14-02-2017 09:35 AM
I think this is a difficult issue...I guess I would relate from my experiences with my mother - she has had schizophrenia as long as I recall (first hospitalisation occurred when I was 10 years old, but piecing together reports from other family members over the years, it seems likely that she had had this for much longer). My father is an alcoholic who was either absent or when he was present, was prone to aggression and violent outbursts. It is only in late mid life recently that he has been diagnosed with Bipolar disorder (we have minimal contact in part due to my parents going through a very acrimonious divorce when I was a young child).
From my childhood up until about 2013 was characterised by dealing with my mother's recurrent relapses and episodes resulting in hospitalisation. Since that discharge late 2013, she has been under the care of a psychiatrist who was quick to remove her ITO and reduce her medication. Since that time until now, she is no longer the person that she once was. There has definitely been deterioration, both cognitively and in terms of persistent paranoid ideation, panic attacks, and anxiety.
Prior to the that relapse, my mother was working in gainful employment, had studied at TAFE, had close contact with peer groups and a number of active social contacts. Now she cannot even maintain a normal conversation (staying on the phone for 5 mins. is an exercise in patience as she repeats the same stories over and over each time, exhibits derailed thought and persecutory delusions, and starts ranting about her perceptions of being wronged by people in her distant past as if it happened yesterday). She has also had panic attacks, depression, and has lost her confidence to do the most basic tasks (e.g. catch public transport), and has not maintained or mostly avoids her previous social contacts. It is apparent that she is in her own world, defensive, and has little empathy for others. She continues to state (erroneously) that her last admission was voluntary, as she was not mentally ill, but merely needed a "rest".
My younger adult brother lives with her and appears to have now taken over much of the household management and basic tasks. This is somewhat of a relief, however, beyond that he is not much help as he avoids dealing directly with my mother as much as possible (he has his own issues and was traumatised by both my parents, which included child abduction when he was about 6 or 7 years old).
My concern, particularly apart from psychosis, is the very obvious cognitive decline. These concerns started at the commencement of her last hospital admission where she frequently appeared severely confused and disoriented. The registrar would only state that ..."schizophrenia causes cognitive decline".
My mother has a history of severe episodes from which she would eventually make an almost full recovery after a lengthy hospital stay. This time she has not "bounced back". There has been little improvement over nearly 4 years. My aunt and I have called or written letters to her psychiatrist previously, who seems indifferent about this issue, as long as the 'evidence' [blood tests] indicate that she is still taking her medication.
I spoke to my GP last year who suggested a geriatrician do an assessment, as I am concerned about whether these above issues are due to poorly managed/treatment resistant schizophrenia or some sort of early onset dementia. I suspect both would be difficult to disentangle from each other. Of course, there is no way my mother would consent to that, as she believes that she does not have a problem.
Others here in the forum raise the issue of what the purpose or intended outcomes of differential diagnosis would be - I guess for me it would be knowing if there was more we could do to help her mental functioning improve - the guilt about whether I should be doing more about this is still gnawing away at me.
Has anyone else been through somethign like this?
14-02-2017 03:55 PM
Thank you @Sally, I have met quite a few people in my time that can relate to your childhood trauma. My generation refer to,it as growing up in the 60s/70s when mental illness/drugs and alcoholism within 'good' families was simply not discussed. All of those children are traumatised and my siblings when we are talking which now is almost never referred to it as a form of Stockholm Syndrome you had to love your captor. Most of us avoid relationships as adults have one or no children and drift through life questioning it's purpose and after therapy and alternative therapies still question what is life's lesson then? We can never see the point of such inherited misery. Discussing what happened and finding out your not Robinson Crusoe and your family is not the only village idiots does bring some relief and helps let go of grief and guilt. I'm always relieved and grateful to find others like me willing to share and shed and help each other move on.
14-02-2017 04:08 PM
Thanks @Smc sounds very like our situation. Our mother's passing last year has brought many issues to a head and forced them to be dealt with, however now our father will not discuss any issues unless a complete stranger makes a suggestion! He can be influenced by someone who serves him in the post office and we have to jump on these opportunities for getting long over due repairs, insurance and other adult issues he has never had to face while mum was alive. I have spoken to his GP at length regarding a diagnosis for Aspergers, if we get that than we can have the State Administration Tribunal take over and appoint a power of attorney and recommend what should be done in his best interest and safety, because as a family we have failed to do this for him, any attempt to discuss these matters ends and begins an argument. I hope being on here will help me find a way and also help others speak up about their situation.
14-02-2017 05:20 PM
Thanks @Sissy88..I relate to much of what you are saying about these experiences. For me, the worst aspects of my mother's psychotic episodes was not only that she was was so unpredictable during these times, but that she would ensure that my siblings and I were virtual prisoners in the family home - phones would be pulled out of the wall and hidden, doors locked, and my mother would physically barracade doorways and do everything possible to stop us from leaving the house. We were not allowed to talk to anyone in the outside world (including attending school), presumably lest someone figure out that she was unwell. She was domineering and would dogmatically try to impose her delusions on us - e.g. that people were out to get us , harm us, or take us away, that relatives could not be trusted, and that the world was a dangerous place. If you tried to rebel or argue against the existence of these perceived threats, you would either be subjected to verbal and emotional abuse, or physically attacks.
We were never encouraged to speak about our experiences, in fact it was probably avoided at all costs (as a child I perceived that it was something to be ashamed of). I just wish that health systems were more accountable, instead of having to constantly either worry and or advocate for my mother to receive quality care. These days I have to distance myself to a degree in order to look after myself. My brother seems to think that my mother's behaviour (even when outright bizarre) is normal.
I worry about how my mother is coping.
14-02-2017 07:05 PM - edited 14-02-2017 07:07 PM
WOW! Something similar for us but our mother would lock us out of the house. I'm not sure she was mentally ill just had too many children one after the other and couldn't cope, and married to an Aspergers husband which is like another child. I understand about your brother, some of my brother's can discuss the past and some just cannot at all. Everyone one copes differently but all are scarred by parental tyranny. @Sally I'm glad we can share on here, I would like to meet up with people also as a carer I need to get out of the house and as far away from the situation as physically possible for just a few hours and listen to other people and their opinions and experience and guidance. It does seem to take mid life to be able to get over the trauma and start to get on with life, I'm hoping tonight's discussion on mental health changes in Australia will shine a light on not just those with mental health but their families and carers also.
14-02-2017 10:08 PM
@Sissy88, I know one of our recurring worries with our parents was that it looked like we didn't care about them. We could only visit occasionally because we had kids doing VCE, and one of our daughters has a serious MI. So we were limited to school holidays, and couldn't manage every holiday. Our daughter having a bad reaction to an antidepressant medication ruled out one two week holiday completey, as one example.
You see the horror stories about elderly people found dead because they were so isolated from family and friends that no-one missed them. When one parent's got dementia and the other never phones, even when something's gone wrong (well, occasionally when something went wrong, but it was never guaranteed), there the worry that one of them might be ill or injured, and the medical staff have probably heard somethig vaguely evasive like "well, the girls have their own life...". We were trying to get help, but had no legal right to make any arrangements. The legal means of removing control from them do exist, but the trauma of having a parent declared incompetent as a carer would be huge, and the long term damage to the relationship would be awful. It was a bit of a relief when one of them was hospitalised, and that got a social worker involved. She was pretty supportive, and we had the partial relief that someone in a position of trust knew what we were dealing with. (We found suggestions coming from their friends or their doctor were more likely to be listened to as well.)
Another sort of media "horror story" theme that got in our way was the one about unscrupulous relatives who got Power of Attorney, and proceeded to take over the parent's finances for their own gain. I don't really understand why they thought we might do that to them. Part of the mental illness I guess. At least time has proven otherwise, but it would have been so helpful to be able to sort out the house with them before things got drastic. They were afraid we were going to take all of their things, or throw away things they wanted to keep.
14-02-2017 10:27 PM
@Sissy88 @Sally, my family's experiences didn't involve anything as drastic as being locked in or out of the house, but I know it wasn't until we were adults that we started to realise that something wasn't right in our family. I think eveyone assumes that their family is as normal as the next one. Parents have arguments that end up with one of them shutting themself away in a room and yelling that no-one loves them and threatening dire actions... and they go out the next day and act like a normal, happy couple. So you think that everyone's parents must have big fights like that when no-one's around. And the same assumption gets applied to all sorts of unhealthy behaviours and situations. Houses can be odd, private bubbles hiding all sorts of things away from the general eye, and some of those things are more toxic than others.
I still find it hard talking about my parents in a way that makes them sound bad, unless it's in a very confidential setting. (Oh boy I understand why we're not meant to use our real names for this forum!) I don't think it's quite to the "Stockholm Syndrome" level; I am confident that I do still love both of them, the one who's got the MI history and the other longsuffering one (who also very obviously never gave up loving). Annndd even in this anonymous setting you've probably noticed I'm avoiding saying which parent is which... I keep trying to balance out the need to be honest with myself and others, and the desire to defend my parents from bad report. I would have loved to be able to have them in a safe situation while they were still well enough to enjoy it. Instead their health ended up deteriorating to the level where living at home was no longer an option, and they both needed to be admitted to high level aged care. Can't change it; have to live with what we have, not what we'd hoped for.
15-02-2017 10:59 AM
Completely understood @Smc, it is only within the last 6 months that I have accepted the truths hidden within my own family and been able to voice those truths without feeling shame or disloyalty. It's still volatile with siblings trying to discuss anything, tempers exploding (again like our parents) when you ask a simple innocent question or make a statement and suddenly your accused of something you never intended. As a single parent I met so many other people from not exactly the same background, often they were far worse than I could of imagined, the things people actually to do children even their own, it helped me realise that as bad as my situation was others suffered more so I stopped feeling sorry for myself, but you still need to find someone who can help you repair your damage and when you grow up with damage you learn to accept it and think it's normal. Instead of feeling I had to defend I learned that my parents and siblings were also damaged and that's acceptable, I also learned while I can care for them I cannot help them I could only help myself, I'm now the carer for my father but here is only so much I can do, my siblings resent and suspect me but I have to let them, I can't even lead by example I just have to do the job ignore the insults and get outside assistance until this job ends and I move on.
15-02-2017 11:15 AM - edited 15-02-2017 11:23 AM
Oh god that so true! @Smc any visit to my family home could easily have turned into a tearing down of your soul, bringing up something you did when you were 6 or 8 that you could never be forgiven for, you could never bring friends into the home for the shame of their behaviour, insults and filth that whatever you did to clean up someone would deliberately destroy. I've been abused in public and online by siblings friends because of lies they tell to always portray themselves the martyrs and victims of a family that they quickly learned to exploit. When the reality is known it's no wonder people stay away, we are driven out at a very young age because the home is not safe and our parents don't love us, some of us try to help but it's a thankless task. Some of my siblings exploit shamelessly, some try to help and others just avoid as much as possible. We are the sort of family that could hit the headlines but if that's what it takes to help others that suffer and get appropriate mental health funding and better legal access and laws, so be it.
15-02-2017 12:12 PM
@Sissy88, @Smc, I understand what you are saying. I understand the "Stockholm Syndrome" analogy to a point - as children and even now, I have what I would sometimes call a complex relationship with my mother.
We are reasonably close, I care about her, but at the same time I carry a lot of resentment about her illness, how she appalllingly treats others when she is unwell (incl when we were children) and how when she makes a decision not to take her medication (which she has in the past) that it ends up creating chaos in the lives of everyone around her, who have to clean up the damage while she remains oblivious (e.g. unpaid rent, car accidents that happen when she is so far out of touch with reality that she drives dangerously on the road, abusive phone calls and weird letters to friends and distant relatives, you name it). This resentment also extends to mental health services, which fail to provide adequate follow up, particularly in the period after discharge from hospital stays, as she is seen to have a supportive family, and is not suffering dual diagnosis issues (in other words, we are expected to be responsible for her recovery, without being given the tools to do this well, or any acknowledgement that my mother can be emotionally manipulative, domineering and is very good at shutting people out).
I also understand the feelings of dlsloyalty that can occur when speaking out. Doesn't help that my mother effectively denies the pain of my siblings and I by saying that certain things did/or did not happen when I know otherwise. She tries to paint herself as "Mother of the Year" and recently there have been times where I have found it hard to be around her as she will randomly start saying things like, "I didn't have to care for you kids, you know, I could've just put you in foster care '[implication is that we should be grateful]. Denying to this day her mental illness may be understandable to a point in terms of saving face, but it is a painful point of contention for me, and underneath it all it makes me angry she will still not take responsibility for anything or acknowledge those that gave her critical, ongoing support (like my grandparents, who effectively raised us during her hospitalisations that would take several months at a time).
I used to feel disloyal talking about it. I can only now start to acknowledge that as a single parent with a mental illness I think she most likely did the best she could, and did some things well as a parent despite her illness (when she was not unwell). However, there were a lot of things (not all her fault, admittedly) that were not so great to deal with, and that were damaging. Sometimes it is the futility of the situation that is so annoying. On the surface, I would class myself as a relatively high functioning, normal adult, but the scars are deep. It affects all your relationships with others, and how you see yourself. I think it is important not to sugarcoat things, it is not disloyal to state the truth. However, sometimes it is just as important to recognise the complexity of our experiences in relation to living with parents with mental illness.
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