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Families and Mental Illness: What Do They Know?

When my son, Ben, finally began treatment for mental illness,  I kept careful notes on all the symptoms I saw between appointments.  At best, Ben would see his therapist and/or psychiatrist for 1 hour a week and was often able to hold it together for that one hour in a much better way than he’d been able to do all week with us.  So I made an effort to fax these notes to the provider the day before the appointment.

Some read it. Most did not, citing “no time” as the reason.

Really? What kind of session can you have if you don’t have all the facts? Families know. They know a lot.

Many Mental Health Providers Shut Loved Ones Out of the Treatment and Recovery Process

To this day, the amount of family involvement “allowed” varies greatly, and

family hand up
family hand up

I find that a number of providers are so scared of the “privacy laws” that they don’t realize that they are allowed to do things like receive info from the family or share general facts about the diagnosed or suspected mental illness.

Why? Because families are part of the solution – or they can be, if the blaming stops. Mental Health Providers: by the time you meet the families, they may already be at the end of their respective ropes.

We want to be heard. We want facts. We want realistic hope. And please – tell us how we can help.

family therapy
family therapy

Families like ours who have been to NAMI, read books, visit HealthyPlace to share and learn about mental health can be especially priceless allies in the treatment plan. Please don’t push us aside. If you have no time for us, tell us where we can go for information on mental illness and let us know how we can best help our loved one as well as ourselves.

Right now, with Ben’s recent relapse still fresh in our minds, we are taking more charge of his life than we would like to – and that’s because the option (independent living with close to no program of support services) is so frightening to us.  So Ben spends time at his apartment and “visits” us a lot. Which means, for now, that we supervise his psychiatric medications, drive him to work and school, and make sure he gets to his NA meetings.  I trust us. It’s working well. But the goal here is eventual supported independence and we are still aiming towards that goal. Meanwhile, his providers are including me in decisions (I am conservator, so that makes the privacy thing easier). They can see the value for now. And – oh yeah – they still get paid for “supervising” – as we still wait for food stamps and other benefits to get straightened out.

Most families do not have – or want – degrees in social work. Still, we have learned a lot and we certainly know our loved ones and how they behave the other six days and 23 hours of the week.  Mental Health Providers: please listen to us and include the information we have in your treatment plan. Let’s work together, whenever possible, toward the goals we all agree upon.

10 thoughts on “Families and Mental Illness: What Do They Know?”

  1. Hi Randye,

    Thank you for this highly informative post! I agree so strongly that families need to be involved with the care of their loved one when it comes to mental illness. So often, those with MI cannot make sound decisions for their own care, as you said above, they can hold it together for the hour they’re in front of the therapist, but it does not reflect at all what is happening the rest of the time.

    The medical establishment in general needs to listen more to the information family members can give so they can treat the patient with more informed knowledge and understanding. My Mom was 78, had colon cancer for the 2nd time, had surgery, had a “minor” heart attack (we never were able to determine that) and they put her on meds for her heart. The meds had incredibly extreme side effects, she was dizzy, not breathing well, etc. I took her to her cardiologist with a list of questions, he had an obvious ego issue and didn’t want to listen. I made him listen! I told him she also wasn’t sleeping well and that’s when he focused in and listened, explaining that side effect doesn’t usually happen so quickly. He then reduced her meds by half, and listened to the rest of my questions.

    I’d gotten most of my information myself, researched online and was told that I as a lay person, educating myself online was not to be taken seriously. I got mad, said I was my Mom’s advocate, that if the darn medical establishment would take the time to actually inform the patient and their caregivers, then I wouldn’t need to go online, but I wasn’t getting ANY information, so online was better than nothing.

    You mentioned you had been given conservator status and that helped a lot with privacy issues. I’d not heard of this before, searched again and found some good info but from the state of CA specifically. Is this something available across all states in the U.S.? I’m in Canada, so I’m curious to know if this is available here, we did sign a power of attorney form which gave me right to having her medical information, but does not sound as extensive as conservatorship. If you’ve got a good link about the conservatorship, I’d very much appreciate it and would share it with many others.

    Thank you for this wonderful, enlightening article!

    1. Hi Barb – you’re welcome! and thanks for taking the time to share your story.

      I don’t know a lot about conservatorship in Canada. I can recommend a terrific author/advocate, Susan Inman, who lives in Canada and wrote a book called “After Her Brain Broke” – she knows a lot and writes great, knowledgeable articles. Check out her website! here’s a profile http://www.smashwords.com/profile/view/susaninman

      thanks again – good luck! let me know how it turns out –
      Randye

  2. Hi Randye!

    Thanks for getting back to me. I shared your wonderful post on my FB fanpage “Suicide Shatters” where I host posts on suicide, prevention and mental illness. Also shared it on BringChange2Mind as they are all about channging stigma surrounding mental illness. I think it’s so essential that family are included in the treatment process, they have invaluable information that can help.

    Thanks also for the link for Susan Inman, I’ll definitely check it out. It’s so important to get informed and know what is available in your area to help someone when they are not of sound mind. I know for some this conservatorship may be of concern from the perspective of the mentally ill having their rights taken away, but from what I read, it sounds as though there is quite a vetting process required before this is given and it’s deemed very much in the best interest of the person.

    I so love HealthyPlace for its many wonderful authors, the posts like yours and just the fantastic resources it offers.

    Take care, Barb

  3. thanks Barb! will check out your FB page ans “like” it. BBHV has a page and also a “friends of” group, if you’re interested. BringChange2 Mind is also fabulous.
    best, Randye

  4. Hi Randye,

    Terrific article! My son has a public guardian (we are in California), as it was too tricky to have us be his conservator. We are fortunate that the health care providers we had to work with so far have been very open to our input and have worked with us directly. also, at this stage, my son has been willing to share health care info with us, but as you know, that could change at any moment.

    Still, even with an entire team supposedly charged with his care, I have often had to take the lead to make sure that he wouldn’t fall through the cracks, especially during his move from a locked facility to a group home, when it wasn’t clear who was going to administer the shot he needs every two weeks. Long story, but the point is that without my advocacy and vigilance, and even with the best team in place, things could have slipped.

    Like you, I keep notes. I keep notes about my son’s symptoms, meds, his reactions to the meds, as well as a log of all my interactions with his care team.

    Right now I am in the process of reading your book. Thanks so much for sharing your journey with us. It helps so much to know we are not alone.

  5. Thank you, Maria. I hope you find the book helpful, inspiring, comforting, whatever you most need. Yes, families and friends – and keeping a sharp eye on things – is vital. Those cracks are huge!

    best,
    Randye

  6. I think the person didn’t want to read it because they didn’t want to be imprinted by anyone else’s opinions. The MH provider probably wanted to make her own decisions about your kid… juz sayin’

  7. Really Kim? What MH provider wouldnt want input? My thinking a bad one. My son has Anasnogia, and isnt even aware of his illness, paranoid scizophrenia. A good therapist, psychiatrist, and psychologist welcome the input from families. They even consider that families often down play symptoms so as not to make their family members seem so bad.

  8. Subject: psychiatry is half blind

    Myself is victim of mystery mental disorder i undergone many treatments to no avail for 20 years. so i did my own investigation so I’ve learn something which is about inner self of my mind.i simply can’t elaborate it to a psychiatrist who got one eye blinded by contemporary psychiatry.therefore nobody believes my definition of mind which is the universal truth.so i am comfortable explaining it here.so here i go mind has two sides in order to function 100% well.

    Here is my modern analogy.for eg: let’s take a computer what it needs to make it work properly?computer has a hardware side and a software side .from our expireance PC’s tend to get slower as we work with it, by ruining various applications especially if we install/unstall apps. which cause file fragmentation in the hardisk and some apps will reside in memory which make CPU threads to become overloaded with junk apps and files.so the mind of the pc become ill.if there are viruses in memory then it become possesed .what about hardware failures.hardware is a platform where apps do handshaking.so both hardware and software issues can make pc sick.so i am not going to explain about pc hardware which is not the objective here.

    Now lets talk about human mind.human mind also has physical hardware and intangible software we call it soul.but unlike PC’s they were made by mother nature.so we don’t know how our brain & soul do handshaking with each other to make our mind 100% healthy.

    Unlike computers.what we do when we develop mental illness due to overloaded & fragmented soul(which is the software of mind)in most cases we take pills,injection & electric shocks.we only treat to our hardware brain but not to the soul part of our mind.in this case patient is lucky if illness is cased by only physical brain.what if underlying reason is fragmented soul.in many cases (like in PC’s)soul is the root cause of many mental disorders.
    i say What ever the case may be giving priority to soul part of our mind has profound effect on patients early recovery.

    also like in computers most mental disorders are caused by soul part of our mind sadly thats the only thing we ignore.why…….because unlike computers mind is not made by humans.in computers
    if we suspect hardware fault we can replace whole thing and see if fault goes away if it is then fault is hardware same goes for software faults.but in our mind we cant do that so we only treat physical brain.

    little more about computers.we do resets or reboots if our PC’s get stuck or become unresponsive this can work right? Can we reset or reboot our unresponsive mind? I say yes how ? trained people do that.it is called hitmataizing.we can clear the fragmentation of our soul in some extent by doing it. like in PC’s it will not work very well for every case.in pc what we do if reset & reboot wont work due to severe software fragmentation.then we do low level formating,partitioning & re installation of apps right? this will fix all the software faults.

    If patients soul is severely fragmented hitmstizing wont help.can we do reformatting,repartitioning,re installation of soul modern psychiatry cant do it.i dont think neither physician nor anyone from medical field can do it.there could be some healers or psychics with higher state of mind may do it.this is just a key for unlocking the mind.so remember mental disorders are caused by both brain & soul.if we can id which cause which then mental disorders are effectively treatable. Old psychiatry is gone we should develop parapsychiatry.

    i am here providing some web links which are relevant to the above comments . These are all about spiritual side of our mind-(parapsychiatry)-please read or send it to relevant personal http://www.dissociation.com/ http://www.spiritualresearchfoundation.org/ http://www.spiritrelease.com/cases/sandersonprofile.htm thanks.

  9. I say again mental illness is the illness of the mind not the brain.psychitric drugs are nothing more than pain killers they don’t cure anything.

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