I don’t know if this is the same for everyone else who has a partner with PD, but I’m going to try to explain what it’s like living as the other half, at least in our house, at the moment. I’d love to hear your views, your disagreements, your thoughts.
It may be different in other stages of the illness, or it may be different depending on the symptoms or the people involved. This is my own personal view of PD….
I feel like a sponge, soaking up all the things around MrP and Parkinson’s. His worries are massive; mine are too. They are the same but different.
I think there are three MrP’s.
And from one minute to the next, one hour to the next, I have no idea which MrP I will get.
And it’s only me who gets all three.
It’s like I hit my own personal 3 for 2 sale, where everyone else missed the offer and just gets one or two of him.
We all have moods, don’t get me wrong, and MrPs are swinging like a God-awful pendulum because of his own worries and fears.
MrP Number 1 – the one you all would see – socially or at work – is the lively, gregarious, hard-working, confident and inspiring MrP. The one with a terrible illness who is coping so bloody well. MrP Number 1 is, by far, the easiest to love. He laughs loudly, it sounds wonderful. Don’t get me wrong, we all have our ‘front’ face for the world at large, but the gap between the front face and the ‘at home’ face has a bigger gap, I reckon, when Parkinson’s – or other health issues, I’m guessing – play their unfair hand.
The second MrP is ill, tired, exhausted, worried, rigid, sad, vulnerable. His head feels like it’s going to implode. All of these come with the territory, I understand, but I can’t know exactly how he feels. He rests, sleeps, paces, spends time on the Mac, head immersed in music. He is calm, but uneasy, unwell. I understand and love him for trying so hard and understand he needs to rest and catch his breath.
The third MrP is a hijacker. A mood terrorist. I don’t know when the next bomb will be let off. The bombs seem to be urgent, something needs to happen quickly – a question answered, a problem solved. This is by far the hardest for me, the Sponge.
The hijackings seem to make MrP feel better – he’s let out his feelings, his worries, tries to get a question answered. But the trouble is, they make me feel far, far worse, and my equilibrium is shot until I pick myself up again. It is a time to dust myself down, and generally just cope.
Parkinson’s has put me in a place where I float at 40%. And I really want to rebel against that. I don’t want to be a 40 percenter now or ever. Yet 40% is pretty good for me these last few weeks. I go higher when I’m in the ‘normal’ world – when I am with the kids, do good stuff at work, or enjoy people’s company.
Without a doubt, Parkinson’s is debilitating and can be emotionally painful for the person with it.
But, am I wrong in saying it’s emotionally debilitating to the person who soaks the rest up?
Maybe I’m wrong, maybe I’m really, really selfish, maybe I’m a rubbish wife. I worry about so many things, that 40% is good. I celebrate this calm place where I am not mopping up my own fears and sadness.
(Blog update: I had written this blog over the weekend. After realising something in my 3rd blog in this little series, which I’ll post this week, plus we saw a great counsellor for the first time today, my percentage points have increased already. Hoorah!)