I lost my place in the book

THIS morning I feel like I've lost my place in life, as if my bookmarker has slipped out and I can't remember what page I was on. The only thing to do is to look for the crease, and page back and back until something looks familiar.

I wanted to make this entry about today's dare, but to be honest I haven't even read it yet. I've been sidetracked for several days being overwhelmed with the window painting project.

God. I am so tired of projects.

I want to tell everyone to go away; that I'm tapped out. But I've made promises, and I have to keep them. And even now they're disappointed that I don't work fasterfasterfaster. I am exhausted, and it shows in everything I do. For the last two weeks I've fallen asleep earlier than B even; half the time if I haven't had a coffee late in the day he comes in from the garage to find me slumped over in a chair, out cold. I feel like we are two ships passing in the night. I am gone, and when I'm not, he's out in the garage. It's really been bothering me.

We had the mother of all arguments last night, and I'm still smarting this morning, brushing my teeth with Colgate and tears. If anyone asks, I tell them I've finally caught the cold my daughter brought home. (Hey, it could be true.) The reality of it is that I'm ashamed of some of the things I said last night, ashamed of the fact that by the end of the argument he shuffled like an old man down the hallway to have one last smoke before he collapsed in to bed, completely beaten. I couldn't have done a better job of it had I taken him out back and worked him over with a baseball bat. But there were things that needed to be said, needed to be hashed out. How do you argue with someone when you know that you're hurting them physically by causing them stress? Do I just stuff everything that needs to be said, in fear of upsetting him? It's what I've been doing. But if we argue, he's the one that goes to bed ill and I'm the one left up pacing the living room, feeling like I've just deliberately run over someone's Grandma in the parking lot. How do other PD couples reconcile this?

The argument began, as arguments do, on one subject, and segued into something far further below the surface. The substance of our existence together will always be colored by B's PD. It's a fact, if a discouraging one. Still, it's just a fact. But it means that when we talk about things like his retirement and his disability, etc. that I begin to think about my own. I asked him this time how long he wanted me to work. I meant, of course, after things start to get bad. He said that he expected me to quit work when I retired, at 65. Well, folks.. .given that he's got 13 years on me, that would mean that he would be experiencing significant impairment (or so we predict, if one can do that) for several years before then. At 78, one can expect impairment from sheer age, much less the PD.

"But what happens when you get to the point when you'll need care?"

"My L&I settlement provides for a home health care aide." He stood there with his arms folded. I got up to move towards him and he stepped back.

I'm sorry, but that hurt. I tried to joke it off, as I always do. "What, I'll just go off to work all day and leave you here in day care?"

"Well, ... yes." He frowned at me, fixing me with that piercing 'B look' that means that his is the last word. I was sitting there shellstruck, searching for ways to process the change of my whole future as I had planned it. I listened as he told me that he wanted me to go on about my own life, that he thought it would be best to keep things 'completely separate' in that respect. That he didn't really want me to be his caregiver.

"You mean... you'd prefer a complete stranger came in and... did things for you?"

"Yes."

I felt like someone had pulled the rug out from underneath my whole life. I never in a million years expected him to say that. So, where is my role in all of this? Am I the temporary diversion, here until he feels bad, after which he'll summarily eject me from his life? Or worse, fade further and further away until we remain ghosts passing in the same house?

"I don't know what to say..." I ventured, and with that, he slapped me with the same old saw.

"So finally the reality is setting in."

No... reality set in over a year ago, when I looked at this man, this wonderful beloved friend that I'd cherished for several years, and decided that I wanted to make a go of this blessed life. I took him despite his diagnosis.... he took me despite my baggage and my exes and my kids, and I thought we were making the best of things and having a great time. All of us, kids included, have looked at this reality and have been making small adjustments to our paths to accomodate where the PD will take us, because we love him. Because we can't imagine life without him here.

I understand that the depression and the self pity spiral are part of the disease too, but it's the rejection that hurts me the worst. Does he mean it? Is it just the PD talking? How do I know?

More importantly, how do I steer my life from here? Am I expected to create a whole totally separate life from ours just so I have something to fall back on when he's gone? Do I get a choice in this??

Can't I page this book backwards a chapter or two? There's got to be something I recognise. Some familiar ground somewhere.