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Support for Carers, Friends and Parents

I had a lie in this morning

(35 posts) (10 voices)

Started 1 year ago by bingo
Latest reply from Tess
This topic is Not a support question

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bingo
Member

Someone I know asked me to post this on the forum.

It is a very sad story and I have no reason to doubt it. I have posted it here exactly as it was sent to me except that I have changed the spelling of a few words to satisfy the moderators, but I am sure you will understand the meaning.

The person has asked me for confidentiality therefore I will not give names or any other personal details.

Since I recieved this message the person has not been seen or heard of and I don't know what has happened to him.

Bingo

I had a lie in today. Yep, didn’t get up until 7.00am. Well it is Sunday and I get up at 6.00am six days a week for work so I thought I deserved a lie in. Unfortunately nobody else thought I deserved it. There was just so much to do – vast amounts of washing left behind as it had seen the light of day which “contaminated” it. Much of it had not been worn or used in any way. Huge piles of rubbish, mostly cleaning materials touched once and then thrown away, or to be more correct, left lying around for me to clear away because it was “contaminated. Then there was the general skivvying and running around after people who “can’t” or won’t touch anything or do anything for themselves. Much of this work is cleaning away the vile mess that others leave. Why is it that the smallest thing, usually nothing more that a fleeting thought is dirty and contaminated preventing people even touching it when those same people can live in filth – filth that they have created?

That generally was the pattern for the whole day, the same as every day off and time at home. At about 8.45pm after cooking dinner, clearing away and washing up I have finished – or so I think – bally unlikely, I expect they will want a cup of tea or some other trivial task doing soon, something that they are quite capable of doing themselves but oh no “I can’t touch that” they say so muggins here has to do it.

The final straw came when I had just finished the washing up. There they were in the sitting room in front of the telly waiting for a cup of tea and they said “You just missed something on the telly you really would have liked to have seen just now while you were doing the washing up”. Let me remind you this washing up was the washing up from the meal that I had just cooked and they had just eaten, not to mention the fact that yesterday I had done the shopping, brought it home and put it away.

That was my day, my day off from a full time job remember, working from dawn to dusk - and beyond. The only real difference between this day and every other day is that I didn’t have to go to work (that is working for an employer to earn money to live, sorry, survive) and even on those days I still have to come home cook and generally skivvy. There is no time for me as all of the time goes on so called “caring”. There is just no break from it, no holidays, no day away from it, no hobby and even time to read a book is out of the question and I no longer have any friends. OK, so it is not their fault they have OCD but it’s not mine either and if I could have it for them I would.

So what do I do next? Well I could go to bed as I am tired and I have to get up early to go to work to earn some money. But most of the money I earn is wasted buying huge quantities of cleaning materials and other stuff just to be thrown away unused so why should I bother. What is it with OCDers that a bottle of disinfectant/soap/cleaning stuff has to be thrown away after just one dose of stuff has been used with the 90% left in the bottle being tipped down the drain? I may as well just give my hard earned money to the shop keepers and manufacturers. At least that way it would be better for the environment. And what is it with you OCDers that you won’t try any medication, CBT or other treatment that may help? Come on; give me an answer.

You OCDers are so fugging selfish. With you it’s all me, me, me, self, self, self. I can’t, this, I can’t that and I have no intention of helping myself and the world must change to suit me. Do you really believe that the world must change to suit you? And which one of you will the world change for? And do you really have a care for others even those who care for you?

I have my own health problems but does that count for anything? Not fugging likely. After some recent medical tests and visits to the hospital consultant I would have hoped that one of those I spend my waking time caring and skivvying for would have at least had the concern to ask how I was and what the outcome of the tests were. But did they? All I got because I was not available to drive one of them while I was at the hospital was “I had to walk back home and it started to rain”. So FUGGING what, take an umbrella – or is it contaminated? I’ve had enough, after years of slogging on alone and being taken for granted the burden is more than I can take.

My advice to anyone who finds themselves in a similar situation is RUN, RUN, RUN. Run as fast and as far from it as you can before it destroys your life as it has destroyed mine.

I have three choices now:
Carry on this miserable existence like a slave,

Run and get a life of my own,

Find a length of rope.

Mon Jan 17 2011 20:45:21 #
Truddles
Member

And what is it with you OCDers that you won’t try any medication, CBT or other treatment that may help?

Granted there are a few that wont try any treatment but for many of us we just can’t access treatment despite pleading for it.

You OCDers are so fugging selfish. With you it’s all me, me, me, self, self, self. I can’t, this, I can’t that and I have no intention of helping myself and the world must change to suit me.

I'm sorry but I take exception to that we are not all selfish and it is wrong to tar us all with the same brush. I myself despite having really bad OCD took on the job of looking after my virtually bed bound mother when my father passed away. I was on the go 24/7 getting up many times in the night to her despite not only having bad OCD but numerous serious physical problems and for over a year did it without any help. Yes, caring can be a pretty thankless task at times. If someone isn’t mobile because of a physical condition there are many things that you have to do, but anything that I knew my mother was capable of doing I encouraged her to do it, only to have the family on one of their rare visits tell her that she didn’t have to do it and that I should be doing it.
The weeks prior to her death were extremely difficult and I ended up with a break down and my OCD became totally out of control. Then when I needed care I didn’t get any.
Nobody runs around after me with my OCD and neither would I want them to, I just have to struggle on as best I can however long it takes me to accomplish the task and sometimes because of my physical problems it can take and for ever to do the job. The only help that I get is because of my epilepsy and even then it’s only in a supervisory capacity in order to keep me safe because of the seizures. I still have to do the task myself. I wouldn’t dream of getting someone to run around after me.
There are also many members on the forum with really bad OCD that are raising a family despite finding it a real struggle.
The harsh reality is that the more that you do for someone with OCD the more it reinforces their OCD, it’s not easy but they have to be made to take some responsibility for themselves and those around them.
Trudy

Mon Jan 17 2011 21:51:18 #
jo
Member

Well said Trudy.
I feel sad for the person who wrote that passage, and it does appear that they were at the end of their tether and in an unbearable situation. Perhaps exhausted and depressed also likely. It is not an ideal situation that someone does all for someone else, and as Trudy says that is not an ideal situation.
However I do not feel that is typical of all people with OCD and feel it is one persons opinion in a difficult situation.
No one looks after me, I look after myself, I work full time and have a part time job also. And I struggle at times, but I get on OCD or not. And so do many of us.
We are not all me me me, perhaps that persons experience was negative, but it is not necessarily typical.
But I hope that they are safe wherever they are and it is good to hear different views on OCD and different perspectives and experiences of it.
Jo

Mon Jan 17 2011 22:03:38 #
Unregistered

I don't want anyone to ever feel like that about me. I do my best to make sure my family are not involved in my OCD, i.e. I don't make them enable me in my obsessions and rituals. If I want something cleaned, I will do it myself. If I feel my actions are adversely affecting others, I feel terrible. I'm not selfish. I deal with my condition largely on my own, I suffer in silence a lot. Nobody else carries my burden.

Mon Jan 17 2011 23:40:32 #
immy
Member

I hope this person is reading these replies. I can fully identify with your situation. Of course not all OCDers are like that but when the one(s) you live with are that does not help much.
The question of how they can spend so long worrying about non existent dirt and yet live in an untidy filthy house is beyond me. It is so frustrating.
My husband had a very gradual onset of OCD and by the time I suspected that he had OCD and found out about it I was already doing so much for him.I know that I should not do things for him but no one has told me how I am to stop doing the things I already do when he refuses to accept that it is for his own good.
I do not know your situation but there are things you can do. Please log on and reply. You do not need to reveal your identity at all.
I lost my job due to ill health and it is taking me a long time to recover as living with my partner full time is not good as you will know. I am recovering though and I am doing activities outside the house which build me up. Also I have time for friends.I have managed to insist that I have time for myself and that when I am out he has to do a few limited things for himself.If you are still at home and working then your day off must be a day off go out. Even better don't go home the night before and have 2 nights away.Don't wash their clothes until they have run out just have some boxes you can dump everything in to tidy the place. And don't wash more often than you want to. Keep some cleaning materials locked up.
It is horrible but if you are off sick and you are short of money then they may go to see the dr to get benefit. If you do anything that I suggest they are going to be very angry and you will have lots of scenes you cannot cope with them if you are working. Take time off. You will need to find as much support as possible. Ask for support from your dr you should be seeing a Community Psychiatric Nurse for your own health. Try to get in touch with old friends and message me.
PLEASE GET IN TOUCH NOW I AM VERY WORRIED ABOUT YOU Immy

Tue Jan 18 2011 8:02:13 #
Tess
Member

My word Bingo, this letter has certainly raised some emotions and so I will only add a brief five pennorth but I have two points to make.
Firtly, the "so called" carer as he/she describes themselves has absolutely no conception whatsoever about what it is like to suffer from OCD and needs to be reminded that the World Health Organisation has listed the condition in the top ten most disabling conditions to afflict mankind - and this includes all phycical disabilities. The fact that it is unseen and misunderstood just adds to the difficulties which sufferers have to face 24/7.
Secondly, I feel this carer has made a rod for their own back. He/she is providing a secure safe environment which will make daily life easier for the OCDers, but it will not help in the long term because it will foster dependency and loss of independence and sooner or later the care which they have come to depend on will no longer be there.
So the entire caring regime needs a radical shake up to enable the carer to obtain respite and the OCDers to learn better ways of managing their condition, the present system is helping no-one. it will be a painful transition but it is necessary for everyone's long term well being.

Tue Jan 18 2011 11:26:55 #
Unregistered

Bingo, I began by seething at the rant by ‘Muggins’, because naturally knowing the sheer agony of living in fear with this condition, my heart goes out to the OCD sufferer.

His angry tirade reminded me of the words of someone I never met, referring to someone I also never knew, and the plight of these two strangers reduced me to tears. I was hearing of a very similar situation to the above. A friend with severe OCD was driving her husband to despair. The strangers involved were one of her husband’s work colleagues and this person’s mother. The friend’s husband was off loading his woes to the colleague. The colleague replied ‘I had a mother like that, I ran as fast as I good in the opposite direction as soon as I was able. I suggest you do the same.’ My friend’s husband took heed of the colleague’s words and left that night. I know what it takes to be a mother with OCD and this young man’s comments devastated me.

Let’s get one thing straight. As Tess has already said, OCD is one of the very worst conditions known to man. It probably is the very worst when it comes to alienating those around us. It destroys marriages and even parent/child relationships. It causes extreme pain to all concerned. However, an OCD sufferer can be in torment continuously. This pain, as Tess also said, is hidden from those around them. I accept that in some cases, the carers’ lives seem equally unbearable, and I am sure many believe they are actually worse off. I won’t get into this, because obviously every case is individual. However, in the main, I would rather be the carer. The carer can always run, as ‘Muggins’ is recommending.

I will accept that some of us with OCD are very selfish. I think this is due in part to personality, because many with OCD are the total opposite, some of the most altruistic people I know have OCD. If a person is selfish by nature and added to this living in torment, it is likely to make them very demanding. The man who wrote the above message is doing himself and his partner no favours, however. Something else that Tess pointed out.

As for our reluctance to face CBT or take medication, I feel the writer is basing this on his partner’s refusal. Most of us will take every opportunity to make our lives easier, and especially the lives of those around us. If he reads books on OCD he will note that the professionals find most OCD sufferers to be very cooperative, and determined to help themselves.

I have a friend with OCD who has tried all medication offered and CBT. She has also volunteered to be a guinea pig, placing her health in jeopardy as scientists experiment on new treatments. This includes regular MRI scans, which, although probably not dangerous, cause her intense fear as she is claustrophobic. She is not doing any of this for herself, she feels it’s too late for her now. She is doing it for youngsters with OCD in the hope they won’t endure the years of hell she has.

All those who know me will be aware that I speak my mind, even when my words are controversial. I have actually spoken about the selfishness of some with OCD, previously. However, the above rant seemed to be unfairly tarring us all with the same brush and this is totally unacceptable.

Unlike Immy, I do fully understand how a person with severe contamination fears can live in filth. Apparently, this is not uncommon. It is often a case of a person being too terrified to disturb the dirt. They may make an extreme effort in some areas, but leave the rest of the house in a terrible state. Or, if they have a person willing to do the work, they occasionally give up altogether, not through laziness, but because it’s a way of avoiding extreme fear. Of course, this is not in the OCD sufferer’s best interests, nor the person he or she lives with. Immy, I envy you for finding this beyond you. I am terrified of contamination that is invisible. I shake with fear venturing outside my back door. I side-step through my hall, so worried I’ll brush against the walls. I stand most of he day, even while typing this. I am a source of irritation to many, I am sure, but please consider for one moment something you are terrified of and try to visualize this lasting for years. And let me tell you, ‘frustrating’ does not begin to describe it! It is hell.

‘Muggins’, get professional help, for your sake and your partner‘s. Yes, your health problems do indeed count for something. If the person you are living with is genuinely not concerned about your health, then I am very sorry. Please, don’t assume this is down to her OCD, if that is the case.

Tricia.

Tue Jan 18 2011 13:26:25 #
Unregistered

I live in the filth my family create everyday because I have no choice. I do what cleaning I can, but when germs are being spread around everywhere there is only so much I can do. If I was selfish I would be openly moaning at and accusing my family all the time, but I never say a word when my dad doesn't wash his hands, or when someone gets poo on the floor or somewhere else where it shouldn't be. I put up with a lot and I deal with it alone. You can't tar us all with the same brush.

Tue Jan 18 2011 13:42:44 #
Unregistered

Quite right, Helz!

You are a perfect example of an OCD sufferer who is totally unselfish. Trudy, Jo and Tess are others. I understood this person's distress, but my goodness it was wrong of him to group us altogether in such a fashion. Tricia x

Tue Jan 18 2011 14:05:39 #
Unregistered

Agreed. I feel that everyone on here is unselfish. As you said, any OCDers who are selfish probably are because that's their personality anyway. My mum does a lot for me in ways not related to OCD, i.e. things that she's always done for me and everyone else at home before I had OCD, like washing clothes etc. If she wanted me to wash the clothes myself or do anything else like that I would do it, but she actually says she prefers just to do it herself. If I did my washing seperately I suppose we'd both be competing over who was going to use the machine. I'd actually like to do my own washing as I don't like people touching my clothes, so they never feel clean, but I never say that because I don't want my mum to feel hurt.

I feel like I'm being really defensive here! Sorry about that! I just feel kind of accused.

Tue Jan 18 2011 14:17:29 #
bingo
Member

Since posting the message from the person concerned (let’s call him Josh – it’s not his real name but he wants confidentiality) he has been found in hospital where he has only a few weeks at most to live. You may recall in his message he said that he had been having some tests and seeing a consultant. I have visited him in hospital and after a lengthy conversation I have a better understanding of his situation but first I should explain that Josh and I work for the same firm and that is how we know each other. Josh guessed that I have OCD as he recognised some of my behavioural traits and we had had a brief conversation about it in the past during a tea break and it was then that he told me one of his family has OCD and I must have told him about this website and forum. Josh doesn’t have internet access although he does have email but only at work. He sent the message to me a week ago via the work internal email system but I had a week off and did not see it until yesterday.

During the hospital visit Josh told me that two of his family members have OCD, one very severely, and that for many years he had been a carer doing just about everything for them. In that time he had seen the situation get worse for them and for him. He had been approaching breaking point for a long time with the ongoing daily grind of caring and supporting them and of being concerned for them for the future and for his own deteriorating health. On the Friday before the Sunday he described he had been to the hospital to find out about the tests he had and it was then that he was informed that he had a terminal condition. It’s difficult or impossible to imagine how that affects anyone but what made this worse for him was that none of his family seemed to care even to ask how he was or what the result of his tests were, indeed, one of them was more concerned about walking home in the rain. The final straw came on Sunday when after a very long day of doing all manner of chores the family told him that while he was doing the washing up he had missed something on TV that he would have liked to have seen, and this while they were sitting there and not offering the slightest help.

Josh told me about the situation at home and I found it incredible that matters could be so bad and so hard on him and of course in different ways on his family. I won’t repeat his or his family's circumstances here as it will make for very depressing and distressing reading. The comments he made in his message related to his situation and were made at a hugely emotive time especially considering his own “health” and that he was exhausted and literally at the end of his tether with worry. Josh was suicidal and it was his intention to end it all. His message to me was not intended to slag off people with OCD but more to explain and justify whatever his troubled mind was telling him to do – and that he was fully intent on doing. I won’t elaborate on what happened after he sent the message except to say that this is just one more thing this dreadful condition can do to people and not just sufferers but carers too. It is quite probable that if Josh had sought attention for his own condition sooner there would have been a better prognosis and certainly greater life expectancy. Similarly if his family were willing to seek help not only would it have helped them but it would have helped him too.

Josh’s comments may seem harsh and unfair but taken in context with his situation, which was relatively isolated, they are fully justifiable. Please remember that Josh was still in shock from the diagnosis that he has a terminal condition and that his life expectancy was not good. Josh is a kind, hard working man who put others welfare before his own. It’s a shame there are not more like him and an even greater shame that society can not or will not do more for those suffering from dreadful conditions such as ours.

I must say that after reading some of the comments in response to Josh’s message – a message that was written at a time of absolute despair for his own and his family’s future - I am very disappointed and saddened at the attitude and lack of understanding of some of those responding. While those comments were made without the full knowledge of the situation a number of them demonstrate Josh’s thoughts and experiences relating to how one sided OCD sufferers views can be. Please don’t try to tell me I don’t understand OCD because as a long time sufferer I do. OK, so with hindsight things needn’t have turned out the way they did, but it is too late for a different outcome. I detest hindsight champions only slightly less that I detest OCD. What we really need to do is to learn from this very sad experience and push hard to get a better deal for sufferers, carers and all those affected either directly or indirectly by this dreadful condition.

Bingo

Tue Jan 18 2011 21:16:21 #
Unregistered

I feel very sorry for the guy and for his situation. I just resent the idea that all OCDers are selfish. He was in a bad position and his family members may have indeed been selfish, but not all of us are. I wish him a peaceful time as his illness comes to an end and hope that his family can see the error of their ways. They might not be able to recover from their condition, but they should at least consider how their problems affect others and try to protect those around them.

Tue Jan 18 2011 21:23:41 #
immy
Member

Bingo thank you for letting us know where he is. He obviously was suicidal when he wrote the message.If you see him again tell him I do understand how it feels for your family not to want to know how you are. In my husbands case it is not that he doesn't care he is too afraid of the possiblity of my being ill to talk about it.
I understand how offensive his words must have been to sufferers of OCD but the problem is most carers don't know very much about other sufferers only the ones they live with.I think we should forgive him for mistakenly saying all OCDers when he really meant the ones he lives with.
Tricia thank you for your comments, my husband makes no attempt to describe to me what he is thinking or feeling. I think he is too embarrassed and afraid but it makes it so difficult to understand what is going on.Your description seems to match his behaviour and I can now understand better what he is going through.
It is not a question of who is suffering more carers or OCDers. Carers are very rarely listened to and so then when they do scream for help they are not reasonable in what they say. As most people with OCD know what it is like not to get the help they need please be understanding when carers talk of their frustrations.

Wed Jan 19 2011 7:42:11 #
Tess
Member

Dear Bingo
Thank you for explaining your friend's circumstances, had we known the true picture at the time I think we would all have commented differently. You say you are disappointed at the attitudes and lack of understanding which have come across but we can only understand when we are presented with the whole picture. The truth is that we all suffer, OCDers and carers.
I am wondering if Josh's rant was just about the unfairness of life, he has given himself to the care of others and now life is dealing out it's cruellest blow. I hope before he journeys on that he will discover the love which those he has cared for have for him, for they undoubtably will, even if the OCD makes it hard for them to show it openly.

Wed Jan 19 2011 10:54:57 #
Nimrod
Key Master

This is a message from Cliff Snelling, our OCD Action Carer Representative.
Caps

This is a very sad and distressing case but regrettably it is not unique or even unusual. In 2004, when I was a member of the NICE (National Institute for Health and Clinical Excellence) OCD/BDD Guideline Development Group I undertook some research into the effect of OCD on the families and carers of sufferers. The full report is here ( http://www.ocdaction.org.uk/files/2009/11/CarersAndFamilesSurvey-2.pdf ) The work showed that there was a huge, largely hidden impact on the lives of individual carers and whole families ranging from a mild inconvenience such as making special arrangements or allowances to the destruction of family life, including the break-up of families and virtually a “zero” quality of life for some carers. In the same way that some sufferers are driven to take extreme measures, so are some carers. This is nobody’s fault as nobody chose to have OCD or a relative with OCD.

Nobody disputes that OCD is difficult or impossible to understand. My findings and personal experience suggests that carers, and anyone else who does not have OCD, cannot understand how it affects the sufferer and that sufferers cannot understand how it can affect carers. It is not a case of being selfish, as has been suggested, but perhaps more a case of not being able to understand the impact from the others perspective. And of course this is made more difficult by the fact that we are all individuals and all of our circumstances will be different.

In the case of Josh we only have a brief snapshot of one side of the story and that from a man in a very distressed and emotional state. I wonder if we could have his experience from a “normal” (whatever normal is) calm state if it would be very different and how much. Also, I wonder if we could have both sides of the full story what the outcome would be.

We all know that OCD is the most distressing condition to those it affects but it is often forgotten, especially by the wider society that there is also a great impact on those who care for their loved ones who are afflicted with this dreadful condition. In the same way as many sufferers try to hide their condition from others, carers and family members do the same. Sadly there is still a great deal of stigma attached to mental illness which is also directed at the families where a member is mentally ill. I can do no better than to quote Bingo “What we really need to do is to learn from this very sad experience and push hard to get a better deal for sufferers, carers and all those affected either directly or indirectly by this dreadful condition.”

As part of my role as Carer Representative I raise awareness about carer issues at every opportunity in as wide a range of organisations as possible. Progress is slow but gradually the message is beginning to get through.

For further information go to the following links:

NICE quick reference guide
http://www.ocdaction.org.uk/files/2009/09/nice-cg031-quickrefguide.pdf

NICE guideline for the public
http://www.ocdaction.org.uk/files/2009/09/nice-cg031-publicinfo.pdf

OCDA Support and Information page
http://www.ocdaction.org.uk/support-info/resources/

Cliff Snelling
Carer Representative

Wed Jan 19 2011 11:56:25 #
Unregistered

Bingo, Josh’s situation is heart-rending. However, the paragraph beginning ‘You OCDers are so fugging selfish…’ has caused great distress. The people he cares for may indeed be utterly selfish, we do not have the full picture and are unable to judge. It is clear, however, that Josh has sacrificed so much and my heart does go out to him. He is obviously a man who is in total despair and I think anyone would be heartless not to feel for him right now. It makes it more understandable why he wrote the paragraph which upset so many of us. I just wish he had omitted certain sentences.

Bingo, You may indeed be saddened and disappointed with some of our messages here. But, please remember, we were not told of the severity of Josh’s condition when we wrote previously. I honestly believe that if you went on ANY other forum, unrelated to OCD, and ranted about the selfishness of the members there (with whatever condition ailed them) you would find the responses much harsher than ours! We were not being one-sided at all.

Good luck to you, Josh. I am sure many of us here will be quietly praying for you and your family.

Wed Jan 19 2011 13:40:19 #
Unregistered

P.S. Bingo, You (and Josh) mentioned the person who was more concerned about walking home in the rain. Was this person merely irritated by the damp conditions or were they petrified of dirt splashing up as they walked on a wet pavement? I’m not excusing the lack of concern for Josh, but fear could have been the driving force behind the person’s behaviour.

Wed Jan 19 2011 13:48:56 #
Unregistered

Dear Immy, Not wanting to fall into the trap of saying a particular group or sex behaves in a certain way, but in my limited experience I have realized that men often find it harder to be open about mental illness than women. Some, very sadly, seem to regard it as a weakness. As with all things in life, I believe the more openness the better, but often people feel unable to be open, even with their closest relatives. Because they are ashamed or embarrassed there remains so much misunderstanding.

At a large U.S. conference, contamination fears were being discussed. It would appear that more (with this form of OCD) live in a mess than in a scrupulously clean home. Often the thing the person fears is harmless and yet they are living in a far from healthy environment. I have read books by psychiatrists and psychologists who were initially shocked when they visited their patients’ homes (those with contamination fears). They erroneously expected to see order and cleanliness and often discovered not just untidiness and dirt, but even squalor.

I have an extremely intelligent middle-aged friend who lives in New York. She raised four children and had a show home, that is until her contamination OCD became severe. She now lives alone (no-one from her family will even speak to her on the phone). She is too afraid to open a window for fear of allowing ‘contamination’ in. She will not use the air conditioning for the same reason. The steam from her lengthy showers has caused so much condensation that her flat is covered with mould. Once a fortnight she braves the outside world to purchase a few groceries, she doesn’t buy much because she is barely able to eat. The other day her car broke down. She called the breakdown service and a new battery was fitted. Unfortunately, this battery had been placed in the foot well of the mechanic’s car. My friend was unable to drive home and sat in sub-zero conditions for several hours, believing that to drive (or even start) the car would allow contamination from the underside of the battery to infiltrate the vehicle.

My own contamination fears make absolutely no sense, not even to me. I have seriously disrupted my family’s life. I have totally destroyed my own, and for what?! My friend is likely to kill herself by her behaviour, she is certainly unlikely to reach the ripe old age she probably would have done, had she behaved in a ‘normal’ way. She is intelligent enough to realize this, but fear, even when totally illogical is an extremely powerful driving force.

I am more than understanding when it comes to carers. I have a close friend who is one. The only reason I was upset with Josh was because he ’attacked’ us all. Yes, some with OCD are incredibly selfish, others are the opposite. A few will refuse treatment (but usually this is fear-based) but most willingly accept all the help they are offered. Until I read the paragraphs where he rounded on us, the sufferers in general (which caused a great deal of distress to many) he had my complete sympathy - his life sounds hellish. All the more so, now Bingo has updated us.

Best wishes, Tricia.

Wed Jan 19 2011 13:49:57 #
Unregistered

Just to pick up on something Cliff remarked on. I do realize it is often a case of there being a misunderstanding between carers and sufferers and this is often due to the lack of really good communication. It is impossible to fully empathize with something we have no first-hand experience of, be it OCD or living with someone with the condition. I can never know exactly how my condition affects my husband, he can never understand fully how OCD affects me.

However, I feel that the lack of empathy is sometimes due to a selfishness (on either side) if a person is not willing to attempt to place themselves in their relative’s shoes. This is obviously not entirely possible, but, with love and consideration, I believe we can reach 80% awareness of how the other person is feeling, especially when there is open dialogue. We need to be able to talk openly, but, more importantly, we need to be able to listen.

I know carers who have physically and mentally abused those with OCD. From awful name calling to violence. I have also known OCD sufferers who have abused their loved-ones. We are all human and this condition can really drive people to the limits of their endurance. Some with OCD make no effort to help themselves. When this is due to fear it is understandable, though unhealthy, for both carer and sufferer and ultimately their relationship. However, some with OCD are incredibly selfish, sadly this cannot be denied. Some carers are equally selfish, although they will not remain carers for long. Unlike the sufferer, they can walk away if it all becomes too much.

I have had contact with fellow sufferers from the forum who will let slip, occasionally, that they have no patience with another person’s obsessions. This is what saddens and alarms me most. How can we expect those without OCD to have tolerance, when some with the condition are intolerant of their fellow sufferers?!

Tricia.

Wed Jan 19 2011 14:49:33 #
bingo
Member

I visited Josh in hospital this evening. His condition is deteriorating rapidly but he is being well cared for and is free from pain, thanks to the medication, for the first time in many months.

It seems that he had been advised by the doctors some weeks ago to get his affairs in order. This is a covert way of saying that they know or think his condition is terminal and that he should make a will etc to save his relatives any potential problems from dying intestate. He told me how this added to his dilemma as he wanted to spare his family any despair or worry about his potential demise and it compounded his worry of how they would cope without him. He had done just about everything for them for years including looking after the finances, insurance, house maintenance and all those chores and things that someone has to do. He told me that they had no idea about any of these things and that he had been trying to find ways of getting them to find out and to find a way of informing them of his condition without upsetting them. I can’t imagine the torment he must have suffered from that, add the pain he was in and the way he felt he was being treated by the family and it is no wonder he flipped and wrote in that way and took the actions he did.

We can’t turn the clock back and right or wrong what is done is done. We can only do what we think is best at the time and that is what Josh did. I am so sorry there was no one there for him.

Bingo

Wed Jan 19 2011 21:47:17 #
bingo
Member

It is with great sadness that I inform you that Josh passed away today.

Josh was a kind, hard working man who always put the wellbeing of others before himself. He will be sorely missed by all those who had the privilege of knowing him.

Rest in peace my dear friend.

Bingo

Sat Jan 22 2011 20:59:01 #
Unregistered

Sat Jan 22 2011 21:11:31 #
Truddles
Member

I'm sorry to hear of the sad news about Josh

Sat Jan 22 2011 21:44:36 #
Tess
Member

I too am deeply sorry to hear this.

Sun Jan 23 2011 10:45:41 #
wannabefree
Member

I found this thread by sheer chance, and am deeply disturbed by the way the thread reads...
It is with deep regret that I am planning to move away from OCD ACTION, and seek help on my own...
I too can take things word for word how people say them, but that is a vexation to the spirit, and I need to close here...
All the best for the future everyone, let's hope the world gets better soon...

Sun Mar 13 2011 13:38:44 #
Unregistered

I was desperately upset by this thread, too, many of us were. One friend phoned me in tears.

I do hope you'll reconsider because we will miss you. I don't blame you, though, I considered leaving and two other people I know did, too. xx

Sun Mar 13 2011 14:36:46 #
Tess
Member

Dear Wannabe
I too hope you will reconsider because the forum needs people like you who manage to keep positive despite the daily struggles. It's not possible on a forum like this to avoid upsets and if we all walked away when something we read distresses us there would be no forum. It is unfortunate that you discovered this particular thread because it is possibly the most upsetting one I can remember since joining the forum over a year ago. I have also discovered that the more you open up your own life on this forum the deeper the hurt can become and each of us has to decide how far we feel able to reveal what is going on in our minds and in our lives. But the positive on this forum far outweighs the negative and I do hope you will decide to stay.

Mon Mar 14 2011 10:02:26 #
jen67
Member

I have returned to this forum today for the first time in quite a while away from it.
Then my eyes fell on the first post in this thread.
I have sat quietly reading every single post in response.
It is a heart breaking story. I immediately found myself feeling empathy for Josh, ( no not a hindsight remark!) I could feel the desperation, sadness, and exhaustion in his words. I am also a carer, and know the depths of which OCD can take me down to, ( yes as a carer).
One thing however I would truely like to say is that I am finding myself having more sympathy and understanding.
Being angry at OCD really doesnt help me, or my son.
This thread has actually enlightened me, and highlighted the importance of a mutual respect and tolerance between the person who suffers with OCD, and the person who loves the sufferer.
Understanding, patience, love and communication[b].
As a carer, we cannot walk away. I would never walk away however desperate and exhausted I feel, you know why? I love my son. I could not ever turn my back on him.
Carers and sufferers, please lets try to understand eachothers perspectives.
I'm certainly going to try harder, after reading these posts.
Rest in peace Josh, my deepest condolenses to your family.

Sun Apr 3 2011 13:48:32 #
bingo
Member

I recently visited Josh's family and although they are still grieving they are doing a lot to cope with what for them is a particularly difficult situation. For many years Josh had done so many things for them including things that they could not do because of their OCD. However, they have had to tackle these things and they have been quite successful with many of them despite their OCD. Remarkably a number of tasks that they "couldn't" do because of the OCD they are now able to do without any OCD problems. At first sight this appears to have parallels with CBT brought about by sheer neccessity or even the shock of the situation, but I really don't know as this is just a thought. I do know thay they have had no specific professional help in respect of their OCD.

The good news is that they are beginning to cope but the bad news is that they are feeling guilt for the way things were. It is wrong for them to blame themselves as it is not their fault and I hope that they will get some counselling or other help to cope with this.

The really sad thing is that things could have been better for everyone had society as a whole recognised the unseen burden of mental health for sufferers and those around them and done something about it in the same way as for physical conditions such as cancer or heart disease. However, we can't turn the clock back and we have to go forward to improve matters in the future. In the meantime they are making an effort to improve the quality of their lives but it is important they get the support they need.

Bingo

Mon Apr 4 2011 8:48:58 #
Tess
Member

Hi Bingo
Thanks so much for the update, I'm sure I'm not alone in wondering how Josh's family have been coping. Certainly their apparent improvement gives a lot of food for thought as to whether the behaviour had become habitual rather than OCD or, as you suggest, the result of shock.
It reminds me of an elderly couple who lived three doors away from us when we lived in south Devon. The wife was severely disabled, she walked very slowly with a stick and her husband did everything for her. Then he died suddenly of a heart attack and within a couple of months she no longer needed her sticks, she had bought herself a small car (as an able bodied person she used to drive but hadn't done so for many years) and she stated taking herself off to various activities. We were gobsmacked, we had expected her to fall apart and end up in a nursing home. This makes me think that dependancy is not in anyone's interests, either the sufferer or the carer.
One thing I feel sure about from what you said about Josh is that he would be delighted and relieved that his loved ones are coping without him and would not want them to be feeling guilty.

Mon Apr 4 2011 9:40:40 #

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