A new study in mice suggests that anti-inflammatory medications may be of some value in preventing brain disorders such as schizophrenia in which nervous system inflammation during early development of the brain is a specific risk factor in causation.
In recent years accumulating evidence suggests that immune mechanisms can have significant influences on the developing brain. Even before birth, exposure to inflammation may well have consequences later in life. Previous research has shown that the offspring of mice whose immune systems were activated because of a mother’s infection during pregnancy have higher risk of developing behavioral abnormalities in response to stress later.
In the new study, researchers explored whether giving the mice an anti-inflammatory drug called minocycline when they are young would block stress-induced inflammatory responses and prevent the emergence of behavioral problems in adulthood.
Read More Here, on the BBRF Page.
"Hi, I'm not sure who to call...I'm seeing disturbing things happening at home with my child. I'm wondering if he's having symptoms of psychosis..."
Parents for Care is partnering with EASA Center for Excellence and Portland State University in Oregon state, where there are a network of early psychosis intervention clinics, to design and implement the first ever Psychosis Hotline.
Parents and others can call and ask questions about psychotic illnesses, get accurate information on brain disorder signs and symptoms, and be funneled toward resources, or even scheduled with a resource.
EASA has undertaken a huge project to list and define by services all the Early Psychosis Intervention Clinics in the United States. This effort will directly feed the Psychosis Hotline and provide one of many valuable resources available for information on psychotic brain disorders.
Parents for Care is proud to support and partner with EASA Center for Excellence at Portland State for this important innovation in early care for those suffering from brain disorders.
To Learn More about EASA Center of Excellence, click here:
As a caregiver, you may need to handle someone else’s finances for them. You may need complete control of their finances or just the ability to make purchases for your patient. Either way, you will need to keep certain documents at hand in order to pay someone else’s bills or manage their bank accounts and credit cards.
Finnegan Medical Supply has created this eBook for caregivers who are handling the finances and checkbooks of their patients.
► A Printable ChecklistUse this handy tool to make sure you have all your patient's financial paperwork in order. Never overlook an essential piece of documentation again!
► An Extensive Glossary of Financial Terms Don't know the difference between "durable power of attorney" and "non-durable power of attorney"? This easy-to-understand resource defines all the jargon you're likely to encounter as you manage your patient's finances.
Download the image and paste on your page or in an email to help us promote our #brainhealthfirst campaign starting in a few days! We'll have tshirts and posters available for sale as a fund raiser. Please hashtag your downloads with #p4care #brainhealthfirst #brainhealthmatters
If you'd like to use this graphic, or share it, please Hashtag it to support our #Brainhealthmatters campaign starting soon, where we'll sell t-shirts and cards with this imprint and the campaign slogan.
hashtags: #brainhealthmatters #p4care #parentsforcare
A Texas man accused of killing a city worker was executed on Tuesday night, despite his lawyers' argument that he should be spared death due to mental illness.
Adam Kelly Ward, 33, who had been on death row since 2007, was convicted of killing a city worker in 2005 over a dispute concerning large amounts of trash piled up outside his house in Commerce, Texas, located around 65 miles northeast of Dallas. Ward said he was defending himself when he shot and killed Michael Walker, 47, a code enforcement officer, who was taking photos of the piled-up junk. Walker was unarmed at the time, carrying only a cellphone and camera.
During his 2007 trial and in subsequent appeals of his death sentence, Ward’s attorneys presented evidence of his delusions, paranoia and bipolar disorder. The Supreme Court refused to review Ward's case in October, and the 5th U.S. Circuit Court of Appeals rejected an appeal last week. He was executed by lethal injection on Tuesday night after his lawyers' failure to obtain a stay of execution.
Parents for Care called Fred Upton's office so many times in the fall of 2015 that when we got to DC to see him, his aid was already on the defense. They don't like to hear that you expect some results from them or they won't get your vote next time.
Call and support HR 2646: Do you know who your reps are? If not, please use this link: www.findmyrep.gov to find who it is and then CALL THE OFFICE.
Here's your message: I am calling to ask that Congressman XYZ or Senator XYZ support HR 2646 in its entirety. I am the parent/caregiver/brother/sister/cousin of someone with serious mental illness and these reforms are necessary to make sure my brother/sister/cousin/son/daughter can actually access care and allow me to assist them in that effort. HR 2646 is no good without all the components in it. These components are necessary to enacting meaningful reform in the mental illness treatment world. Without some of these components, like clarifying HIPAA to allow caregivers access to vital treatment information, any reforms enacted are just more of the same status quo that keeps mentally ill young persons from access to comprehensive treatment that can give them their lives back. Without these meaningful reforms, the mentally ill by and large end up in jails, prisons and on the streets of our cities, exposed to the elements and criminal acts and worsening health.
Here are some of the important provisions that Must Stay in the bill:
I understand that Senator or Congressman XYZ is up for re-election this fall. If so, I do expect MY representative to sign on to support HR 2646 or he will not earn my vote. I expect it. Thanks for your time listening to your constituent.
Vontasha Simms' daughter had a psychotic break, was REFUSED help by every single community mental health agency she was taken to, and ended up accidentally killing her small son, by swinging him on a swing in a park for over FORTY HOURS. Please sign and share this petition, for a new law named after Vontasha's dead grandchild Ji'Aire.
Ji'Aire's law would give caregivers supervision over a psychotic loved one and supervision over minor children when necessary to avoid terminating parental rights of the psychotic person.
Psych events at Johns Hopkins Medicine are free. Save the date if you're in the Baltimore area, for their 30th Annual Mood Disorders Symposium. Parents for Care for will be there!!
When my husband, Eric, a hard-working Philadelphia lawyer in his early fifties with no history of health problems, suffered a stroke on a business trip in Chicago, the event opened my eyes to the challenges facing caregivers dealing with our current health care system.
I flew straight to Chicago, leaving our 13-year-old daughter with my mother, unsure of when I would return.Though frightened and anxious, I figured that my experience as a registered nurse and administrator at a world-renowned academic health center would help me navigate whatever awaited us. Still, steering Eric’s care through two hospitals in Chicago and a rehabilitation center here in Philadelphia – even just getting him transported from one place to another – proved to be a monumental undertaking.
Eric spent 10 days hospitalized in Chicago, where he was cared for by more than 50 health care professionals and students. From shift to shift, information was passed along like a game of whisper down the lane. It was up to Eric, as the patient, to repeatedly correct the inaccuracies.
The hospitalization was hard. But it did not compare with what would confront us after Eric got sent home.While he was in a hospital, if I had a question about anything, I had 24/7 access to one of Eric’s registered nurses. Butwe needed just as much help when he was an outpatient, and it was not readily available.
Upon Eric’s release, we were given 10 pages of rehabilitation instructions, a list of five specific medical personnel Eric was going to have to see, seven prescriptions with 29 pages of information about them, and another dozen pages on how to deal with other issues.
Although all of it was written in lay terms, it was just too much information to absorb. No one reviewed it with us to make sure we understood the key points. No one had any communication with Eric’s longtime primary care doctor. There were mistakes with prescriptions. There was even a voicemail message awaiting us in Philadelphia, announcing that we were “being placed in collection” for an outstanding $23,312 bill, a clerical error that took me thirty days to correct.
Simply coordinating Eric’s care, at times, seemed impossible.Once home, Eric needed blood drawn frequently, starting with the day after his discharge. But where would we find a lab to do it? What about the neurologist appointment required in two weeks when the next available appointment was in five months? Finally, lost in the shuffle were Eric’s records and imaging studies from Chicago, misplaced by the rehab center here in Philadelphia.
We got through it, relying at times on my own medical knowledge and the assistance of those I knew in my professional network. But how does a caregiver manage without familiarity with the system? I can only wonder.
After Eric left the hospital, we had no identified point of contact, no phone number, no e-mail address to use for support or guidance. No one had the responsibility to be knowledgeable about Eric’s comprehensive care plan, and no one helped coordinate his still-complicated care once he was home.
Outside the hospital, there needs to be that same coaching, coordinating, and round-the-clock support for patient needs--available over the phone for both patients and their caregivers.
We have to figure out a way to handle care transitions—the experience of moving from one care setting to another and moving among different care providers —in a kind, sensible, thorough, and realistic way.
For starters, we need:
Beth Ann Swan is dean and professor at the Jefferson School of Nursing at Thomas Jefferson University. She originally wrote this story for the November issue of Health Affairs.
Representative Payee: To Be, or Not To Be?
By Kathy Day
Disclaimer: The following information is NOT intended as legal advice. It is information I gathered from experience and by educating myself. Every situation is different and every person is different. Please make choices based on your own experience.
When your loved one received benefits from Social Security (SSI or SSDI), they may be required to have a Representative Payee (someone who handles the benefits on behalf of the beneficiary). It is difficult to choose whether to act as payee for your family member, or whether to transfer payee responsibilities to a neutral third party. There are professional agencies who perform this service for a very small fee, and some mental health agencies will also act as payee. It’s best do your research before deciding.
In my experience, having a family member act as payee is not necessarily best. When you come between your loved one and his/her money, it can be awkward at best and dangerous at worst. If you act as payee, you must be able to firmly establish ground rules for your role as payee. You must also abide by the rules established by Social Security on what the payee’s responsibilities are.
If you choose to act as payee, you will have more discretion on how the money is spent. There will be less red tape than there would be if you were to use a third party payee. If you use a third party payee, your loved one will often have to purchase items first and then submit receipts in order to get reimbursed. If you act as payee, you can purchase items for your loved one directly. If you want to encourage independence in your loved one, it may be easier by using a third party payee, as your loved one can then interact with the payee directly.
If your family member lives with you, make sure you have an agreement to charge for room and board. You can set any amount that you and your loved one agree upon. This way you can be sure to be paid for living expenses to help your loved one understand that there is a cost to living in your home. Charging room and board also reduces the amount of cash your loved one has. This is good, especially if there is a co-occurring substance use disorder.
If you incur any expenses on behalf of your loved one, make sure you pay yourself back (if you’re payee) or submit an expense report to the payee (if you use a third party). Receipts are important to establish what the funds are used for. For instance, if your loved one is has medical appointments or legal appointments that you transport them to, make sure you’re reimbursed for mileage and parking.
These are just a few suggestions for family members who are required to have a payee. If you have any other suggestions, please contact us using the contact us form on the website.
When Your Loved One is Incarcerated….
By Kathy Day
Disclaimer: The following information is not intended as legal advice. It is information I gathered from experience and educating myself. Every situation is different and every location is different. This is intended as a loose guide to mental illness in the criminal justice system.
Finding out your loved one with mental illness has been arrested is a very frightening experience. The legal system isn’t easy to deal with, especially when your family is in crisis due to an arrest. The following points will assist you in helping your loved one:
Schizophrenia can affect a person's lifestyle, including their social and financial position, in a variety of ways. The psychotic symptoms of schizophrenia and the disruption they can cause to an individual's daily life are obvious, but often their physical health can also be affected. The goals of treatment and recovery are to reduce or stop symptoms to enable the individual to engage in daily activities and reduce the number of relapses. With the help of antipsychotic medication and other therapies, the symptoms of schizophrenia can often be managed to an extent that will allow people with schizophrenia to return to their daily activities. There are many steps that people with schizophrenia can take to help improve their overall well-being.
Physical health and well being...
Physical health and well-beingPeople who experience schizophrenia may suffer consequences in the form of lifestyle changes, such as higher levels of smoking, which can lead to serious physical health complications including cardiovascular difficulties, respiratory disease and a general increase in infections. These problems may be made worse if the person consumes high levels of alcohol, is involved in illegal drug use, has a poor diet, takes little exercise, has poor self-care and personal hygiene, and poor quality accommodation. The changes to lifestyle and the side-effects of medication can lead to people with schizophrenia gaining weight, resulting in problems associated with obesity.
Obesity itself can have a major impact on physical health, such as an increased risk of heart disease or diabetes. Therefore, it is recommended that someone with schizophrenia should have an annual physical check up. They may also need support from a dietician, drug and alcohol services, chiropody, dentistry and other general health-promotion information.
Through good health and social care support it is possible for the physical risks associated with schizophrenia, including the side-effects of treatments and lifestyle changes, to be reduced.
In Addition....Getting Better includes
Your Child’s Illness Vs. My Child’s Illness—a Tale of Medical Parity
Your child's illness gets 500, 000 likes on Facebook when you post a picture or ask for prayers
My child's illness gets about 5, from people who already know us and know of our struggle
Your child's illness gets copious amounts of Tax Dollars to fund more research for cures; your child's illness has a congressionally approved budget
My child's illness gets funds Cut by 25-40% due to the sequester, or whenever social services are on the chopping block, which is nearly every single time a budget is passed
Your child's illness gets the sympathy of complete Strangers, world wide
My child's illness gets labeled by people in the press every day: psycho, headcase, lunatic, maniac, nutjob, monster, freeloader
Your child's illness gets insurance coverage so he can actually get well
My child's illness gets 30 days coverage per year, Max, with an average inpatient stay of 11 days, with no social workers, therapists, or psychiatric coverage
Your child gets after care support, medically, socially, economically
My child's illness is left to the charity of Dot.Orgs, with programs we don't qualify for due to income or non-compliance with medication
Your child's illness gets treated in the ER, and quickly
My child's illness gets ignored in the ER for an average of 24 to 30 hours before he's seen
Your child's illness has specialists trained in care, both inpatient, and afterward
My child's illness has policemen to handle it, who know nothing about appropriate care
Your child gets a diagnosis through medical means and exhaustive testing
My child's illness is diagnosed through Symptomology, depending what he does that day in front of a doctor, and gets re-diagnosed multiple times
Your child's illness has a typically standardized treatment plan and medical path forward to health, even with rare conditions
My child's illness is a quagmire of trial and error with medicine until you hit a combo that works: average is 10 different medications over 3 to 5 years
Your child's illness, unless terminal, is aggressively treated due to a high expectation of recovery and health
My child's illness has an overall low expectation for recovery and he's relegated to a back ward and warehoused, if there's even a spot available
Your child's illness gets everything that can possibly be done medically to alleviate symptoms or put the disease into remission
My child's stabilization period is 10 years. TEN.
Your child's illness gets fundraisers that people gladly attend and give to, generously
My child's illness bankrupts almost every family, with Self-pay services, and no fund raisers
Your child's illness has medical records that are robust and shared with cooperating and follow-on hospitals and doctors
My child's illness has medical records caregivers are banned from seeing, which never follow the child to the next medical facility or ER
Your child's illness is a medical tragedy
My child's illness is a "social problem"
Your child's illness is treated in hospitals, with the full attention of caring staff
My child's illness is treated in JAIL, in solitary confinement, often without medicine
Your child's illness is a family heartbreak story
My child's illness requires a standard of dangerousness be met before anyone is allowed to intervene, and when he does meet the standard, it's often too late
Your child's illness is never a legal dispute or legal issue: it's scientifically and medically verified
My child's illness requires laws be passed, that are then not funded or implemented, just to get him to life-saving measures
Your child's illness is acknowledged as a medical condition
My child's illness is a labeled bad behavior and parents get the blame
Your child's illness is considered a medical disability on its face
My child's illness requires lawyers to apply for disability, with an average number of 9 applications before approval
Your child's illness, when very active or critical, is immediately treated as an emergency and forwarded to a specialist for follow on care
My child's illness, when very active or critical, gets him, at best, a 72 hour hold, then he's released to the streets with a recommendation for follow on treatment and no medicine
Your child's illness is afforded the cooperation of caregivers and parents to attend to it
My child's illness is left to the Right to Refuse Care Laws, leaving him to get as sick as he can possibly be, and choose suicide, death, starvation, continued illness with severe brain damage
Your child is never arrested or jailed because he's sick
My child is almost always arrested at some point
Your child's illness is comforted by those who love him, and you are, too
My child's illness means friends drop us, family turns away, and jobs are lost
Your child's illness indicates the need for family involvement and care
My child's illness indicates the need for family involvement, but we're excluded unless he signs waivers, which he often too sick to do
Your child's illness, if you did not treat it, would mean a criminal charge against you for neglect and child welfare agencies would remove him from your care
My child can't be brought to treatment unless he chooses it, when he's incapacitated cognitively, and he can die at the hand of policemen, be shot at, hang himself or kill someone else, and we are never considered neglectful because He made those choices
Your child's illness means he's helpless and needs attention, and he gets it
My child is expected to pick himself up by his bootstraps and Try Harder
Your child can have any bed in any hospital in the country, across the board
My child can ONLY have a psychiatric bed, and there's an estimated deficit of 100, 000 beds in this country, and the wait for one can take 6 months or longer in some places
It's encouraged to ask about your child's illness and progress and sympathize with your plight and ask what help they can offer
No one ever asks about mine, and when they do, I get low-brow, upsetting questions like: How many personalities does he have? Do you let him have a gun?
Your child can tell people he's sick. My child cannot, or he won't get a job, or a date, or an apartment. Your child can get a fun trip sponsored by an organization that assists sick children.
My child can't go on any trips, usually, and neither can his family...
Your child is not homeless. Your child is not incarcerated for years. Your child is not maligned in general by society. Your child's illness is not romanticized or mythologized with ideas like "Madness is Genius." Your child’s illness is not part of the Gun Control debate. Your child is not automatically part of the legal system. Your child does not have a Preventable Tragedies national database. Your child is not a throwaway. Mine is all of these things.
Your child got sick through no fault of his own. So did mine.
By Ami Albernaz GLOBE CORRESPONDENT SEPTEMBER 07, 2015
The value of care provided, unpaid, by family caregivers in 2013 rivaled Walmart’s sales that year, according a recent AARP Public Policy Institute report. The total value of these contributions — $470 billion — reflects approximately 37 billion hours of care, and was more than total Medicaid spending that year.
Some 40 million caregivers provided an average of 18 hours of support a week to parents, spouses, partners, and other loved ones with limitations in daily activities. A rate of $12.51 — the average estimated value of an hour of family care in the US — was used to calculate the total cost.
While these unpaid contributions are vital to reducing strain on state-funded and paid long-term services and supports, providing this care can come at a considerable cost to caregivers, the report noted. Along with struggling to balance caregiving with full- or part-time work and other family obligations, many take on demanding and complex tasks that they may be unprepared for, such as managing medications, giving injections, and operating medical equipment.
“You’ve got people who really aren’t trained engaging in critical, higher-risk activities to be helpful,” said Mike Festa, AARP state director. “While this may be satisfying and reaffirming, since caregivers help out of love, it can also be overwhelming and emotionally draining.”
Sixty percent of family caregivers work either full- or part-time jobs, the report noted. Juggling work with caregiving and other responsibilities leads some caregivers to cut back their work hours, quit their jobs, or retire early, particularly if they cannot afford to pay for outside help. A 2011 MetLife study found that caregivers age 50 and older who leave the workforce to care for a parent lose an average of $303,880 in income and benefits over their lifetime. Nearly 4 in 10 (38 percent) of caregivers report a moderate to high degree of financial strain, according to the AARP report.
In Massachusetts, around 844,000 family caregivers provided an estimated $11.6 billion in unpaid services in 2013. Most seniors who receive assistance at home rely exclusively on family caregivers, according to AARP Massachusetts.
The Commonwealth is one of 29 states and territories to have introduced the Caregiver Advise, Record, Enable (CARE) Act in state legislatures this year. Among the provisions of the act, hospitals would be required to instruct family caregivers on medical tasks like medication management, wound care, and administering injections that they would need to perform at home.
Other legislation that could help caregivers in Massachusetts includes a bill that would allow spouses to become paid personal care attendants. Currently, a MassHealth Personal Care Attendant Program allows friends, neighbors, and most family members to be paid for caregiving services, but not spouses. Legislation that would have changed this died in the House Ways and Means Committee last year. It was reintroduced this year and is still pending in the Joint Committee on Children, Families and Persons With Disabilities, Festa said.
“Paying spouses for caregiving services could reduce a lot of strain,” he said. “It doesn’t make sense not to pay spouses for these services, because many are cutting back on their work hours, which can make things difficult for these families.”
Ami Albernaz can be reached at firstname.lastname@example.org.
Please read this Thank You letter from Racquel: This is why we give.
Dear Parents for Care,
Being the primary caregiver to two loved ones with SPMI has many challenges.
One very hard reality is living within a restrictive disability budget. We creatively persevere, but just one unanticipated, seemingly "small change" (sudden decrease of income) has had huge ripple affects.
We were desperate to purchase must needed prescription medications and we heard of your organization and applied for a grant.
A Parent's for Care grant for 600$ allowed us to obtain all of the needed prescriptions! We are all so very grateful! (Just writing this brings tears to my eyes.)
Knowing that Parent's for Care is not only an emergency resource, but also a support, encourages my heart to push on and to continue to advocate for my loved ones. Your acceptance and support is a safe place for me and my loved ones to stop and catch our breath. Your support has ripple affects that you may never fully comprehend.
Thank you so very much!
Donna Thomson, author of The Four Walls of My Freedom and blogger for The Caregivers’ Living Room
A stooped and white haired doctor touched my shoulder and gently asked “Has anyone spoken to you about your son’s development?”
In that moment, in a hospital emergency room long ago, I turned from being a new mother into a lifelong caregiver. My baby was only three months old and was seriously dehydrated. I assumed that Nicholas’ myriad of symptoms including endless crying and an inability to properly suck and swallow were due to his premature birth. That day, I remember hoping the word ‘development’ meant my baby’s length and weight. At the time, I couldn’t bear to grasp the true meaning of the doctor’s question: whether anyone had told us that our son had cerebral palsy and possibly a cognitive disability as well.
Throughout the years of our son’s life, the identity of caregiver has pulled and pushed me like tides ebbing and flowing.
Although I denied knowing what ‘development’ meant to the ER doctor, I didknow. I just didn’t want to admit it to him, or to myself. But later at home, a sense of dread infused my days and nights. So a month later, when another doctor confirmed Nick’s diagnosis of severe cerebral palsy, I felt relieved.
Naming our shared enemy put my baby and me on the same team. Now, I was a caregiver on the warpath. Nicholas was my first child and I had the natural optimism of a fairly well educated girl who always worked hard to be on the honor roll.
In those early days, I believed that the power of my love, my reason and my will could cure my son.
Nicholas was quickly assessed at our local children’s treatment center and we began a rigorous regime of physical, occupational and speech therapies. I discovered ‘Conductive Education’ and we added that to our program too. We had a visiting infant stimulation expert at home and swimming and music lessons for babies with disabilities at a local community center. After a couple of years, I collapsed. One day, I was describing our daily routine to a friend. I suddenly asked myself, “What am I doing? Nicholas is a child and I am his mother! He is not my project, he’s my baby!” Tears welled in my eyes and I turned away from my friend, hugging Nick tighter. I vowed to change our family life and our therapy goals. To do that, I would need to be more of a mother and less of caregiver.
My roles as caregiver and mother became less at odds and more integrated as I advocated for Nick’s needs over the years. I learned to put those different hats on when required, and sometimes, both hats at the same time. When I advocated to local authorities for help at home, I used my expertise in caregiving as a counter-balance to a declaration of love for my son. Presenting in too clinical or too emotional a manner wouldn’t have yielded the results we needed and it wouldn’t have reflected the truth about our lives.
Nicholas is 25 years old now.
Although he’s largely bed-ridden due to chronic pain, he is a blogger, sports journalist, and self-described ‘sports media analyst’. Nick lives in a care home near us and we visit him often. Skype technology has allowed my husband and I to take month long holidays without too much homesickness on anyone’s part.
I never abandoned my role as Nick’s caregiver and I never will. I just put it in perspective. Although Nick never overcame the effects of his disability, I am always his Mom first and he will always be my treasure.
How MyHealios Helped Me Help My Loved One
When my family member and I started on this journey in the strange new world of schizoaffective disorder, it was very daunting. Not only was his world shattered, so was mine. He was no longer the same young man with so many friends and a wonderful life ahead of him. He was now a stranger, in so many ways.
Communication was very difficult. There were times I couldn’t get him to respond to me. Times we just couldn’t understand each other. My most common question to the service providers was “How can we learn to communicate again?’. Most of them brushed me off or said they’d set something up in the future (which in itself was a brush-off). Still, I struggled. I read “I’m Not Sick, I Don’t Need Help” by Dr. Xavier Amador. I took the Family to Family Class offered by Nami. It helped a lot, but wasn’t the same as working one on one with a professional to learn new techniques. Still, I kept asking, each time we met a new professional. I never got the answers I was looking for.
Then, I saw a video that piqued my interest! It was on the IMHRO website. Fantastic! I was interested, because there is so little out there for families dealing with loved ones who have serious mental illnesses. The focus is usually on the less severe mental illnesses and on the person suffering from the mental illness, but very little for families and caregivers. Yet we are such an important part of the process! MyHealios sounded like something I wanted to learn more about, so I contacted them.
This organization was just what I was looking for! Since my loved one first became ill, I was asking for help in re-learning how to communicate with him. Because of the huge impact to the cognitive functioning of people with psychotic illnesses, I found it difficult to know what to say to him. All I wanted was to learn this new ‘language’, so that I could help him help himself. But there was nothing. I told all the clinicians I came in contact with what I was looking for. All they did was recommend that I go to a WRAP (Wellness and Recovery Action Plan) class, or to CODA (CoDependents Anonymous). Neither of these groups had a clue what I was looking for. Thank goodness I finally found MyHealios!
MyHealios is not a support group, nor is it therapy. I refer to it as my coaching session. My clinician was my coach. Through weekly, structured video chats, my coach helped me learn skills to apply to everyday life with my loved one. These skills help me help him. We would talk about strategies and what was going right and wrong each week. We’d work through educational slides that she shared with me and do role plays. She listened to me when I got off track and deftly steered me back on track so that I could learn the skills I needs. We started with small tasks to work on and eventually I saw how the techniques for small tasks could be applied to larger issues. I also learned that these skills, like anything new, required a lot of practice and focus.
At the end of my twelve week sessions, I felt I had the tools I needed to more effectively help my loved one reach his goals. I also felt I learned how to better care for myself as I care for him. As a caregiver, we often forget the importance of self-care. MyHealios reminded me of my own importance!
I was so happy with MyHealios that I started referring business to them. I now work for them, reaching out to families and letting them know there IS help for them as they go through this difficult journey.
Please feel free to contact me for more information. My email address is email@example.com. You can learn more about us at www.myhealios.com.
This is an Amazing program that helps care givers of those with mental illness. Family psycho-education at its best! Contact Kathy Day at 916.708.7281 or firstname.lastname@example.org for more information and to enroll.
1) instructions in the modules of your choice (delusions, co-morbidity disease, substance abuse, medicine compliance...etc.)
2) a personal Healios coach that helps you through the program and answers questions in detail about interaction with your family.
I am writing because I just read about your story on NAMI. My heart goes out to you and your family. I am in the same situation with my daughter who was diagnosed with paranoid schizophrenia at aged 18. She has been hospitalized since Feb and is awaiting a residential. While words cannot help with your sadness on losing your son please take comfort in knowing that he is free from pain and madness from this awful disease. God Bless
Hi Laura, You don't know me, and I've never reached out to a stranger this way but I want to express my sympathy to you for your loss. I read your story with Zac about feeling lucky regarding him a while ago. I feel the exact same way about my son with schizophrenia and I posted it to my page. Your story touched me because it is almost exactly like mine. I happened to stumble across your article again while searching for a mental health article to post on my Facebook page, and found you again and just saw Zac recently passed. I am crying and so saddened for you. God Bless.
Hi, just saw your public story through CooperRiis' facebook page. I am in tears. Our stories are so similar. My son and I keep his story very private for reasons hopefully you understand. Thank you so much for sharing. Your sharing reminds me, it's not just us and there are loving hearts that "can relate". Being able to relate is so much different than someone who "understands or sympathizes". Thank you, You are AMAZING!
Laura thank you so much by stating mental illness and mental health is Not the same thing.my husband Clarence has paranoid schizophrenia.it has been a roller coaster ride.but it's very inspiring to hear people speak out for mental illness awareness!!!!Thank you
I read your article in the USA Today newspaper...just wanted to send my best hopes and understanding to you...I'm a mother of a son with schizophrenia. Such a similar beginning! Jesse was very athletic, popular among his peers and teaching staff, did well in school...and then one summer it started to unravel...and like you, we at first thought it was typical teenage rebellion, asserting of independence...until little red flags started popping up all over...Jesse is 36 now and is such a sweetheart...always has been...but my heart still aches for him...for what was robbed from him...from all of us...namaste...
Hi Laura, I just read the article about Zac and I am so sorry for your loss. I believe Zac and my son attended St. Thomas Aquinas school together and were in the same class. I can't even imagine what you are going through. My thoughts and prayers are with you.
Laura, there are no words for me to express my sorrow. My heart aches for you and your family. I pledge to you and Zac that I will share your story to cultivate more mental health allies, advocates and compassionate humans. Everything that you have done for Zac and for families experiencing mental illness matters. You have both made a significant difference even though it may not seem that way. I wish I had words to ease your pain and bring your more comfort. I just want you to know I am thinking of you and sending you love and healing.
I have followed your page for a year, as I, too, had a son who suffered from schizophrenia until he took his own life in February of 2011. My heart breaks for you. May your dear Zac rest in eternal peace.
I am so sorry to hear of your son's passing? Do they know why he died so young? He was definitely an inspiration to us all.
Laura, I am devastated with and for you. Zac reminded me so much of my Jesse. Please know i am really here for you if there is anything I can do. I am not always on facebook because I go on it at the library. Sending so much love!!! Jesse was 24 and he was so much like Zac. Blessings on you for all the work you have done. Blessings on Zac on his great passage. Know your son is an angel now. After Jesse died I heard from him (from within me). He said "Mom I don't have schizophrenia anymore". He was free. All I ever wanted was for him to stick around for a real cure. He never believed he had schizophrenia. Believe that your beautiful Zac is always with you and believe that he is free. Sending so much love Laura!!!
Hi Laura, I just wanted to check in and see how you're doing. I've followed your journey through your posts and blogs. You don't know the countless number of people that you've helped, including me. My 9 year old grandson has mental health issues, I believe he is bi-polar but doctors say he is too young to diagnose. I don't need to tell you, finding the right care has been a nightmare; but your posts and blogs have helped significantly. You have shown me courage and let me know that being an advocate gives us hope for the future. I never met Zac or Leah, but feel that I know both of them; your writing is eloquent and passionate. Thank you for sharing Zac with us. Please know that there is a whole lot of love, support and prayers coming your way from Chicago.
Hi Laura, I would love to be a connected to you by FB. I heard the story about your son. I was raised by a schizophrenia and bi-polar mom who now lives in a nursing home. She has many of the same symptoms. Trusts hardly no one. Believes no one is really there to help her. She calls me and tells me not to call her anymore because I am not doing anything to help her. She wants to go to the hospital she gets there and tells the doctors they do not know what they are doing.
I, too, have sons with schizophrenia (actually bipolar disorder with schizoaffective disorder), I, too, will never give up the love I have for my sons and the determination to be there for each of them. I read your "book" on the Bring Change 2 Mind site. I cried. I can relate. I had to give you my utmost gratitude for you and for your ability to share. I understand when the lump comes in the throat and the tears well up in your eyes... My adult sons are now in their forties. They are each married and both are being successfully maintained on Clozaril - a medication I have a love/hate relationship with but truly am thankful. May God continue to bless you and your family. I will keep you in my thoughts and prayers. Please continue your quest to help others in their understanding of the difference between mental illness and mental health - it is so important. Until we meet again, I remain in awe of your story
Hey, I belong to one of the same Facebook groups as you. I just read your USA Today article and watched the video and I just wanted to let you know you're my new hero... I live in MD actually it's about only 20-30 minutes at most south of Baltimore. I myself suffer from bi-polar 1 which had almost crippled my life it hit me late in my high school years and I was transformed into a completely different person my parents were totally lost at first I can almost still hear them telling me that I'm on drugs cause I'm not sleeping or that I'm annoying cause I talk to fast too randomly too much telling me to leave them alone before I drive them Crazy or they threaten to hit me ( which has happened more times than I can count I almost perfected making up lies about the source of my bruises) well long story short I'm 27 now I still live at home I'm on lithium among others and my parents have basically given up on me they tolerate me living here but it's hell sometimes they refuse to do family therapy or talk to my doctors they poke fun at me yell at me kick me out blame illicit drugs for my symptoms last time I was hospitalized at Shepard Pratt in Towson I put them on the visitors list they never showed up or even called to check in on me so I've stopped expecting their trust help or even compliments or love but it's not all bad I'm doing ok now a little better in fact despite not really having any close family or even friends but the point of this too long message is so say you're my hero... The way you help others and the way you love your son is amazing this world could use more like you. Mental disease and health is way too often brushed aside or ignored and the way people differentiate between understanding, funding or treating a physical illness or injury and mental illness is sickening only the ignorant and uncaring truly believe in it. Today I am happy and I'm starting to accept and love myself despite being affected by sometimes very severe bi-polar and deep down I'm grateful for it it's made me a more compassionate and open minded person it's shaped me into who I am today. Tell your son it's going to be ok eventually and he's not alone and I will pray for you guys and also Others who need someone in their life to love them... Thank you for being so amazing and so courageous.
Thank you for posting the information you do. I have depression, work in a group home comprised of residents coping with mental illness too, and there are times when I forget how much they've been through and exactly what they are going through.
Hi Laura, you don't know me but I follow you and know your loss. You "liked" my boat painting and I wanted to tell you a story about that painting. My 30 yr old (as of yesterday) son has schizophrenia and I painted that picture 9 yrs ago on his 21st birthday. The reason for the soulfulness of that painting is because I painted it out of sorrow and grief. I didn't name it until a few years later and the subject matter was only chosen because it was a beautiful little boat on Balboa Island. As the years passed and I looked at that painting I realized that it was such a statement of my son's condition at that time; restrained by an illness while the two slivers of boat in the distance are there but helpless. Thought I would share that as I know you are grieving. I share in your grief and am so sorry for the loss of your son.
I have a son who has been diagnosed with bipolar. He is presently in jail. His fiancee tried to get help for him to no avail. This is his third manic episodes in 10 years. It is devastating.
I have a son with severe mental health issues and he's facing a life in and out of jail. I started a gofundme to help with relocation costs, we live in Kansas now and we've tapped out their resources for him. I did months of research to find an alternative and I found one in Indiana. We live on an income of 733/mo for a family of 5 so moving is going to be a real challenge, and without help I don't see it happening. Jail as you know is not the answer.
First off, let me say that I'm deeply sorry for the loss of your son. You don't know me. But I am a Morris resident and found your story when researching information on what was going on with my own daughter. When your last name sounded familiar from the area, I was dumbfounded to read that you were from these parts. I will make it short. My daughter was born with 22q deletion syndrome which wasn't diagnosed until fifth grade. We just knew that she had a lot of physical abnormalities and learning disabilities. This past year, on the second day of her senior year in high school, she started having severe delusions and anger. She was never an angry person, always very sweet. We had her committed as she was trying to hurt me and talking about suicide. She has since been diagnosed with schizophrenia and bipolar disorder. It was the one possibility that may occur as part of her genetic syndrome that we prayed would not be a part of her story. I had a large pool of friends and lost most of my close girl friends after her diagnosis. No more phone calls or texts to see how we were doing. No meals brought over when she was in the hospital as was done when she had open heart surgery. My friends scattered and I lost my "support structure." I am a pharmacist and had to give up my position in order to care for her needs. It's been the roughest thing we have ever gone through. Sue Paulson was my daughter’s special Ed teacher for many years and found it to be another interesting coincidence that she's part of your family. I just wanted you to know that from a mom to a mom, I appreciate all that you've done to raise awareness for mental health issues. I understand much of what was written in the USA article. So much work needs to be done in the mental illness area. Best wishes.
I am so sorry for your loss. My son is following, being dragged through a similar situation. I really appreciate your offering families a place to stay and the incredible notebook....I have information scattered about. We need more options within the community when people get out of hospitals...to help rebuild a crumbled life. To give our children what your son wanted....or at least to help provide the opportunities.
They decided to change my sons med. He got worse and worse in the hospital and then he hit someone and they put him in solitary confinement which they call Therapeutic quiet. He has been there for five weeks. Mattress on floor, eating food with his hands. We said he would need help to get beyond this, just like every time he has gone into the hospital for help and they do outrageously inhumane things to him in the name of good. I am trying to focus on what they can do, and I certainly don't want forced treatment in any way. This is his life, and he was having difficulties before this all started but since taking meds everything has happened. As you know there are many parents like us. My belief is we need to speak together to find better ways, not just chemical prisons.