A question for carers.

[Former-Member]

Hi everyone,

I know I should probably be posting with other sufferers of CPTSD/depression/anxiety/panic disorders, but I would like some honest answers from those of you who have to endure people like me.

A new initiative on this site refers to our loved ones being better of WITH us, but is that true?

Those of us, who live with suicidal ideation on an almost daily pervasion of our thoughts, are told by all and sundry that everyone else's life is better with us in it, but is that really true or is it a case of "The Emperor's New Clothes"?

Do medical practitioners and loved-ones, alike, keep telling those of us who would like to die - but do not have the courage to take our own lives, or stay living in excruciating world of pain for the sake of those we love - for our sake or for theirs? Does it assuage consciences in the (possibly) misguided belief that they are "saving a life", or make our doctors/carers feel better about fighting a losing battle?

In all reality, Major Depressive Disorder IS infectious; look at the long-suffering family and friends of we sufferers. They are forced to walk on eggshells all the time. They live in fear of what every moment of every day may bring, when mood-swings overtake a sufferer's rational mind... shifting from the deepest of depression to the most volatile (even if not physically harmful) explosions of anger (and that anger need not be directed at a physician or support person... it's just letting off steam) in the blink of an eye.

Dr. Phil often asks people, "How much fun are you to live with?" I am honest about my answer. I'm not fun, at all, and I suck all the fun and life out of everyone around me, without meaning to.

Those practitioners and carers who are indeed kind and patient will deny that we sufferers are a burden, and (in personal relationships) declare their undying love for us, and that they need us in their lives. But is that for our benefit, really?

I don't need anyone to verbalise when they are fed up with my ridiculous, irrational utterings and behaviours; I can see how much I hurt those beautiful people, and I can see in their eyes that they want me back as the person I once was. But that person has been killed off, and what is left - before them - is what it is, and nothing can change that.

If I was allowed to be voluntarily euthanised, yes, it would cause loss and grief to those few people who have not turned their backs on me. And, of course, there's the plethora of paperwork to be completed (death is only easy for the one who has died), and the reorganisation of everything that the sufferer may have been responsible for that someone will have to learn to take over, in order to keep the wheels turning.

But wouldn't it be easier, in the long run, to put the sufferer out of everyone's misery? For the one who dies, their suffering is finally over. For those left behind, they are left to grieve the loss of something that was lost long before and is now nothing more than a beautiful memory.

To put it in a more clinical fashion, if a person were to develop gangrene in one of their pinkie-toes, would it be smarter to have the dying toe amputated to save the rest of the person, or let it be treated as best as possible, with the outcome being that the person will soon develop septicaemia and die?

I know that not all sufferers are doomed to remain in their own internal hell for ever, but I am one of those pesky people who seem to be treatment resistant, and some people in my support people decided to dump me in the "too hard basket", and deserted me. I even had one telephone operator at Lifeline tell me that if I wanted to (a phrase that is disallowed in this forum), it was totally up to me.

So, am I playing the part of the little boy in "The Emperor's New Clothes" or being Devil's Advocate in the question I pose to you lovely folk?

I do not mean to stir up a hornet's nest, but I would like to understand... and I'd love to hear the unvarnished truth, rather than hearing what people think I want to hear or what they think they should say.

Sending love and light to you all ❤️

[Former-Member]

Hey there @Former-Member,

Welcome to the SANE forums. I’m one of the moderators. It’s courageous of you to reach out and share your thoughts with us. I'm sorry to hear how tough your mental health journey has been. I'm sure our wonderful forum members will pop by soon to share their experiences and hopefully give you some answers.
If you would like to talk to a counsellor for some one-on-one support you're welcome to contact the SANE Help centre (1800 18 7263) Mon-Fri 10am-10pm.

Feel free to ask the SANE forum team (by tagging @Moderator) or the members if you need help with how to use the forum. Also the Guidelines can be good for getting an idea of how it all works. 

Hope to see you around,
Sphinxly 🐣

[Former-Member]

Hi @Former-Member  would you refuse treatment to the person with gangrene just to save their pinkie? Would you refuse to treat and care for those who are gravely ill and dying anyway? of the elderly or those stricken with cancer or some disfiguring skin disease. just to end their pain?  No, I don't think you would. Or I hope you wouldn't.

Humans WANT and NEED to care for others. 
depression is curable, there are treatments. It is up to the individual to make the decision no matter how hard that is, to accept the help from loved ones, the medical profession and to learn to grow and LOVE YOURSELF.  Because as it is said, that if you don't love yourself who will.

hope my no bulls..t. helps ❤️🌻🌸

[Former-Member]

@Former-Member 

I would not want to lose my husband Mr Darcy and most certainly I am better off with him. 

Additionally I would not leave him and tackle any serious health on his own after I realised he would do better with his partner on his team by his side.   After a long crisis period and him dealing with things on his own and getting worse, I became his carer,  learnt about MI and  put together a history of behaviours, symptoms and medications that the doctors changed his diagnosis/treatment and I am thankful that he finally got relief from the worst of his psychiatric symptoms and had not been psychotic or suicidal since. 

Was it easy? No, at times it was heartbreaking and all seemed hopeless, but I was not going to let him go without doing the best I could do to support and  advocate strongly for him. 

Whilst we did continue to live together, some people with LE do find it easier to live on their own,  but having appropriate support of someone who is genuinely on their side and will advocate for them has been shown to improve outcomes and quality of life.

[Former-Member]

Dear Always-hope,

It seems that Divine intervention has stopped me from posting a very long-winded, although well-thought-through response.

In short, I had an eye-opening and shocking experience a couple of years ago when a long-time acquaintance in Canada finally told me that her alcoholism had finally caught up with her. She could live another 10 years, with her acute episodes cirrhosis becoming more frequent, more severe and longer lasting but she chose to apply for their M.A.I.D. Program. The acronym stands for Medical Assistance In Dying. It was, by no means, an "easy" way out for anyone.

So, in answer to your question, some people will do anything to stay alive, suffering invasive and painful procedures and treatments that are often to no real avail... merely making the last of their time on earth distressing for both them and their loved-ones (like my late mother, who volunteered for a clinical trial for her breast cancer... and I don't believe the side-effects were worth it, but it was her choice). My brother, too, has done anything and everything to battle his prostate cancer; so far his outcome has been somewhat better.

It is a personal choice. My advance healthcare directive states that, should I be unconscious/comatose and unable to speak for myself, I want no invasive procedures (only the placement of a cannula for the administration of pain relief, exclusively) and have asked not to be resuscitated if I am in such a vegetative state.

I have also had to make the hard call about euthanising dearly loved pets; this was in their best interest - as far as a human can perceive - rather than mine.

Why prolong the agony and the inevitable, if that is what a person truly needs (note I said need, not want). ❤️

[Former-Member]

@Former-Member, and all others. Please forgive me on the posting thing... I'm still working it out!

Directly to you, dear @Former-Member, I take it that the LE to which you referred was Lupus? (Forgive me if I'm wrong and I'm going to run the wrong way with what I am about to say).[N.B. If I am right about the lupus thing, here is a little something that I am quoting from Inna Segal's "The Secret Language of Your Body" (originally published in 2007) that you may find interesting. "Lupus—Plagued by insecurity, lack of confidence, distrust. Feeling like a victim, manipulated and taken for granted. Unresolved childhood issues. Inability to stand up for yourself. Weighed down by responsibility. Always putting others first. Anger, resentment, blame, and guilt. Holding on to a belief that you need self-punishment."]

I am going to give a standard response (from my personal observations) as to people who end up suffering from some kind of mental illness due to a physical illness or injury, i.e. "That's totally understandable!" And they're right. It's completely legitimate for the mind to start acting up when the body is ailing, and accepted as such.

I, however, did not suffer an illness or injury that caused my dysfunctional/dysregulated mental (and physiological) state. Rather, workplace bullying (including trying to work unrealistic/inhuman/inhumane hours and shocking conditions... and lots more while working in high-level security where I generally trusted murderers and other such reviled criminals than the people I worked for or with) caused both my mental breakdown as well as my physiological dysfunction... but it seems that when things occur in that order, the sufferer is considered to be a malingerer, despite the not-so-subtle, adverse medical signs, symptoms and tests stating otherwise.

Once upon a time I mocked those who suffered from apparent "psychosomatic" illness. I don't, any more. Thought is said to precede form so it stands to reason that when one's sense of self-worth/esteem/value etc. is reduced to being in deficit, it takes the form down with it. My darling husband still thinks I'm nuts but he's starting to see the correlations between my inner turmoil and the physical body that can be tested, quantified and qualified.

But he still gets understandably angry when I backslide in my painstakingly slow progress, although I never intend to backslide; I either hit a wall or I'm triggered and the rug gets yanked out from under me, yet again. And that perpetuates my belief that I'm irrational at best, and completely broken at worst. Poor hubby virtually lived almost on his own for about 12 or 13 years when I isolated myself as much as possible from him and the kids, within a very small house. I hardly spoke, if possible. Making eye-contact was nigh on impossible, too.

For 16 years I did all the "accepted" treatments. The meds at least kept me asleep for the best part of the first year of so-called treatment. Then more meds, one of which made the physical illnesses worse, and gave me a few more (all long-term too). I've done the psychologist/psychiatrist thing, and have left their offices feeling worse than when I went in; still in pain and several hundred dollars poorer for the experience, too.

While shut in the study for years, I completed a three-year, full-time undergraduate degree. I even braved it and went to uni to do probably one of the most challenging Graduate Diplomas on offer; I must have done alright because I was invited to train with the police force for a month, and was invited to join an "elite" scientific education group who was going international (they are in America). The crash came after a year of my Masters (by research). It all meant nothing! I gave giving a crap my best shot, though.

I've tried to start a business. It failed due to lack of interest by the people who would be my partners (given shares in my business... but I actually asked them to start helping out... silly me!).

My mental ill-health is barely recognised by the relevant healthcare "professionals" who know little more than what they learned in text books. And no-one truly seems to have the time or inclination to truly care about those in need of just a little kindness, any more (yes, I'm old-fashioned, and I am obsolete).

But thank you for your response. Despite my mopey response, I truly am grateful and thankful to you ❤️

[Former-Member]

@Former-Member thank you for your reply, just to let you know that if you use the @ symbol on the keypad it will let you tag me or others by a drop down box. You can type a couple of letters in this box also if the name isn't there and it will pop up.

mental anguish is terrible, I too have bad thoughts, but the pain it leaves behind on others is just as bad. I hope all of us can fight it.

i lost my best friend 6 years ago on the 4th of December to breast cancer. Lynda battled of and on for over 20 years and she never gave up. I have a photo of her and look at it daily to keep me going along with my 5 grandchildren.

stay strong, you are worth it. 🌹

[Former-Member]

Many thanks for the tip, @Former-Member .

On top of the meltdown I had already been going through for years, my elderly father died suddenly (I know the irony of that statement but, at 95, he was in good health). He died two days before his 96th birthday; we buried him on his birthday. He had been taking care of Mum, who was 18 years his junior, during her already two-year-long battle with breast cancer. A matter of weeks after Dad died, Mum went downhill rapidly. My siblings and I took care of her in the hospital (during her acute phase) for two months, then another five months at a nursing home. As there is no medical equipment in the home, I monitored her heart rate and breathing, manually... and I was the one to call her time of death. This all happened during my last year of under-grad studies.

Our elder son left home in 2011 and went to the other side of the country. Within a year he had met a woman whom he would marry. She ended up being the nastiest piece of work I have ever met... and I've met some despicable characters in my time! She's broken up our entire family, and he has become estranged. Oh, and he's no longer our son... he's our child/offspring/progeny etc. because he no longer identifies as a "he/him"... "they/them" prefer to be addressed as a collective. And I'm not allowed to contact him without texting, first. And I'm no longer allowed to give them presents/gifts, for birthdays, publicly acknowledged events, congratulations, house-warming or anything else. Their new parents and family are treated with warmth and acceptance (from what I've observed) but their own family has been discarded... like we're the poor, white-trash cousins or something.

I admit to guessing a lot of things when it comes to this situation as I'm not allowed to know anything... but I know human behaviour, and I knew my own child... even into adulthood. "Her, indoors" rules the roost, and I can't quite tell if "they" are a willing participant in this folie à deux or whether they are now in way too deep and can't get out. Either way, I tried to warn him but my opinion was not well received. 

The upshot is that I've made myself a doormat, and I shouldn't be surprised that I've allowed myself to be walked all over. After all, no good deed goes unpunished.

People know that I only resort to asking for help when I really need it, but I have swallowed my pride and asked for help and I have received scorn, condescension, ridicule, excuses, caused great hilarity and have been gaslighted for my troubles. As in my initial post, even a counsellor at Lifeline couldn't muster up any compassion for me (I'd tried ringing many times over the years and got through at some stage late last year; the lady was so wonderful (she did more good for me than all the so-called professionals and medications that I've endured for over a decade) that I made a fairly substantial donation to such a worthy cause... but not all counsellors are created equal, sadly).

I am obviously an idiot who places trust in people and things that do not deserve it, and I keep paying for it, hence my hermit-like existence, now. People so distressed me, for so long, that I developed an anxiety-triggered cold sweat (and I mean a literal cold sweat, which only seemed to be expressed through the skin on my face. A temporal-vein thermometer clocked my temperature at 32.2˚C, then 32.6˚c, before a day-surgery procedure... although the nurse had to dry my face off long enough to take my temperature). Since making the hard call to cut a lot of people out of my life, who had been my mainstays for so long, the cold sweats have all but stopped (but get me around people who make me anxious and panicky and I'll start dripping cold water like a leaky tap!). 

As I write all this, I can't help but feel like I have wasted you good folks' time and have started to sap you of what little resources you have of your own, and am feeling rather guilty for being such a wastrel... and feeling foolish for thinking that blurting out all kinds of gobbledygook would make me feel any better.

I thank you all, ever so much, for you patience, understanding and support. As such, I would like to offer something back to the readers of this thread. I found some form of healing through the use of tarot and oracle cards; not as a form of divination or fortune-telling, but as a way of looking at the archetypes represented and using them in context of a modern world as it pertains to me as a sentient being. It really makes you take a hard look at yourself and the world/society in which you live, and that's really painful, too... also because what you learn about yourself requires considerable effort on your part to fix one's own cognitive dissonance (at least to some degree). Should anyone wish to access ancient knowledge and wisdom (which we all readily ignore on a daily basis, because modern humans think they truly know it all when there really is nothing new under the sun... and I blame The Enlightenment for that!), I would be only too glad to let a card or two choose you (I don't choose the card(s)!). 

I wish you all love, laughter, prosperity, peace, happiness and good health ❤️ xxxoooxxx ❤️

[WinterSun]

Hi @Former-Member 

As a survivor of suicide ie. my son endinh his life in an unwell state, I will never believe that I am better off without his presence nor will his father, brother or friends.

As a consequence I attended groups where I met others in exactly the same position and the only place where we could be somewhat normal as we all suffered the same loss.

Not one of us ever felt we were better off. We are heartbroken, lost, shocked, shattered and constantly asking why ?

Even the mother whose only child tried repeatedly until he finally succeeded and had to learn to accept his choice without understanding it.

I know if I had any inkling my son was choosing this, and he did it while I was at home, I would have dragged him to hospital and banged down every door of every person to get him the help he needed.

I don’t know the clinical issues or influences of suicide or suicide ideation, I unfortunately know the lived experience of it, and it’s not nice.

Ultimately it’s a choice, right or wrong, in the choosing or the frame of mind that exists at that point.

There is so much that goes in to it. Experiences, disappointments, crises, abuses, upbringing and personality.

I tried to teach my son resilience and the importance of understanding himself but he took things hard. 

I have certainly felt burdened caring for family with mh issues and taken beyond my threshold of emotional pain and suffering. 

But suicide ends the chance of things getting better.

Peace with you.

[Former-Member]

Please don't be so hard on yourself, you have not wasted anyone's time or sapped our energy.  You have suffered so much and it is good to be able to release some of that pain.  I hope tomorrow is a wonderful new day for you and although you may feel that you've lost your son in someways,  remember you gave birth to him and you will always be his mum and no one can take that away from you.

always-hope ❤️