Advice or thoughts?

[Guest Megs]

Hey all

Lots of reading but first post.

My husband has had OCD since he was young and I have been married to him for the last 28 years. Things have gotten worse and over the last four years it has been so rough. Last year he became suicidal was hospitalized for two weeks and has been on CBT treatment and lots of meds since. They said he has difficulty generalizing - he sees each OCD incident as distinct and doesn't transfer strategies from one to the other (which I totally agree with and explains so much). He also has acute psychotic incidents where he really loses touch with reality. I handle everything - he can no longer work.

He became highly agitated this last week because he feels God is sentencing him to hell and he can't do anything about it. Now he won't get out of bed. He has been there for most of two days and says he is staying in bed. I am not sure what to do. I have been coaxing him to try and get him to come down, which is just making him irritated. I am really angry though and tired and weary...

I called and he has a psych appointment Wednesday but what do I do until then?

[Hal]

Hi Megs,

It sounds like you're under a huge amount of pressure, I'm not surprised you're angry and tired, I'm so sorry.........I'm no expert I'm afraid when it comes to psychosis but does the not wanting to get out of bed conform to previous psychotic episodes or is this something new?

If this isn't related to the psychosis and maybe more down to OCD, depression or apathy, it's difficult to say, but so long as both he and you are safe I should think you'll be fine letting things be until Wednesday as long as he's able to eat and drink, but do you know if he has any intention of keeping the appointment? Do you have an emergency contact number you can call if things do deteriorate?

I take my hat off to all carers, it's one the hardest jobs going, are you able to take a break at all, can family or friends sit with your husband, even if it's just for a couple of hours to give you a chance to recharge your batteries?

Hal

[Guest Megs]

Hal,

Thank you so much for the reply. I think the staying in bed is related to the OCD and he is drinking but not eating at this point. I will see what today brings.

I did not give him an option when it came to the appointment but if he doesn't go - I think I would call to have him hospitalized.

His family is no help at all - my sister travels for work but is home this week and I think will come spend some time with me.

I am making sure he gets his meds and drinks and check on him every two hours (although I am listening constantly) but otherwise trying to not make him comfortable in his discomfort. I actually slept (what little I slept) in the guest bedroom (right next door) - couldn't sleep in our room just to sad and frustrated.

Thanks again - hopefully they can adjust meds in a way that helps. But so helpful to read and hear from those who get it.

Megan

[Hal]

Families eh, I'm glad you've got some support from your sister if only for a short while though and had a small amount of sleep.

I think your thoughts over hospitalization are the right ones, he can't not eat, that in itself will be affecting how well he's feeling in himself........it could be something as simple as looking at his meds that will make a difference, I hope so and things improve for your husband soon and also for you too,

I'm not sure how the US healthcare system works in terms of respite care, are there any outside agencies that can help at all?

[Guest Megs]

Thanks again Hal.

No respite care for our situation but they increased the geodon and I see a bit of improvement - hopefully the Psychologist on Wednesday will have some other thoughts.

I appreciate the brainstorming and the well wishes!! So meaningful!

Megan

[Guest Sally44]

If your husband is unable to generalise things, could he be on the autistic spectrum at all, maybe Aspergers? As problems learning and generalising learning into different situations/environments is typical of the difficulties of those on the spectrum? My son is 13 and has OCD and a diagnosis of autistic spectrum disorder. He swings from feeling that OCD is his friend and helping/protecting him, to feeling that OCD is ruining his life.

At the moment his mood can fluctulate alot. He can get very anxious very quickly. I am trying to just get the concept into his mind that OCD are just "thoughts", as bad as they seem; and that if you have the thought, and ignore the compulsion the anxiety will eventually go away.

Does your partner recognise that he has OCD? And what type of fears does he have? Can he delay the compulsions he has at all and "sit with" the anxiety?

He does sound very poorly at the moment, and you really need some help and support, but I have no idea how you could get that via the US system.

Are there any local OCD support groups or carers group in your area?

[Guest Megs]

Sally44,

So my husband was never diagnosed with Aspergers but my son has been (he has Aspergers and OCD but is managing quite well comparatively). My husband is so different from my son - very emotional but you are right they said the inability to generalize is something they would see from those on the spectrum (my son is actually better at generalizing than my husband???).

My husband's OCD is primarily rumination - he used to have some visual compulsions but now mostly it is just ruminating. Always around his faith and that God has doomed him or sentenced him to hell or wants him to commit suicide or such. At times he thinks God is sending him signs (the psychotic side). He is not very good at sitting with the anxiety - he tries to argue it away and spends hours rocking in a chair stuck in his own head. So sad to watch. Most of the time he thinks he might have OCD but at times he really believes this is God dealing with him.

I found a support group about an hour a way once per month. Will try that this month. He has a good therapist and I am talking to someone to keep myself functioning.

So sorry about your son and so glad he has a mum who gets it - so fortunate. My son, though not currently employed, has now made it through university and is happy (which is a delight to see) - we are now working on the job part but it will come.

I appreciate that both you and Hal - when clearly you both have plenty on your own plates - took the time to answer. I REALLY appreciate it!

Megan

[Guest Sally44]

The fact that your husband could be autistic should affect the kind of therapy he receive. I know that the Maudsley hospital can provide therapy for OCD and also have experience of autistic spectrum disorder as a co-morbid diagnosis. I don't know if you could phone and chat with someone to see if a referral might be beneficial. Or if he does end up hospitalised, that it is at the Maudsley where he might get more appropriate support/treatment?

Being on the autistic spectrum can make some professionals 'opt out' of offering therapy, but don't be fobbed off. He should be seen by a medical professional and should receive the support/therapy he needs to help him manage and even improve with his OCD.

We have been told that CBT is not currently going to work with our son. But Clinical Psychology are still going to give some therapeutic advice to family/school around behavioural therapy. We were told that my son would not be able, at this stage [or possibly never], have the cognitive ability needed to be able to reflect on his thoughts/actions, or deal with the anxiety OCD causes. That maybe true with your husband? In which case a different approach maybe needed, tailored around his autism.

But you will have to fight to get the support he needs, and the appropriate professional input.

A service I found helpful at the hospital was PALS [Patient Advice and Liaison Service]. They contacted Clinical Psychology to find out why they kept refusing to accept referrals of my son. Once PALS contacted them they agreed to accept the referral [because that is what the NHS NICE Guidance says should happen!].

[Guest Sally44]

Sorry Megs, just realised you are in the USA, but again I would suggest ensuring that whatever professional is involved that they have experience of autism as well as OCD.

[Guest Megs]

Sally44,

Thanks for the thoughtful response. I will definitely keep my eyes on that one. I know everything is very different for my son (with ocd and Aspergers). His therapist is the one who brought it to my attention so I think they have been looking at different strategies.

Interestingly, we were able to see the Psychiatrist (up to now it was just a nurse practitioner) and he is removing one of the meds and increasing another. I definitely see a difference since they are weaning off the one med - his cognitive skills see to be improving a bit and he seems a bit more responsive. To early to know for sure but I am hopeful.

I hope your son is now getting the services he needs. My son is now 26 and he can, at this age, talk about how he thinks differently. He studied Psychology at University and he feels it gave him a little better understanding of us nuerotypicals

Have you gone on wrongplanet.net ? I found it soooooo helpful as I worked to understand my son and the aspergers.

Regardless, thank you! The support and thoughtful words are appreciated and will keep you both in my thoughts!