MARIE: I’ve done much writing over the last month or so, but none for the blog, so it’s about time. Apart from a few grant applications to pay for local Parky events, it’s mostly been a matter of writing my chapter for the edited book of carer stories that I am working on, and writing a speech that I am giving to various politicians holding the health of the health service to ransom.
It’s been a bit schizophrenic in that, while I am presenting our own story in both cases, I’m going at it from rather different angles. In the carer book, I get very personal and perhaps at times a little intense, but I try to focus on how I or we got through various challenges that PD threw at us, how we have coped and continue to cope (with stuff we’ve also talked about here). In the speech, however, I am less personal and more general, and I am far less focused on what you can do yourself to cope and far more focused on how a lack of support services in this and that area makes one’s life harder than it has to be. It’s kind of a relief to come back here to the blog where you know everything about us already.
But the writing also made me realize how immensely fortunate Jon and I actually are, all things considered. In the speech, I go on about how I have hardly any income because I am in excellent health yet am unable to find a job because of chronic illness, and how this wretched country should have something like the carer’s allowance in Britain (only preferably at a rather less offensive rate), in recognition of the fact that forcing a carer to go out to work for purely financial reasons can have a seriously negative impact on the quality of life of both the carer and the Parky.
Just a few days after drafting that text, I met a couple in their late fifties where the husband has had Parkinson’s for twenty-some years. He worked for as long as he could, and she has worked fulltime throughout, in what sounded like fairly high-pressure positions. Now at last they are nearing the age when she can take early retirement – but it comes too late. He is now so poorly that there seems very little left of their marriage except a patient-nurse relationship.
So when I say that I can’t work because of Jon’s PD, I am clearly being a complete whimp. Other people have to work through far worse. The carer must be permanently stressed out and overworked, constantly feeling while at work that she should be at home caring for hubby, and vice versa. And the Parky must feel abandoned to an ever-changing parade of care staff, much of the time home alone feeling bored or in discomfort.
Of course we have also met lots of couples where the ‘carer’ is too old or too ill themselves to be able to take the necessary care tasks in their stride. Sure, you can get help to come mornings and evenings to help with personal hygiene, getting dressed and undressed, getting in and out of bed – but who do you call when your Parky takes a fall on the way to the loo at 3 am in the morning? What does the 80-year-old wife with high blood pressure and osteoporosis do then? Are you supposed to just fetch a cushion and blanket and leave him there till morning? Or do you knock yourslef trying to get him up and back into bed?
I am realising utterly fortunate Jon and I are that I am young enough and well enough to look after him with ease, and that he is sufficiently well pensioned to enable me to stay at home and do so. It’s a nice bonus that this also leaves me time to write about it.
19 February 2012
04 February 2012
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.
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.
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