On friendship and helpfulness

MARIE: Once upon a time, I was very bad at asking for help. I used to get all embarrassed - I guess I felt that I was somehow inadequate if I couldn't manage everything on my own, and I felt it was an unreasonable imposition on friends and family to ask them to step in where I failed. I had no problem with offering help or being asked for it, though. Not very logical.

As Jon has got worse, I have had to learn to ask for help. In a somewhat roundabout manner, I had been urging other carers to ask for help, but took a while to realise that I might do well to take my own advice. Lots of people want to help, but may not know how to. And if we (I) don't tell them what we need, how can they know how to help us? The first time I asked for serious help, I had to really pull myself together, but it's getting much easier - and it helps that I am still waiting for that first rejection.

We get some assistance from the local council, of course, like the night nurses and the transport service to Jon's day centre, but I don't really count that as help, more as necessary support that we've been saving up for through years of tax paying.

Personal help is different. I believe in "paying it forward" and have tried in my own small ways to practice that. Now that we're firmly on the receiving end, I'm realizing the true value of friendship and helpfulness.

We get lots of practical help. My parents garden for us, my nephews fetch and carry, a neighbour keeps an eye on things whenever I'm away, my cousin's coming round to chop wood, my sister has helped with medical advice and supplies, etc. etc. etc. I count us very lucky to have such generous people around us. But there are two forms of help that go way beyond normal generosity.

The first is Jon's best and oldest friend, who has quite simply moved in with us to help me care for Jon until we are offered a nursing home place. He has been with us for a month and a half now and is showing no signs of being fed up yet. His presence and his practical help (which extends beyond care to lawn mowing and home repairs) makes an enormous difference to our quality of life.

The other is Jon's first wife, who again last week vacated her flat to let us stay there while visiting Jon's daughter and her family. No. 1 wife then takes over the tiny guest room in Jon's daughter's house, which has just proven impossible for us to fit into. Yes, we could go to a hotel instead, but a visit is many times more enjoyable when we can stay in a flat with separate bedrooms and space for Jon to walk off his restlessness in the night.

Aren't people like that just amazing?

Dare I say...

…that I’m away having the most amazing time? Yes, I dare – because this blog is worthless if we’re not brave about the truth. So: I’m having a great time in Helsinki attending an international conference for carer organisations and researchers on caring. I’m meeting people, sharing ideas, building relationships, and learning loads about approaches to caring elsewhere.


It all came about because we formed an association for carers in Denmark (Carers Denmark) on Saturday. On Sunday, I dropped out of full-time caring – as you may have guessed, we applied and are now waiting for a nursing home place for Jon, but I had to admit that the waiting time was taking its toll. So now Jon’s oldest and closest friend has moved into our house and taken over as main carer until we get an offer of a nursing home place, and on Tuesday I was able fly off to join this brilliant conference.


I feel kind of guilty about feeling so good – but not guilty enough to put much of a dent in the good. It’s been almost 8 years of caring, and although there have been ups and downs, I think I can honestly say that there has not been a single day that was just easy-peasy. Don’t get me wrong, I don’t regret for one moment our decision a few years back that I should drop out of work and stay home to look after Jon. Although not great from a financial perspective, it felt absolutely right. It allowed me to spend time with Jon while he still enjoyed it, and it allowed me to get into the world of volunteering, which has brought me new friends and intense interests. But now Jon enjoys my company less, the care tasks have become more onerous, and I am just simply worn out by the length of time this has been going on.

It’s not that Jon is getting worse (well, he is, but slowly), it’s more that I have burned out. The best way I can explain the feeling is to compare it to leaving the house in the morning in a new pair of shoes that are just a tiny bit too tight. At first you walk along just fine, but after a bit the shoes start to bother you. You go on, perhaps limping a bit, then you develop some nasty blisters, and sooner or later you feel you just can’t take another step in those shoes. The shoes didn’t change, but your ability to wear them did. That’s how I feel about caring – and being burned out is not just bad for me, it also means that I’m not able to care with the calm kindness that I think Jon deserves.

So Jon’s wonderful, generous friend has stepped in and taken over. That is such a fantastic gift for both of us. Jon is enjoying some “man time” and loves talking about the old days – school, music, girlfriends, whatever – and I get to start rebuilding a life for myself in the certain knowledge that Jon is being cared for with competence and friendship. I hope our friend understands how much really this means to us!

The nursing home we have applied for is a lovely place with big bedsitting rooms, good common facilities, near the woods and the sea. Jon stayed there for a few days of respite care this spring and quite liked it – his main complaint was that they didn’t provide WiFi, and that can easily be remedied if he moves in. I truly believe there is a chance of a pretty decent life with him there and me visiting as often as I can for a little strolls and cream cake excursions. I’m feeling pretty positive, and I don’t think it’s entirely down to my tablets or the joys of Helsinki.

I’ll tell you more about “my” new carer association next time. It’s “mine” because I took the first initiative and was rewarded (or possibly punished) by being elected the first chairperson. There’s a to-do list as long as your arm, but there’s also a great team behind the idea, with a huge amount of energy, enthusiasm and experience. I’m sure we’ll be going places.

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.

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.

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.

Carpe diem

MARIE: As we’ve said, with the duodopa pump comes better symptom control, and with that comes a greater freedom and eagerness to participate in life. And boy, do we participate. Although Jon’s PD is better controlled now and he has almost gotten rid of the debilitating OFF states, Parkinson’s continues to nag at us to make the most of now, because you never know what’s round the corner. Could be more good, but could equally well be another downwards slide, new symptoms, drug intolerance, whatever. So we are seizing the day and carping the diem.

First, of course, was the trip to the UK that I told you about in the last post. Then last week we had a visit from two UK friends with Parkinson’s – enormously enjoyable for Jon as he turned the best room in the house into a huge electronics workshop for the duration. Also much talking, walking and eating. Sightseeing not so much, as it’s no mean feat to get three Parkies to feel up to an excursion at the same time. On the other hand, that was perhaps also the joy of it: that there was no need to pretend or to push oneself as everyone except me was in the same boat.

Next week we get a long visit from Jon’s oldest friend, and I shall take the opportunity to nip out for a few days. I’ve asked for the home nurse to come and help with pump matters morning and evening, but in between the two of them will be on their own. I think they can do it, and that Jon is eager for the independence of a few days without my constant presence. We’ll let you know how that goes.

After that comes a short visit from another foreign friend, a two-week period of staggered visits from the family to celebrate Jon’s big birthday, and then we’re off to a pump users’ meeting in a different part of the country so will take the opportunity to make a small holiday of it. Then my parents come down for the soon-to-be traditional month of hard gardening labour, we must organize a visit from our good Dutch friends, we’ve got another two domestic holidays booked and are planning another UK trip, there’ll be an invasion of nephews at some point, and also my equally big birthday later in the summer, and…and…and…

Looking at our schedule, I am torn between despairing at the amount of stuff we have planned – how on earth am I going to find the time to write the next book? – and on the other hand thinking that this is exactly the reason why I don’t go out to work: so Jon and I can squeeze every last drop of good out of life while there’s time. I may not go out to work, but I still struggle to find the right work-life balance.

 

On Jon’s part the issue is more straightforward. Yes, he has gotten rid of the horrible OFFs, but he still has unpleasant dips in his general state. These he can counteract by taking an extra dose (using what we call the ‘happy button’ on the pump), but the ideal time to take it is just before he needs it. That means he’ll have to learn to predict which activities will deplete his dopamine levels so he can act early and avoid even the smaller dips. He had quite a bad dip last week when he went out bowling with the Oak House guys. The fun of it carried him through until he had run utterly out of dopa, and it took him quite a while to get back in the saddle. But he’ll learn, we’ll learn, and meantime life is still a whole lot better than it was.

Travels with the pump

MARIE: We’ve just had a long weekend in the UK – partly to see Jon’s daughter’s new house (and family and friends, of course), and partly to test out traveling with the duodopa pump. We were both mildly apprehensive. Would we be believed by airport security when we told them that Jon now has a tiny metal part inside him and can no longer go through the scanner? Would they accept that we carried all Jon’s gel form medication in hand luggage? No way would we ever let drugs go in the suitcase, a delay or misdirection of luggage with drugs doesn’t bear thinking about. Would the drugs stay cool in their special thermal bag for the duration of the journey? And would the hotel be able to keep the drugs cool for us, yet allow easy access to fresh drugs in the morning?

I am so happy and relieved to say that the answer to every one of the questions was a clear YES. Apart from having to carry the thermal bag around – which would be quiet heavy for a long trip – travels with the pump are significantly easier than travels with pills. Going across time zones? No problem. We used to try and stretch or compress drug timings on travel days to fit both with time zones, long days, and urgent bursts of activity. Now, the meds are just constantly flowing, there’s no need to plan or discuss anything, Jon just presses the lovely extra-dose button, and off we go. Put the pump on in the morning, take it off at night, and don’t worry about a thing in between. Oh, the relief. It’s wonderful to know that we’ll be able to travel by air again without any anxiety.

Two more things helped make the trip a success. It was clear on our last trip to the UK that the whole business of travel and any lack of home comforts at the destination really wears Jon out, to the point where he hasn’t the energy to enjoy the purpose of the trip. So this time we broke it up. We flew over, but instead of getting the airport train and then waiting for a ride and then having a social situation, we simply checked into the airport hotel and stayed the first night there. We’ll definitely do that again, it’s now vastly better to have two unstressful travel days rather than one demanding one.

 

And the other thing that helped was that we swallowed all pride and asked the family for help with lifts and a really comfortable place to sleep. I have regularly suggested to other carers that they should ask for help from their families instead of waiting for people to guess at how they can help, but I’ve not been good at taking my own advice. I was really quite overwhelmed at the generous help and consideration we got on this trip, the trouble they were prepared to go to in order to give Jon the best basis for having a good time. Which he most certainly did, as did I. We’ll be back, as he’s taken to saying.

By the way, it was funny to note how un-embarrassed we have both become. This was the first time the family had a chance to see the pump and Jon’s extra orifice, so he prepared to do a little show-and-tell. I’m not sure if it was discretion or a slight squeamishness on the part of his audience, but that didn’t take long at all. I guess by now Jon and I are so used to the evidence and paraphernalia of disease that we don’t think of it as anything out of the ordinary. Maybe we need a little reality check.

 

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.

Pumping

MARIE: Today is the one month anniversary of Jon getting the duodopa pump. Long enough to review the effect on Jon’s PD and on our daily lives.

On symptom control, Jon still got some dyskinesias, but nowhere near as bad as before, and certainly not to the point where it bothers him. Enough to still draw a bit of attention, probably, but we’re kind of used to that now. However, the most important point is that when I asked him if he thought the pump was worth the effort, Jon said unequivocally yes, he would crawl over broken glass for the relief it gives him from OFFs.

He used to struggle horribly in the morning, when he’d often have to wait more than an hour for the pills to start working enough that he could get out of bed. Now, he’s frequently up less than half an hour after I’ve started the pump. And with the occasional extra dose (he can take up to 6 a day), the day passes with the occasional little dip, but not a single real OFF. I don’t think any of us without Parkinson’s can quite imagine how horrible an OFF is, but I can see how much it means to Jon to be rid of them.

On the practical side, it’s wonderful to leave the tyranny of pills behind us. Admittedly, there’s a bit more to the maintenance than I expected. I knew we’d have to manage the pump, but (like an idiot) hadn’t counted on the cleaning and anointing of the entry point. It’s kind of gross, but we’re learning to deal with it.

Teaching Jon to manage the pump himself is a bit more uphill. I don’t think he’ll ever be able to set it up and connect it in the mornings because that’s when he’s at his lowest point functionally. Right now, we’re working on him getting comfortable enough with the procedure that he can disconnect it and reconnect it when he has his shower, and perhaps also look after the entry point himself. We haven’t decided yet about responsibility for the evening procedure when his tubes need flushing, so for the time being I’m handling that. We’ll take it one step at a time and see how far we get.

The last issue is ‘wearability’, and I have to admit I’m a bit disappointed with the options. The trouble is that the unit is quite large and heavy, must be easily accessible, and is attached to Jon by about 40 centimetres of plastic tubing with a large connector in the middle. Together with the pump you get the gear to carry it around your neck like a camera or as a shoulder bag, or as a bum bag, or in a shoulder holster like a gun, or in the inside pocket of a vest (the over-garment), or in side pickets of a vest (the under-garment). However, all the gear is made from somewhat unattractive materials, except the black leather shoulder holster, which is sadly the most uncomfortable to wear. We’ll be seeing a lot of other pump users at the annual meeting in April, and I’ll be very interested to see how they’ve balanced discretion with accessibility and comfort.

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.

All systems are go

MARIE: At last, we have an appointment for Jon to get the duodopa pump – soon, very soon. It’ll all be done and dusted before Christmas and will be the weirdest and potentially most wonderful gift he ever got. We are nervous and excited and hopeful but not daring to be too hopeful. That’s normal, I guess.

What’ll happen is we’ll get admitted (yes, I say “we”, and if you read the post from 28th October, you'll know why) and Jon will get a plastic tube stuck up his nose and all the way down the digestive tract to his duodenum. This will be connected to the duodopa pump, so from day 1 he will be on the new medication. They leave the tube in place for a few days while fiddling with the drug dosage and checking that this method of delivery really does agree with Jon.

Then, all being well, he’ll have the operation to get the permanent tube inserted through his stomach. We were relieved to discover that this is done under local anesthetic, which is obviously a lot quicker to get over. After that, we’ll stay in hospital for up to a week while they continue to fiddle with the dose, check that everything has been installed correctly, and make very sure that we know how to look after the thing when we get home.

Jon is naturally concerned about the unpleasantness and discomfort associated with the various procedures, but feels absolutely certain that this is the right treatment to accept. I am more worried about the potential emotional and cognitive fall-out, but equally convinced that this is the right thing to do.

So, what to expect? Well, some people apparently dance out of the hospital, while for others it takes a few weeks at home before they settle down with the new routine. This is apparently partly to do with the enforced idleness of hospital life which uses up rather less dopamine than the real world. I have this idea that we should keep as active as possible while in hospital, both because of the dosage issue and because otherwise we might go slightly mad. There are lovely grounds round the hospital, but the food is dire, so I envisage many little walks, food-related excursions and perhaps, if they’ll let us out in the evenings, dinners with close family who can be relied upon not to be fazed by a man with a plastic tube up his nose.

Wish us well.

Goodbye Piccadilly, Farewell Leicester Square

MARIE: We went to London last weekend. Jon’s been itching to go to see an exhibition about the computing pioneer (and WWII code breaker) Alan Türing. After the war Türing worked at the same university department as Jon’s dad – Türing was very much the theoretician, while Jon’s dad put theory into practice by writing the very first chess software. Consequently, Jon’s dad got a display case all to himself at the exhibition, which was well worth seeing. (Jon also believes to have briefly sat on Türing’s knee as a toddler, a gratifyingly eccentric claim to reflected fame.)

Anyway, encouraged by the success of our Amsterdam trip (see blog posts past), we set off for London. The old question of whether it is better to travel than to arrive has been decisively answered by the budget airlines. After a long day involving 5 modes of transport with much walking and lugging of luggage in between, we finally arrived Friday night at a hotel near where we used to live in East London.

Saturday morning we slept in, then ambled down the high street breathing the familiar big city fumes. Jon found it more difficult than ever before to deal with the pedestrian dance of sto

p – go – lurch sharply to avoid umbrella – go – run for green light – stop for pram. He was festinating away quite alarmingly, tripping himself up, feeling his feet stuck to the ground at the wrong time. If you don’t know what festination looks like, it’s as if the upper body moves forward as intended while the feet stay behind, and then when a fall is imminent, the feet suddenly come ‘unstuck’ from the ground and rush in many tiny steps to catch up with the body. A bit of a concern around the house, and bloody terrifying in the middle of London traffic.

Happily, though, Jon survived long enough to be reunited with his daughter, son-in-law and two lovely grandchildren. We had a long leisurely lunch, then Jon had a little nap while the rest of us played outside, then another meal together, and finally a drink in the hotel bar. A long day, but an intensely enjoyable one.

Sunday was the family excursion to see the exhibition. The Science Museum is right next door to the Natural History Museum, home to dinosaur fossils and stuffed whales, and so of enormous interest to the grandchildren. In we went – Jon’s walking stick and the look on his face got us whisked past the long queue – to a museum where the collection is as spectacular as the building is noisy. Hard surfaces and high ceilings plus thousands of over-excited children was a bit much for Jon, so he and I retired to the café with grandson, where we spent a pleasant half-hour drawing imaginary butterflies and setting them loose to flutter around people’s heads. Then on to the Türing exhibition, which was small and perfectly formed. Granddaughter and I made it a particular point to talk loudly throughout about how famous her great-granddad was.

Then, and this is where we perhaps pushed the boat out a bit far, we were joined by the in-laws who had traveled for hours to enjoy a late lunch with us before getting straight back on the train. Each individual element of the day was perfectly fine, but two exhibitions and a sociable meal out on the same day is just one event too many for Jon. At the end of the meal, we said our goodbyes in the restaurant because I could see that he was just too exhausted to come along and wave everyone off at the station.

And that was basically that. We had another two days in London, but although we spent some more time walking around the old neighbourhood, we never ventured into the centre again, and spent most of our time either in the hotel room or in the blissfully music-free pub across the street. There was just no energy whatsoever left in Jon. It was the combination of the stresses of air travel (by contrast, we drove to Amsterdam), too many activities in too short a time, and (especially, in my view) the relentless sensory onslaught of such a large and busy place.

I have a theory that if you never try something and fail at it, it’s because you’re being too timid. You have to stretch yourself, test your limits, and sometimes you end up over-stretching. We used to love London when we lived there 15 or so years ago, but now we have to accept that London is simply beyond us. Parkinson’s is turning us into small-town folk and nature lovers.

Error prone

MARIE: In the last post, Jon told you about his recent night in hospital for tests ahead of getting the Duodopa pump. He didn’t have a whole lot of fun there, but it served its purpose, so that’s fine. Less fine were the errors made with his medication. I had been warned to expect this by other carers, who had told harrowing stories of medication schedules horribly messed up – because hospitals like to medicate three times a day, at mealtimes, which is a) far too infrequent and rigid for many Parkies and b) just plain wrong, as Parky meds and food should be separated if at all possible.

But these stories were from non-neurology wards, nursing homes, etc. I thought that surely, in a neurology ward, and particularly one where they specialize in Parkinson’s, it would be okay, I could relax and leave Jon’s meds to the experts. Imagine my surprise when one of the first things Jon’s room mate told us was that he’d elected to be in charge of his own meds as he didn’t trust the staff to get it right every time. Huh? Was he paranoid or what?

No, as it turned out, he was right and I was wrong. In the 24 hours Jon spent in hospital, no fewer than five individual errors were made. None of them catastrophic, but all of them errors with the potential to make him unnecessarily miserable. To whit:
1. Jon's evening meds were stopped several hours earlier than agreed with the specialist nurse running his tests.
2. He was given Madopar (L-dopa) in tablet form instead of his usual capsules.
3. His back pain meds were given to a strict schedule, although they are prescribed to be taken as needed, and was the one drug not to be stopped for the duration of testing.
4. He was given only a half-strength patch of Exelon (anti-dementia drug).
5. An anti-nausea drug essential for the execution of the test was omitted.

The first three problems arose at the same time, when the evening nurse came to give Jon what she claimed were his last meds of the day, at 7:30pm rather than as agreed at 9pm (and excluding the slow-release tablet we’d specifically agreed with the specialist nurse that Jon could take to give him a decent night’s sleep). This portion contained a tablet I’d never seen before, but excluded the back pain drugs. When I queried this, the night nurse was entirely unwilling to consider that I might be right and the doctor’s notes might be wrong. She stonewalled, leaving me only the sneak’s option of quietly slipping Jon some of the meds we’d brought from home. And leaving me determined to be there every waking moment of Jon’s hospital experience to guard against further errors. Two such occurred the next morning, but I was there to point them out and the day nurse was rather more amenable to sorting things out.

Why did these five errors occur? One reason only, as far as I can see. When Jon was admitted, he first talked to the specialist nurse who gave us all the information we needed. But he then had to talk also to a young doctor, recently graduated and on rotation between wards before deciding on his special field. Jon was asked to go over all his symptoms and list all his meds. Jon finds exhaustive lists impossible, so I gave the medication info. Doc scribbled and scribbled and later transcribed into the computer that is God around there.

Now, I know I did my best to give the correct information, and I’m sure young Doc did his best too, but the details are extensive and complicated. So there were five errors made. I seriously doubt that would have happened with a more experienced doctor. But the really infuriating point is that this was not necessary. All the information on Jon’s meds was already available in the holy computer, entered there by his regular neurologist, an extremely experienced doctor with highly specialized knowledge, not just of Parkinson’s in general but of Jon in particular.

I understand that young doctors have to learn somehow and that learning by doing is a great method. But when the young Doc’s doing is my husband’s potential undoing, my understanding rather evaporates. One thing is for damn sure: I’m sticking to Jon like a burr during his next stay in hospital, the planned two weeks to get the pump installed. We’re considering the purchase of large dog basket so I can sleep under his bed.