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.

Evenings from Hell

MARIE:  Almost two years ago, I gave up ‘proper’ work and was instead employed by our local authority as Jon’s carer. Back then, they assessed his needs at something like 11 ½ hours per week. There have been a few reassessments since, first to about 20 hours, then to 31 ½. Such a change in less than two years speaks unpleasant volumes about Jon’s decline and the strains his diseases now put on our daily lives.

 

The result is that I’m developing carer stress, and it’s making me less able to care in a good way. Stress (from caring or any other kind of work) makes you irritable, tired, unfocused, irritable, clumsy, forgetful, irritable … you get the picture. Recently, I was at an excellent talk by a woman who has worked with dementia sufferers for many years. One of the issues raised was how you can know when it’s time to take a step back from caring and leave it to the professionals. “When the carer is so burned out that he or she can no longer care with kindness” was one part of the answer. That’s so uncannily, precisely what I fear may be happening with us.

 

So I am taking a step back by leaving the nighttime tasks involving drugs and pump etc. to our local nurses. It happens too often for comfort that at the end of a long day of putting Jon’s needs before my own, I just haven’t the energy, physically or mentally, to deal with the madness that has become a regular feature of our evenings. What happens – not every night, but most nights – is that Jon gets one or two ideas in his head that he just can’t shake loose.

 

One is that he needs the toilet. Nothing happens when he goes, but the moment he’s back on the sofa or in bed, he feels the urge to go again. Since he moves very unsteadily at night and has epic battles to do up his trousers, this does not make for relaxing nights in. The other idea is that he wants his duodopa pump off, and he will keep nagging with increasing urgency and insistence, until he drives me to distraction or forces me from the room. The duodopa should be stopped as late as possible so that the effect of the slow release tablets he takes instead can last him until morning. At great cost to us both, we negotiated a truce to the effect that I stop the duodopa at 10:15 pm, but in the grips of his fixed idea Jon forgets the deal and forgets the logic, and I can’t reach him with reason. And seeing that I’m already irritable…

 

I’m sure there are better ways of dealing with this, but it’s clear that I can’t find them or carry them through at the end of a demanding day. So nurses to the rescue. Starting last week, Jon gets professionally nursed at bedtime, with an extra visit around 3 am for another tablet and a general check on his condition.

 

I hope that will be enough to bring us to calmer waters, at least for a time. As I write this, we are on a four-day trip away, which should have been a relaxing anniversary celebration in a wonderful German spa hotel, but is turning into yet another nightmare for entirely predictable reasons. We’ll have to accept that we simply can’t get by without nursing help anymore, and that means we can’t go away together anymore. One more loss.

 

I hope you won’t judge me harshly when I say that I want my life back. It's too much to cope with now. I’m very much afraid that this marks the beginning of the end of my time as a home carer.

Micro planning

MARIE: I’m away, and it’s great. Away as in on holiday, all on my ownsome, with no responsibility for anyone or anything. Just me and the cats and a pile of books and some gorgeous walks right outside my door for a whole, brilliant week. I picked this place based largely on a user evaluation that declared it a beautiful area and a well-appointed holiday flat, only too bad that the area was kind of boring with no people. YES, I thought, that’s precisely what I want and need.

 

An important bonus is that while I am off communing with nature and literature, Jon is well cared for and feeling quite content. It took some doing, though. I will admit to being a bit of a control freak, but preparations for this trip really tested my skills at micro planning and micro management.

 

Our care liaison at the local authority came round for a long meeting to determine Jon’s needs and to what extent they would be able to meet them. Quite a large extent, I am happy to say. He gets visits at 6 am to fit the duodopa pump, at 8 am to help with showering and dressing and breakfast, at 4 pm as a general check-up (which probably isn’t necessary), at 6 pm to serve dinner, and at 10 pm to disconnect the pump.

 

We had a steady stream of nurses and nursing assistants through the door the last few weeks before I left so that they could all learn how to work the pump, where things are kept, and what must under no circumstances be forgotten. I left them with prepacked drug doses, an appropriate number of home-cooked ready meals in the freezer, and numerous lists of phone numbers and appointments and key points and whatnot – some because I felt it was necessary, others because they asked me.

 

In the middle of all these preparations, it became clear that I was failing to teach Jon how to look after the cats, so further arrangements had to be made for people to come in and care for them during the first few days of my break, until I could make it back to collect the kitties.

 

By the time I finally got here, I so needed a break.

 

We parted on less than happy terms, I’m sorry to say. I needed to do a quick supermarket run before stuffing the cats in the car and setting off, so offered Jon a lift if he too wanted to get some groceries. He accepted, but turned out to want the electronics store rather than the supermarket. In fact, he thought I could just drop him there and he’d take the bus home. Now, 9 times out of 10, that would work fine, but what if this was that dreaded tenth time? What if I got a call half-way across the country to tell me that Jon had fallen down in the street, or got on the wrong bus, or lost his way, or gone OFF and been unable to move – all things that have happened in the past. So I wouldn’t let him take the bus. That pissed him off. So I took him to the electronics store and waited while he did his shopping. That pissed me off. And when it came time for me to leave, he was still too pissed off to say a single pleasant thing to me, even though I begged him repeatedly. Oh well, at least one of us soon forgot that. I really need to stop minding so much and just accept that he can’t help it.

 

I’ve talked to Jon several times since I left and have been relieved to hear that he is well and that the week has brought few challenges. He’d be happy to do this again, and so would I. I hope the nurses agree.

Wrong, wrong, wrong

MARIE: The more Jon needs my help, the more he resents it. I can understand that in my head, I can see how bloody painful it must be to realize that there’s one thing after another that you used to do as a matter of course, from zipping your coat to answering your letters, that you now have to leave to others. Or rather, to one other.  You can’t really direct your anger at a disease, and since Jon never believed in fate or any deity, that won’t work as a lightning rod either. So what’s left but to let me have it?

Not in an openly aggressive way (at least not since he frightened us both by shaking his fist in my face some months ago), but by saying and showing that everything I do, everything I suggest, is just wrong, wrong, wrong. I’m careless, controlling, moody, patronizing, childish, self-indulgent. If I try to tell him how I feel about things, he simply walks away. It seems to me that he has no use for me at all, just enormous, indignant need.

 

I asked him about his anger. Was he angry about not being allowed to drive? Yes. About being unable to work? Yes. Unable to read a book? Yes. Having constant back pain? Yes. Having to lug around his duodopa pump? Yes. Whatever I asked about, he was angry about it. Then I asked who he was angry at. Was he angry at the paid helpers? No, not really. Angry at his children or his sister? Certainly not. Angry at my family? Not a bit of it. Angry at me? YES, emphatically so. Why? For doing everything wrong.

 

This is not Jon. The man I met, loved, married, may have been stubborn and dismissive at times, but never angry or aggressive. What is going on?

 

It’s not about Parkinson’s anymore. This blog has changed over the last year or so. I’ve tried to keep a focus on Parkinson’s, like we originally intended, but PD just isn’t our main problem now. Which is of course partly because Jon is now fairly well medicated with the duodopa pump, so he’s physically better. Only as soon as one issue is dealt with, the next one rears its hideous head.

 

Now the greatest challenge by far is Jon’s cognitive decline. Ever since his diagnosis with Parkinson’s dementia a few years ago, he has chosen to ignore the signs and carry on regardless. I was taken aback at first, but came to see what a helpful strategy that was for him. Only now he’s come up against the wall and can no longer kid himself that all is well. I think that’s why the anger is erupting now, when his decline forces him to acknowledge his condition.

 

Nobody should have to know about themselves that they are slowly losing their faculties; that is the cruelest thing of all. But understand it as I may try to do, I still get terribly hurt and feel horrendously frustrated. I can’t even act natural around Jon anymore. Everything I say to him has been weighed and considered: will he understand? Will he misunderstand? Is the timing right? Is the wording right? Could I, should I go about it some other way?

 

I’ve talked to those who ought to know, and they tell me I’m not doing anything wrong, that dementia just takes some people that way. The anger may continue or it may go away, but there’s not a lot anyone can do about it. Well, we got Jon on anti-depressants a few months ago, and I wonder if upping the dose might help a bit, but I daren’t hold out much hope.

 

Yesterday, I suggested that he needed a bit of pruning, as in a haircut, a beard trim and eyebrow services. He said he’d only have the beard trim, and only if I did exactly as he instructed. I hesitated, trying to figure out a non-confrontational way to persuade him of the haircut. He got fed up and decided to do the job himself. So now he has a big bald spot on one cheek and a mouth still hidden under the overhanging thatch.  Hair like a man going feral, of course, not to mention the unibrow and the guitarist’s nails.

 

Why do I care so much? Why can’t I just leave it be, do as he wants, trim his beard for him and let him grow his hair long? Sure, it would look somewhat eccentric, but so what? Does his appearance reflect on me? (Yes, I’m ashamed to say that I think it does a bit, though it shouldn’t.) Is it worth the upset? Of course it isn’t.

 

So why am I nevertheless upset? I think it’s the sheer volume of passive aggression. This morning we even had a fight about tooth brushing. It’s getting ridiculous. I’m feeling stretched, undermined, rejected, unappreciated, frustrated. Sometimes I even feel a little bit abused. Sorry if I’m not taking that as well as I might. I reckon I need a break.

Woes and wonders

MARIE: We had a visit from a local authority worker to talk about our potential future needs for outside help with Jon’s care and how that might best be provided. Basically, I am trying to prepare for the time when it becomes unsafe for Jon to be left alone. I have seen many carers try so hard to be all things to their sick spouses that they end up running themselves into the ground and being no use to anyone (including themselves). I don’t want that for myself. The easiest option would be to apply for a nursing home place at that point, but I can’t see Jon thriving in a place like that, not least because of the language barrier. I don’t want that for him. So I’m exploring other options, specifically finding out what it takes to get funding from the local authority for us to hire our own helpers more or less round the clock. I know that option exists, and I know it’s very difficult to get approval for it, but I can dream and I can scheme.

 

So, a nice woman came round to explain the application process and our local authority’s view of who is eligible. She wanted to start a file on Jon right away, which I believe will be helpful for us later on, but which required us to go through in excruciating detail, for the umpteenth time, our entire history of woe. We had to lay out in full view all the things that Jon can’t do or finds it difficult to do, all the things I have to help with and keep an eye on, all the things we get assistance with and all the things nobody can ease. How do we feel about A, do we get terribly frustrated about B, and are we able to engage in C at all?

 

I see the need for the questions, no argument there, but it is SO HARD to have to focus on all the stuff that’s wrong, when normally we try our best to be blind to anything except the stuff that’s still right. Jon’s short-term memory is a blessing in heavy disguise, I guess, but I was down for days after this reminder of the challenges before us, both now and in the future. The future is not really something you want to dwell on with two degenerative diseases in the house, and yet you have to do what you can to prepare yourself, if not mentally then at least practically.

 

I wish there was a way to get help without actually having to ask for it.

 

On the definite plus side, we got new kittens. They’re impossibly cute and far to little to be without their mother, but heartless people just left them in a cardboard box for the cat sanctuary to deal with. Jon and I are their mummy now – and are in ruthless competition for their attention and affection.