Why do we need National Guidelines for Assisted Outpatient Treatment? Why do we need to stand together?

For those who suffer from an untreated severe mental illness, time is brain. With each psychotic episode they lose the brain cells they will need to recover with. To make things more complicated, a symptom of the illness (a brain malfunction in the frontal lobe) prevents those who suffer with this from being able to realize that they need help. It's called anosognia. Insight and Psychosis by Xavier Amador & Anthony David. Brain & Behavior Quarterly Spring 2012 page 30, gives a simple yet important breakdown to mental health. Step 1 Discovery: Understanding malfunctions in the brain. Step 2 Treatment: Reducing symptoms and retraining the brain. Step 3 Recovery: Supporting rehabilitation to enable full, productive lives When a person suffers from anosognia they do not want Step 2 because they do not think that they are ill. Untreated, they will continue to loose brain cells. Step 3 can not happen without Step 2 for these few who have such severe symptoms. It’s just common sense. Some who have a severe mental illness but do not suffer from anosognia can get help on their own. Only a few cannot because their symptoms are so severe. Their brain disorder is so severe. That’s why we need AOTs in every state. To help those who cannot help themselves. To save lives. 
 With well written Assisted Outpatient Treatment Laws! Kendra's Law in New York reports (in spite of not being a perfect program) many benefits of AOTs! But where is NAMI? Where is NAMI's voice in this? Why is their voice silent? Even SAMHSA is looking at the benefits of AOTs. "Via Treatment Advocacy Center: "Duke University professors Marvin Swartz and Jeffrey Swanson gave highlights of the many AOT studies that they have conducted in New York and North Carolina, dating back to the late 1990’s. Their findings made a persuasive case that if properly implemented, AOT is a cost effective means to improve outcomes for people with severe mental illness who struggle with treatment adherence." Full article: http://www.treatmentadvocacycenter.org/about-us/our-blog/69-no-state/2444-samhsa-starts-a-conversation-on-aot

'Help When You Need It' If you live in the US, check it out!

Alex Gottemoller, around 26 years old, created this wonderful site in order to help others in need. It’s a great resource! Thank you Alex! http://helpwhenyouneedit.org/

Caregivers: Warning Signs That Shouldn't be Ignored!

Stigma is born from the severe symptoms of the few who's bio-neurological brain disorder/disorders control their thoughts and their actions. Compliance to the right treatment is crucial. Hospital beds are critical. Treatment BEFORE Tragedy! Copy and paste the link below to read about the warning signs! http://edition.cnn.com/2013/11/19/health/mental-health-violence/index.html

When HIPPA (the Health Insurance Portability and Accountability Act of 1996 in the United States) Law isn't your friend...

From the article posted in Treatment Advocacy Center's Blog written by Doris Fuller: 'Running Head On into HIPAA – personally speaking' So many caregivers and family members who try to get the needed help for their loved ones over the age of 18, who lack the needed insight to seek care for themselves, run into the HIPPA brick wall. Leaving them helpless in the whirlwind of the trauma and drama that an untreated or treatment resistant bio-neurological brain disorder with severe symptoms brings. Please copy and paste the article address given below to read the full and insightful post. This is one major road block we need to remove to insure that timely medical treatment can be made available to those who need it the most! "Being a professional advocate for better mental illness treatment policies and a personal advocate for a loved one with severe mental illness has both drawbacks (a 24/7 “job”) and benefits (I know exactly how the system can and should work for individuals in crisis and their families). So when I found myself in a hospital emergency room in the middle of the night after my daughter’s hard-won stability of nearly two years faltered this week, I figured I was well-equipped to handle whatever the night brought. I wasn’t... ...After the standard admonishment about the privacy act, the attending physician added that – because she was a psychiatric patient and experiencing disordered thinking – my daughter wouldn't be allowed to authorize release of her own information either. “Wait!? So you’re telling me that because you’ve decided my daughter may not be able to make decisions in her best interest right now, you are going to leave all the decisions about what's in her best interests up to her?!? Or to doctors who've never laid eyes on her before?!?” Exactly." Read more: http://www.treatmentadvocacycenter.org/about-us/our-blog/127-va/2443-hurtling-head-on-into-hipaa-personally-speaking

No More Shame!

"Cognitive Enhancement Therapy Improves Emotional Intelligence in Early Course Schizophrenia: Preliminary Effects"

"Cognitive Enhancement Therapy Improves Emotional Intelligence in Early Course Schizophrenia: Preliminary Effects" from NIH Public Access (link to article provided below) What this translates to is that time is brain when dealing with a severe brain disorder. When early intervention and the proper treatment for that individual has been secured along with appropriate support services, then there is hope. Don't hesitate. Do what is needed to address the destructive and unwanted symptoms of a severe brain disorder. This is such a critical pivotal time. The longer a person goes untreated or improperly treated severe brain disorders, the more symptomatic the are. The more symptomatic they are the more severe the symptoms will become. The more severe the symptoms become, the more brain cells that are needed to 'recover' are lost. Get your loved one help for any severe brain disorder as soon as you can. Continue to fight for the right treatment until the disturbing and often dangerous symptoms have been addressed. Continue to fight for their right to treatment and an improved quality of life. They deserve it. You deserve to have your love one back as free from the control of their illness as possible! THE RIGHT TO TREATMENT! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921636/

Why We Must 'Steal' Information From Other Brain Disorder and Caregiver Sites...

We face a great need to change the classification of severe mental illness to severe brain disorders and approach treatment similar to the way other brain disorders are approached. For example, the issue of caregiving itself. There are so many resources available to families who have loved ones who suffer with the brain disorder of autism, dementia, and Alzheimer’s. All have similar cognitive and behavioral issues that family members need to resolve. Yet, for families who have loved ones suffering from a brain disorder of schizophrenia or bi-polar disorder (just to name two), there is little out there for support in caring for their loved ones and for caring for themselves. Below I have given an all too familiar bullet point list of cognitive issues that caregivers of severe brain disorders are all too familiar with. However, this is written for families who are caring for elderly loved ones. The information is still fairly applicable however, why isn't this information offered widely to caregivers of those suffering from schizophrenia? One reason that comes to my mind is that Schizophrenia is not recognized as a medical disorder, a true brain disorder, but is linked to substance abuse and therefore it is believed to be a condition that can be 'recovered' from as opposed to being a chronic medical condition that can be successfully managed with appropriate treatment and support services. For now, we must 'steal' information from other brain disorder and caregiver sites so that we can better care for our loved ones and ourselves. Family Caring for Family Navigating the landscape of caring for your elderly loved one; and thriving along the way proved by Aging Care Cognitive issues can be problematic in caregiving. Again, change the words elderly and aging to severe brain disorder and I think that most apply. On page 6 of the eBook (link given below for you to copy and paste in your URL address box): Here are a few additional indicators that your loved one’s cognitive troubles may be caused by something more serious than the simple advancing of age: Signs That Cognitive Troubles May Be More Than ‘Old Age’ Bad judgment (poor financial decisions, public outbursts) Movement issues (stiff movements, hunched posture) Loss of inhibition (saying or doing socially inappropriate things) Language problems (can’t form coherent sentences) Hallucinations and delusions (seeing things that aren’t really there) Trouble performing familiar tasks (can’t remember how to get to the doctor’s office) Memory loss that interrupts daily life (regularly forgets recent conversations) Ultimately, it’s up to you and your family to determine if, and when, a loved one’s cognitive issues warrant investigation by a medical professional. http://www.agingcare.com/eBook/FamilyCaringForFamily/AgingCare-FamilyCaringForFamily.pdf

When the Caregiver is Being Abused by the Person Who They Care For

For us, who have endured verbal abuse, cruel manipulations, and even physical abuse from a loved one who we are caring for, we face a very difficult challenge as there isn’t much assistance for us to start with! Let alone assistance with an abusive loved one! We have to ask ourselves these difficult questions, “Should I put up with this abuse? Should this be tolerated due to our loved ones condition or not? If not, what are our options? Calling the police isn’t always the best choice, so what CAN we do?” Treatment Advocacy Center’s ‘Catalyst’ proposes that Assisted Outpatient Treatment (AOT) laws are the answer as when this behavior occurs it is usually from untreated or treatment resistant severe brain disorders (severe mental illness) and with proper treatment, the issue will be resolved. While I strongly support the implementation of AOTs, and agree that this is the over all solution to the disturbing and disruptive behaviors from the symptoms of severe brain disorders, this doesn’t offer help for those who need it NOW. It is still a worthy cause and one that I personally feel we need to continue to lobby for until every state has full implementation. ‘Hope for overwhelmed family caregivers Assisted outpatient treatment significantly reduces caregiver strain’ by TAC Executive Director Mary T. Zdanowicz, Esq. http://www.treatmentadvocacycenter.org/storage/documents/2005springsummercatalyst.pdf But what can we do NOW? How can we protect ourselves and still provide the needed care for our loved ones? Perhaps if you list out problem times you might start to see a pattern. Then you can try to come up with some common sense solutions. Plan on the abuse before it happens and have a plan on how to work around it. Remember, with all information you read or hear, take what you need and leave the rest. I strongly suggest the following for your consideration: Know the patterns of your loved ones abuse. What sets them off? Plan for it and work the plan. Change it as needed. Remember, safety first! I strongly suggest that you consult with a specialist when devising your plan. Where is your loved one’s behavior at it’s best? If you see the signs of your loved one becoming more irritable, try changing you location. Where are you the safest? Usually in public or with visitors in the home. So, either try calmly removing yourself from the area or invite a guest to come visit. If you can’t get out, then remove yourself to another part of your home. This may mean going out or locking yourself in the bathroom with some good music or reading materials until your loved one is more calm. Install a dead bolt on your bedroom door so they can’t follow you and so you feel safe. Make sure you have your phone at all times! Remove all sharp and blunt objects that can be used as weapons against you. Call a crisis team out for an evaluation. Explain to your loved one that it is the behavior that is making you uncomfortable and concerned about their wellbeing. Go to therapy! Get some professional guidance for your specific situation. Make sure they have a strong background with a lot of experience with your loved one’s illness! Talk to your loved ones doctor about this disturbing behavior. If you are not the HIPPA agent then just inform the doctor about the issue. They will usually listen even if they can’t comment. You can request the doctor’s office calls your loved one in for a visit and they can then address any medication adjustments or recommend group therapy. Become the HIPPA agent or get power of attorney for your loved one so you can consult with their doctors. If your loved one is able to reason, you might find Dr. Amador’s techniques helpful in de-escalating the situation before they become abusive. There is information just for family members: http://www.leapinstitute.org/family-members/ Also, I think the articles and blogs below show that the problem of abuse and violence against caregivers is not limited to those caring for those who suffer from a severe brain disorder (severe mental illness). It’s a much wider problem with no clear answers. They seem to have the same frustration as we do trying to deal with this problem! We are not alone! If you substitute “elderly” with the illness your loved one has, I think you’ll find the information given below still useful. “I'm starting to feel abused by being a caregiver. What can I do about it?” from Caregiving.com In this ‘blog’, a caregiver expresses how she feels taken advantage of by the person she’s giving care to who is not a family member. The advice she receives is one of drawing some hard boundary lines. Read it here: http://www.caring.com/questions/how-to-prevent-being-an-abused-caregiver “What can caregivers do when they are being abused by the elder they are caring for?” from Agingcare.com “...my mother has mental problems and emotheral. as well. she is a drama queen , she claims she in pain or somthing else she yells at me and my dad and treats him like shit she should be in anger mangerment class. i will leave it like this for now theres more. i would like to have proof that family member get abruse from their parents. thank you” You can sign up for an e-mail newsletter from this site. Answer and full issue at: http://www.agingcare.com/Questions/what-can-caregiver-do-if-being-abused-by-elder-143538.htm ‘Abusive behaviors in elders’ from Eldercarelink “...Caregivers Must Somehow Manage 
There are no simple answers to the dilemma of elders who abuse their caregivers. Caregivers' voices need to be heard when a caregiver feels abused by an elder. Such allegations should be taken seriously. 
If you are a primary caregiver to an elder whom you perceive to be abusive in any way, here are a few thoughts. Share your frustration and concern with someone you trust, whether in a caregiver support group, your doctor or your elder's physician, or a representative from your state's aging agency. If your elder has been diagnosed with Alzheimer's, contact the Alzheimer's Foundation 24/7 hotline. A counselor should be available to assist you and offer helpful advice. Call (800) 272-3900. If Alzheimer's is not the culprit, there still may be an underlying medical or psychological disease process, including stroke or personality disorders, so be sure to let your elder's doctor know what is happening. If abuse ever rises to the level of an emergency, consider whether to call EMS for assistance, be it for yourself, and/or your elder's safety. Your elder may be better off in an appropriate long-term care facility where staff is trained to handle similar resident profiles. Is assisted living an appropriate housing alternative for your elder? If the answer is yes, contact a geriatric social worker or your state's aging agency to help you get started. Retaliation and elder abuse is never an option, of course. If nothing else, hire respite care that will allow you to get out and away more often. You do not have to love someone to assist or care for the person. If not love, think compassion and tolerance. Don't be afraid to invite other family members or visitors over. Random visits may be more helpful to you if you are an abused caregiver. A well-timed visit may expose strained relationships and yield possible evidence of bodily assault to the caregiver. Most importantly, as the song says, there comes a time to know when to fold 'em and when to walk away. Ask for help and keep sharing!” Full article: http://www.eldercarelink.com/Other-Resources/Caregiving-Support/abusive-behaviors-in-elders.htm ‘Seniors Who Abuse Their Caregivers’ from The Eldercare Team For every identified case of elder abuse we are convinced that there are at least as many seniors abusing a caregiver. This abuse is rarely recognized outside the caregiving circle, and caregivers who are being abused on a daily basis are desperate for support and resources they can't find or are afraid to ask for. Full article: http://www.eldercareteam.com/public/642.cfm

"How to Spot a Bad Therapist: 10 Major Signs" via Psych Central

I know that I've had trouble finding the 'right' therapist for my son and myself! Here's what I think is a good jumping off point for making the best choice for your needs via Psych Central link given below: "...It can be much easier to spot a good therapist. We all look for kind, loving, compassionate, caring people to connect with. It’s who we are, how we have been molded in society and even in our families. The first signs we look for when we meet someone is smiling, eye contact, and maybe touch (a touch on the arm or hand) to convey friendship or commonality. When we don’t see this, we often do one of two things: Ignore the behavior: Because the therapist may offer cheap rates, may be close to home, or offers other incentives. Make excuses: “Maybe they are having a bad day,” or “maybe he/she just doesn’t like me.” “Maybe he/she needs time to warm up to me!” Does this sound familiar? But when seeking help from someone who will be diagnosing you, giving recommendations, referrals, and offering insight, you really need to be picky..." Read the article to get their full list! Leave a comment on what technique works for you! Full article here: http://blogs.psychcentral.com/caregivers/2013/10/how-to-spot-a-bad-therapist-10-major-signs/

Loss, Depression, and being a Caretaker

This article from webmd.com, touches on the issue of depression due to loss. Being a caregiver of someone who suffers from a severe brain disorder can mean experiencing a sense of loss on a very wide spectrum. Some lose their loved one to suicide. Others find that their loved one has changed since the onset of the illness and they morn the person who they use to be. The loss of the feeling of trust can also be devastating and it can be very difficult to rebuild or maintain a personal relationship with the person and the illness. Having a good personal support system is critical. I also use therapy as I feel the need for extra assistance. A book was recommended to me when our family first started to realize what was happening to our son. It’s called: ‘Who Moved My Cheese?” http://www.amazon.com/Who-Moved-Cheese--Mazing-ebook/dp/B004CR6AM4/ref=sr_1_1?ie=UTF8&qid=1383577524&sr=8-1&keywords=who-moved-my-cheese" This was light hearted enough to help ease us into accepting and redirecting our focus regarding our son and our ‘new’ life. Do you have a favorite book to share? Please share it in the comment section below! “What Is Grief? Grief is a natural response to death or loss. Each year, between 5% and 9% of the population sustain the loss of a close family member. But that's not the only kind of loss that can cause grief. People can feel loss when: They become separated from a loved one They lose a job, position, or income A pet dies or runs away Kids leave home They experience a major change in life such as getting a divorce, moving, or retiring While we all experience grief and loss, each of us is unique in the ways we cope with our feelings. Some people have healthy coping skills. They are able to experience grief without losing sight of their daily responsibilities. The grieving process is an opportunity for someone to appropriately mourn a loss and then heal. It's facilitated by acknowledging grief, allowing time for grief to work, and finding support.” Read the full article at: http://www.webmd.com/depression/guide/depression-grief?page=2

"WE LIVE WITH SCHIZOPHRENIA" Website

What do you do to put your loved one's intervention, treatment, and recovery team together? We all know that it takes a village to secure timely and proper treatment that can save the brain cells they need to 'recover' with. Since 'Time is Brain', here's a website that might help you with your outline for your family's team! "CAREGIVING: IT TAKES WORKING TOGETHER Schizophrenia can be a lonely condition. The world outside often misunderstands schizophrenia, and doesn't know how much courage and compassion it takes to live with the condition. That's why it's so important for family, caregivers, and loved ones to stand together. How family members can help: They can be “advocates,” and help loved ones work with the complicated healthcare system. They can remind their loved ones to take their medication, which may help prevent acute episodes from coming back quickly. They can partner with their loved one and the rest of the Treatment Team to find an appropriate treatment plan. They can be the first to notice warning signs of an acute episode or side effects of medicine. Some things can make it hard for family and caregivers to offer help. Like when they feel “shut out” because doctor-patient confidentiality doesn't let them get information about their loved one's health. Even then, family and caregivers may still offer important information to the Treatment Team. A Treatment Team can be made up of one or more healthcare professionals — and is the best source of information about your loved one's condition. Here's a brief description of who might be on a Treatment Team..." I suggest you read the full article here at: http://welivewithsz.com/?CEID=126&utm_source=google&utm_medium=cpc&utm_campaign=awareness&utm_term=schizophreniasymptoms&utm_content=schizophrenia_textad_Home_text#treatment

"Psychiatric Crisis? There’s an App For That"

From Treatment Advocacy Center's website: "IF YOU LIVE OR WORK WITH SOMEONE WITH SEVERE MENTAL ILLNESS, THIS TOOL IS FOR YOU It’s the Treatment Advocacy Center’s new mobile “Psychiatric Crisis Resources Kit,” a smartphone app that puts critical information into the hands of families dealing with acute psychiatric crises – whenever and wherever the emergency strikes. In the application: state-specific standards for emergency hospitalization and for who can initiate treatment; inpatient and outpatient commitment criteria by state; tips on navigating the Health Insurance Portability and Accountability Act (HIPAA); and information on responding to specific kinds of psychiatric emergencies such as suicide or assault danger. "We believe this mobile application will help address the need for immediate, practical information that families, friends and others experience when someone with a severe mental illness is in crisis," said Doris A. Fuller, executive director of the Treatment Advocacy Center. Open this link on your smartphone to download the app. Scroll to “How to use this app” for instructions or hit "Share this app" to pass it along right now. If you have a blog, website or newsletter or you use Facebook or Twitter, share it there, too!..." Read the full article: http://www.treatmentadvocacycenter.org/home-page/71-featured-articles/2309-new-help-in-a-crisis-where-you-need-it-when-you-need-it Also you might want to check out About SARDAA Mission: Schizophrenia and Related Disorders Alliance of America promotes improvement in the lives of people with schizophrenia-related illnesses and their families by providing support, hope, and awareness so that early diagnosis, treatment, and community services increase recovery. Here's their link: http://www.sardaa.org

How do you handle your chronic stress? How to avoid 'Battle Fatigue'!

There is so much stress in life today! Being a caretaker of someone who is suffering from a treated severe brain disorder and especially those who go untreated or are treatment resistant, have additional stress from all the trauma and drama the illness can bring. What do you do to handle that chronic stress? Studies show that good coping skills help to reduce the negative effects stress can have on our bodies. The American Psychological Association's website posted 'How stress affects your health'. It states: "...Chronic stress When stress starts interfering with your ability to live a normal life for an extended period, it becomes even more dangerous. The longer the stress lasts, the worse it is for both your mind and body. You might feel fatigued, unable to concentrate or irritable for no good reason, for example. But chronic stress causes wear and tear on your body, too. Stress can make existing problems worse.2 In one study, for example, about half the participants saw improvements in chronic headaches after learning how to stop the stress-producing habit of “catastrophizing,” or constantly thinking negative thoughts about their pain.3 Chronic stress may also cause disease, either because of changes in your body or the overeating, smoking and other bad habits people use to cope with stress. Job strain — high demands coupled with low decision-making latitude —..." The article also lists some ways to cope with chronic stress. Read the full article: http://www.apa.org/helpcenter/stress.aspx Here are a couple of other links that may help you think of a new way to try to reduce the effects of the chronic stress in your life! Remember to take care of yourself and stay healthy! http://psychcentral.com/stress http://www.huffingtonpost.com/2013/11/01/stress-eat-skippers-munchers-eating-patterns_n_4183038.html?utm_hp_ref=tw

The Importance of Trust

Trust is a huge issue when it comes to personal relationships and compliance to treatment. If lack of trust is combined with lack of insight commonly called ansosgnosia (http://www.treatmentadvocacycenter.org/problem/anosognosia) it’s no wonder why so many are untreated or treatment resistant! Drilling Through The Internal Ice and Moving Toward Connection With Clinicians by Eric Arauz on October 29, 2013 - 10:46am in PsychCongress Network Read more: http://www.psychcongress.com/blogs/eric-arauz/drilling-through-internal-ice-and-moving-toward-connection-clinicians#ixzz2jRmdY1p0 “...Learning to connect and ask for any type of help has taken me years, as I needed to first learn to trust I would not be hurt again. But it has made all the difference in this journey back to the light of connection and myself...”  Full article: http://www.psychcongress.com/blogs/eric-arauz/drilling-through-internal-ice-and-moving-toward-connection-clinicians Yet, there are ways to build and work on trust issues no matter what stage your loved one is in. Here are some resources that we have used. Let me know what works for you! 'Trust After Trauma' by Aphrodite Matsakis, Ph.D. “I Am Not Sick, I Don't Need Help” by Dr. Xavier Amador with Anna-Lisa Johanson http://www.leapinstitute.org

Can you get inpatient treatment when needed?

Will the Mental Health Parity and Addiction Equity Act of 2008 Successfully Encourage Employers to Provide Benefits for Inpatient Mental Health Treatment? By John T. Seybert, Esq. and Edward Stumpp, Esq., Sedgwick, Detert, Moran & Arnold, LLP 1 "...The Dispute Over Whether Residential Treatment Is Medically Necessary Mental illness or drug addiction can have a profound effect on the individual as well as his or her family and friends. 5 In many cases, the mental health provider recommends inpatient treatment for approximately twenty-eight days to remove patients from their “toxic” environment to a controlled residential facility. Most insurance companies, however, will not provide coverage for residential treatment for mental illness or addiction unless the services are deemed “medically necessary.” In general, a plan defines “medically necessity” as “accepted medical practice or community standards of care; not for the convenience of the patient or provider; not experimental or investigational; and appropriate and effective.” 6 ...7 Many state laws also require a medical provider to make decisions as to whether treatment is medically necessary..." Read the full article here: http://www.americanbar.org/content/newsletter/publications/aba_health_esource_home/Seybert.html

A time and a place...all needed when he was ready

Through the course of the intervention, treatment, and a lasting recovery for our son (he has been relapse free for over nine years) we have used various methods that may appear to some to conflict with each other. I would just like to say that for us, there was a time and a place for everything we have done for and with our son. There was a time when we needed to have court involvement to get him to be compliant to treatment. A time when we wrote a contract for him to live at home. A time when we had reinforcement programs to encourage wanted behavior and a time when we faded the programs because we no longer needed them. A time when we could talk with him about why he should take his medication and then when he regained some insight to his illness. It has all been a process. There has been a time and a place for many different and conflicting philosophies regarding how to approach intervention, treatment, and recovery. I would just like to say that in our son's case, there has been room for all in it's proper time when he was ready. I don't see the different methods as conflicting. I see them as offerings for the time when he's been ready for them. Helping him and us to the next level. For us, there is room for AOTs, ABA, and for techniques from the LEAP Institute. For us they work well together to help us achieve our goal. A lasting recovery for our son.

From Helpguide.org : Caregiving Support & Help Tips for Making Family Caregiving Easier

"A look at family caregiving Providing care for a family member in need is an age-old act of kindness, love, and loyalty. And as life expectancies increase, medical treatments advance, and increasing numbers of people live with chronic illness and disabilities, more and more of us will participate in the caregiving process. There are many different types of family caregiver situations. You may be taking care of an aging parent or a handicapped spouse. Or perhaps you're caring for a child with a physical or mental illness. But regardless of your particular circumstances, you're facing a challenging new role. If you're like most family caregivers, you aren't trained for the responsibilities you now face. And you probably never anticipated you'd be in this situation. You may not even live very close to your loved one. At the same time, you love your family member and want to provide the best care you can. The good news is that you don't have to be a nursing expert, a superhero, or a saint in order to be a good caregiver. With the right help and support, you can be a good caregiver without having to sacrifice yourself in the process." To read the full article go to: http://www.helpguide.org/elder/caring_for_caregivers.htm

Minds on the Edge

Minds on the Edge http://www.mindsontheedge.org 'Minds on the Edge' "Facing the issues of Serious Mental Illness" This is a great resource. Also on facebook.

What works for you when your loved one's symptoms hit a high note?

What works for you? When our son's symptoms are in the forefront.... Ever since my grandson had a fall which resulted in a minor concussion with vomiting, we noticed our son's symptoms have started to return. As he was very stressed over the wellfare of his most beloved nephew. His hygiene has been neglected, he's irritable, his attention has dropped dramatically, and he's been isolating himself. Plus, his smoking has increased. So, my husband (who is the most acceptable to our son when he's like this) approached him about laying out his medication for the week. We also had suspect before this, that he hasn't been taking his full dose of Clozapine. We don't want to challenge him by confronting him about it, nor do we want to cause him a sense of failure by overseeing or taking back the daily medication responsibility. So my husband just let our son sit at the table on his own and put his medication in each container for each day of the week. Then he went over and checked to be sure everything was in one of the containers (as the contents for each looked the same) and gave him a pat on the back and said, 'Well done!' We've since seen some improvements in his symptoms, but we're keeping the tone of the house very low stress right now (we used some suggestions from the Sidran Foundation) and some issues that we would bring to his attention to change (like not completing his chores) we're letting go. Our main goal is for him to have his symptoms come back down before we get back on track with the other goals and issues. We give him a lot of positive feedback when he showers and when he does do something around the house. It's not about the end product, it's about the process and any effort on his part right now. We understand it's hard for him. The one symptom we address is his irritability. We just make a comment like, "Are you feeling ok? You seem irritable." And then he usually will adjust by talking or going into his room for a little while and calming down. Yesterday was better. Today he's helping my husband with a major chore. So we'll see how well he is able to cope. We have long understood that our son's illness has ebbs-and-flows that vary form day-to-day. What do you do when your loved one's symptoms are running high? How do you support them until the illness subsides again?

If your loved one doesn't have Medical coverage, do you need help paying for their medication?

"I cannot afford my medication/doctor's fees. Where can I go for financial assistance? Unfortunately NAMI cannot provide direct financial assistance. As a non-profit organization, NAMI's work focuses on support, education, advocacy, and research. However, some pharmaceutical companies offer prescription assistance programs for low-income individuals and families. These programs typically require a doctor's consent and proof of financial status. They may also require that you have either no health insurance, or no prescription drug benefit through your health insurance. Click here to view the list of pharmaceutical companies and their contact information. Your community mental health care center may offer medication and mental health care services on a sliding scale basis. Your local NAMI Affiliate may be able to help you locate this center. Also, you may wish to visit the Free & Low Cost Health Care Service Locator that the United States Department of Health & Human Services has available for a list of local services." Information provide by NAMI http://www.nami.org/ContentManagement/ContentDisplay.cfm?ContentID=99250#6

Al-Anon, Nami, and Circle of Comfort and Assistance

I find that going to an Al-Anon meeting is very helpful in my dealing with certain aspects of having a loved one who is suffering from a severe brain disorder. Not everything applies of course but you can 'Take What You Need and Leave the Rest'! Most of their slogans and principles are very helpful in managing my day-to-day life. To find a meeting near you to start (I recommend attending several different meetings as they all are different) you can go to: Also, NAMI's Family-to-Family education classes are a good basic understanding of mental illness. They don't get into the serious issues of severe brain disorders such as schizophrenia with severe symptoms, but you will come away with a better general understanding that is helpful. To contact you local NAMI chapter go to: http://www.nami.org/Template.cfm?Section=Family-toFamily&Template=/TaggedPage/TaggedPageDisplay.cfm&TPLID=4&ContentID=32973 To share personal stories and be with others who have loved ones suffering from severe brain disorders and are in different phases of intervention, treatment, and 'recovery' you can go to the facebook page below and click on join. Please state the reason you wish to join and your e-mail as the page is 'secret' to protect the identity of all. https://www.facebook.com/groups/567799843274518 Remember, you are not alone! There are other families who are going through what you are or have already been there and done that! There is always hope and support! P.S. If you're wondering why Al-Anon would be applicable, a high number of those who suffer from an untreated or improper treatment of a brain disorder use street drugs and/or alcohol.