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.

New best friends

MARIE: Two weeks ago I wrote about the difficulties of teaching Jon to handle the duodopa pump himself, leaving me with more maintenance than I had counted on. Four weeks ago I wrote about how his frustrations at the diseases sometimes turn to aggression directed at me. I am very happy to tell you that I now have two new helpers who promise to bring relief to one issue each.

Firstly, the frustration. I know – I’ve read, I’ve been told, I can work out for myself – that someone with cognitive impairment is probably incapable of changing his behaviour. So, to stop Jon becoming frustrated, we have to find his “triggers” and teach me how to avoid them or how to deflect and defuse potentially problematic situations. To that end, I have talk to a very capable and knowledgeable woman whose job title I don’t know how to translate – something like neuro-behavioural-development consultant. What she does is go out and talk to the carers for people with problematic dementias to help us learn to act and react in more appropriate ways. All the relevant people have said this sounds like a good idea in our case, so now I’m just waiting for the paperwork to go through. I’m hoping for a long and fruitful relationship.

Secondly, pump maintenance. A further two weeks in and we’re essentially no further forward with teaching Jon the pump. I don’t have a problem with getting up to fit the pump every morning at 6:30. I don’t mind helping Jon get it on and off when he has a shower – and on those occasional mornings when I have to leave early, it won’t kill him to skip the shower. But I was beginning to feel very constrained by the need to be home every evening no later than 10pm to take the pump off. This was mostly in my head, because I’m actually rarely out till late. We’re talking maybe half a dozen times a year, when I’m invited to something that Jon prefers not to attend but that I want to attend until the very end.

What triggered my frustration was an invitation to the traditional January party of a group of wonderful women I’ve known since university. I had offered to bring the dessert, but now I was realizing that I’d probably have to leave before it was even served in order to set out on the hour-long drive home to my pump duties.

As luck would have it, that same morning we got a visit from the home nurse who comes once a week to inspect Jon’s stomach tube. I mentioned my frustration. She told me a nurse could come to sort out the pump if we liked. I asked how long in advance we’d have to book such a service. She said as early as possible to help with their planning, but “if you’re out and suddenly realize you’ll be late, or if you’re stuck in traffic or something, just ring us and we’ll pop round to sort it out”. Isn’t that just the most amazing service? I was so happy and relieved I wept!

I think we’ll use the night nurse about as often as we use the disabled parking badge, which is to say roughly once in a blue moon. But it makes the most enormous difference to know that the option is there the moment we really do need it. I feel like I have my freedom back, and I think Jon is pretty content not to have to feel guilty about dragging me away from my occasional pleasures in the big city.

Good news and bad news

MARIE: We're back from hospital, now with the duodopa pump. It went well, on the whole. The specialist nurse is an absolute marvel, very knowledgeable and personable and magically available. Most of the others were kind and efficient, though rushed.

On the first day, Jon got a tube stuck up his nose, down his throat and into his stomach. That was, as promised, the nastiest part of the entire experience (especially since the procedure had to be repeated twice for technical reasons). That done, a few days were spent teaching us to work the buttons on the pump and fiddling with the dosages, which can be very finely tuned. There is a morning dose to get Jon started, a background dose throughout the day and evening, and an extra dose that can be taken as needed in anticipation or reaction to anything stressful or strenuous (such as having a shower or going shopping).

That settled, everything when quiet over the weekend, with surgery set for Monday morning. As lots of people were sent home or sent on for the weekend, I managed to get Jon moved to a window slot for an excellent 6th floor view of snowstorms over Copenhagen.

Surgery was to insert the PEG tube through which runs the inner tube delivering drugs direct into the duodenum, which is where L-dopa is absorbed. All went well and Jon was soon back in his room. He was fine a first, but when the local anesthetic wore off, it got pretty uncomfortable. So they gave him morphine for the pain and left a sleeping pill on his bedside table, just in case. The trouble was, he woke up about 3:30 am and took the sleeping pill - far too late, of course. So that first morning was quite scary. His blood pressure was ridiculously low so his legs simply gave way several times, and he talked the most complete nonsense. I was very glad to have both the specialist nurse and my sister, who is also a nurse, there to deal with the situation and assure me it was a passing problem. Indeed, after a very long nap, Jon was entirely himself again.

So after a few more days of pump training, now focused on maintenance and cleaning, Jon was discharged. We were perhaps a bit nervous the first day or two at home, but now begin to feel really quite comfortable about the workings and effects of the pump. It is definitely a relief to just have to handle it mornings and evenings (it comes off at night) instead of having to deal with pills every two hours. And although the dosages may need to be adjusted slightly, the symptom relief is clearly very much better and especially very much more reliable than what Jon got from the pills.

So that's the good news. The bad news is that sorting out the biggest problem, i.e. the physical symptoms of Parkinson's, allows the second-biggest problem, the cognitive symptoms, to be seen more clearly. They've been a big concern for me for some time, and I believe Jon is now getting an inkling of the extent of his impairment. That must be frightening, frustrating, infuriating, intolerable. And what is he to do with those emotions, where is he to direct them? My way, is the answer.

He's been really quite unpleasant to me recently (but fortunately not to anyone else). It's been mostly verbal and mostly of a passive-aggressive nature, but earlier today he actually shook his fist in my face as if to punch me. I didn't think he actually would, but it’s an escalation of frustration and the inability to express it which could conceivably in time lead to worse.

What with the pre-treatment stress, the ten days in hospital and now the holidays coming up, we have spent far to much time grating on each other. I hope that a bit of physical distance in the new year will put us on a more even keel. To that end, I have arranged to borrow an office nearby two days a week for a writing project. With the three days Jon is out at the Oak House or with his "butler" that means we'll get several hours apart every weekday. I hope that's enough.

PS: Jon has seen this post and accepted that I upload it, but does not want to comment.

Comfy chairs and un-comfy words

JON: We went shopping for treats recently. This was not your ordinary chocolate and cake shopping, but shopping on the grand scale – Olympic shopping, in fact. As I may have mentioned a dozen or so times before, I have had a very stubborn case of sciatic nerve pain, which is basically a pain in the bottom. Bad news on top of the Parkinson's. Enough is enough, and action clearly needed to be taken.

Being of sound mind and scrambled body, I went looking for a chair that I can bear to sit in for more than 5 minutes. While being dragged around to places where Marie wanted to buy pointless things like towels and coffee tables and seed potatoes, I have taken every opportunity to thoroughly investigate the market for comfy chairs … and then … Marie found and bought herself a comfy chair which reclines and swivels and probably also types letters. So as not to be outdone, I too found a chair. Only mine is electrified with 2 motors: one reclines, i.e. turns the thing from a chair to a near-bed experience, while the other very cleverly raises the seat and effortlessly tips me out. All I have to do is press a button, something I still find myself able to do without assistance. The chairs should be delivered in about a month, and I can’t wait!

In other news, Marie had to go see one of her clients in Holland. The last time she visited them I was left alone and somewhat miserable at home, so this time she dragged me along. This had upsides and down sides. On the up side, I had company, restaurant meals, and British TV to watch at the hotel. The downsides were exactly the same. As a special challenge, they gave us a room with the shower over the bathtub, which meant I had to forego the continental habit of morning showers because I quite simply cannot raise my leg high enough to get into a tub in the mornings. Instead, I reverted to evening ablutions, with Marie there to assist me in and out.

The journey to Leiden gave us plenty of time to talk. Or to be more exact: it gave Marie time to talk, but that was OK because she talked about me. At least I thought it was OK until it transpired that she was in fact somewhat upset with me. I was very surprised to be informed that I subconsciously resent the fact that Marie is healthy and I’m not, and that I punish her for this by being obdurate (look it up, it’s a finely calibrated insult). I flatly deny this. But of course it doesn’t really matter if it’s true or not, our problem is that we disagree. I suspect the PD is somehow to blame and that Marie will simply have to find a way to live with it.

Her other complaint was that I don’t do the things that I can do. Of this I declare myself guilty, mea culpa entirely. It’s not that I deliberately don’t do things, it’s just that I don’t remember to do them. I need to be reminded, and I can see how the need to prompt me to do almost everything must be irritating. For this I will play the PD card (i.e. blame it on the disease). Because of the PD, I occasionally forget to brush my teeth. Me! I’m a dentist; I recognise the importance of clean teeth better that most people, and I’ve cleaned mine twice daily for over 50 years. If I can forget to brush, surely it’s no wonder I also forget to go for my walk, and collect the mail, and take out the trash, etc. etc. etc. Since shouting at me appears to have little effect, we’ve agreed to try a tick list of daily tasks on the fridge. This too shall pass…

A day in the life

Marie was saying last week how I don’t perhaps get as much out of my time as I could, and in the right mood I can be persuaded to agree that this may contain a grain of truth. So let’s have a look at my day and see what time and energy Parkinson’s leaves me for doing things I want to do (or that she wants me to want to do).

3 am. Well, a typical day now starts rather early with me waking up around 3 am. Sometimes I fall asleep again unaided, but usually I have to give in and take a sleeping pill or I would remain awake, fully awake which is not a whole heap of fun in the middle of the night. With the pill, though, I wake again at 7 am – but the price is that I stay drowsy until mid-morning.

7 am. On waking up I take my Sinemet (L-dopa) pills and wait for them to take effect, which anything from 30 to 60 min for the stiffness to ease. I still have some twitching throughout the day, but the L-dopa reduces it some, and I guess I am also just getting used to it. So that at least is a good thing. I also take a high dose of Q10 as we have read somewhere that this may have a slight delaying effect on the progress of the disease. I don’t generally believe in alternative medicine, but hope can make you willfully gullible.

8 am. My breakfast is Wheatabix, not by choice but because the bowels also suffer from Parkinson’s and I now tend towards constipation. Such fun. Anyway, I cheat the health brigade by having lots of sugar on it.

8:30 am. And then for the challenge of the shower and of getting dressed. Actually, the shower itself is okay, and the L-dopa has given me back the pleasure of a wet shave, but it is getting more difficult to dry myself off now because I am too stiff to reach round my back or lift up my legs high enough. For the same reason, I find underpants/ trousers / socks tricky, while t-shirts are still okay, as are shirts so long as they come ready-buttoned. A sweater over a shirt is almost impossible without help, though – if I try on my own, I invariably end up looking like Quasimodo’s uglier cousin. All in all, the whole process, which used to be over in 15 minutes or less, now takes upwards of an hour, and I need a little rest at the end of it.

9:30 am. Twice a week I go for a physiotherapy session in the morning which involves a ten minute drive each way, plus a ten-minute struggle at each end to get into or out of the car. If I need to see my GP I can walk to his surgery, while my other less regular health appointments – neurologist, psychologist, works doctor etc. – are all so far away that Marie always comes with me as driver. Most weeks there is at least one such ‘extra’ appointment.

And otherwise I spend my time reading – both the newspaper, books (usually non-fiction and often work-related), and articles (always work-stuff) – checking e-mail pretty regularly, trying to work on writing this book we keep talking about, editing my collection of photos, searching and surfing the net.

Noon. I take the next batch of L-dopa at noon (if I forget, my trembling starts to get noticeable again pretty quickly).

I don’t eat an organized lunch, so day-time food is mainly grazing on bread and fruit and that sort of thing. In the afternoon I do much the same as in the morning. A couple of times a week I also find a reason to walk down to the centre of our village where the shops and post office and health centre are. And in between these things I probably watch 1-2 hours of TV in little bits of ten minutes here and 15 minutes there.

3 pm. I usually take a half-hour nap (or fall asleep where I sit) mid-afternoon, followed by more of the same as above. I must admit, though, that even though on paper it looks like I spend a lot of time reading and writing, at the end of the day I have disappointingly little to show for it. I always enjoyed finding things out more than I enjoyed writing about what I had found out, but as things stand now I don’t have access to a lab so am kind of forced by circumstances to spend more time than I would prefer on that part of my job that I enjoy the least.

5 pm. I take my last portion of L-dopa at 5 pm. After that I am frankly tired out, whether from having done stuff or, to be honest, from having struggled and not done stuff, so the rest of the time until dinner I spend mainly on staring vacantly at the telly. Twice a week I cook dinner, and although the meals I produce are usually fairly simple, it takes me a while. I enjoy it a lot, though, both the cooking and the eating.

7 pm is our normal dinnertime. Afterwards I wash up. Recently, I have also started to spend 15-20 minutes every day trying to learn my strange wife’s strange native tongue with a self-study book and her there to practice on. We have had several false starts at this, but I think this idea of a short time every day will work – it’s enough to feel that actual progress is being made, yet not so much that it becomes a dull chore.

8 pm. Afterwards, I might watch some more telly, or go and check e-mail again, or read a bit more. Because my sleep is not perfect (though far, far better than it has been), I get tired pretty early in the evening and regularly drop off. But I aim to stay up until at least 10 pm when I’m beginning to twitch again.

10 pm. I usually go to bed around 10 pm, so that is when I take my first sleeping tablets. I have experimented with taking more pills early at night to avoid the 3am pill and thus avoid the morning drowsiness, but that does not seem to work.

So, is this the active and rewarding life Marie would like me to have? Certainly not. Is it the productive yet leisurely life I hope for? Not really that either, there’s too much frustration at the lack of progress for that. How can it be improved? Answers on the back of a postcard, please! If I don’t get myself sorted out soon, I fear Marie may well have another go at ‘organizing’ me, and that is best avoided for both our sakes …

Mind over matter

What we really need to talk about this week is emotions and stuff, which being a bit girlie is better left to the wife who thus gets her first chance to speak directly. And instead of blogging today, Jon gets a well-earned lie-down after huffing and puffing and bitterly complaining his way through a new set of physiotherapy exercises.

The thing is (in the interest of the kind of honesty we have promised in this blog): this past week we have expended an unreasonable amount of emotional energy on obstructing and frustrating each other. It is very natural that this should happen from time to time, seeing that we live under some considerable strain both from the direct effects of Parkinson's and from our fears for how the disease will affect and limit the future we had hoped for. But being natural and understandable doesn’t make it any easier to deal with.

I of course feel that I should be at all times the strong, capable, patient, loving, encouraging helpmeet Jon needs, and I suspect Jon thinks that in return he should be stoic, calm, supportive, resourceful, even fun in a sedentary sort of way. Easy pedestals to topple off. And we are each pressed also by factors outside our relationship that make it hard to keep our elevated balancing acts going. Jon is having an understandably hard time dealing with the loss of status and, more importantly, purpose and structure that comes from being unable to do the work that has formed the centre of his being for as long as I have known him. Meanwhile, I am feeling torn between too many conflicting demands of ramping up my breadwinning activities, acting as carer and enabler to Jon, and managing all the household chores in my spare time.

So the masks slip and our basic, very different, natures shine through. I have a tendency to react to all problems – fear, pressure, uncertainty – with anger, while Jon’s first instinct is to retreat into near-apathy while he waits for whatever hurts or troubles him to subside. So while I am spitting nails downstairs, he is hiding upstairs behind a blank computer monitor, neither of us able to help the other, each trapped in our own private bubble of misery. Normal people – like we were too a few years ago – will ask themselves in the heat of the moment if this is really how they want to spend the rest of their lives, and recklessly sling out threats that “if you’re going to be like that, then I’m leaving”. I know I’ve said it in the past, and I’d very surprised if Jon hasn't thought it. We’ve never meant it for long, but the sheer freedom of being allowed a moment’s angry dream of independence – that too is now lost to Parkinson’s. No exit.

As we’ve said in an earlier post, it helps to talk. We have people who care about us, and although most of them are international borders away, distance fortunately means little today (though hugs are, admittedly, not quite the same by e-mail). We also have very good friends who are unfortunate enough to understand only too well what sort of issues we are struggling with. This mixture of empathy and understanding is immensely helpful, but there is a limit to how much one can lay on friends and family. Jon and I have discussed it before, in the calm waters after one of our (okay, my) storms, but this time we mean it. This whole emotional mess is more than we can really deal with on our own, and since deal with it we must, we will now look to a therapist for help. With luck we will come away with some useful nuggets of self-knowledge and a few tools to help us keep things calm(er).

Another option is one of the self-help groups that all Parkinson’s associations seem to organize. We are a bit language-challenged – all the fault of the Dutch who are so good at English that we foreigners have little incentive to learn to speak their language – but I will at least have a go at finding a group. Jon is less keen on that idea, but could perhaps be converted if it proves a success for me. Whichever way it turns out, it feels right that we should now take the time to focus on improving our emotional health too.