Decisions

MARIE: I hate the person I have become. I realize that I am severely stressed now, perhaps mildly depressed too. It’s making me care for Jon in a way that I don’t approve of. I am too emotional, cry to often and get angry too easily. I am ashamed of myself, yet although I know exactly what it takes to mend the situation, I have had such resistance in me against taking the next step. And plenty of resistance from Jon, too.

It’s harder and harder for Jon to be alone now. He wouldn’t agree and calls me controlling and overprotective, while I say his lack of self awareness on this point is part of the dementia. But it’s true, he’s often fine on his own – the trouble is that we can’t rely on him being fine every time. Part of my reluctance to return home is that I don’t know what I’ll find when I open the door.

Things go wrong all the time, big things and small things, things that matter and things that don’t. It’s not each individual mishap that grinds me down, it’s the sum total of them. And a fairly new complication is that Jon has taken to claiming that mishaps were not mishaps at all, but intentional experiments or somebody else’s fault. (Apparently this is textbook avoidance behavior, but that doesn’t stop it being a total windup at the end of a demanding day.)

We cannot go on like this, so we have boldly taken the next step. After a long and very helpful chat with our local dementia consultant, we have decided to start looking for a nursing home for Jon. One central question the consultant asked Jon was, would he rather have a happy wife who visits him often, or an angry, worn-down wife who nags at him all the time? The advice from all sides, which few people seem to take, is to make the move while the person moving is still well enough to make decisions about the place and to get to know the other residents and the staff – rather than wait until both the sick person and the carer are so worn down that the smallest disaster can force them into a hurried, traumatic move from which neither of them ever truly recovers.

Jon and I will try to be sensible about this. We’ll look at various options over the next weeks and then decide where he will apply. It will most likely be quite a few months before a place is offered, but starting early means we can afford to wait for a really good unit.

Knowing that we have taken the first step down that road is a source of sadness and disappointment, because it was NOT supposed to be like this. But at the same time it is a relief and a weight lifting from, I think, both our shoulders. Maybe it also helps that I’ve just started on anti-depressants. I’ve always said that I wasn’t about to start taking drugs because my husband was ill, but I think I need a little relief to carry me through the next several months. Wish us well, we need it.

Old year, new year

MARIE: The 1st of January is a day for looking back at the past year and forwards to the new. Not sure that’s what one really wants to do with Parkinson’s and dementia in the mix, because what will you see in the past year but deterioration, and what can you look forward to but more of the same?

 

Nevertheless, the past year did include some high points, like Jon’s 60^th birthday in April when the whole family came over from the UK for an elaborate two-week celebration. He had a fantastic time and enjoyed seeing them all together, even if he did find all the activity rather challenging. My 50^th birthday in August was a shorter celebration but with far more people, so by common consent Jon opted out – which was the right decision, but sad nonetheless.

 

2013 was also The Year of the Pump, in that Jon got on the duodopa just over a year ago. It’s turned out to be more work to maintain the pump than we expected, and to be honest the symptom control is not as great as we had hoped, but all in all Jon finds the duodopa is still vastly preferable to his old oral drugs. With the latest adjustments to dosages and the latest addition of nighttime nursing services, we seem to be in reasonably calm waters Parky-wise – although rather sadly, travel has become harder now that we have come to rely on the night nurses.

 

For me, 2013 was The Year of the Book, because I spent much of the spring giving talks about the anthology of carer stories I edited for the Danish Parkinson’s association, and because I got stuck into the writing of my next book, which aims to be a collection of practical advice for carers. At the same time, I have become increasingly frustrated with the fragmented nature of my voluntary work, so have decided to ditch a number of small engagements in the new year and gather my energy into a big push in one major engagement – more of which later.

 

I expect 2014 will also be the year when we have to look seriously at our living arrangements. There are still opportunities for adjustments at home, but sooner or later we'll reach the point where it's better for both of us if Jon moves to a care center. I must admit I sometimes dream of being free from the million small and large care tasks and being free again to simply enjoy spending time with Jon, maybe going for a little walk, maybe just holding hands on the sofa while we listen to the radio. Simple things that are surprisingly hard when you feel snowed under with the practical demands of the day.

 

But I dread the decision. I know carers who waited too long, who wore themselves down to the point where they were unable to care properly at the end. I don’t want that for us, but nor do I want to end our life together too soon. I know it'll have to be my decision in the end, because the dementia stops Jon from reflecting rationally on the situation. Bloody hell, but it’s a hard one!

 

So all in all, the new year sees me in rather subdued mood (Jon not so much, he's got his happy pills working wonders). There are challenges ahead, but we are fortunate to have good support and – very importantly – understanding from our family on both sides of the water, so whatever comes I’m sure we’ll manage somehow.