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!