income is not sufficient enough to move on our own. The environment is really not suitable for his happiness, but at this time, I have to do what's best. I am seeking a more lucrative employment opportunity, but it's imperative to find a different source of housing to be with him. Do you have any immediate resources that you can recommend?

Also, he refuses seeing a doctor and taking meds, but he has made progress through the love and nurturing being given from me. I really need some help!!

JAN, 14, 2017 03:57:58 PM
Laura Galvan
It always helps to educate and relate to deter the feeling of isolation.

JUN, 14, 2016 05:44:03 PM
I know you all mean well, but I really do not want any more support, encouragement or compassionate words. Actually it gets sickening after a few years of hearing those condolences and well meaning platitudes.

What I really want is a cure, and please do not give me the "there is no cure line". I am sick and disgusted by that line too.

I know there is a cure for schizophrenia, we just need to invest the funds to find it. I am not rich, I can barely pay my bills, but I know that if enough people donate to find a cure, we can find a cure.

MAY, 19, 2016 09:06:16 PM
Deborah Onofrietti
My daughter is 45 and has suffered with bipolar with psychosis since the age of 19. I am her caregiver and she lives with me. There was a time that she was stable for 10 years. As I write this she is in the hospital with another episode of many. I can relate to the mother from north jersey where I live that there are not enough resources to help. I go to a support group at a local hospital but I wish I had someone to talk with another family member to relate and understand what we go through as caregivers.

MAR, 11, 2016 02:44:12 PM
Susan Inman
Thank you, Dawn Brown, for this powerful account of the enormous struggles you have faced in caring for your son.

I'm lucky that we were living in Vancouver, British Columbia when our daughter developed a schizoaffective disorder. Fortunately, she eventually received appropriate care and has enjoyed many years of stability. However, like many people with schizophrenia, she continues to struggle with the common cognitive losses that frequently occur.

Even though I appreciate how fortunate we've been in comparison to the many families I know in the US who are struggling with this illness, I can see how the failure to implement the best evidence based programs negatively impact people like my daughter. I work to make sense of the larger social context that fails to promote these programs and the trends that instead lead to programs that make it less likely that people can recover. Here's an archive of my articles for Huffington Post Canada about mental illness policies:

MAR, 09, 2016 11:41:39 AM
Paula Radke
Your stories are my stories and it is so unbelievable that our children over 18 can't get help until after they get hurt or someone else does. HELLO???????
We need help!!!!!!!!!!!!!!! Can you spell Columbine or any of the multitude of deaths due to untreated or cared for mentally ill. What will happen when I die? Which feels like tomorrow....

MAR, 07, 2016 03:52:09 PM
Monica Luke
My 35 year old son also has schizophrenia. It is so hard for families to find the care they need and crucial residential care is not covered by insurance! Mental healthcare should be available to everyone who needs it, not just those who can afford it.

MAR, 04, 2016 04:41:42 PM
I also have a son with schizophrenia and had to make the difficult choice to not have him come home (that's 15 years ago!). I found that residential care is hard to come by and not covered by insurance - so I started a fund to help others pay for care. We are small and need to grow. I hope other parents can help me spread the word

FEB, 28, 2016 08:39:53 PM
Rita lutzer
My son was 43 this weekend and his nightmare has been going on since he was 27...he has schizophrenia and has been in jail for stabbing his father ...then 5 yrs in a psychiatric hospital and for the last 3 yrs in a great program which has housing and a day program to attend every day ...he is doing well but will never be there any program for caregivers like me to attend in northern New Jersey...I have tried psychologists and that is not what I need ...please email me if anyone knows of such a group ...Ty. Rita

FEB, 28, 2016 09:28:34 AM
Jenny Enriquez
My son Phillip was diagnosed at age 18 now 32 and has been from one end of the state and back in assisted living or dual diagnosis treatment centers. Self medication became his way to live with his illness. He would get kicked out so he could return home and we finally had to become his guardian since we also could not allow him to live at home because of him and his friends destroying our home and stealing our belongings. Adult protective services and past guardians didn't care he had no where to live so we had to become temporary guardians to try to help him find resources to assist him and have helped him after years of hospitalization and jail time up to 6 months. It's a vicious circle of stabilizing him and then back into the court system. We are presently petitioning the court to have the public guardian that was created by the state of nebraska to intervene since we have become the "bad guys" and strained our parent/support role. We keep trusting in our Lord and Savior and know this is the only way we have lasted this long not to give up on our beloved son. We ask for your prayers that this public guardian will be assigned since hopefully they will have other resources available to help Phil live the fullest life possible and we can continue to support him. God bless all of you and strengthen you daily. Thank you for sharing in your journey.

FEB, 27, 2016 01:22:20 PM
Annie Livingston-Garrett
It takes great courage and energy to do what you do. Just finished Elyn Saks book, THE CENTER CANNOT HOLD, about her journey with schizophrenia. Hope you get a few breaks, through respite or friends, now and then. Will hold you and your son in prayer. I have Major Depression and suffered a divorce due to it.

FEB, 26, 2016 11:45:47 PM
Georgette Howington
Thank you for sharing your heartbreaking experience. I admire you for continuing to be your son's caregiver. My only child, now 41, is gravely disabled because of schizophrenia. I empathize with you wholeheartedly. We go on doing the best we can for our children. The toll it takes on us is immeasurable. I took the Family to Family course and wish I had time to volunteer with NAMI. Best wishes to you and your son.

FEB, 26, 2016 05:17:48 PM
Susanne Currivan
Thank you for telling your story. I love my 20 year old daughter more than my own life. She was diagnosed with schizophrenia several years ago and being her caregiver seems overwhelming a lot of the time. I would never wish this diagnosis on any family; however, it is reassuring to know that others have found ways to protect their kids, navigate the system and also have a life as much as possible in these circumstances.

FEB, 26, 2016 04:43:56 PM
Barbara Corr
I have lived this story for 15 years with my son. My biggest challenge now is trying to figure out how to accommodate for him after I am gone. Thank you for your article. It is such a clear picture of what it's like to walk this path.

FEB, 26, 2016 04:37:25 PM
porfirio j. calderon-leal
I kwon how you feel, I being in the same situation that your son has being. GOD bless you.

FEB, 26, 2016 03:06:46 PM
I would like to open the discussion to include those who are caring for the developmentally/intellectually disabled who, in their 20s or 30s, also develop behavioral/mental illness. I never knew this could happen. Frightening to watch a practically non-verbal adult with functoning age of a preschooler develop depression, OCD and panic/anxiety attacks.

FEB, 26, 2016 01:50:08 PM
judy ives
we do not have those type of support systems here in pensacola, fla., he has been baker acted/marchment/acted so many times. he had been off his anti-psychotic meds for about a year. at the....(my son thought i robbed him from birth from his real mother). they put him in jail...end of october. he was considered a fighter because he beat up a man for trying to rape him. not sure if that is true or from the voices.

let him out on bond (still not on meds) and was exhibiting the same behavior as oct so i called to baker act him. they took him back to jail.

i talked with a commander there (who was a father)(we did not violate any hippa law)...and he assured me he would be put in the medical facility. a week ago they put him back in the general population.

i want him put in a mental facility which does not facilitate violence (i am trying to deter any verbal or physical violence). he needs the assistance of a "semi" institution. where he goes in for about a month. last time the doctor and i agreed and testified to a judge that he needed further inside assistance....the judge asked, is there an available bed and was told no. that was the end of that.

if anyone knows anyone who can help me get me help i need to move to a more appropriate facility, i need it.

FEB, 26, 2016 11:48:30 AM
Thank you for sharing your story. I am the proud mom of a beautiful, kind spirited 21 year old son who has schizophrenia. My story is very different...when he was a youth (14) I was his caregiver, advocate, support system, and most importantly, mom. Then as soon as he turned 18 and was told that he is an "adult" he retracted all of the releases he had with his providers and I am no longer able to be a part of his "team". It is the most helpless feeling you can ever have. My son currently lives in a community residence, but because of medication non-compliance, substance abuse concerns and not engaging in services, he quickly decompensated and is now in a psychiatric crisis unit waiting a long term psychiatric placement where they are hoping he will stabilize. I am a Parent Advisor for the NYS Office of Mental Health and work hard to educate the providers and staff on the importance of family involvement.

FEB, 26, 2016 11:26:06 AM
Thank you for this thoughtful article. My daughter is 37 years old and is rapid cycling bipolar sufferer. At times she easily accepts my assistance but refuses help much of the time. She is struggling to be independent and wants to live a "normal" life. She is realizing it isn't possible until she and her Dr. find a medication combination that can stabilize her condition. She won't live with us and so my husband and I drive two hours each way to bring her bottles of water, etc. etc. Sometimes she doesn't have the drive to drink water. We have had to deal with Doctor's reluctance and HIPPA's restrictions constantly. We too are "living on pins and needles."

FEB, 26, 2016 07:26:47 AM
Terri Charison
Thank you for all that you do Dawn! I facilitate a support group for families and am affiliated with NAMI. I can't say enough good things about NAMI! The Family to Family session really helped me to learn so much and meet other caregivers going through all that you wrote about. Keep up the great work that you are doing! My hope is that others will see the need for us all to ban together and be advocates for our loved one's. God bless you!

FEB, 26, 2016 06:18:25 AM
When we are talking about caregiver job for our loves ones does it mean it's a pay job? If Yes- who to start it?

FEB, 26, 2016 03:13:51 AM
Mary Le Compte
Thank you so much for writing this I myself am Autistic Disorder 299.9/ paranoid Schizophrenic my two youngest are also Autistic my daughter is Schizoeffective/ ASD for the most part she is making it age 22... My son who is ASD severe and now they're having to acknowledge his Schizophrenia also and he will always need a caregiver which I am... My greatest fear of not getting him conserved by 18 he is 15... We're in a battle between Regional Center and now County Mental Health over what type of services are going to benefit it's psychotherapy vs ABA ... Which his doctors have already said he needs CBT not ABA but Regional Center is not listening and has said I'm blocking his ABA ... We tried for the second time and it sent him into the hospital with SIB and he became physically sick from the constant social interaction... The hospitals primary was psychosis thought disorder and now Schizophrenia is down finally... No one is listening to me because I am... There seems to be confusion also on how to treat... For me it's simple when I was young the LOVAS stopped and the talking and working my way back to reality began and helped tremendously I don't understand why it's so hard for them to get it... This article is amazing and I thank you for writing it; gives me a heads up on what is instore and I thank you for that😋

FEB, 26, 2016 01:12:48 AM
Camille S.
Dawn, thank you so much for publishing and sharing your story. I am also a single mom, caring for my 29 year old son w/schizophrenia. It is a difficult, long road, and many days very hard to hang in there. Thank you for your reminder we are not the only ones going through this, there is hope and we help bring happiness to our children, through our consistent support.

FEB, 26, 2016 12:24:11 AM
Sue Ann Sabanski
Thank you. this was a wonderful thought provoking article. I am a caregiver for our daughter . She is in state hospital at this time. She has not improved in the year she has been there. Now is she is to be discharged as you mentioned still delusional. We love our children and want the best for them. In this country mental health care can not stay on the back burner We need to join our voices in demanding the best care and safe housing for our loved ones.

FEB, 25, 2016 11:02:54 PM
Cathy Anna
Thank you for sharing your story!

FEB, 25, 2016 10:12:43 PM
Debbie Anderson
Thank you so much for sharing your story. My son is 35 years old and he has had the paranoid disorganized schizophrenia diagnosis since age 20.....he lives at home with my husband and I taking his medications and they work pretty good but the voices and delusional thinking have been constant for the last 9 years...every day is hard and can be very scary at times but I am his mom and I want and need to be a part of his daily life... every day my son gives me hope as he wakes up ..takes a shower...does his chores...and waits to see if maybe the voices will be gone this day...Nami is the glue that keeps me together each day to take care of my son....thank you Nami.there would be nothing is there wasn't Nami...

FEB, 25, 2016 10:01:51 PM
Kathy Adams
Our son was diagnosed with schizophrenia at age 19, much later than your son, but have gone through much of the same struggles. He is 24 now and has had many horrible life experiences due to his MI. Lost his job, car, apartment, friends and girlfriend, felonies charges that were later dismissed and over 16 hospitalizations, most involuntary. We also had to make the soul-wrenching decision to say our son could not return to our home. Despite this, our son is doing much better now with the right combo of meds that control his symptoms, a group home he resides in (only a few blocks from our house!) and some insight into his illness now that has translated into more med compliance and far fewer hospitalizations. He even asked us to take him to the hospital the last few times! He has wrap-around services thru our county mental health agency, we are his parents and his legal guardians, so we can share info from his healthcare providers. The same mental healthcare agency provides his housing and is the payee for his disability and we take him to all his doctor apps, monthly budget mtgs, lab tests and case manager apps. We are blessed to have such a great system in place in our area. He smiles some now and actually comes up and gives us hugs unexpectedly saying "love you!" What a blessing.

FEB, 25, 2016 09:59:42 PM
Ana Moreno
It is painful and heartbreaking...It hurts and there are moments of hopelessness...deep sadness...My son is 18...It happened all of the sudden...and to be informed..yo be share with have not an easy task...the mental help process is slow and some people that has not experience to live with someone dearly and truly love with schizophrenia can dissapoint us and hurt us...I keep praying for God to give us the strength and to Bless us living our lives one day at a time...Thanks for sharing and thanks for this support that Nami offers...

FEB, 25, 2016 09:46:07 PM
Tammy Kelly
Thank you, Dawn, for sharing your experience as a caregiver. Sometimes I feel like a weirdo because I have to take my 26 year old son with me almost everywhere I go and can't really enjoy any time out with friends or by myself except for a couple of hours on the weekends when my husband is home to watch him. He isn't schizophrenic but he has anxiety and dissociative disorder and a drug addiction. He gets very anxious when he is alone and does all sorts of self destructive things, including self harm and dissociation. It is so embarrassing to try and explain to my friends that I can't go out to lunch or shopping and I can't have a job or do much of anything by myself. One of his therapists told me to say, "My son has a condition which requires my constant supervision." I used it today, as a matter of fact. My friends seem to understand. I find connecting with friends on Facebook helpful.
When I applied for disability for my son, they gave it to him with no hesitation when they saw the long list of hospitals and treatment centers he had been to. We have tried to put him in apartments about six times in the past several years and he has ended up in the hospital after only three to four weeks every time. He is living with us again and we keep our wallets, car keys and checkbook so locked in the bathroom closet and any valuables in a safe deposit box at the bank. He does best living here with us even though it is difficult for us. Yes, there was a time when the stress almost caused our marriage to break but someone helped me when she reminded me that my husband was in his own sort of recovery as well, as are all families of addicts and mentally ill people. Since then, I have learned that, because of all the stresses of having a mentally ill family member, we caregivers must treat ourselves every time we can with super extra gentleness, kindness and patience. And we should treat our fellow caregivers with appreciation and the same extreme kindness and patience. I wish there were a NAMI family support group in my town but even if there were, I couldn't leave my son alone in order to attend.

FEB, 25, 2016 08:04:29 PM
Chauncey Henderson
Thank you for sharing your story, I am a caregiver to my 24 year old son, who one day was fine and the next day he was ill. Not wanting to run away from Son, Ive hung in there for him I've lost jobs and my marriage because no one understands that this is a process. I've found strength through prayer and now I will find strength through NAMI I refuse to give up on my son.

FEB, 25, 2016 07:43:15 PM
Karen Blackmon
My son is going to be 45 years old this year.He was diagnosed when he was 20. I could write a book about the last 25 years. However, the bottom line is today I am his only caregiver. He has to live at home now due to financial restraints. I have a 12 year old daughter who is caught up in the middle.I am at my wits end. I have to take so much medication for depression to keep myself able to care for him. He takes his medication everyday, but still is not able to function in society.

FEB, 25, 2016 07:43:06 PM
Everyday I have to deal with unexpected things that my schizophrenic daughter does.

She has accused us of trying poison her, that we are not her parents, that she is a hostage, and the list of things that she had said or done is miles long. it is always one strange and bizarre thing after another, after a few years of these daily events, your soul is pretty much numb.
you said "Hang in there." seriously that is not much of a help.

what we really need is a cure, there is one out there, we just need to find it.

FEB, 25, 2016 07:40:47 PM
Debbi Bradfield
I have two daughters 11months apart. They are 18 and 19. Both suffer from Bipolar disorder. I am their care giver ,case manager,advocate,therapist. Etc. I can't imagine just being Mom.
I am struggling with all these issues. Safety in our home. Lack of information on their choices etc.
Thank you for putting words to my reality.

FEB, 25, 2016 07:02:43 PM
Bonita O'Neill
Thank you for sharing your story. It could be mine. And thank you for advocating for caregivers. When I asked for help, I was told, "He might get better."

FEB, 25, 2016 07:01:46 PM
Gina Pruitt
Dawn, I so appreciated and identify with your story as care-giver and guardian for my 31 year old son with schizophrenia. I am grateful for every day that he is alive, responding to treatment and not psychotic. I have learned a lot about myself and what truly matters in this journey with his illness. My heart goes out to all parents dealing with this.

FEB, 25, 2016 06:45:20 PM
Thank you so much for sharing this and your encouragement. My son is 31 and we've been dealing with mental illness since he was 9. I think people like us scare some who have recently entered this battle because they see it is a lifelong commitment. Thank you for saying, 'hang in there." That is truly the best thing each of us can do.

FEB, 25, 2016 06:40:11 PM
Mary W
I am the caregiver for my 30 yr old son and my 16 year old daughter. Both have mental health issues and are both at home. This is all over whelming and isolating. Very few people understand and it takes a toll on thos who are their support. In NC our Governor took the Mental Health money from them.

FEB, 25, 2016 02:37:02 AM
Samuel Barringer
Wow, that almost sounds like taking care of a senior citizen. My mother and aunt and uncle had a difficult time taking care of grandmother and she was not diagnosed with mental illness, thought she might have had some form of dementia, she died but it was very sad to see her slowly detieriorate and die. Maybe I can somewhat relate to what you are going through.

FEB, 24, 2016 03:26:26 PM
April Hankins
I'm a caregiver for my daughter . This article was heartbreaking, I am glad your son is doing better.

FEB, 24, 2016 06:07:02 AM
Thanks for sharing..eventhough I have only been in my fiancé life 2yrs,i can relate to your story..before I came into his life everyone in his life had drifted away from him and had no support what so ever..and I have been his caregiver,supporting him financially and being his voice and guiding him to resources to make some what a life for him,..he's been instutionalized for 14yrs because his family honestly didn't want to deal with him..and I Thank NAMI cause through them I was able to gain some understanding and be a help to him,i love him with all my heart and we are still trying to get balance but we have progressed since Day#1 but it's an everyday task. I am grateful to be in his life and I also don't know what his future what would of been if we hadn't crossed paths,i believe only God knew what he was doing because he needed someone to hold his hand and be his caregiver.

FEB, 23, 2016 09:17:23 PM
Deb Schmudlach
Thank you so much for voicing what so many other parents are going through. I feel like I could've written on your blog entry myself – as a parent of a now 18-year-old with schizophrenia, I feel so isolated and overwhelmed with everything that needs to happen to keep our son safe.

FEB, 23, 2016 07:33:42 PM
Mary wickham
Thank you so much for sharing your story. As a care giver of my 34 year old daughter. I related to many of the circumstances you spoke about and I thank you for your honesty. Blessings to you and your son

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