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.

Cats

MARIE: I meant to write about one of the subjects I briefly trailed last week, but you’ll have to wait for that. Because foremost in my mind this week is that our cat has died. He’s been sick with chronic kidney disease for years, only he didn’t know, so carried on regardless almost up until the last moment.

 

Weirdly, Jon and the cat got their diagnoses at roughly the same time. Jon’s came first, and although it’s obvious in hindsight how naïve we were about Parkinson’s, that naivety helped us to handle the diagnosis calmly and sensibly. But when a few months later the cat had an ultrasound (which involved shaving his stomach, and let me tell you: a cat with no stomach fur looks and feels pretty damn silly), the vet said he’d never seen a cat functioning so well with so little normal kidney tissue – and told us to expect a lifespan counted in months rather than years. That broke the dam for me, and all the angst and despair over Jon’s diagnosis came flooding out over the cat’s prognosis. I guess it was less scary to allow myself to be upset about my cat than about my husband.

 

As it happens, both the doctor and the vet were wrong. As you know, PD meds did not help Jon to live “an almost normal life” for years after his diagnosis, but the cat was still going strong six years after his death sentence. Nothing good lasts forever, though, and this week was the end of the line for the cat. As predicted, he went downhill suddenly and fast, which was a relief. When the time came to call on the vet one last time, there was no doubt in our minds that the decision was the right one.

 

Jon was at the Oak House when I realized that the kindest thing would be to take the cat to the vet, but I just couldn’t face doing it on my own. I waited for Jon, and as soon as he came home, we set off. In the car, Jon said to me that he was glad he was at least useful for something, which was really such a very sad thing to say. It is true, I do (or farm out) all the practical jobs around here, and our conversations no longer have the intellectual playfulness or depth of the old days. But I depend on Jon for emotional support (and also for laughs and physical affection, but that’s a different story). In a weird way, it was good to have the cat crisis to demonstrate that to him.

 

We took the cat home with us afterwards. I had chosen a spot under our walnut tree, and the physical work of digging the grave did me good, one last thing I could do for him. Jon didn’t have the balance to help me dig – standing on one leg and pushing down on a spade with other was way beyond him – but we did bury the cat together. And Jon has been so sweetly solicitous of me these last few days as I’ve moped around missing my kitty. Many hugs and a fair few tissues have come my way. I know it’s “just” a cat, but we had 11 funfilled and cuddly years together, so there.

 

He wasn’t a cat person when we met, but Jon now agrees that this house needs cats – in fact, I believe that cats make the difference between a house and a home.  We are thinking of getting two kittens this time, and (typical!) I’ve already started worrying how they’ll treat Jon’s constantly twitching diskinetic toes. They look like prey to me!

Missing you

MARIE: It’s been ages since we’ve blogged. In a reversal of roles, Jon has been nagging me lately to get started again, and I’ve been meaning to for weeks, honest I have. Things have been busy here, but not so busy I couldn’t have found the time to blog. But I’ve had various frustrations on the volunteer work front, and I guess that drained me more than I realized. Last week, though, I had a few days away to sit quietly and think about my priorities and the balance between what I have to do and what I want to do. Well, one thing I definitely want to do is write this blog, so here (at last) we are again.

 

The previous post listed the many events and visits we had coming up, most of which are now behind us. A highlight was Jon’s 60th birthday, which he celebrated in regal style with several weeks of festivities. We had two weeks of staggered family visits from the UK, a lovely dinner out at a meat temple of Jon’s choice on the birthday itself, and a big party on the day the Danish family came down too.

 

That last event proved perhaps a bridge too far for Jon. He’s not good in crowds any longer – it’s both the sheer amount of sensory input that throws him and simply the speed with which party conversations move and skip from topic to joke to interruption. So although he enjoyed seeing how well we all get on with each other, and also consented to suffer the dual indignities of having birthday songs sung at him while adorned with an enormous medal proclaiming him to be “40ish”, he did spend quite a bit of time resting in his bedroom.

 

Before they came over, I had talked to Jon’s children, sister and first wife about making it a joint project to create a poster for him of all his life. He was 40 when I met him, so that’s hardly a task I could take on alone. They all brought loads of old photos which Jon had great fun looking through, and then together we picked out the high spots and the crossroads of his life, with pictures to match. Embarrasingly, the material is still sitting on my desk waiting to be scanned and organized, but I’ll get to it soon (priorities, right?).

 

The purpose of this This-Is-Your-Life poster is threefold. First and simplest: it’s fun, and who wouldn’t enjoy such a gift? Second, it will help Jon to remember the whos and whens and wheres of his life if his memory should fail him. And third, it will be an aid to any outside nursing or care staff to get to know Jon, which is especially important given the language barrier he lives behind. For as long as I have known him, he’s been impossible to buy gifts for, but I’m confident we hit on a good one here.

 

Later, I must tell you how we are getting on with the local nursing service, why my volunteer work was getting me down, how well Jon is doing after his latest medication adjustments and additions, and what we did on our holidays. Enough for now, though. Talk to you soon.