Freedom

MARIE: I’ve just got back from taking Jon to the airport. He’s off to spend a week with the kids in England and I’m sure I speak for both of us when I say yippie!

We used to spend quite a bit of time apart each year before Parkinson’s invaded our lives. We both traveled for work a few times each year and also regularly took separate trips to visit family and friends. In all, we’d maybe spend a month or so apart per year.

And we both loved it. The one going away would naturally be looking forward to whatever awaited, while the one staying home cherished the chance to keep the place exactly “as it should be kept”. Jon would spend his time home alone living in what I would define as deep squalor, while he thinks I kept the place as sterile as a show home without him around to inject a bit of a lived-in feel. Anyway, we would both look forward to the going away, and towards the end of it we’d both start looking forward to the coming home. Those were the days.

Now, of course, neither of us even leaves the house to go to work. Jon doesn’t work at all, and any work I do is mostly done from home. We’ve been together 24/7 this entire summer. Okay, we have separate bedrooms because of Jon’s REM sleep behaviour disorder, but you know what I mean. 24/7. That’s a lot of hours.

There was a program on BBC radio 4 yesterday about the depiction of carers and caring in literature and music. Someone said (and I ought to have made a note of who) that caring deepens your love for the one you care for. That’s certainly true for us. I care for Jon because I love him, and each act of caring confirms the love and strengthens the bond. There were times early on when we both wondered whether we would last the distance together, but there’s no question now that we will.

Nevertheless, a break is wonderfully welcome. I’ve just re-read Hugh Marriott’s excellent book The Selfish Pig’s Guide to Caring which emphasizes the importance of respite care. Not for the sake of the cared-for person (or piglet, as Hugh would have it), but for the carer to draw breath and be a bit selfish just for a little while. I am really beginning to see the point.

With the summer holidays over, the four or so hours Jon spends at his Danish course four days a week serve as my weekly respite, and I get such a lot out of those hours – both in terms of getting things done and in terms of relaxing and not thinking about Jon for a while. As I wrote that last sentence, I realized that Marie of 5 years ago would have absolutely no idea what I could possibly mean by “having four hours off from thinking about Jon”. This caring business is a slippery slope.

So thank providence for Jon’s wonderful daughter who is doing us both a huge favour by having him to stay for a whole, glorious week. I hope they have a wonderful time together and will want to it again and again. I know I’ll have a marvelously selfish week. And I’m sure I’ll really miss Jon by the end of it. How perfect is that?