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?
29 August 2011
08 August 2011
Safe hands
MARIE: Today Jon had his second neurology appointment after moving to Denmark. You may recall that at his first appointment, the neurologist concluded that he is a complicated case and decided to send him Upstairs. Not to meet celestial management, but to see the real experts at the day hospital specializing in Parkinson’s.
So Jon was seen today by one of the very top people in the country when it comes to PD. We recently heard her speak at a research meeting arranged by the Parkinson’s association and were greatly impressed. I had hoped, but not expected, to see her again so am very pleased indeed that she will be Jon’s neurologist. Okay, pleased and also concerned, because this evidently means that Jon really is a complicated case. Which is shitty, but having it confirmed doesn’t change the facts of his condition. The main thing is that we both feel confident that if anyone can sort Jon out, she’s the one.
We have returned home with yet more medication changes, and are now waiting for Jon to be called in for a new MRI scan (his last was in 2007 and was used to diagnose the PD) and a neuro-psychiatric evaluation because Jon feels that cognitive changes are the most bothersome symptoms right now – that includes his poor short-term memory, difficulty concentrating, reduced analytical abilities, and trouble finding the right words (spoken and written, which is why I tend to write more blog posts these days).
In terms of the medication changes, we had been trying hard to discern a pattern to Jon’s day and match his medication intake to his wellbeing at different times. Without success as his condition seems to fluctuate pretty randomly, to the extent that at times he has symptoms of Parkinson’s, i.e. too little dopamine in the brain, at the exact same time as he has dyskinesias, which indicate too much dopamine in the brain.
We just couldn’t understand it. But the neurologist could: Jon’s recent DAT scan shows that one side of his brain is more affected by the disease than the other, so he’s been getting too much dopa on one side and not enough on the other! This is related to the quick release tablets he’s been taking, so the plan is to shift him almost entirely on to normal release tablets which should even out his condition considerably.
I so hope that works, because I don’t mind telling you these last few weeks have been pretty miserable. And wouldn’t it be wonderful if there’s also something that can be done to treat the cognitive problems?
So Jon was seen today by one of the very top people in the country when it comes to PD. We recently heard her speak at a research meeting arranged by the Parkinson’s association and were greatly impressed. I had hoped, but not expected, to see her again so am very pleased indeed that she will be Jon’s neurologist. Okay, pleased and also concerned, because this evidently means that Jon really is a complicated case. Which is shitty, but having it confirmed doesn’t change the facts of his condition. The main thing is that we both feel confident that if anyone can sort Jon out, she’s the one.
We have returned home with yet more medication changes, and are now waiting for Jon to be called in for a new MRI scan (his last was in 2007 and was used to diagnose the PD) and a neuro-psychiatric evaluation because Jon feels that cognitive changes are the most bothersome symptoms right now – that includes his poor short-term memory, difficulty concentrating, reduced analytical abilities, and trouble finding the right words (spoken and written, which is why I tend to write more blog posts these days).
In terms of the medication changes, we had been trying hard to discern a pattern to Jon’s day and match his medication intake to his wellbeing at different times. Without success as his condition seems to fluctuate pretty randomly, to the extent that at times he has symptoms of Parkinson’s, i.e. too little dopamine in the brain, at the exact same time as he has dyskinesias, which indicate too much dopamine in the brain.
We just couldn’t understand it. But the neurologist could: Jon’s recent DAT scan shows that one side of his brain is more affected by the disease than the other, so he’s been getting too much dopa on one side and not enough on the other! This is related to the quick release tablets he’s been taking, so the plan is to shift him almost entirely on to normal release tablets which should even out his condition considerably.
I so hope that works, because I don’t mind telling you these last few weeks have been pretty miserable. And wouldn’t it be wonderful if there’s also something that can be done to treat the cognitive problems?
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