Family and Caregiver Schizophrenia Discussion Forum

Advocates Vs. Family, different perspectives


#1

Hello All,

My wife is about to come out of hospital, after her first hospitalization for a combination of manic and psychotic symptoms. Those of you that have seen my previous posts will have seen that we have two young children in the house and it was horrible before we got her out and very negative on the children.

I feel like she has had a team of a mental health advocate and social worker fighting her corner on everything and pushing her rights, whilst I am left fighting to work full time, look after the children etc with no time for pushing for my rights or the children’s.

I had made it clear that if they wanted to discharge her to me and the family home then I had to be part of the discharge plan, see the medical information and agree to the plan. I was meant to dial in to her tribunal for this reason. However, they just went ahead and did the tribunal without even dialing me in. I strongly suspect that this is because I will have to have seen all the medical information, and that there will be things in there that my wife doesn’t want me to see, hence her advocate has petitioned for me not to be involved. I’m told it was highly unusual that I wasn’t involved.

I feel like this leaves me in a situation where I am about to become the protector of two young children again, the carer to my wife again, yet I have been given almost no information etc to enable me in this role.

It also makes me question mental health advocacy. Reading posts here there are two quite clear perspectives I see, both driven by love and fear in equal measure:

The parents of children with psychotic illness - love their kids, scared they won’t have a normal life, wont them to have as much rights as possible and ‘many, many opportunities to get it right’.

The spouses / siblings of someone with psychotic illness - love our spouses but love our kids too, driven by love for the children and fear of what the psychotic person will do with the children next time. Scared of the emotional abuse etc. Scared that they too will be mad by the end of all of this, leaving the children without a sane and emotionally available parents.

Neither perspective is right or wrong, I can emphasize with the first group and I hope they can empathize with me. However, my thinking arrives at two points:

  1. The rights of young children and minors should be paramount and supersede those of a mentally ill person. Children are not healing aids. Furthermore, someone just said to me ‘she may need many, many chances to be a good mother’. You can change this statement to ‘she will need to be allowed to fail with the children multiple times in the hope that she gets it right one day’. There is a lot of research on the effect of psychotic parents on the long term output of children, and we can remove genetics because the adopted children suffer too, what happens to the children in these multiple failures, why should they suffer at all?

  2. Aristotle ‘We are what we repeatedly do’. Does it matter why someone does something? The output is often the same, the effect on other people is the same.

From my limited experience I think mental health advocacy has shifted too much in the favor of supporting the rights of the ill person, and not enough to the rights of those around them. I also feel that this has become one of these topics where the left wing politically correct lobby can just brutalize those that disagree with them and label us philistines, a little like the recent gay marriage lobby. Personally, I supported gay marriage, however at the time I was disgusted by how those that didn’t support it were treated. It’s like I’m being made to feel like some kind of controlling, uncaring hard liner for wanting to know the medical situation and care plan of a person about to move back into my house and that has the right (unfortunately) to be alone with my children.


#2

This situation doesn’t right to me. For your wife to come home and be a parent again without support is not too smart. As her primary support, you need to be involved and obviously she has not given you consent to have access to her medical information. I agree that as family members we need to know the plan and getting permission from a person whose brain isn’t functioning seems like a ridiculous rule. I have no idea whether you would do this or not but most child protective agencies also get involved in prevention. They will assign one of their workers to monitor the family for awhile, provide parent training, etc… If you felt that this could be helpful, you can call them and explain your situation. Best wishes


#3

You are facing the exact situation that parents often face with their mentally ill children. You have given an ultimatum to your wife’s mental health team and they have totally disregarded you. Will you follow through and refuse to let her come home?

I ask because I think some of the “many opportunities to get it right” are forced upon us. Many of us -whether parents, spouses, children or siblings, are all in the same battle with the time and place we live in. We face these hard non-choices constantly. I don’t think I have a real choice when my only other option is to dump my severely mentally ill son out on the street.

You have a much higher stake with children in your home.

A man who attended the local support group years ago, before they moved away, was in your situation. So many times I wanted to say “please, return your wife to her parents”. “Take your child and move far away from her mother. Give your child a chance at a normal childhood”.

And at the same time, I am totally awestruck by the love and the commitment so many spouses have for their spouses with mental illness. One of the women in the group was able to handle her husband’s illness while raising children, she just took it all in stride and maintained a home life for her children while her spouse went on and off medications. The kids are teens at this point and are involved in their dad’s care - it looked like a healthy situation all around. I hope it actually is. She seemed to believe, this is what I married, this is their father, this is what we do.

The World Health Organization identified the need around the world for family members of people with mental illness to be recognized as legitimate care providers. The mentally ill were identified as the “most disenfranchised people on the planet”. They can’t address one of these problems without addressing the other, we have to be recognized as a real voice on the care team. How can our voice not be equal to a doctor’s, advocate’s or social worker’s?

In my opinion? You should continue to be a strong controlling, uncaring, hard liner. Some of the most successful situations on this board seem to come from that perspective. I hope I have the strength to do the same.

My son’s doctor recently told him he was doing great without meds when I asked if he would support my husband and I in an attempt for court ordered meds. I wonder if his opinion would be the same if a block of granite had been heaved at him?


#4

We on the forum know how much you care for your wife and children. I personally feel that anyone who is caring for a spouse with persistent SMI and children to raise is going above and beyond what was expected when the vows were spoken.

You are doing your best. We here on the forum all want you to find the peace in your heart that will help you get through these difficulties. We know you care and we also know that none of us has any control over mental illness whatsoever. Best to you and your children.


#5

Yes, this is what seems ridiculous to me. I have read a lot about this recently. Mental health advocacy has closed down many of the long term hospitals in Western countries, and also empowered the rights of privacy of the mentally ill person. To me, these rights begin to affect children which I think is wrong. For example, the advocate ensures there is the minimum in writing in case of divorce etc (she threatens to divorce me a lot, I think she actually wants to but realises custody would be hard for her to get). I then have a call with a Doctor, again nothin in writing, saying she isn’t capable of looking after the children on her own for long periods. I get to a point where I think why wouldn’t ANYONE involved in this care most for the children, and if that’s the case surely this stuff is NEEDED in writing, firstly because its true, it was said, and so a record should exist and secondly because it may be necessary if she files for divorce in a manic episode to ensure the children don’t end up with her. I just can’t see how a responsible adult would want to empower a parent that suffers with psychosis to gain custody from a parent that doesn’t.


#6

Thank you. I hadn’t seen it from that perspective. I agree that with ‘care in the community’ we have these situations forced on us. I really can’t see the problem that someone who agrees to be carer should have full access to medical details, especially if they are the only other adult in the home with the sick person and children.

If we didn’t have young children I probably wouldn’t ‘follow through’. This time I have. The social worker is furious apparently and has said I’m ‘aggressive and controlling’. I feel I have had to be aggressive to assert the rights of the children and of course I’m being controlling, I need to be able to move quickly to hospitalization or removal form the family home in the next episode to protect the children form going through months of hell again. I think anyone that wouldn’t want to be controlling here would not be a fit parent.

I’m also interested in what you say about the WHO. To me, the mental health advocacy movement in the countries where I look at it (I don’t know much about the USA) superficially looks after the interests of families but is far more interested in the ill person. I think an advocacy group just for families would be very interesting, and would likely clash with organisations such as SANE on a lot of things.


#7

Hi there,

I am the daughter of a person with paranoid SZ. I am sorry to hear that you are going through a transitional period right now. My mom and I have had similar situations with my dad (same goes for my dad and I with my mom who has Bipolar). I have to say that it was amazingly difficult when these situations occured. I remember seeing both my parents in a lot of frustration and pain. However, there is not a whole lot that will change if you found out every detail of her plan of care.The best thing is giving her tons of love and support during the transition between hospital and home. Your kids probably can’t comphrehend what’s going on right now. To them, “Mommy is away again, but she’s comming back soon”. I, like many other children of parents with mental illness, love our parents as whole people, illness and all. We do not know anything different. It’s okay to have a mental illness. Sometimes people who are mentally ill ask for more privacy because they are so traumatized by their state of illness at the time. She may be frustrated with the lack of control she has over her life and mind at the moment. Try to support your wife with the few decisions she can make right now. Your wife may also be comforted by the respect you have for her privacy. She is in such a vulnerable state of mind right now. Sometimes when we are vulnerable, all we can do is shut ourselves out from the very people we love most in this world.

I am 21 yrs now, and in my last year of my bachelors in nursing. I learned SO MUCH about compassion, resilience, and love from having two parents with severe mental illnesses. i cannot wait for May, because soon i’ll be a psychiatric nurse. -So that I can help people help themselves, just like the nurses and doctors that helped my parents to come back to me every single time.


#8

@Cato1 I just came across this post and I’m interested to know how things are going for your family. If you have not already come across this suggestion, I encourage you find a local NAMI Family Support Group and especially a Family-to-Family class if there is one offered in your area. Of course, these things are more difficult to attend when you are caring for children at home but perhaps there is a way.


#9

How awesome that you are pursuing a career helping others, and one that is so entwined with your experience! I hope you are finding satisfaction in your chosen career path!


#10

Bless you for being a psych nurse and bless you for all the good work you are doing for our ill folks. I’m a geriatric and end of life nurse and I know my area of expertise is appreciated by many families. And I know I deeply appreciate being able to talk to a nurse when I call the hospital where my son lives. So go forth and nurse- and know you are appreciated.