Grief or Traumatic Events

I seem to have an atypical response to death & dying.

For instance, when our first daughter was born (full term, difficulties at birth), I needed to know everything about what had happened, what the outcomes could be for different options, etc, before we made the decision to withdraw treatment.  We then threw ourselves into writing the non-religious funeral. We were sad, numb, but it was very logical, and I do remember still being able to share (very dark) jokes and laugh.  I seem to remember crying once a few months later and spoke to the GP at length about the process of grieving and grief-based depression (as opposed to clinical depression). I found what the GP said about peaks and troughs of grief (over months/years) useful as it allowed me to validate the grief continuing for some time.

When my mother died (long illness) there was no depression other than being a bit glum.  We were purely practical on doing the flat clearance, dealing with the estate, organising funeral and wake.

I suspect many would view me (and my wife) as 'cold', 'uncaring' or 'emotionless'.  We're not, it's just we don't react as most people do.

Of course, there is no such thing as a "typical reaction for people with ASD/Aspies", so that doesn't invalidate other peoples reactions, nor would I ever try to suggest that my reaction is the only right one.

Curiously, in the recent case of the baby whose parents wanted to take him to the USA for a new treatment, but where the hospital & courts ruled that he should be allowed to die, I fully, strongly supported their position in doing what they felt would be best for their child.  The fact that we took the opposite decision was right for only for us, in our particular circumstances and with our particular belief-set and mind-set.

Hi - I don't think there is a 'typical' response to death & dying, or to any other significant traumatic life events. No matter if a person has ASD or not, because we are all unique individuals. There are so many contributing factors which impact on how we/ I/everyone reacts under severe stress. 

Possibly though what may be unique to people with ASD under such conditions: our personal resources, reserves can already be stretched to the limit sometimes and any additional, unexpected, traumatic stressors have the potential to tip the balance.

I know for example that I can healthily manage extreme stressors sometimes. That will be when my foundation feels stable and I feel centered, mindful, at peace, happy etc. Maybe my job is going well? Maybe all my relationships are enjoyable? Reduced anxiety? Etc Etc Etc These act as buffers under stress - having a stable foundation helps.

BUT then - I can though come across insensitive to others, too logical at the same time. Maybe compartmentalising? So despite what's going on around me, I can continue with what I'm doing. But that doesn't mean that I don't care and will not be empathetic. Far from it. 

On other occasions under extreme stress - grief, job loss, relationship breakdown, a member of family unwell and so on - I can be knocked completely off balance. But that's because my own foundation was not steady at that point in time.

And for me at least - it's crucial to strive for, maintain and sustain simplicity, a very steady foundation. Otherwise all my normal activities of daily living and subsequent well being can be terribly affected under stress. 

But that's easier said than done. It's a bit like someone saying to you, 'just try and relax, switch off ...'. And before I know it, despite plenty of warning signs, I can't see the wood for the trees. I'm overwhelmed, overstimulated, living in chaos ...

If/ when this level of well being deteriorated to such an extent for a non ASD person (no known mental health problems either I mean), then troops would be mobilised to support. Because it would feel like a shock and hugely worrying for that person. 

But with ASD this can be such a frequent occurrence that I think a tolerance is built up. Can become the norm. And I know for myself at least that much of this is kept private, hidden. That requires a lot of control. 

There's something very strong and robust about me. On the other hand I feel immature, as if I've skipped vital developmental milestones (but appeared all fine at the time) and vulnerable. 

There always seems to be lots of contradictions on numerous levels.

I've written this post very quickly and hope comes across okay. Must now crack on with my jobs.

JEP

JEP said:

And for me at least - it's crucial to strive for, maintain and sustain simplicity, a very steady foundation. Otherwise all my normal activities of daily living and subsequent well being can be terribly affected under stress. 

Absolutely with you there.  Simplicity is crucial for me.  I have to keep responsibilities to an absolute minimum.  It's partly why I don't earn much and have never wanted to do things like run my own business or be a manager.  Also, having a small income imposes very natural constraints.  When I tell people what I can manage on, they think I'm kidding.  A few years ago, when I was married, I had a mortgage.  Even though it was affordable, it scared the hell out of me.  After our divorce, we sold the house - and I had a nice lump sum for the first time in my life.  And that, too, scared me.  It gave me choices that confused me.  It actually made me unhealthy for a time, until it was all gone.

JEP said:

But that's easier said than done. It's a bit like someone saying to you, 'just try and relax, switch off ...'. And before I know it, despite plenty of warning signs, I can't see the wood for the trees. I'm overwhelmed, overstimulated, living in chaos ...

If/ when this level of well being deteriorated to such an extent for a non ASD person (no known mental health problems either I mean), then troops would be mobilised to support. Because it would feel like a shock and hugely worrying for that person. 

But with ASD this can be such a frequent occurrence that I think a tolerance is built up. Can become the norm. And I know for myself at least that much of this is kept private, hidden. That requires a lot of control. 

Yes again.  People saying things like that to me - that's a red rag to a bull.  I have to try to explain to them - I'm a  cat, not a dog.  A bike, not a boat.  A Windows PC, not an Apple Mac.  When mum passed in April, everyone was worried for me because I was closer to her than anyone else, and had nursed her for her final six months.  Everyone knew she was like my foundation stone.  Yet for 5 weeks, I was completely as normal - just going about my business.  I think people were shocked and surprised by this.  My brother, on the other hand - NT, well-adjusted, happy family life, successful business, plenty of friends... he was the one who suffered.  Maybe guilt was a part of that.  I mean, even I suffer guilt feelings, though I don't need to.  And concern certainly seemed to be focused on him, because I was 'coping'.  Now, though - at 10 weeks - I'm breaking down.  You're right that we build up tolerances.   I've experienced more trauma in my life than I care to talk about with other people, who - like my brother - tend to 'normalise' experience:  'Oh yes... I was bullied at school.'  Like hell he was!  I lived in fear for six years, dreading each day.  Same quite often in the workplace.  I had such a bad experience with workplace bullying in my late 30s that I couldn't function properly for 6 months - and it still comes back to haunt me 20 years later.  All of it does.  So, the tolerances I've built up make me react to trauma differently now - often in a way that is misunderstood, and put down to 'coldness', etc.  But the reactions filter through, eventually.

JEP said:

There's something very strong and robust about me. On the other hand I feel immature, as if I've skipped vital developmental milestones (but appeared all fine at the time) and vulnerable. 

There always seems to be lots of contradictions on numerous levels.

Once again, spot on.  People see me at work (I work in care) and see me as extremely capable, empathetic, dedicated - STRONG.  But the truth is - I am immature.  I have missed important developmental milestones.  And I am vulnerable.  My care role brings out the best in me.  It keeps me, too, in a very 'young' frame of mind (I work with special needs).  I love acting the fool, behaving like a clown - getting a laugh.  I didn't need training for the role.  I just fitted in with these people.  Maybe they tune in to my vulnerabilities in the same way I tune in to theirs.  I, too, am full of contradictions.  I'm fond of quoting Walt Whitman on that score.  'Do I contradict myself?  Very well, then - I contradict myself.  I am large.  I contain multitudes.'

Most people are the same, at heart.  But many would never admit to it.

Again - what you say makes perfect sense, whether it's quickly-written or not 

Hi JEP,

I'm wondering if it does perhaps not really matter so much whether someone's diagnosis is "real" or someone doesn't have a diagnosis at all? I've got a professional one and can certainly see traits but don't quite agree that the way I am should be called a "disorder" or "disability". I had been hoping  that the people doing the assessment would see it that way too and when they didn't I got quite upset. But then reading a bit on here there are plenty of people feeling and behaving in ways I can totally identify with, including what you said yesterday: "I had wanted to say that on reflection I feel that I came across intolerant and would like to apologise. All I needed to do was switch of the 'Notifications' instead of receiving all new posts!" - this could be so much me... everything about it. I'm finding it helpful to be able to identify with someone somewhere when it comes to things where everybody I know in real life seems to feel and behave different from myself. Maybe try seeing it like that? I mean, you will be quite different from others who do have some sort of autism without doubt in many ways, so their advice/comments on something you struggle with may not be more useful to you than what someone says who is perhaps not really quite that autistic but feels the way you do about a specific issue. No matter who says something, you'll always have to decide if that works for you/applies to you or not.

I can see why you find the poems thing difficult, guess I would too, partly also because I have this lack of lacking empathy that seems to disqualify most on here from being proper Aspies (yourself included). If it hasn't stopped, have you told him this and asked to stop it, just plain and direct? Can't imagine he's doing that intentionally.

Hope you can get something out of this forum, more positives than negatives.

Hi tom thank you for telling about your experiences,Although we are all different there's always something that helps. I truly ope your new job goes ok for you.

Dear jep I really feel for you and hope that sharing your issues on here will somehow help in your situation.one thing is certain if we could help we would.each of us are here to try and understand who we might be,the quest continues. I hope by reading what tom has gone through will give others courage to keep going knowing that despite all the negatives life can bring there is always a better day ahead. Take care Brian.

JEP said:

Thanks a lot for replying in such a thoughtful way. I had intended to post re: my comments earlier than now but have had difficulties accessing the website over the weekend. Maybe something amiss with my server this end.

I had wanted to say that on reflection I feel that I came across intolerant and would like to apologise. All I needed to do was switch of the 'Notifications' instead of receiving all new posts!

Quite honestly the past few days haven't been great for me - I've been 'upset', fed up, you name it over so many things! Projecting my own problems elsewhere. 

Not saying anything inaccurate nessersarily (sp?) but just wasn't required, or repetitive, or not mindful.

Re: employment - I have first hand experience of the difficulties that can happen. And I became in some ways 'unemployable'. So now am self employed but due to what's going on with my mum, rather how I get consumed / or respond/ cope with it - this has detrimentally affected my own business. So I'm probably about to lose the art gallery very, very soon. Things have been put in motion.

Quite possibly I have some anger at present because feel that I'm not getting the required support. I'm on a wait list for specialist psychological services but despite them knowing I'm in a crisis, or have added stresses, unfortunately it will take a year to be seen via NHS. 

Maybe I don't need to be seen either? And it's just a case of riding this out and drawing on my own skills, resources, strategies. But easier said than done when you can't see the wood for the trees, or have awful anxiety etc

I am though so relieved to have been introduced to this Forum. Reading about others experiences in many different contexts, there's some interesting discussions. It makes me realise that I'm not alone with my experiences. 

Congratulations on your job Tom - I'd read a week or two ago that you'd applied. It sounds perfect and well timed too. Are the 30 hours a week regular? I remember that was your preference. Anyway best of luck, when do you start?

Hi JEP,

I think there were issues with the site at the weekend.  I couldn't get access on Saturday afternoon or Sunday.

No need to apologise.  I can understand how you must have been feeling (empathy? ).  At times like this, I think - at least, based on my own experiences these past few weeks - that it's very difficult to pin down emotional responses.  Mine have been all over the place, swinging from anger to guilt to sadness to a kind of equilibrium again.  All part of the grieving process - which I think, in some ways, you're experiencing as well.  One of mum's care workers said to me that I really began grieving when mum first became ill and it was evident that she would never fully recover.  Once I moved in with her to nurse her, I was experiencing at first hand that gradual deterioration - the loss of mobility, the loss of memory, the advancing disorders, the low moods and tears.  So maybe that's right - I was grieving for the person I saw very slowly fading out of her life, and out of mine.  It's traumatic.  And any annoyance becomes a major irritation.  That's why I think being bombarded with unwanted messages would have made me angry and frustrated, too.

I'm sorry to read that you may lose the gallery, and I take your point about being - or feeling, at least - 'unemployable'.   I've had 27 jobs in my 40 years of work - 28th coming up!  I never found anything that I really liked or felt fulfilled in, and spent a long time in a kind of wilderness - just going through the motions of work simply to pay the bills, and wondering if I would ever find a 'calling', or something that at least gave life meaning.  That's the lot for many people, of course.  But for me, it led to a lot of disruption.  It pretty much destroyed my one marriage.  I couldn't find any satisfaction in anything - not even in the love of another person.  When I took an abrupt left-turn after my divorce and went into care work for the first time - I think that's when I finally found something that, at the very least, meant something to me.  In those 12 years, though - interrupted by a brief period of self-employment - I've still moved around a lot.  This new job (which I start as soon as my DBS and references are in, so maybe early August) will be my sixth in care - though the first in which I can specialise in working with autistic people.  Again, I grew dissatisfied - with working conditions, with the attitude of co-workers, with often feeling exploited.  Care isn't something anyone goes into for the money, either.  Long hours, shift-work, exhaustion... and the constant underlying sense that at any time you could be called upon to work extra hours to cover for absence.  Sick absence was frequent, too - for the reasons given.  I knew people who'd come in to work on Monday morning and not go home until Wednesday night - just tagging shift onto shift.  It's probably not legal, but it was kind of expected.  And people did it because they needed the extra cash.  Often they couldn't get by on normal hours.  I suppose I'm lucky because I prefer to live an austere, minimalist life.  I work to live - I don't live to work.  But I don't get any luxuries, and holidays are always spent at home.  Good job I live within 200 yards of a beach, I guess!

I hope this new job will be better.  They're a good employer, and offer good benefits which you don't always get in private sector care.  It should give me more control, too.  It's just four days, and office hours.  And, as I said, it's specialising in autism.  I suppose if I'm 'employable' in any sense, it's in this one.  It plays to many of my strengths.  If it hadn't come along, though - I'd have been looking at a cleaning job or a driving job, something like that.  Just something, again, to pay the bills - and maybe keep people off my back and give me a degree of autonomy.  I don't want a career.  I'm not seeking advancement.  Unless I make money out of writing at some stage, I'm never likely to shift from the economic status I've held all of my working life.  I've accepted that.  I only have another 9 years to go before retirement, anyway, and that'll soon disappear.  I hope above everything else that this new job won't carry with it a thing that's dogged me throughout my life in the employ of other people: anxiety.  It's always been there to some degree, which is why I've never wanted the responsibility of management.  Anxiety at the thought of being expected to drop one thing unfinished and concentrate on something else.  Anxiety about being asked to work extra hours.  Anxiety about feeling alienated from my co-workers.  Abject fear of anyone holding the title of 'manager' or 'supervisor', and of being criticised, or caught not doing my job properly (a rarity!).  I hope...

I also get the uncertainty you feel.  Anger at not getting the support you need, coupled with a wondering about whether you actually need any, anyway. I've come this far in life and have managed most situations.  I've been in some pretty dire ones, too - threatened with homelessness, threatened with victimisation - and have somehow gotten through them all.  Yet I know now, looking back, that it's been a real struggle.  When I've told other people about them, it's as if I'm making a mountain out of a molehill.  But what's a molehill to many is a mountain to some. It makes me think that maybe if I'd been diagnosed as a child (or, at least, well before middle-age), things might have turned out better for me.  Maybe I wouldn't have been subjected to things that have made me ill - suicidally so, all too frequently (maybe it's true that what doesn't kill you makes you stronger, and somehow my getting through these things has been my 'therapy').  Again... often these are things that to others would just be part of 'going with the flow' (how I detest that expression, with it's implication of passive acceptance). Some of the support services I have been offered (not many) have been designed to 'correct' me, too - whereas I don't really want 'correcting'.  So I've pretty much given up on the idea of anything.  Hopefully, through this job, I'll get the support I need in another way.  They know I'm on the spectrum, and I think the reasonable adjustments will be given without the need to ask.  I'll see how it goes, and keep ploughing my furrow.  I'll keep on with the book, and keep hoping that, if something happens with it and I can get some financial security for the first time, it'll give me the control over my life that I've always sought.  I'm not alone there, though, either.  There's always the Lotto!

I hope things can work out for you, one way or another.  These are difficult times for you.  But keep talking.  There are many of us here who've been through similar things.  Even if we haven't, though, we can always listen.

Best regards,

Tom

Hi Tom,

Thanks a lot for replying in such a thoughtful way. I had intended to post re: my comments earlier than now but have had difficulties accessing the website over the weekend. Maybe something amiss with my server this end.

I had wanted to say that on reflection I feel that I came across intolerant and would like to apologise. All I needed to do was switch of the 'Notifications' instead of receiving all new posts!

Quite honestly the past few days haven't been great for me - I've been 'upset', fed up, you name it over so many things! Projecting my own problems elsewhere. 

Not saying anything inaccurate nessersarily (sp?) but just wasn't required, or repetitive, or not mindful.

Re: employment - I have first hand experience of the difficulties that can happen. And I became in some ways 'unemployable'. So now am self employed but due to what's going on with my mum, rather how I get consumed / or respond/ cope with it - this has detrimentally affected my own business. So I'm probably about to lose the art gallery very, very soon. Things have been put in motion.

Quite possibly I have some anger at present because feel that I'm not getting the required support. I'm on a wait list for specialist psychological services but despite them knowing I'm in a crisis, or have added stresses, unfortunately it will take a year to be seen via NHS. 

Maybe I don't need to be seen either? And it's just a case of riding this out and drawing on my own skills, resources, strategies. But easier said than done when you can't see the wood for the trees, or have awful anxiety etc

I am though so relieved to have been introduced to this Forum. Reading about others experiences in many different contexts, there's some interesting discussions. It makes me realise that I'm not alone with my experiences. 

Congratulations on your job Tom - I'd read a week or two ago that you'd applied. It sounds perfect and well timed too. Are the 30 hours a week regular? I remember that was your preference. Anyway best of luck, when do you start?

JEP

JEP said:

Hi - I'm a new comer to this forum and started this thread. The first forum I've joined (bar a local one, nothing to do with ASD and gave up quickly). and so far find it extremely helpful, reading through different subjects too. I've only been quiet, not contributing this week or so because I'm under enormous strain. 

I do tend to read most posts via notifications in this 'Adult Autism' section but one poster started to take every thing over. Can't remember his name but some thing like Hendrew - who thought useful to reveal his identity and later send his poems. A moderator, had already advised this was not the area to post. 

I read a few - gave up because, he did not make sense. Other members on the forum were contributing, validating and I began to question them too. 

It started to feel like a place for complex mental health problems. A bit too self consumed and in my opinion unhelpful.

There also appears to be a lot of self diagnosing going on. I think to do so, may distort the reality of ASD and confound further the misinformation. How others perceive ASD. 

I don't have the energy to go into detail here. But on this point alone there are members appearing to dedicate their whole time to this forum. 

How come? Sometimes sound very articulate, have strong views on this that and the other - are they working though?

A job would simply not allow the luxury of replying during the day to posts. 

I'm currently in a highly difficult situation - but I don't feel comfortable to describe more. If this forum focuses on ASD being disability and all those potential challenges. 

Surely instead, this needs to be an informed, sensible discussion to share our challenges. Also the many parts which can go well. 

Currently the forum feels a bit too self indulgent.

Hopefully,at the very least, I won't be sent another poe

Hi again JEP,

I read this post with a sad heart.  I'm sorry you've had some negative experiences.  I take your point about the 'self-consumed', 'self-indulgent' thing.  Autism, though - as I'm sure you know, anyway - translates basically as 'self-absorbed', so it's quite natural for people to focus on themselves and their own problems as a way, perhaps, of demonstrating an understanding of others' problems.

On the working thing... sadly, from statistics based on population samples, it is estimated that of those individuals with autism in the UK:

* 85% are not in full-time employment (including myself now)

* 66% do not work at all

* 60% have to rely on their families for financial support

* 33% have no income at all

I've had more time to spend on here during the last year because I was on leave from work whilst caring for my mother in her final illness.  Since she passed in April, I have been unable to return to work because her loss has taken so much adjusting to.  Coming back onto this forum has helped me tremendously in my recovery.  Today, I have been offered a part-time job (30 hours-per-week) working with autistic people for [removed by moderator].  It's the best outcome I could have expected after what I've just been through.

As for the poetry and other messages you've been bombarded with - I'm sorry that this has happened.  I, too, would feel uncomfortable with it.  I hope to assure you that such things aren't really representative of the supportive and friendly community I've known this to be.

I hope you'll stay with us.

Best regards,

Tom

(This post has been edited by Nellie-Mod because it contained the name of a work place, which could be classed as an identifying detail. This goes against rule 2 of the Community:

"This Community forum is public, so do not post personal or identifying details on it. This includes, but is not limited to, full names, addresses, email addresses and phone numbers."

Thank you for your understanding.)

Thanks, Nellie - and sorry.  It wasn't intentional.

My sister is helping facilitate a big national ASD conference in Auckland NZ this week (Google Altogether Autism). The one of the focuses is on the issue of joblessness in the ASD community.

Big sis is one of the people diagnosing Children and teens in NZ. She spotted SD16s ASD but could not diagnose due to family relationships.

Currently my partner is completing a thorough neuropsychiatric assessment and has been told he doesn't have ASD, that ADHD is correct but that many of his problems are from trauma...

Trust me I know all about assessment.

It's also why I'm clear on this forum that I have DCD which has overlap to ASD and ADHD but has  a different set of issues. My assessment happen by chance but was done by a specialist OT.

The fact I'd got to 30 without killing myself in an accident and had learnt to drive made me remarkably resilient but did not mask the real deficits in both coarse and fine motor function.



Hi QuirkyFriend, I get that ASD can have lots of complications, but surely you can't start stating %'s without a well acknowledged reference point/s. 

QuirkyFriend said:

Sadly around 90% of people in NZ with an ASD diagnosis don't work and I see no evidence to suggest different in the UK

When people post on this forum, it is immediately easy to see if there are confounding problems going on. 

Unpacking all all of that takes time - but to conclude as ASD may not be right. 

ASD can have the appearance of other problems. 

A proper diagnosis is complex over a good number of assessments with psychiatrists, psychologists, and them gathering as much information as possible via family or important people. 

It is highly lengthy. 

Unwise for people to start self diagnosing and joining specifc forums. 

Before you know it, one mis informed person meet another ...

Sadly around 90% of people in NZ with an ASD diagnosis don't work and I see no evidence to suggest different in the UK.

ASD is often complicated by both other neurological conditions and psychiatric comorbid health issues.

Hi - I'm a new comer to this forum and started this thread. The first forum I've joined (bar a local one, nothing to do with ASD and gave up quickly). and so far find it extremely helpful, reading through different subjects too. I've only been quiet, not contributing this week or so because I'm under enormous strain. 

I do tend to read most posts via notifications in this 'Adult Autism' section but one poster started to take every thing over. Can't remember his name but some thing like Hendrew - who thought useful to reveal his identity and later send his poems. A moderator, had already advised this was not the area to post. 

I read a few - gave up because, he did not make sense. Other members on the forum were contributing, validating and I began to question them too. 

It started to feel like a place for complex mental health problems. A bit too self consumed and in my opinion unhelpful.

There also appears to be a lot of self diagnosing going on. I think to do so, may distort the reality of ASD and confound further the misinformation. How others perceive ASD. 

I don't have the energy to go into detail here. But on this point alone there are members appearing to dedicate their whole time to this forum. 

How come? Sometimes sound very articulate, have strong views on this that and the other - are they working though?

A job would simply not allow the luxury of replying during the day to posts. 

I'm currently in a highly difficult situation - but I don't feel comfortable to describe more. If this forum focuses on ASD being disability and all those potential challenges. 

Surely instead, this needs to be an informed, sensible discussion to share our challenges. Also the many parts which can go well. 

Currently the forum feels a bit too self indulgent.

Hopefully,at the very least, I won't be sent another poem.

JEP

Yes and we have no empathy either ! Despite my anguish at my brother I still feel deep down,if he only changed I could forgive and start again,fresh clean and anew. Then I think? Hang on that's wrong surely what he did can never be forgiven? Drives me crazy,even work colleagues who deliberately cause me grief are forgiven,well not forgiven more in my mind,"hi how are you?" I then remind myself"what are you thinking they are bad and therefore I must bear a grudge! I haven't got time to carry all those grudges,takes to much energy,

Me and the wife,a big row breaks out,both yelling,both passionate, then suddenly I say "ok let's stop this now and start as if it never happened ok"  the Response I get is usually "do you realise what you said?" Or "don't pretend that you care?" I quite often treat it as a challenge as I don't like to loose in a war of words, I know how to upset but grow tired and just say "ok well that's come to a point of no return let's rewind and pretend it never happened?".

makes life interesting,take care tom.  Brian.

) ( said:

I still cannot understand why they can be so heartless,

Me either, mate.  But it's how they are.  And we're the ones who are supposed to be self-absorbed.

Hi tom like you I tell it as I see it, I don't think we tend to lie in fact we can be a bit blunt or misjudge the potential harm we can cause.

my younger sister did all the real caring as she was still living there and had two daughters of her own,she also went through hell caring for my dad until he passed,I love her to bits for everything she endured while going out to work evenings and bring up her girls, my brother or more likely his wife decided to take control of the estate as there was no will,we quickly found out they wanted more than a fair division of any assets realised,started talking about potential for redevelopment? Paid an estate agent to boost the potential value even though we had already got two independent valuations for the property as is,something that has to be done by law of probate,

we as a group refused to allow them full control.they then started to pay a solicitor to force us to put it into there control.huge cost to the estate,

it took three years of me being hounded or hunted defending all the tricks they could come up with,very mentally challenging for me, I tried to talk to him as a brother but he could only see money,

we wanted my younger sister to continue to live there,no gain for us,she had paid the mortgage for years she didn't get anything in writing,she did all the helping dad onto the toilet,bathing him putting up with his mood swings when dosed up on morphine etc,did the same with mum, basically the moral thing to do for her,

I no longer have any siblings due to greed by all three saying "well any money is better than nothing"even forgiving him to conclude it all, I sleep well at night knowing everything I did would be as my mother wanted, To me it was never about money and I had none,still haven't.

it was about doing what was right and decent,

greed can destroy family,the same thing happened in my mums family,and to think she didn't write a will in case she upset one of us by leaving to much to just one,

I still cannot understand why they can be so heartless,

take care and I look forward to hearing More about your book,

I know I may be off topic but our thought processes tell a lot about who we are,and maybe why we feel as we do.brian.

Hi Lonewarrior.

Thanks for that reply!  Your experience very closely resembles mine.  I took over the full-time care role in the end.  Like you, I ended up knowing more about her conditions and medication than even some of the specialists.  I wanted to know why the doctor didn't act straight away when she had diarrhoea and send her to hospital, given that she had Stage 5 kidney disease already.  They waited a week.  I had an ambulance crew out EVERY NIGHT during that week, but all her other signs were fine, so they wouldn't take her in.  The doc kept saying 'There's a bug going around.  Leave it to work through.'  It didn't - and she almost died as a result.  But she pulled through, and lived another six months.

My brother was reluctant to let me do the job at first, but his hands were tied with his business and his wife's illness, and he wanted mum to stay in her home where she was happy.  He thought it would be too much for me.  But it's all I wanted to do, and knew - with my training - that I could handle it.  He tried to pull me out in January because mum was upset at losing her independence.  I had to tell him firmly that he only saw snapshots - and that it was too dangerous to leave her alone.  Reluctantly, he backed down - but within a week of that, I actually saved her life twice when she had devastating and sudden hypos that put her beyond helping herself.  Without me there on both occasions - one at night, the other during the day - she'd have died.

Since mum passed, my relationship with my brother has been civil and friendly - but distant.  We only really contact one another by text, once a week.  I'm sure he knows it's because I want nothing more to do with his wife, who has done a lot of damage to me and to my brother's children from his first marriage. I've never really had an acknowledgement from him - verbally, financially (which I'd never accept) or in any other way - as to what I did for our mother.  All I've had is a back-handed comment along the lines that he has friends who know me from my former care job, and they've told him I'm one of the best carers there.  A thanks would suffice.  But no.  He even had the undertaker's bill sent to him so that he could be sure that I'd settled - as I promised to - one part of the arrangement that he didn't agree with, until I said I'd pay for it separately.  It hurts that he felt he couldn't trust me on that - but I think his wife was behind it, if I'm honest.  She pulls all his strings.

Yes, I will get on with the book.  Things are starting to turn around for me already, as I'll mention in another post.  It's still early days, but I feel that I can start to move forwards.

Best regards,

Tom

Hi tom what you have said and the writing it in a book is in my mind what you need to do in order to get through the whole mother time issue! I mean that in a really nice way,when my mother got very ill I was the only sibling that saw what was actually happening my brother and two sisters tried to believe it was nothing serious! I spoke to her GPs and was left under no illusion that my mother wouldn't get better and that it was just a matter of time, maybe selfish of me but I focused one hundred percent on her,even my wife and two young daughters came second,work was insignificant and if mum needed me I was there, like you I spent as much time with her as possible,every weekday evening straight after work I was there until often after midnight. I researched every tablet she was on,queried when they suddenly changed any, but I could see they were using drugs to try and save a heart that was at it's end.she had highlood pressure most of her life.

I could not make my siblings understand the reality of what was staring them in the face,fact one mother is very ill ,fact two she will not get better, fact three she will die soon.

i was not sad during her illness just angry that doctors had given up on her,not worthy of triple heart bypass,just keep juggling her medication.

The day she died we all went back to the family home,lots of cuddling and crying eventually talking about the good times,not for me though I remained silent and showed no emotion? I think my brain had gone into information overload, lots of why didn't they do this or that? Why increase one tablet knowing it would cause fluid build up in the lungs, eventually I walked down the garden and sat down,suddenly I felt all my mothers pain and suffering, I became so angry, I basically had the biggest melt down in my life,my siblings came down to comfort me which just made me more angry,I told them to go away as I was dealing with things in MY WAY.

after several hours by myself I suddenly took a deep breath and got on with going home to tell my wife and kids the sad news,they already knew but I couldn't see any pain in them so I over reacted, I was angry at myself for not leaving mum long enough to fetch them,

I still have tears now and then,mostly at the thought my mum isn't there to share my troubles and good times with.

anyway that's me and how I dealt with bereavement.so very different to my siblings,

Sounds interesting. 

My usual mediums are fiction and poetry - but this is an autobiographical book.  It's based on those months I spent with mum, starting with when she almost died in hospital, through the decision to come home and for me to care for her, up until her final moments and the aftermath.  It'll also be about our history and closeness - about my growing up as a (then undiagnosed) Aspie, and our relationship in the context of that diagnosis.   I'd already written about 40k words whilst I was with mum - but it reached a point where I couldn't go on because it was getting painful.  Plus, I couldn't finish it then... and it seemed at the time that, by continuing with it, I was somehow hastening that inevitable conclusion.  Of necessity, family will come into it. I'd been 'prettying it up' on that front - but I think I need to be truthful about some things.  It may upset some people.  But anything else wouldn't be right.  The people who will be upset are people I couldn't really care less about, anyway.  And perhaps they need to be upset in order to realise a few things.  Not that they'd read it.

I wrote a novel a few years ago.  It was published, but disappeared without trace.  At the time, I had an agent who rejected it, but liked my writing and asked to see anything else I did.  So I'll try them.  But if nothing happens, it's something I still need to do.  It's a tribute to her if nothing else.

My usual mediums are fiction and poetry - but this is an autobiographical book.  It's based on those months I spent with mum, starting with when she almost died in hospital, through the decision to come home and for me to care for her, up until her final moments and the aftermath.  It'll also be about our history and closeness - about my growing up as a (then undiagnosed) Aspie, and our relationship in the context of that diagnosis.   I'd already written about 40k words whilst I was with mum - but it reached a point where I couldn't go on because it was getting painful.  Plus, I couldn't finish it then... and it seemed at the time that, by continuing with it, I was somehow hastening that inevitable conclusion.  Of necessity, family will come into it. I'd been 'prettying it up' on that front - but I think I need to be truthful about some things.  It may upset some people.  But anything else wouldn't be right.  The people who will be upset are people I couldn't really care less about, anyway.  And perhaps they need to be upset in order to realise a few things.  Not that they'd read it.

I wrote a novel a few years ago.  It was published, but disappeared without trace.  At the time, I had an agent who rejected it, but liked my writing and asked to see anything else I did.  So I'll try them.  But if nothing happens, it's something I still need to do.  It's a tribute to her if nothing else.

Hi JEP,

I'm wondering if it does perhaps not really matter so much whether someone's diagnosis is "real" or someone doesn't have a diagnosis at all? I've got a professional one and can certainly see traits but don't quite agree that the way I am should be called a "disorder" or "disability". I had been hoping  that the people doing the assessment would see it that way too and when they didn't I got quite upset. But then reading a bit on here there are plenty of people feeling and behaving in ways I can totally identify with, including what you said yesterday: "I had wanted to say that on reflection I feel that I came across intolerant and would like to apologise. All I needed to do was switch of the 'Notifications' instead of receiving all new posts!" - this could be so much me... everything about it. I'm finding it helpful to be able to identify with someone somewhere when it comes to things where everybody I know in real life seems to feel and behave different from myself. Maybe try seeing it like that? I mean, you will be quite different from others who do have some sort of autism without doubt in many ways, so their advice/comments on something you struggle with may not be more useful to you than what someone says who is perhaps not really quite that autistic but feels the way you do about a specific issue. No matter who says something, you'll always have to decide if that works for you/applies to you or not.

I can see why you find the poems thing difficult, guess I would too, partly also because I have this lack of lacking empathy that seems to disqualify most on here from being proper Aspies (yourself included). If it hasn't stopped, have you told him this and asked to stop it, just plain and direct? Can't imagine he's doing that intentionally.

Hope you can get something out of this forum, more positives than negatives.

Hi tom thank you for telling about your experiences,Although we are all different there's always something that helps. I truly ope your new job goes ok for you.

Dear jep I really feel for you and hope that sharing your issues on here will somehow help in your situation.one thing is certain if we could help we would.each of us are here to try and understand who we might be,the quest continues. I hope by reading what tom has gone through will give others courage to keep going knowing that despite all the negatives life can bring there is always a better day ahead. Take care Brian.

JEP said:

Thanks a lot for replying in such a thoughtful way. I had intended to post re: my comments earlier than now but have had difficulties accessing the website over the weekend. Maybe something amiss with my server this end.

I had wanted to say that on reflection I feel that I came across intolerant and would like to apologise. All I needed to do was switch of the 'Notifications' instead of receiving all new posts!

Quite honestly the past few days haven't been great for me - I've been 'upset', fed up, you name it over so many things! Projecting my own problems elsewhere. 

Not saying anything inaccurate nessersarily (sp?) but just wasn't required, or repetitive, or not mindful.

Re: employment - I have first hand experience of the difficulties that can happen. And I became in some ways 'unemployable'. So now am self employed but due to what's going on with my mum, rather how I get consumed / or respond/ cope with it - this has detrimentally affected my own business. So I'm probably about to lose the art gallery very, very soon. Things have been put in motion.

Quite possibly I have some anger at present because feel that I'm not getting the required support. I'm on a wait list for specialist psychological services but despite them knowing I'm in a crisis, or have added stresses, unfortunately it will take a year to be seen via NHS. 

Maybe I don't need to be seen either? And it's just a case of riding this out and drawing on my own skills, resources, strategies. But easier said than done when you can't see the wood for the trees, or have awful anxiety etc

I am though so relieved to have been introduced to this Forum. Reading about others experiences in many different contexts, there's some interesting discussions. It makes me realise that I'm not alone with my experiences. 

Congratulations on your job Tom - I'd read a week or two ago that you'd applied. It sounds perfect and well timed too. Are the 30 hours a week regular? I remember that was your preference. Anyway best of luck, when do you start?

Hi JEP,

I think there were issues with the site at the weekend.  I couldn't get access on Saturday afternoon or Sunday.

No need to apologise.  I can understand how you must have been feeling (empathy? ).  At times like this, I think - at least, based on my own experiences these past few weeks - that it's very difficult to pin down emotional responses.  Mine have been all over the place, swinging from anger to guilt to sadness to a kind of equilibrium again.  All part of the grieving process - which I think, in some ways, you're experiencing as well.  One of mum's care workers said to me that I really began grieving when mum first became ill and it was evident that she would never fully recover.  Once I moved in with her to nurse her, I was experiencing at first hand that gradual deterioration - the loss of mobility, the loss of memory, the advancing disorders, the low moods and tears.  So maybe that's right - I was grieving for the person I saw very slowly fading out of her life, and out of mine.  It's traumatic.  And any annoyance becomes a major irritation.  That's why I think being bombarded with unwanted messages would have made me angry and frustrated, too.

I'm sorry to read that you may lose the gallery, and I take your point about being - or feeling, at least - 'unemployable'.   I've had 27 jobs in my 40 years of work - 28th coming up!  I never found anything that I really liked or felt fulfilled in, and spent a long time in a kind of wilderness - just going through the motions of work simply to pay the bills, and wondering if I would ever find a 'calling', or something that at least gave life meaning.  That's the lot for many people, of course.  But for me, it led to a lot of disruption.  It pretty much destroyed my one marriage.  I couldn't find any satisfaction in anything - not even in the love of another person.  When I took an abrupt left-turn after my divorce and went into care work for the first time - I think that's when I finally found something that, at the very least, meant something to me.  In those 12 years, though - interrupted by a brief period of self-employment - I've still moved around a lot.  This new job (which I start as soon as my DBS and references are in, so maybe early August) will be my sixth in care - though the first in which I can specialise in working with autistic people.  Again, I grew dissatisfied - with working conditions, with the attitude of co-workers, with often feeling exploited.  Care isn't something anyone goes into for the money, either.  Long hours, shift-work, exhaustion... and the constant underlying sense that at any time you could be called upon to work extra hours to cover for absence.  Sick absence was frequent, too - for the reasons given.  I knew people who'd come in to work on Monday morning and not go home until Wednesday night - just tagging shift onto shift.  It's probably not legal, but it was kind of expected.  And people did it because they needed the extra cash.  Often they couldn't get by on normal hours.  I suppose I'm lucky because I prefer to live an austere, minimalist life.  I work to live - I don't live to work.  But I don't get any luxuries, and holidays are always spent at home.  Good job I live within 200 yards of a beach, I guess!

I hope this new job will be better.  They're a good employer, and offer good benefits which you don't always get in private sector care.  It should give me more control, too.  It's just four days, and office hours.  And, as I said, it's specialising in autism.  I suppose if I'm 'employable' in any sense, it's in this one.  It plays to many of my strengths.  If it hadn't come along, though - I'd have been looking at a cleaning job or a driving job, something like that.  Just something, again, to pay the bills - and maybe keep people off my back and give me a degree of autonomy.  I don't want a career.  I'm not seeking advancement.  Unless I make money out of writing at some stage, I'm never likely to shift from the economic status I've held all of my working life.  I've accepted that.  I only have another 9 years to go before retirement, anyway, and that'll soon disappear.  I hope above everything else that this new job won't carry with it a thing that's dogged me throughout my life in the employ of other people: anxiety.  It's always been there to some degree, which is why I've never wanted the responsibility of management.  Anxiety at the thought of being expected to drop one thing unfinished and concentrate on something else.  Anxiety about being asked to work extra hours.  Anxiety about feeling alienated from my co-workers.  Abject fear of anyone holding the title of 'manager' or 'supervisor', and of being criticised, or caught not doing my job properly (a rarity!).  I hope...

I also get the uncertainty you feel.  Anger at not getting the support you need, coupled with a wondering about whether you actually need any, anyway. I've come this far in life and have managed most situations.  I've been in some pretty dire ones, too - threatened with homelessness, threatened with victimisation - and have somehow gotten through them all.  Yet I know now, looking back, that it's been a real struggle.  When I've told other people about them, it's as if I'm making a mountain out of a molehill.  But what's a molehill to many is a mountain to some. It makes me think that maybe if I'd been diagnosed as a child (or, at least, well before middle-age), things might have turned out better for me.  Maybe I wouldn't have been subjected to things that have made me ill - suicidally so, all too frequently (maybe it's true that what doesn't kill you makes you stronger, and somehow my getting through these things has been my 'therapy').  Again... often these are things that to others would just be part of 'going with the flow' (how I detest that expression, with it's implication of passive acceptance). Some of the support services I have been offered (not many) have been designed to 'correct' me, too - whereas I don't really want 'correcting'.  So I've pretty much given up on the idea of anything.  Hopefully, through this job, I'll get the support I need in another way.  They know I'm on the spectrum, and I think the reasonable adjustments will be given without the need to ask.  I'll see how it goes, and keep ploughing my furrow.  I'll keep on with the book, and keep hoping that, if something happens with it and I can get some financial security for the first time, it'll give me the control over my life that I've always sought.  I'm not alone there, though, either.  There's always the Lotto!

I hope things can work out for you, one way or another.  These are difficult times for you.  But keep talking.  There are many of us here who've been through similar things.  Even if we haven't, though, we can always listen.

Best regards,

Tom

Hi Tom,

Thanks a lot for replying in such a thoughtful way. I had intended to post re: my comments earlier than now but have had difficulties accessing the website over the weekend. Maybe something amiss with my server this end.

I had wanted to say that on reflection I feel that I came across intolerant and would like to apologise. All I needed to do was switch of the 'Notifications' instead of receiving all new posts!

Quite honestly the past few days haven't been great for me - I've been 'upset', fed up, you name it over so many things! Projecting my own problems elsewhere. 

Not saying anything inaccurate nessersarily (sp?) but just wasn't required, or repetitive, or not mindful.

Re: employment - I have first hand experience of the difficulties that can happen. And I became in some ways 'unemployable'. So now am self employed but due to what's going on with my mum, rather how I get consumed / or respond/ cope with it - this has detrimentally affected my own business. So I'm probably about to lose the art gallery very, very soon. Things have been put in motion.

Quite possibly I have some anger at present because feel that I'm not getting the required support. I'm on a wait list for specialist psychological services but despite them knowing I'm in a crisis, or have added stresses, unfortunately it will take a year to be seen via NHS. 

Maybe I don't need to be seen either? And it's just a case of riding this out and drawing on my own skills, resources, strategies. But easier said than done when you can't see the wood for the trees, or have awful anxiety etc

I am though so relieved to have been introduced to this Forum. Reading about others experiences in many different contexts, there's some interesting discussions. It makes me realise that I'm not alone with my experiences. 

Congratulations on your job Tom - I'd read a week or two ago that you'd applied. It sounds perfect and well timed too. Are the 30 hours a week regular? I remember that was your preference. Anyway best of luck, when do you start?

JEP

JEP said:

Hi - I'm a new comer to this forum and started this thread. The first forum I've joined (bar a local one, nothing to do with ASD and gave up quickly). and so far find it extremely helpful, reading through different subjects too. I've only been quiet, not contributing this week or so because I'm under enormous strain. 

I do tend to read most posts via notifications in this 'Adult Autism' section but one poster started to take every thing over. Can't remember his name but some thing like Hendrew - who thought useful to reveal his identity and later send his poems. A moderator, had already advised this was not the area to post. 

I read a few - gave up because, he did not make sense. Other members on the forum were contributing, validating and I began to question them too. 

It started to feel like a place for complex mental health problems. A bit too self consumed and in my opinion unhelpful.

There also appears to be a lot of self diagnosing going on. I think to do so, may distort the reality of ASD and confound further the misinformation. How others perceive ASD. 

I don't have the energy to go into detail here. But on this point alone there are members appearing to dedicate their whole time to this forum. 

How come? Sometimes sound very articulate, have strong views on this that and the other - are they working though?

A job would simply not allow the luxury of replying during the day to posts. 

I'm currently in a highly difficult situation - but I don't feel comfortable to describe more. If this forum focuses on ASD being disability and all those potential challenges. 

Surely instead, this needs to be an informed, sensible discussion to share our challenges. Also the many parts which can go well. 

Currently the forum feels a bit too self indulgent.

Hopefully,at the very least, I won't be sent another poe

Hi again JEP,

I read this post with a sad heart.  I'm sorry you've had some negative experiences.  I take your point about the 'self-consumed', 'self-indulgent' thing.  Autism, though - as I'm sure you know, anyway - translates basically as 'self-absorbed', so it's quite natural for people to focus on themselves and their own problems as a way, perhaps, of demonstrating an understanding of others' problems.

On the working thing... sadly, from statistics based on population samples, it is estimated that of those individuals with autism in the UK:

* 85% are not in full-time employment (including myself now)

* 66% do not work at all

* 60% have to rely on their families for financial support

* 33% have no income at all

I've had more time to spend on here during the last year because I was on leave from work whilst caring for my mother in her final illness.  Since she passed in April, I have been unable to return to work because her loss has taken so much adjusting to.  Coming back onto this forum has helped me tremendously in my recovery.  Today, I have been offered a part-time job (30 hours-per-week) working with autistic people for [removed by moderator].  It's the best outcome I could have expected after what I've just been through.

As for the poetry and other messages you've been bombarded with - I'm sorry that this has happened.  I, too, would feel uncomfortable with it.  I hope to assure you that such things aren't really representative of the supportive and friendly community I've known this to be.

I hope you'll stay with us.

Best regards,

Tom

(This post has been edited by Nellie-Mod because it contained the name of a work place, which could be classed as an identifying detail. This goes against rule 2 of the Community:

"This Community forum is public, so do not post personal or identifying details on it. This includes, but is not limited to, full names, addresses, email addresses and phone numbers."

Thank you for your understanding.)

Thanks, Nellie - and sorry.  It wasn't intentional.

My sister is helping facilitate a big national ASD conference in Auckland NZ this week (Google Altogether Autism). The one of the focuses is on the issue of joblessness in the ASD community.

Big sis is one of the people diagnosing Children and teens in NZ. She spotted SD16s ASD but could not diagnose due to family relationships.

Currently my partner is completing a thorough neuropsychiatric assessment and has been told he doesn't have ASD, that ADHD is correct but that many of his problems are from trauma...

Trust me I know all about assessment.

It's also why I'm clear on this forum that I have DCD which has overlap to ASD and ADHD but has  a different set of issues. My assessment happen by chance but was done by a specialist OT.

The fact I'd got to 30 without killing myself in an accident and had learnt to drive made me remarkably resilient but did not mask the real deficits in both coarse and fine motor function.



Hi QuirkyFriend, I get that ASD can have lots of complications, but surely you can't start stating %'s without a well acknowledged reference point/s. 

QuirkyFriend said:

Sadly around 90% of people in NZ with an ASD diagnosis don't work and I see no evidence to suggest different in the UK

When people post on this forum, it is immediately easy to see if there are confounding problems going on. 

Unpacking all all of that takes time - but to conclude as ASD may not be right. 

ASD can have the appearance of other problems. 

A proper diagnosis is complex over a good number of assessments with psychiatrists, psychologists, and them gathering as much information as possible via family or important people. 

It is highly lengthy. 

Unwise for people to start self diagnosing and joining specifc forums. 

Before you know it, one mis informed person meet another ...

Sadly around 90% of people in NZ with an ASD diagnosis don't work and I see no evidence to suggest different in the UK.

ASD is often complicated by both other neurological conditions and psychiatric comorbid health issues.

Hi - I'm a new comer to this forum and started this thread. The first forum I've joined (bar a local one, nothing to do with ASD and gave up quickly). and so far find it extremely helpful, reading through different subjects too. I've only been quiet, not contributing this week or so because I'm under enormous strain. 

I do tend to read most posts via notifications in this 'Adult Autism' section but one poster started to take every thing over. Can't remember his name but some thing like Hendrew - who thought useful to reveal his identity and later send his poems. A moderator, had already advised this was not the area to post. 

I read a few - gave up because, he did not make sense. Other members on the forum were contributing, validating and I began to question them too. 

It started to feel like a place for complex mental health problems. A bit too self consumed and in my opinion unhelpful.

There also appears to be a lot of self diagnosing going on. I think to do so, may distort the reality of ASD and confound further the misinformation. How others perceive ASD. 

I don't have the energy to go into detail here. But on this point alone there are members appearing to dedicate their whole time to this forum. 

How come? Sometimes sound very articulate, have strong views on this that and the other - are they working though?

A job would simply not allow the luxury of replying during the day to posts. 

I'm currently in a highly difficult situation - but I don't feel comfortable to describe more. If this forum focuses on ASD being disability and all those potential challenges. 

Surely instead, this needs to be an informed, sensible discussion to share our challenges. Also the many parts which can go well. 

Currently the forum feels a bit too self indulgent.

Hopefully,at the very least, I won't be sent another poem.

JEP

Yes and we have no empathy either ! Despite my anguish at my brother I still feel deep down,if he only changed I could forgive and start again,fresh clean and anew. Then I think? Hang on that's wrong surely what he did can never be forgiven? Drives me crazy,even work colleagues who deliberately cause me grief are forgiven,well not forgiven more in my mind,"hi how are you?" I then remind myself"what are you thinking they are bad and therefore I must bear a grudge! I haven't got time to carry all those grudges,takes to much energy,

Me and the wife,a big row breaks out,both yelling,both passionate, then suddenly I say "ok let's stop this now and start as if it never happened ok"  the Response I get is usually "do you realise what you said?" Or "don't pretend that you care?" I quite often treat it as a challenge as I don't like to loose in a war of words, I know how to upset but grow tired and just say "ok well that's come to a point of no return let's rewind and pretend it never happened?".

makes life interesting,take care tom.  Brian.

) ( said:

I still cannot understand why they can be so heartless,

Me either, mate.  But it's how they are.  And we're the ones who are supposed to be self-absorbed.

Hi tom like you I tell it as I see it, I don't think we tend to lie in fact we can be a bit blunt or misjudge the potential harm we can cause.

my younger sister did all the real caring as she was still living there and had two daughters of her own,she also went through hell caring for my dad until he passed,I love her to bits for everything she endured while going out to work evenings and bring up her girls, my brother or more likely his wife decided to take control of the estate as there was no will,we quickly found out they wanted more than a fair division of any assets realised,started talking about potential for redevelopment? Paid an estate agent to boost the potential value even though we had already got two independent valuations for the property as is,something that has to be done by law of probate,

we as a group refused to allow them full control.they then started to pay a solicitor to force us to put it into there control.huge cost to the estate,

it took three years of me being hounded or hunted defending all the tricks they could come up with,very mentally challenging for me, I tried to talk to him as a brother but he could only see money,

we wanted my younger sister to continue to live there,no gain for us,she had paid the mortgage for years she didn't get anything in writing,she did all the helping dad onto the toilet,bathing him putting up with his mood swings when dosed up on morphine etc,did the same with mum, basically the moral thing to do for her,

I no longer have any siblings due to greed by all three saying "well any money is better than nothing"even forgiving him to conclude it all, I sleep well at night knowing everything I did would be as my mother wanted, To me it was never about money and I had none,still haven't.

it was about doing what was right and decent,

greed can destroy family,the same thing happened in my mums family,and to think she didn't write a will in case she upset one of us by leaving to much to just one,

I still cannot understand why they can be so heartless,

take care and I look forward to hearing More about your book,

I know I may be off topic but our thought processes tell a lot about who we are,and maybe why we feel as we do.brian.

Hi Lonewarrior.

Thanks for that reply!  Your experience very closely resembles mine.  I took over the full-time care role in the end.  Like you, I ended up knowing more about her conditions and medication than even some of the specialists.  I wanted to know why the doctor didn't act straight away when she had diarrhoea and send her to hospital, given that she had Stage 5 kidney disease already.  They waited a week.  I had an ambulance crew out EVERY NIGHT during that week, but all her other signs were fine, so they wouldn't take her in.  The doc kept saying 'There's a bug going around.  Leave it to work through.'  It didn't - and she almost died as a result.  But she pulled through, and lived another six months.

My brother was reluctant to let me do the job at first, but his hands were tied with his business and his wife's illness, and he wanted mum to stay in her home where she was happy.  He thought it would be too much for me.  But it's all I wanted to do, and knew - with my training - that I could handle it.  He tried to pull me out in January because mum was upset at losing her independence.  I had to tell him firmly that he only saw snapshots - and that it was too dangerous to leave her alone.  Reluctantly, he backed down - but within a week of that, I actually saved her life twice when she had devastating and sudden hypos that put her beyond helping herself.  Without me there on both occasions - one at night, the other during the day - she'd have died.

Since mum passed, my relationship with my brother has been civil and friendly - but distant.  We only really contact one another by text, once a week.  I'm sure he knows it's because I want nothing more to do with his wife, who has done a lot of damage to me and to my brother's children from his first marriage. I've never really had an acknowledgement from him - verbally, financially (which I'd never accept) or in any other way - as to what I did for our mother.  All I've had is a back-handed comment along the lines that he has friends who know me from my former care job, and they've told him I'm one of the best carers there.  A thanks would suffice.  But no.  He even had the undertaker's bill sent to him so that he could be sure that I'd settled - as I promised to - one part of the arrangement that he didn't agree with, until I said I'd pay for it separately.  It hurts that he felt he couldn't trust me on that - but I think his wife was behind it, if I'm honest.  She pulls all his strings.

Yes, I will get on with the book.  Things are starting to turn around for me already, as I'll mention in another post.  It's still early days, but I feel that I can start to move forwards.

Best regards,

Tom

Hi tom what you have said and the writing it in a book is in my mind what you need to do in order to get through the whole mother time issue! I mean that in a really nice way,when my mother got very ill I was the only sibling that saw what was actually happening my brother and two sisters tried to believe it was nothing serious! I spoke to her GPs and was left under no illusion that my mother wouldn't get better and that it was just a matter of time, maybe selfish of me but I focused one hundred percent on her,even my wife and two young daughters came second,work was insignificant and if mum needed me I was there, like you I spent as much time with her as possible,every weekday evening straight after work I was there until often after midnight. I researched every tablet she was on,queried when they suddenly changed any, but I could see they were using drugs to try and save a heart that was at it's end.she had highlood pressure most of her life.

I could not make my siblings understand the reality of what was staring them in the face,fact one mother is very ill ,fact two she will not get better, fact three she will die soon.

i was not sad during her illness just angry that doctors had given up on her,not worthy of triple heart bypass,just keep juggling her medication.

The day she died we all went back to the family home,lots of cuddling and crying eventually talking about the good times,not for me though I remained silent and showed no emotion? I think my brain had gone into information overload, lots of why didn't they do this or that? Why increase one tablet knowing it would cause fluid build up in the lungs, eventually I walked down the garden and sat down,suddenly I felt all my mothers pain and suffering, I became so angry, I basically had the biggest melt down in my life,my siblings came down to comfort me which just made me more angry,I told them to go away as I was dealing with things in MY WAY.

after several hours by myself I suddenly took a deep breath and got on with going home to tell my wife and kids the sad news,they already knew but I couldn't see any pain in them so I over reacted, I was angry at myself for not leaving mum long enough to fetch them,

I still have tears now and then,mostly at the thought my mum isn't there to share my troubles and good times with.

anyway that's me and how I dealt with bereavement.so very different to my siblings,

Sounds interesting.