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Frustrated and i am not sure what to do about it - Carers UK Forum

Frustrated and i am not sure what to do about it

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Hi, My names davey

I live with my partner Trevor of two years, who has severe hygiene based OCD and has also been diagnosed with autism at the age of 36.

I am going to start at the beginning because i don't know, where else to start so bare with me.

I met him two years ago and he was clear from the start about his OCD although he never showed signs of it but would be unavailable for days on end when we first met. First let me be clear he is one of the most kindest sweetest and generous men i have ever met when he is not dealing with the routine because of his OCD but when he is he becomes a needy child that won't try or do anything for himself and constantly ask's me do things he doesn't want to deal with simply because i can do it faster and in less time, but i digress.

I got involved in his routine not long after we both met (looking back now probably a really foolish decision which will become apparent later) because i felt sorry for the fact that he spent hours sitting on the toilet and would constantly feel like everything was dirty. So i started inviting him to my flat so i could be there for him so he wouldn't be alone.

Now just to give you some insight Trevor's routine when he need to go for a number 2, can last upwards of 8 to 12 hours of him sitting on the toilet and cleaning himself and then showering and then washing his hands to put his clothes on etc etc, even just going for a pee is an hour or two hour long ordeal. Now he takes medication, a drug called clomipramine, this drug makes him extremely sleepy which is one of the side effects, which makes his routine worse since he will fall a sleep on the toilet which makes his routine even longer, he wipes and wipes with toilet wipes for hours and won't stop until every spec of brown is gone off the sheet, often blocking my toilet in the process :( but that is another story.

This can last up to 8 hours and has sometimes last for almost 24 hours on really bad days. once he is finally finished he asks me to hand almost two dozen detol wipes one at a time through the bathroom door so he can wipe down every square inch of the toilet, once he has done that he come out of the bathroom and waits in the hall while i use a product called green clean which he says is a none chemical disinfectant to spray down the floor, door, door frame, some of the walls and bath and shower in one down and to start the bath running for him with bubble bath, he then re-enters the bathroom and washes his hands briefly and eventually gets in the bath, i then have to spray down the bathroom a second time with green clean, he then sits in the bath about 10 mins and i am called back again this time it is to tell me what he needs doing for when he gets out the bath and then i have to time him with a phone while he holds his breath and places his head under water for the better part of a minute and then in various positions for 30 seconds at a time.

He then starts soaping himself down which involves soaping every part of himself which can take upwards of half an hour again, i then have to check he has soaped himself properly and his back and then i have to spray the bathroom down again with green clean and then he has me clean the pull cord light switch with a detol wipe and then i have to spray down while he is holding it every square inch of the shower curtain and the side of the bath and the floor with green clean and then finally i can go to bed.

Now you may think well if he is on the toilet for so long your not constantly helping which is some respects is true, i do get a chance to watch Tv and play computer games but i am constantly on call with him, when ever he has something he wants to ask i have to go and answer him or do it, it is not like he doesn't involved himself in the day to day goings on with me in the flat.

We live in a one bedroom flat so my bathroom is literally two foot away from every other room, so he leaves the door open and watches me do everything and if there is something he doesn't like for example i put something in the bin and even though i haven't touched the bin at all i have to wash my hands and he will pull me up on it.

I also have to sleep on the settee while he is doing his routine because i am not allowed to go to bed while he is doing it because if i have been in the bed we share, i must have a shower when i get out of it because otherwise i won't be clean enough for him, bare in mind his routine often starts at about four in the afternoon and he won't be finished till ten AM the next day if we are lucky and even if i do sleep he wakes me up if he needs something so i can't get a full 8 hours sleep so i stay awake which then means i am tired and irritable when it comes to doing his extended routine finisher i described above.

I get carers allowance which doesn't pay enough for the sheer hours i have to put in i am a carer 24 hours a day, 7 days a week. I also have a part time job as well, i have to do all the cleaning, washing up, washing, emptying bins and all the other stuff he won't do. He won't touch me a lot of time because i have been to the toilet during the day and i am no longer clean because i have not had a shower. I have been sprayed down with green clean because i have touched something he says is dirty even it is just slightly i get sprayed in the face a lot of the time, this includes in public places since he carries a bottle of this green clean around in the boot of the car, so i have been sprayed down in a parking lot in public several times which is embarrassing and i have to spray him down in public as well.

We argue constantly while he is doing his routine although i know he doesn't do it on purpose because the bathroom is in full view of the whole flat i can't do anything without him commenting and asking if i have done this right or sprayed that or done the washing up or how to do the washing, it is like having a adult that wants everything done his own way mixed with a child that pouts and stamps there feet if you don't, so basically i have no choice in the matter if i don't do it the way he says or refuses, i end up with him pouting or borderline crying in distress until it is done his way, so every decision is made by him during his routine and if i am asked to do something i must do it the way he wants it done, he asks but there is never a choice in the matter "Can you spray down the worktop because i think you have made it dirty?" i can tell him i haven't made it dirty and i cleaned it down not five minutes before and i get but you have and if i say no i get pouting crying and he will sit there upset for hours extending his routine and thus the time i am kept awake with him, so it is just easier to do as he says.

This would be ok in small doses but he has now started finding problems with things and not telling me about them like little landmines round the flat, he won't mention them until i start to do something like the washing up or cooking dinner then he brings up that a week ago he made something dirty by accident and that he wasn't sure if i had touched it and made other things dirty, when i get frustrated and annoyed with him for leaving it so long and not telling me, he just says there was nothing i could do about it till now so why tell me, not understanding that not knowing about it means i may have touched the problem area or placed something on it or moved it, this leads to him freaking out and me spraying green clean over everything and making the whole room soaked.

I am tired, i am frustrated and i don't know what to do about it, he has been seeing a psychologist for several mouths now but nothing has improved nothing has changed, he changes his clothes everyday but i can't put the washer on while he is awake because the washer empties into the sink waste pipe and sometimes the dirty water backs up into the sink although literally it is just a little foam but it stops him using it and then it comes to him peeing, constantly washing his hands i have a full laundry basket constantly, i do more washing than a family with two newborns using none disposable nappies and it is just the two of us.

I feel like i am getting nothing done i am not sleeping properly or at the right time, i am constantly being woken up early to deal with things not allowed to go to bed when i want, we eat as silly times and in the past year i have gained almost 4 stone.We are bickering constantly and i don't know, how much more i can take.

Sorry for the ramble post i just wanted to explain and get off my chest the way i am feeling if anyone has advice or has been though this with someone with OCD and autism any advice would be greatly appreciated i am at my wits end :(

I have to say though that i do understand the fear he has behind everything and that he fears what germs can do but won't let me fix it for him without constantly checking my work, i have to report to him like some slave telling his master how the chores were done, he is not a bad person far from it and if it wasn't for his OCD he would be the perfect BF but............................
Oh Davey. Your situation sounds awful. From an outside point of view this seems to me like an intolerable life for you to lead. I know nothing about OCD. But I know about good, healthy relationships and this isn't one at the moment. I know this sounds harsh, but you being at his beck and call like this isn't fair on you. I know he can't help the way he is behaving due to the OCD and autism but a relationship is an equal partnership and I don't see that you are getting an awful lot of respect here at the moment.

Have you been to the psychologist with him? Could you speak to them about ways to help him? Perhaps it is early days and he will be able to change things? Have you read all you can about autism and OCD? I know from friends who have children on the autistic spectrum that the autistic mind processes things in a very different way to "neuro-typical" people. If you can understand that perhaps you can get better, healthier routines in place rather than this extreme one you are both trapped in?

I am asking this out of ignorance of his problems. But what would happen if you stopped going along with his routines? Either suddenly put your foot down. Or were more gentle and did so gradually? Could you modify his behaviour like this or would it ultimately be too upsetting for him?

I hope someone with some knowledge of the problem has some better suggestions to help you as you clearly care about him deeply. Ultimately though i do think you need to start putting some of your own needs first too.
Sally_17031 wrote:
Thu Feb 15, 2018 8:27 am
Oh Davey. Your situation sounds awful. From an outside point of view this seems to me like an intolerable life for you to lead. I know nothing about OCD. But I know about good, healthy relationships and this isn't one at the moment. I know this sounds harsh, but you being at his beck and call like this isn't fair on you. I know he can't help the way he is behaving due to the OCD and autism but a relationship is an equal partnership and I don't see that you are getting an awful lot of respect here at the moment.

Have you been to the psychologist with him? Could you speak to them about ways to help him? Perhaps it is early days and he will be able to change things? Have you read all you can about autism and OCD? I know from friends who have children on the autistic spectrum that the autistic mind processes things in a very different way to "neuro-typical" people. If you can understand that perhaps you can get better, healthier routines in place rather than this extreme one you are both trapped in?

I am asking this out of ignorance of his problems. But what would happen if you stopped going along with his routines? Either suddenly put your foot down. Or were more gentle and did so gradually? Could you modify his behaviour like this or would it ultimately be too upsetting for him?

I hope someone with some knowledge of the problem has some better suggestions to help you as you clearly care about him deeply. Ultimately though i do think you need to start putting some of your own needs first too.
Hi Sally, thanks for the kind words

Your right sometimes i feel like a slave running around after him but when i confront him, he says it isn't that way and get very upset, believe me there have been time i have just lost it and told him enough is enough and for today he can sort himself out if he is going act that way and he has broken down into tears and literally begged me to stay and help him, it is heart breaking to see him that way.

See a more cynical person would think that he is manipulating me to get an easy life but i really think that he doesn't understand the effect it has on me or worse he does understand the effect he is having on me and literally can't find away to do thing differently to stop it. Not having a huge amount of experience with OCD other than life experience in the past two years with him. I don't know whether this is normal behavior for someone with OCD or it is literally just the way Trevor is.

Since he only picked up the OCD about 10 years ago before that he led a normal life, from when we have talked it all started when he had to have an operation on his nose and he was told to keep it clean and sterile, which is normal advice for someone who has just had an operation and he took it to the extreme then his mother got ill at the same time and had a pace maker fitted so then it was all about cleanliness and sterile again and then it just spiraled.

I am sitting here typing this now and i still haven't been to bed because Trevor is still on the toilet since the last message, he is getting upset and frustrating because he is constantly falling a sleep and can't stay awake long enough to finish. This is normally the time i start to get frustrated and upset myself for having been awake since about midday yesterday (yawns) lol but it is making me feel better to put my feelings into words.

I know it isn't easy for either of us, i understand that it just gets harder to stay calm when i barely can keep my eyes open myself, maybe i should go and have a nap lol again thanks for the kind words and it is nice to know someone is listening. :D :D
This is NO WAY to live a life. By going along with his behaviour you are almost encouraging it to continue. He has absolutely no consideration whatsoever for you, your life, and your needs. He needs to get help, urgently. You need to issue an ultimatum. Get help, or leave. Until you do, he can get away with it. I know nothing about mental health, but I care about the carer and the effect that caring is having on them. This cannot go one, must not be allowed to continue unless he is doing all he can to get help, and following the advice of his medical staff.
I am absolutely sure too that he isn't manipulating you too. I am sure he can't help it and I'm sure he must be miserable too. But the effect is the same that you are both trapped in a horrible situation. I think totally understandable that you are frustrated. And I am putting it out there, but it would be understandable if you reached the end of your teather and decided you didn't want to care any more. What did he do before he had you?

But if you want to stay, getting him help is the way forward. You could go to your GP in your own right and see if they have any suggestions for local support groups?

It may also be time to consider trying to get some outside help? Maybe request an assessment from social services if you haven't already?
Sally_17031 wrote:
Thu Feb 15, 2018 11:16 am
I am absolutely sure too that he isn't manipulating you too. I am sure he can't help it and I'm sure he must be miserable too. But the effect is the same that you are both trapped in a horrible situation. I think totally understandable that you are frustrated. And I am putting it out there, but it would be understandable if you reached the end of your teather and decided you didn't want to care any more. What did he do before he had you?

But if you want to stay, getting him help is the way forward. You could go to your GP in your own right and see if they have any suggestions for local support groups?

It may also be time to consider trying to get some outside help? Maybe request an assessment from social services if you haven't already?
He is seeing a psychologist once a week although, she seems to be not helping very much and seems to be giving little advice other than trying to shorten his routine, which she is having limited success with. Seeing this psychologist took almost a year to sort out thanks to the extreme state of the mental health service in this country so even a lousy psychologist is better than none.

It is the extreme situations that cause the most distress like today, i have napped for 5 hours it is now 15:15 here and he is still on the toilet, this means he has been sitting on there on and off beside me, going to the toilet for a total of 17 hours now.

I have two choices i continue to help or i leave him and when i met him, he took longer doing this routine than this. He was once so bad that he was doing his routine for so long, he didn't leave his house doing his routine for over a week just having to do his routine back to back. This was due to his GP proscribing in there arrogance a new mental health drug and then not monitoring Trevor causing him to have a extreme mental break, i wasn't around for this it was before i met him and i would have gone nuts with the GP about it.

I put myself in this situation i said i would help and support him and i placed myself in his routine to shorten it and about 50% of the time that works, it's the other 50% that is the kick in the balls (pardon my language) as with all mental health it doesn't work the way we want it to day in and day out.

I am not sure how social services can help, they won't have someone sit here day in and day out helping him through things, unless they can find us a bigger place with second bathroom and at least two spare rooms that we can afford so he can get on with his routine alone and i can sleep lol but seriously i am not sure how they can help?
David, I'm afraid it looks as though you have three options:
(1) continue as now. surrender your life to his illness and accept you will never have a life outside of that. His OCD is severe and chances of good psychiatric help lie far in the future (from what you say). Perhaps he will never get the help he needs.
(2 ) Refuse to comply while reassuring him that you love him and want him to live with you. (I confess I doubt this will go anywhere.)
(3) Tell him you can no longer cope and can no longer live with him.

Whatever you decide, if you continue with option (10 you are enabling him to carry on behaving the way he is. In effect, both of you are stuck on that toilet and will continue to be stuck there. Can you really bear the prospect of years of that? Remember, also, that although you may have relieved some of the severity for a while, it could get worse - even if you do everything he wants. And it will be a gradual change, so it sucks you in, bit by bit. We've all been there, in our different ways.

None of the choices are easy. However, it's OK to choose option (3).
Davey, I think if you re-read your first post, as if you were one of us, it's impossible to escape the grim conclusion that your partner (and he isn't really a partner, is he? More like a patient alas) is SERIOUSLY ill.

The combination of OCD/Autism is making it IMPOSSIBLE for him to live anything even remotely resembling a normal life. He does, to my mind, URGENTLY need to be admitted to a psychiatric hospitcal that can cope with his EXTREME behaviour.

It's out of the question for you to continue being with him, ie, having him in your place, or you living with him. He needs TOTAL care for his OCD and IN HOSPITAL.

I don't know what can be done to reduce his OCD to even anything like manageable proportions, but if it cannot be MASSIVELY reduced, to say only about 10% of what it currently is, he cannot live 'in the world' at all.

You use the phrase 'normal for OCD' - Davey, there is NOTHING 'normal' about OCD! OCD is a mental aberration, and is NEVER 'normal'! I have it, mildly, and it can become highly disruptive, even at my very mild levels! and I have the insight to know how 'possessed' I am with it - for someone like Trevor he clearly is WAY beyond any semblance of self-awareness or management - this may be because of his autism, I don't know - but it doesn't really matter WHY he has such grotesque levels of OCD.

I know this may sound 'harsh' but, as I say, re-read your post, ask anyone you know whether what Trevor does is 'tolerable' and you will get the same answer, I know.

Because I was raised by a mother with severe mental illness, I do know how 'blind' one can be to seeing and recognising gross abnormality in another person - but Trevor's behaviour is GROSSLY abnormal. Utterly and totally intolerable for you, and for him.

You cannot help him - with the best will in the world, you cannot help him.

It's time for him to have urgent professional help and NOT IN YOUR HOME. All that has to be sorted is getting him OUT of your home, and INTO specialist psychiatric residential care so whatever can be done to mitigate his gross abnormal behaviour, can be attempted by PROFESSIONALS.