A wounded Parkinson’s soldier

I don’t quite know where to start. I always want to be respectful to MrP. He’s a good man. He’s a human being and I like human beings, generally. I think most are pretty damned fine people.  MrP is doing brilliantly at work. Most people see him handling this Parkinson’s thing brilliantly. Hats off to him, big respect.

There is just one fly in the ointment. He is very angry. With me.  Few people see this. His paranoia has come back in droves. He suspects I am having an affair, if not several of them. My emails and phone texts are all found to have meanings in them. He looks at them alot. He thinks I lie to him. My work twitter is apparently in code. (I have stopped tweeting. I love talking to people in my work community, they are great fun and just like a good natter, but it distresses him too much. MrP’s closest friend suggests I carry on, but I don’t like the arguments it can cause.)  He has seen me do things twice, that I know of, that I have not done.

He is angry that I am not a doting, loving wife. Yet how can I be either of those things when I have no idea when he’s going to start the next argument or disagreement – about what I’m doing wrong? I’m wary, all the time. I’m in tears several times each week; I have no idea what I can do to stop him being frustrated with me, when I’m not doing anything differently (except getting defensive and cautious). When we can’t even talk properly at the moment, in case we trip on a danger word. When he can see bad in anything I say or do.  When, if he reads this, he’ll see more lies.

He, the man who would have happily moved on with life if I’d left him a few years ago, must surely be a scared boy inside. But he’s making being here so painful. It’s hard to function properly when your husband – and father to your children – thinks you’re a liar and a cheat. It’s hugely hurtful, distressing and depressing. Because I’m not either of those, and frankly, they just go against the grain of my values. And worse than all this? It’s distressing the kids. And that just hurts so much.

But his anger to me is always nearly there or right in front of me. And so the cycle starts. How can I be loving and doting to a man who has just accused me of being a liar and disrespectful to my family – when they are everything to me? My behaviour before all this was never questioned. He knew I was trustworthy and kind. Now? I’m apparently neither.

We have conversations – or horrible arguments – and he puts 2 and 2 together and quotes me back the terrible things I apparently said.  We have rows, where we both say things we shouldn’t – we are completely new to this situation – but mine are used as evidence later.  I now feel he’s telling people that I am mean.  He says I bully him.  I know he’s told several that he suspects I’m having ‘liaisons’.  The grapevine is in action; others have heard. Even I am starting to get paranoid – who is he telling about my ‘lies’ or the ‘horrible’ things he thinks that I say and do?

I have never felt so lost. My daughter, my lovely daughter, when we were hugging because she saw I was upset said, “no one has a road map for this one, Mum”. She’s right. I have no idea what to do, how to proceed. I feel terrible that my children are comforting me, when I should be a rock for them.

We’re on about every other day at the moment, where he’ll be pleasant during the day and then chuck a little grenade or a big bombshell in the evening.  I go into defensive mode.  I really don’t like dissing MrP. He’s a human being and one of the things I do understand right now is that we just aren’t helping each other. Toxic is the word that springs to mind. He is poorly, and bottom line is that the drugs or the illness are making him into someone that sees me differently.

It’s not his fault. He didn’t ask for this. It’s very sad.

He wants me to be caring and loving. I want him to be caring and loving. What I always come back to – much to his dismay – is that his actions showed he didn’t give two hoots (that’s the polite version) about me before Parkinson’s and now he wants an instant return from a loving wife.

But from my perspective, it’s like putting no money into a savings account, and expecting it to come up with retirement funds.

I think the scariest part for me right now is that he is utterly convinced he is right. And I am unable to convince him otherwise.

Especially, when he finds far more comfort – and I can’t imagine how hard this must be – in thinking his brain is working well and mine isn’t. Let’s face it, it’d be far easier for him, if I said, ‘yes, you’re absolutely right’. That would be a strange comfort for him. I can see him jumping with joy at the thought of it.

Yes, I have struggled to get my head around Parkinsons and our new situation. Yes, I am struggling to be devoted right now.  I am far from perfect, I know I have not done this thing like Mother Teresa. But I’m trying to make good and right decisions all the time. I haven’t run and we did have spells where everything seemed like it was heading in a good direction. But MrP is throwing grenades at me – not at Parkinson’s or work or anything or anyone else – he’s throwing them at me. Far too frequently.

How is a wounded medic supposed to look after a wounded soldier who threw the bomb?

I am just asking for some time to figure things out without pressure, but that’s like a maelstrom going off in MrP’s head. I understand he is not well and the pressure must be truly, truly awful.

I know he’s poorly. I can look at this from an outsider’s perspective and see it’s terrible for him. He’s not well, I should take the high ground and be a better person.

The trouble is,

I can’t begin to get to the high ground when I keep getting shot down.

Postscript.

I have thought long and hard about posting this blog.  I do not want to disrespect MrP – or anyone else with Parkinson’s.  Indeed, I had posted it, took it down again. And here it comes up again.

Part of me thinks its wrong to put it online, but on the other hand, I need to write about my MrsParkinson’s journey.  I have more to say, more developments to write about, and the writing helps me heal.

Yet, more than that, when I had an email conversation recently with a gentleman who took DA’s for years, it felt like a light had been switched on in my dark room.  It seems better to post it so that anyone else can tell me they understand or don’t understand, they are angry with me for writing such things, or even better, find comfort because they feel they’ve been in the same dark room, and now with our joint light switched on, they can see others in here too.

Two lovely friends sent me links below that are extremely useful to understanding this problem better.  It appears to be far too common with certain Parkinson’s medication.  I reiterate. MrP is brilliant to everyone else around him.  He is a good man.  He has never been like this before, this isn’t the real him.  But it’s not a massive consolation, when our little world has turned upside down.

http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=treatments&topic=dopamine-agonists-and-catastrophic-obsessivecompu

http://www.mind.org.uk/help/diagnoses_and_conditions/paranoia

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About Mrs Parkinsons

Views of family life and Parkinson's Disease, from a should-be-less-selfish wife. This might not be pretty. Find me on Twitter @MrsParkinsons
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6 Responses to A wounded Parkinson’s soldier

  1. Dr. Paul says:

    It’s called “Othello syndrome” and can be related to the drugs used to treat the PD. It makes no sense and is very painful for all the reasons you cited. I did a short blog on it about a year ago: http://theparkinsonscoach.com/2011/01/14/othello-meets-parkinsons-disease/
    For the sake of your sanity, it should come up in the next visit to the neurologist. This is a medical problem that can be treated.

    • Dr Paul, this article is incredibly insightful, thank you. I’m glad people can read it here too. I feel a little let down, if I’m honest, by the medical system so far. MrP is happy with it, so that’s good. I must write more on my blog soon, things have moved on. I’m just conscious of doing everything as fairly as possible for MrP. Thanks again, MrsP

  2. Oh my. I am sitting here in TEARS because as I type, I am experiencing word for word what you, Mrs Parkinsons, have been going through. I have been going through this for about 7 months now, with 4 young children and one on the way. I LOVE my husband and have been devastated at the accusations and suspicions that surround me and ONLY me. I am his biggest ally, but yet in his eyes, am his biggest enemy. I have been fighting to save my marriage for months, but can’t seem to get the drs or anyone to help me. This is so terribly helpless. I would really love to get in contact with you, via email if that would be possible. For the first time ever, I feel I have found someone who can legitimately relate to my pain.

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