Growing up with parents with mental illness

[Former-Member]

@Louise I imagine it must be an uneasy feeling to wonder how your sisters mental illness might be impacting your nephew and nieces... Sometimes it's hard to know what's really going on beneath the surface, but it's good to hear that the kids at least appear to be doing well, and that their dad is looking out for them! Having a parent with a mental illness can be really challenging, so I hope things continue to move in a positive direction for them.

Also --- Hiiiii @Appleblossom, *waves* and welcome to the Forums! It's great to have you join the community here 🙂 Wowza - That must've been hard to make sense of your childhood after realising at age 16 that both of your parents had schizophrenia. That's a lot for any young person to wrap their head around... It sounds like mental illness was kind of a forbidden topic between you and your parents - Would you have preferred if your mum encouraged you to ask more questions about it? Also I loved what you said to @Louise... "In the end, I guess we all wing it" That really made me smile! 🙂 hehe!! Again, welcome and look forward to seeing you around the place 🙂

[Appleblossom]

Yes Mental illness was a forbidden topic among other things like 4 of us we were in orphanages and foster homes. I left home at 16 as things were not viable, but didnt find out about mum's diagnosis til I was actually 30 and read it as the reason why we were made state wards.  She was furious even though I always tried to be kind and understanding about it, and probably instrumental behind a lot of her "recovery" as I tried to be loyal and supportive of her when my sister died.

[Sally]

Hi Jane, I also had a very similar experience growing up with my mother who suffers from SCZ/Schizo-Affective Disorder, depending on who is assigning the diagnosis.  This is also the first time I have ever posted or spoken about this issue, as I have lived with secondary stigma for most of my life due to my mother's issues, including from extended family members.  I am fortunate after many years to now have a couple of friends that I can talk to, although of course I cannot tell them everything about my experience - it really is true, I believe, that unless you have been through something very similar to this you cannot understand the enormity of it.  When my mother was well, she was a good parent, however during every one of her "episodes" over the years growing up my siblings and I were regularly abused and terrorised due to her paranoid delusions, as were my grandparents who tried their best to support us all, so I was never under the illusion that her behaviour was normal.  COPMI supports did not exist during my childhood either - when we would visit inpatient wards to see my mother during her previous stays, the MH nurses typically appeared ignorant of the fact that she even had young children, and would express surprise upon seeing us there.  As an adult, I have to deal with the legacy of having a parent who is very demanding and still has either very little or no insight into her illness, and MHS that do very little to help more often than not.  For a long time, I felt like I was required to step up and be the virtual parent, not the other way around.  It was only when the constant drama began to contribute to a potential breakdown of my marriage that I had to take a step back for my own sake (I now try to keep only occasional phone contact).  I still feel guilty at times, as my mother has few supports, but feel I am stuck between a rock and a hard place, and now have to concentrate on my own family responsibilities. Even now I am still living with the constant worry about how to ensure she receives adequate care.  I would like to think my experience has made me more understanding and empathetic toward others but it is still a hard road.  I hope life has been kinder to you, and commend you on your bravery for standing up and seeking support where you can find it.  

[Alicia]

Hi Jane1,
It's very interesting for me to read this discussion because I haven't heard many people talking about parents with mental illness. It's a subject close to my heart. My mother suffered from anxiety and depression and basically drank herself to death. The thing is - her mother (my grandmother) was taken away from my mum and her siblings when my mum was about 5 or 6. In my mums words she was taken by "men in white coats' This is a long time ago - 1920's - (my mum was 39 when she had me.) My grandmother was taken to Mont Park and the children never saw her again! She stayed there till she died in the early 1950's. The children were told to lie about their mum and say she was dead which is what my mum always told me until very late in her life.
Now, I know that's what happened in those days. It's just sad . . she went to hospital just after her 4th child was born . . maybe she had post natal depression? I have a copy of her file - there is no diagnosis just letters from the family to say she should not be allowed to see her children.
Can anyone refer me to someone or place where the history of my grandmother can be researched? I'm interested , one day when I have time, in writing a short story.

[Appleblossom]

Sorry to hear what happened to the women in your maternal line.

There is a heritage section in Bundoora Larundell or Montpark ... I came across it online one day and ... mine were there too and others ... keep looking.... and digging and sending away for info ... but dont let it consume you.... bet detached ... if anything comes back it will fill in gaps. I cant help  ... as heads exploding at min ... but I try and point people in the right direction .... even just getting an idea of the protocols and ways things were done gives great insight ... into personalities of our forebears.

As I was in orphanage "the  powers that be" have decided that those in that category benefit from that type of knowledge ... helps us settle demons etc.

The way I do it is just put out FOI requests and write away .. been doing it for 30 years ... then get a new idea or someone tells me something ... keep chipping away. I trained myself not to get attached to replies as they are too slow ... I practise detachment about it as a Buddhist discipline. Then you can always be surprised.

Yes with hindsight we know a lot more about the stressors which triggered major events in the past ... that knowledge has to be worth something.

All the best @Alicia

[Alicia]

Thanks heaps for that information Appleblossom. Chipping away is what I will do. I won't get too involved in this story but having lived with the secret for so long it's good to unpack the mystery a little.

[Sissy88]

It's so good to have some where to unload this burden and have people understand and help. I'm struggling to have my 90 year old father diagnosed with Aspergers Syndrome. We grew up having to conform and respect behaviour that was inappropriate, disturbing and often violent and abusive. Just because he's elderly his problems don't go away, new ones come with age and the old ones are passed down the generations. My family is still desperately in need of help, but even getting the diagnosis from the GP to the geriatrician is proving to be a minefield of preconceived notions and indifference towards the elderly.

[Smc]

@Sissy88, part of the reason that it's hard to get a psychiatric diagnosis for an elderly person is that general cognitive decline makes it difficult to distinguish age related neuropsychological problems from a pre-existing/established MI.

Also, I think there's some reluctance to make a diagnosis that's difficult and possibly "shameful" in the mind of the person in question when honestly, they may not have much of their life left. It can be a hard toss up- will the diagnosis result in help that will improve their quality of life for their remaining years, or will the distress caused by the diagnosis make their remaining years miserable? Even if a diagnosis would help close relatives, it's the welfare of the patient that has to be of primary concern to the medical professionals. 

I've been in a similar position with an ageing parent, who quite possibly has an undiagnosed long standing personality disorder (so I can relate to others who have been "child carers" for their parents without even realising it), but something I've found is that the aged care home is actually reasonably good with handling MI... given that they have to be trained to handle the various illogicities and emotional instabilities associated with dementia, anyway. However, it sounds like your father is still at home?

[Sissy88]

Completely understood, he's been tested for dementia and Alzheimer's which he doesn't have nor has he ever shown those symptoms and he's still physically impressive for 90, as is his memory.  He has barely changed at all over the years, he's still child like, and sometimes makes inappropriate comments and is and has always been socially awkward. His health and safety are of concern because he has never made a financial decisions, our mother made all the adult decisions. The house is falling down, he won't discuss repairs, wills, power of attorney. The vultures are circling. My family needs professional help to sort out his affairs. Yes he's still at home, I'm his carer.

[Smc]

@Sissy88 I can imagine that would be exhausting. We had similar difficulties; one parent with dementia who couldn't make decisions and manage household affairs anymore, and the other in denial about their worsening health and general capability. Afraid to spend money on repairs around the house, wouldn't talk about future aged care options. They had both signed Power of Attorney, thankfully. We just squeaked in with the one with dementia- a health glitch triggered a decline shortly after. If we'd left it a month or two later, the legally required competency to sign may not have been there anymore. Neither myself nor my sister lived nearby, and moving closer wasn't an option. (Too much upheaval for our own family, sister couldn't afford to throw away a steady job, and also it would have been emotionally/psychologically destroying for either of us. Home and childhood were not happy times.) We tried to persuade them to get help at home- home care, meals, home help. All flatly refused. Eventually it took a medical crisis and hospitalisation to bring home to them how bad things had become, and to our relief, the crisis was about as gentle as it could possibly have been.

So, is a diagnosis needed to allow you to get appropriate help on his behalf? We were incredibly frustrated and concerned about not being legally able to organise the help our parents needed. That hard thing, that as long as they're mentally competent, they're allowed to make their own decisions, even if those decisions are harmful to them.