Trapped


#1

My husband was diagnosed ten years ago, when he was 49.  Physically, he has actually improved in the last year, due to changing his treatment centre and his drug regime.  His previous doctor ignored everything I told her and only started to listen when the other hospital’s investigation showed I was correct.  All I have ever done is be supportive, proactive, caring and, until recently, loving.

My problem is not the Parkinson’s, although it is probably responsible for him no longer being able to put on the social persona veneer he used to.  He would be the life and soul of the party, and tell people, including medical professionals, how well he was (even when he was having strong visual hallucinations). 

Although he is no longer taking the medication that caused these, he has real conversations he cannot remember, and imaginary conversations that he believes are real.  He does things he does not remember, recently leaving his key in the front door lock on one occasion, and locking me out of the house on another, amongst many others.  These do not worry him and, once he has been told about them, he does not give them another thought.

He has undergone psychometric testing in the last week, the second time this year.  The cognitive disorder team, that we have had one consultation with, were hopeful he would show some improvement similar to his physical improvement, despite me saying the opposite.

It was no surprise to me that the results showed further deterioration since his first test in March, and his ability to recognise facial expressions/emotions was poor. 

He cannot, and is totally incapable of being able to, empathise, sympathise or even try to put himself in someone else’s shoes, and admits this.  I now realise he has been like this for the 30+ years I have known him, and probably all his life.  He honestly does not care, and is incapable of caring about anyone other than himself.  Throughout our marriage his response to my attempts to discuss things has been total silence, which is emotionally abusive, although I have only recently understood this.  Others in his immediate family (mother, sister, nephews and niece) seem to be the same.

I have often said there has only ever been one person and one parent in our marriage.

I do understand it is not his fault, just as it is not his fault that he has no sense of smell.  That does not help our adult children or me.  It is not our fault but we are having to live and cope with it and its consequences.   What has made it even more painful is that some of my close family refuse to believe he has fooled them, so have been very unsupportive of the kids and me.  It is hard to realise you have been taken in by someone for years, I know!

Our son (28) developed Atrial Fibrillation, partly or wholly caused by the stress of his father’s condition.  His father’s reaction, “What does he have to be stressed about? I’m the one who’s ill.”

The hardest part is that my husband does not believe there is anything cognitively wrong with him. Luckily for him, he is quite content sitting and doing nothing, especially as he has no friends, hobbies, interests or goals.  I might as well be living with a cardboard cut-out, and I do resent it.

He has hidden very important mail from me – I have had to invest in a lockable, wall-mounted letter box, just to make sure I can manage the household accounts without unpleasant shocks.  He has also hidden personal and very precious items of mine.  Every week I find something else he has hidden but am still trying to find others.

There is so much more, including not talking to our daughter, now 26, for four years when she was  aged 14 – 18.

We are all being offered emotional support but it will mean nothing to him, and I do not need emotional support or caring strategies.  I need a way out that will give me back my life and for him to be well cared for somewhere where he will not emotionally hurt anyone.

I do know that Pd can cause a decrease of facial expression and ability to show emotion, but how can there be a decrease in something that is not there in the first place?

It is a nightmare that I would not wish on anyone.  For what it’s worth, the kids and I have very high levels of empathy according to the Empathy Quotient in Simon Baron-Cohen’s, Zero Degrees of Empathy, which is probably why I have been able to stay with him for so long.

I do have a wonderful network of support, (family and friends) and I do feel very lucky in many ways.  I find so much to be positive about and get enjoyment from so many different things.  But I do feel completely trapped in my life with him and it is increasingly difficult.

What a way to start writing on a forum! 


#2

Wow, that's a lot of anger pouring out. Sounds like a cry for help! 

Has he ever been tested for Autism / Aspergers? sounds a lot like it. (I work  in that area)

  • Lack of empathy (Son's illness)
  • inability to understand others emotions / facial expressions / body language
  • Difficulties with social interaction
  • Difficulty with social communication
  • obsessive behaviours (Not talking to someone for four years)
  • Anti social behaviour (Hiding your special things)
  • Controlling behaviour (needing everything his way)

I know PD can be a dreadful thing to live with and in  my case have, but that doesn't explain his behaviour over all the other years of your marriage, Time for a short, sharp, shock? you need to think about your own health both physical and mental, Perhaps it's time for some space and thinking time, do you have somewhere to go, for a while. It may be the wake up call he needs.

Whilst you  continue to be loving and caring and tolerant of his behaviour, there is no need for him to change is there?

He needs to know, very clearly, what he is putting at risk.

Caroline.


#3

Caroline, thank you so much for taking the time to respond to my post.  I really appreciate that you have, and you are right about the anger.  A long walk in the rain washed that away for now!

I agree that many of his traits fit the spectrum but others do not, including his ability to put on a public persona for prolonged periods.  I suspect he has a type of narcissistic personality disorder.

I tried the "wake-up call" before I understood about his zero empathy.  It meant nothing to him and, to be honest, he is incapable of changing.  His attitude is that as he doesn't understand it and it's not his fault, there's nothing he can do so why should he have to do anything?

That really does say it all and I do know the only way forward is on my own.  That is one big scary step but I have no other choice.

 

 


#4

Ceebs,  I discovered your post while searching for links between autism and Parkinson's following the recent research suggesting this.   I appreciate it was two years ago and a lot could have happened.

If you are aware of Baron-Cohen's EQ assessment, you probably also know of his AQ assessment for Aspergers. Regarding the second paragraph of your second post, it's worth noting that every autistic person is different and we do not all display all of the classical symptoms.  There is such a thing as an "extrovert Aspie" and I speak from personal experience.  Many autistic people are able to demonstrate a public persona (Winston Churchill, Bill Gates.)  The difference is that in neurotypicals  this comes naturally, and in autistics it has to be learnt and practiced - which can make some Aspies rather good at it.

I don't know whether this is relevant, but there is an alternative view of empathy, that autistics experience no less empathy than others, but the complexities just seem too overwhelming to rationaise and express. That's how I feel.

If your husband is left-handed or has always been fussy or faddy about his food, those might suggest autism as worth investigating.   I hope this is of help to you.