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.

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.

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.

Numbers

JON: This week it was my birthday – for the 59th time! The only bright spark is that at least it’s not 69. In fact, a recent article in the New Scientist about the popularity of various numbers said 42 was most people’s favourite number (presumably courtesy of The Hitchhiker’s Guide to the Galaxy where ‘42’ features as the answer to the meaning of life, the universe and everything). ‘69’ came second favourite, probably because the rude connotations appeal to small boys of all ages and genders.

I’ve been working for days on turning my 59th birthday into a good rude joke involving the number 69, but I’m stuck. In fact, I used to enjoy swapping jokes and banter with people, and I think I was funny (at least to highly intelligent native speakers of English, and occasionally to Marie). However, I think I have become unable to tell jokes properly. I find myself delivering the punch line first, miss out essential parts of the joke, rarely manage quick banter – and I just don’t think I’m that funny anymore.

Why? I suspect two factors: progression of the PDD, and / or the lack of an audience. The people I hang with at the Oak House may be incredibly funny, but how would I know without speaking Danish? But I doubt it, they generally seem like a fairly dull bunch. Places like this are known as ‘Gods waiting rooms’, i.e. places where we go and wait to die (another potential joke lurks in a mispronouncing ‘to-die’ to sound like ‘today’ – ho ho ho, aren’t I the witty one?).

I think I’m beginning to settle in at the Oak House, though. I’ve formed a plan together with one of the regulars to produce some artwork to decorate a large wall in the kitchen with a new molten wax technique (well, new to me, anyway). I think I’ll enjoy that.

I have also been made a guide to the Oak House for a potential new ‘inmate’. As I may have mentioned, Marie attends every meeting relating to Parkinson’s or dementia in a 100 km radius. At one, she met a nice couple from the next village. The wife is ‘normal’, the husband has early-onset dementia. Somehow I’ve agreed baby-sit at his first visit to the Oak House, show him around and make him feel comfortable. A bonus is that he has lived for many years in Britain so is potentially someone easy for me to talk to.

He was inducted during our pre-Easter celebrations, a day starting with enormous pastries to celebrate my birthday, followed by an excessive lunch with beer and schnaps. At home waited the promise of a birthday dinner consisting of a HUGE steak, a small amount of salad, and as much apple crumble and custard as I could possibly eat.

I’m told many Parkies go off their food because all the drugs can give you nausea, but that has happily not happened to me (yet?). But I do regularly increase my intake of red meat by viciously biting my cheeks. PD has got to be at fault there somehow, though I’m not at all sure if anything can be done about it.

Good news, on the whole

Who would have thought, as I lay innocently in my crib, that I’d end up married to a buxom Danish lady (although I stretch the meaning of ‘lady’ somewhat here), living in the middle of snowy nowhere, and – this is the strangest part – officially defined as demented. I’ve been called many names in my time, some more obscene than others, but demented is a new one.

I assume that you, dear reader, have been following our travails over the past month or so (there may be a quiz later), so you know that after many tests a neuro-psychologist told me that a) I am (or have been) highly intelligent, but b) I now have Parkinson’s Disease with Dementia, or PDD among ‘friends’. I’ve not been able to find out a great deal about PDD, but then I don’t need a book or a website about it. I now live with it all day and every day, so I’ll learn as I go along.

A plus, at least, is that we have now become eligible for respite care. This means that on a regular basis – for now, every Monday from 9 to 3 like clockwork – Marie gets a break from me, and I get a rest from the woman’s incessant nagging and planning. The respite home I go to is a ‘normal’ family house that takes 8-10 users at a time, who are supervised by three ‘staff’. The word ‘users’ is theirs. I’m sure it’s very wrong if I call us the inmates or the patients. Some of the others call the staff ‘the grown-ups’, presumably because they have to take responsibility for everything. Maybe simply ‘us’ and ‘them’ will work.

So far, I’ve only been there twice, and both times it’s been an OK experience. I had been told that around half the people there speak English to some extent, and I find that surprisingly many are surprisingly happy to speak it. But not all of the people all of the time, of course, so I also get exposed to ‘raw’ Danish for a good part of the time, which lets me relax. Actually, I think there’s a good chance that, by a process of osmosis, these demented guys and dolls will teach me more Danish than I could ever learn in my old language school. We’ll see.

In other news, I visited a friend in Glasgow last weekend. I had an excellent and exhausting time, and was pleased to find that solo air travel is still well within my capacity. In other ways, too, it was a telling experience: as agreed in advance, Marie rang me every 2 hours from Denmark to remind me to take my medicine. In one way, it was a sweet expression of affection and concern. In another way, it was just a tad humiliating, like having your mum collect you from the playground, or – as has happened to me – being made to wear lederhosen in full view of my peers (who were also five years old, but that’s beside the point).

We are now scouring the web for a portable alarm that will free both of us from the straightjacket of the bi-hourly call. The trouble is that I have a bit of a history of switching off pill alarms without actually taking the pills that I’m supposed to be alarmed about. I’ll need something loud and insistent. Something very like Marie, in fact.