MARIE: There’s a certain type of people that, no matter how nice the individual, you really don’t want to get to know. I could have lived very happily indeed without ever having anyone present themselves at my door with the words, “hello, I’m Britta, your local dementia coordinator”. I knew she was coming, indeed I had called and asked her to come – not expecting anything concrete at this stage, just to make contact and find out how a dementia coordinator spends her days.
Britta turned out to be kind, engaged, knowledgeable and very pleasant. And contrary to my expectations, it turned out she did have something concrete to offer both Jon and me. She invited Jon to come and visit a house she runs – not, she stressed, a day centre or a social club, but a home away from home, where each day 8-10 people with varying degrees of various types of dementia spend some hours doing normal things like cooking and gardening and going for walks and having fags in the tool shed. The aim is to help the afflicted person by giving them something useful and pleasant to do in an atmosphere conducive to maintaining function for a long as possible, and to help the carers by providing us a breathing space. If Jon likes it, he could start going once a week.
For me, Britta offered a series of meetings for carers of people with early-onset dementia. It surprised me how eagerly I accepted the invitation, almost tearfully grateful that there’s a place I can go to talk to other carers who know what it’s like. That threw me. I realized that although we have told friends and family, and although their reactions have been loving and considerate, it’s not like telling people about Parkinson’s. PD may be poorly understood by those not affected by the disease, but once you explain, most people do begin to understand and imagine what life with PD is like.
Not so dementia. Life with the big, ugly D is such a taboo subject, such a frightening prospect for everyone we know. I get the feeling many people are afraid even to imagine it – do they subconciously fear to become infected by the mere thought? I can’t even talk about it to Jon, because he prefers to pretend it’s not there, and who can blame him? It threw me for the rest of the day. I had much to do, but nothing got done because I was floored by discovering this need in me to meet others living next to dementia.
I’ve just been to my first meeting and it was utterly brilliant, as good an experience as the first time we went to a Parkinson’s event. There was quite an interesting talk about support available from the local authority, but that was almost by the by. The marvelous thing was to be surrounded by people who know and understand, who don’t judge how you handle it, but who are keen to share their experiences – it lifts the heart and makes the whole bloody thing quite a lot easier to bear. I shall definitely become a regular.
22 January 2012
11 January 2012
No news and good news
JON: A few weeks ago, I had a spot of masochistic fun. We got up ridiculously early and drove to Copenhagen where I had the delightful experience of a lumbar puncture. I’ve had one before so I know what I’m talking about when I say that this one was very professionally done. Although it involved me sitting rather inelegantly on a chair bent over to touch my toes (to separate my vertebrae and make room for a l-a-r-g-e needle), the doctor managed to make the procedure pain free by distracting me with old jokes and a bit of banter.
All was well, at least until I got in the car to go home, where to my modest surprise the anesthetic began to wear off and my back started to hurt. Only hurt a bit, though, just enough to give me something to complain about on the long drive.
We’ll probably not get the results until my next appointment in three weeks’ time – a clear case of no news being better than urgent news, as I’m sure I would have heard if they’d found little green men discussing Nietsche in my spinal fluid. We’re not entirely sure why I had the test in the first place, actually. When Marie asked what the neurologist is looking for, there was mumbling about ‘something something tau’ which means little to us or the internet. Oh well, if there’s anything to discover, you’ll hear it here first.
From the Dept. of Good News, section Relief, come glad tidings on my genetic status. The company http://www.23andme.com/ does genetic testing to determine whether you have an increased risk of developing a number of diseases, including Parkinson’s and Alzheimer’s. This costs money, but they have (had?) a special offer for Parkies who can get the testing done free, in return for answering numerous questions for research purposes about your medical history, your drink and drug habits, your favourite colour, etc. Free is a good price, so I applied (or rather, Marie applied pretending to be me). On my part, the most arduous task involved gobbing into a plastic tube for intercontinental dispatch.
My results came back recently and show NO increased genetic risk of either PD or Alz. That doesn’t make me move any better or think any quicker, but it does stop me fretting that I’ve passed on dud genes to my children and grandchildren. There will be dancing in the streets – or there would be if I could dance. Have I ever shown you my version of the moonwalk?
All was well, at least until I got in the car to go home, where to my modest surprise the anesthetic began to wear off and my back started to hurt. Only hurt a bit, though, just enough to give me something to complain about on the long drive.
We’ll probably not get the results until my next appointment in three weeks’ time – a clear case of no news being better than urgent news, as I’m sure I would have heard if they’d found little green men discussing Nietsche in my spinal fluid. We’re not entirely sure why I had the test in the first place, actually. When Marie asked what the neurologist is looking for, there was mumbling about ‘something something tau’ which means little to us or the internet. Oh well, if there’s anything to discover, you’ll hear it here first.
From the Dept. of Good News, section Relief, come glad tidings on my genetic status. The company http://www.23andme.com/ does genetic testing to determine whether you have an increased risk of developing a number of diseases, including Parkinson’s and Alzheimer’s. This costs money, but they have (had?) a special offer for Parkies who can get the testing done free, in return for answering numerous questions for research purposes about your medical history, your drink and drug habits, your favourite colour, etc. Free is a good price, so I applied (or rather, Marie applied pretending to be me). On my part, the most arduous task involved gobbing into a plastic tube for intercontinental dispatch.
My results came back recently and show NO increased genetic risk of either PD or Alz. That doesn’t make me move any better or think any quicker, but it does stop me fretting that I’ve passed on dud genes to my children and grandchildren. There will be dancing in the streets – or there would be if I could dance. Have I ever shown you my version of the moonwalk?
02 January 2012
All patched up
MARIE: It can be hard to see things clearly if you’re too close to them (I guess that’s why it’s always easier to solve other people’s problems), so although Jon and I both think his new Exelon patches are doing him good, we weren’t really certain how much good.
So it’s been really good to hear from several people who don’t see Jon every day that they have noticed a clear improvement in him. The physiotherapist told me Jon seems keener and is definitely quicker round the torture chamber of exercise machines, our neighbour said he’s been more cheerful lately (after a demonstration of Jon’s ballet moves), and my family who invaded us for several days over Christmas felt he is more engaged and with it.
To cap it all, he had a truly splendid New Year’s eve party. Okay, he was very slow of foot when we arrived and did have a muddled half hour early on when he told several jokes with the punch line first, but from that point on he was on an upward trajectory. A daybed had very thoughtfully been provided by our hosts – it generally really helps when Jon can have a half hour’s time-out now and again, and he’d made liberal use of similar arrangements during Christmas, but for New Year’s eve the bed remained untouched. In fact, by the time everyone else was getting ready to go home some considerable time after midnight, Jon was in his stride and could easily have stayed on.
Of course this miracle of stamina was fuelled by regular applications of drugs. Jon now takes L-dopa every two hours from 6 in the morning until 10 at night, and he just carried on with this schedule for many extra hours. That, probably in combination with the alcohol and the fags he bummed from other guests, kept him in high spirits.
The price, predictably, was that he was still flying high when we got home and didn’t get much sleep that night. In the first 24 hours of 2012, I don’t believe he managed more than 3 hours’ sleep in total – and nor did I. He got up at 6:15, turned on all the lights and let the cat out, then went back to bed. So I got up at 6:30, turned off all the lights and let the cat in, then went back to bed. So he got up and made a loud cup of tea. So I got up and had a wee. Then we both went back to bed – and 5 minutes later the first pill alarm of the day went off. Sometimes you just have to cut your losses, so we stayed up after that.
In the subsequent 24 hours Jon’s sleep ratio was reversed, and today he seems about back to normal. It didn’t use to take that long to recover from a night out when we were young and PD-free, but never mind, it’s a price well worth paying.
So it’s been really good to hear from several people who don’t see Jon every day that they have noticed a clear improvement in him. The physiotherapist told me Jon seems keener and is definitely quicker round the torture chamber of exercise machines, our neighbour said he’s been more cheerful lately (after a demonstration of Jon’s ballet moves), and my family who invaded us for several days over Christmas felt he is more engaged and with it.
To cap it all, he had a truly splendid New Year’s eve party. Okay, he was very slow of foot when we arrived and did have a muddled half hour early on when he told several jokes with the punch line first, but from that point on he was on an upward trajectory. A daybed had very thoughtfully been provided by our hosts – it generally really helps when Jon can have a half hour’s time-out now and again, and he’d made liberal use of similar arrangements during Christmas, but for New Year’s eve the bed remained untouched. In fact, by the time everyone else was getting ready to go home some considerable time after midnight, Jon was in his stride and could easily have stayed on.Of course this miracle of stamina was fuelled by regular applications of drugs. Jon now takes L-dopa every two hours from 6 in the morning until 10 at night, and he just carried on with this schedule for many extra hours. That, probably in combination with the alcohol and the fags he bummed from other guests, kept him in high spirits.
The price, predictably, was that he was still flying high when we got home and didn’t get much sleep that night. In the first 24 hours of 2012, I don’t believe he managed more than 3 hours’ sleep in total – and nor did I. He got up at 6:15, turned on all the lights and let the cat out, then went back to bed. So I got up at 6:30, turned off all the lights and let the cat in, then went back to bed. So he got up and made a loud cup of tea. So I got up and had a wee. Then we both went back to bed – and 5 minutes later the first pill alarm of the day went off. Sometimes you just have to cut your losses, so we stayed up after that.
In the subsequent 24 hours Jon’s sleep ratio was reversed, and today he seems about back to normal. It didn’t use to take that long to recover from a night out when we were young and PD-free, but never mind, it’s a price well worth paying.
12 December 2011
My new job
MARIE: “Hello, my name is Marie and I’m a carer.” What’s in a name? The difference between ‘carer’ and ‘career’ is just one little ‘e’, but the connotations are worlds apart. Tellingly, the word ‘carer’ is one that my spell checker doesn’t even recognize – I suppose that software developed initially for business purposes wouldn’t need to include such an exotic term. But that’s my job now, to be a carer.
I’ve had my own business for the last ten years, working partly on commission and partly as a consultant and freelancer. That meant I was able to reduce my workload by degrees as Jon’s PD developed – letting go a client here, dropping an activity there, and reducing my hours (and income) as necessary. Very handy, but also a slippery slope that lead me, about six months ago, to a full stop with no paid work since.
We already knew that there is a system here in Denmark, similar to the carers’ allowance in the UK, by which a family member can be paid to provide the care that would otherwise have had to be provided by the health service. I have been joking for some time that that’s how I would end my working life, but I had not expected it to come so soon.
As Jon said in his last post, he has now been offered funding for personal assistance for 12 hours per week, and I have been employed (through the local authority) to provide that care. Many concerns went into making the decision.
It’s obviously a lot more convenient for Jon to have me do the caring. Then he doesn’t have to get up and dressed when some stranger says so, or go to bed when another stranger says so, or get undressed and showered in front of a parade of short-term carers and holiday temps, or rely for his drug regime on someone with little understanding of Parkinson’s, or be unable to go for his walk until someone is due to come round and help with his shoe laces. On the other hand, I expect he worries about becoming too reliant on me. What if I break a leg? Or, worse, what if I get annoyed and stomp off?
For my part, I don’t mind any of the actual tasks involved, but together they completely fragment my day. So although I only get paid for 1 hour and 39 minutes per day, there is no way I can fit paid work around this (trust me, I’ve tried). On the other hand, I can’t see myself enjoying a guilt-free day at the office in the knowledge that Jon is home alone almost the whole time, and relying on strangers the rest of the time. I dragged him along to Denmark, and I can’t now leave him surrounded by people he can’t properly communicate with.
So the best quality of life for both of us lies in me being the formal carer. It’ll make little practical difference, there’ll be a small but useful contribution to our finances, and I can continue to do my volunteer work for the Danish Parkinson’s Association for as long as possible. So I don’t actually mind, really. In a way it’s a relief to have that side of things sorted - it’s just that, well, I’d have preferred for it not to have become official quite so soon.
I’ve had my own business for the last ten years, working partly on commission and partly as a consultant and freelancer. That meant I was able to reduce my workload by degrees as Jon’s PD developed – letting go a client here, dropping an activity there, and reducing my hours (and income) as necessary. Very handy, but also a slippery slope that lead me, about six months ago, to a full stop with no paid work since.
We already knew that there is a system here in Denmark, similar to the carers’ allowance in the UK, by which a family member can be paid to provide the care that would otherwise have had to be provided by the health service. I have been joking for some time that that’s how I would end my working life, but I had not expected it to come so soon.
As Jon said in his last post, he has now been offered funding for personal assistance for 12 hours per week, and I have been employed (through the local authority) to provide that care. Many concerns went into making the decision.
It’s obviously a lot more convenient for Jon to have me do the caring. Then he doesn’t have to get up and dressed when some stranger says so, or go to bed when another stranger says so, or get undressed and showered in front of a parade of short-term carers and holiday temps, or rely for his drug regime on someone with little understanding of Parkinson’s, or be unable to go for his walk until someone is due to come round and help with his shoe laces. On the other hand, I expect he worries about becoming too reliant on me. What if I break a leg? Or, worse, what if I get annoyed and stomp off?For my part, I don’t mind any of the actual tasks involved, but together they completely fragment my day. So although I only get paid for 1 hour and 39 minutes per day, there is no way I can fit paid work around this (trust me, I’ve tried). On the other hand, I can’t see myself enjoying a guilt-free day at the office in the knowledge that Jon is home alone almost the whole time, and relying on strangers the rest of the time. I dragged him along to Denmark, and I can’t now leave him surrounded by people he can’t properly communicate with.
So the best quality of life for both of us lies in me being the formal carer. It’ll make little practical difference, there’ll be a small but useful contribution to our finances, and I can continue to do my volunteer work for the Danish Parkinson’s Association for as long as possible. So I don’t actually mind, really. In a way it’s a relief to have that side of things sorted - it’s just that, well, I’d have preferred for it not to have become official quite so soon.
03 December 2011
Help and support
JON: The story so far … Jon, intrepid explorer of the properties of custard and kindred products, has launched an offensive to take back his brain, bowels and other body parts. Hence, the first thing I did on getting home after the neuro-psych testing a few weeks ago was to put together my oscilloscope whilst muttering darkly that “this is going to show them … dementia, HA! (mad cackle)”. So that’s the brain reclaimed, now for the other two.
If I remember rightly (and that’s somewhat unlikely given the current state of my neurons), I described the neuro-psychological testing and new drug in my last blog. A few days ago, we went back for another visit. Whereas last time was about diagnosing my problems, this time was more about identifying my strengths and finding coping strategies. First of all, it was established that I had taken the new diagnosis fairly well considering that I’d essentially been told my brain is turning to mush from both Parkinson’s and dementia. I have not become depressed or brooding, and nor am I in denial (I tried, but Marie wouldn’t let me). Apparently, that means I am well placed to tackle my cognitive deficits.
The neuro-psychologist suggested that I need to take many, short breaks so I don’t wear out my poor old brain and that I should try to become more organized in my surroundings. Marie and I have always disagreed, and frequently fought, about the point at which a room goes from being “homely” to being “a vile mess”, and it seems Parkinson’s is now on her side. In the interest of order, I threw away my collection of old copies of the New Scientist. It was nice to have them, but when would I read them? Probably never, I can hardly keep up with the new issues – although I have just remembered an issue which had a piece on Parkinson’s …
Further, I should consciously decide what things are worth remembering and what not – like not bothering to remember appointments and birthdays because I can just look at our wall calendar, not remembering about shopping or dinner because Marie can do that, but deciding what to focus on remembering from my Danish language school. Lastly, the neuro-psychologist suggested that I would benefit from attention training, though I have no idea where that would come from as cognitive rehabilitation is apparently not on offer.
That’s all well and good, but is it enough? I doubt it … but listen, what is that sound coming over the hill? Hurrah, it’s the cavalry coming to the rescue in the form of a very fine drug named Exelon. Exelon by name, excellent by nature, I say. I started using the patches three weeks ago. At first I felt a bit better, but being ever the pessimist I waited for the debilitating side effects to make themselves known. However, I have had no ill effects, and, as the Beatles sang, it’s getting better all the time. Next week Marie will ring the hospital to report this happy news and get a prescription for truckloads of this wonderful stuff.
In other news: as Marie mentioned in her last blog, she asked the local authority to send someone round to see if I’m feeble enough to be offered regular help. We were expecting to have to fight for support, either practical or financial. Well, it just didn’t happen. They treated our case as urgent, sent someone round within the week, did a thorough evaluation of my daily need for assistance, and made a decision on this within days. It’s something of a shock to me, coming from the UK, to be given the help we need with such speed and ease. On the other hand, Marie and I both feel a bit off about it – I’m kind of embarrassed that an outsider should see me as someone in need of help every day, and Marie says she doesn’t like the idea of me being sick enough to be treated as an urgent case.
Anyway, the upshot is that I have been granted a budget of 12 hours per week to pay for my own personal carer to attend to my every whim, such as drying my back and putting on my socks and sorting out my drugs. So who have I decided to appoint to this vital role? Why, it’s … Marie. It makes no obvious difference to our life as this is what she’s been doing anyway, but it compensates a little for the loss of her income from a “proper” job (she hasn’t had one of those since June) and it might enable us to buy in a bit of help with the cleaning and the lawn mowing. The hourly rate is rather pitiful, but it’s an improvement on nothing at all.
If I remember rightly (and that’s somewhat unlikely given the current state of my neurons), I described the neuro-psychological testing and new drug in my last blog. A few days ago, we went back for another visit. Whereas last time was about diagnosing my problems, this time was more about identifying my strengths and finding coping strategies. First of all, it was established that I had taken the new diagnosis fairly well considering that I’d essentially been told my brain is turning to mush from both Parkinson’s and dementia. I have not become depressed or brooding, and nor am I in denial (I tried, but Marie wouldn’t let me). Apparently, that means I am well placed to tackle my cognitive deficits.
The neuro-psychologist suggested that I need to take many, short breaks so I don’t wear out my poor old brain and that I should try to become more organized in my surroundings. Marie and I have always disagreed, and frequently fought, about the point at which a room goes from being “homely” to being “a vile mess”, and it seems Parkinson’s is now on her side. In the interest of order, I threw away my collection of old copies of the New Scientist. It was nice to have them, but when would I read them? Probably never, I can hardly keep up with the new issues – although I have just remembered an issue which had a piece on Parkinson’s …
Further, I should consciously decide what things are worth remembering and what not – like not bothering to remember appointments and birthdays because I can just look at our wall calendar, not remembering about shopping or dinner because Marie can do that, but deciding what to focus on remembering from my Danish language school. Lastly, the neuro-psychologist suggested that I would benefit from attention training, though I have no idea where that would come from as cognitive rehabilitation is apparently not on offer.
That’s all well and good, but is it enough? I doubt it … but listen, what is that sound coming over the hill? Hurrah, it’s the cavalry coming to the rescue in the form of a very fine drug named Exelon. Exelon by name, excellent by nature, I say. I started using the patches three weeks ago. At first I felt a bit better, but being ever the pessimist I waited for the debilitating side effects to make themselves known. However, I have had no ill effects, and, as the Beatles sang, it’s getting better all the time. Next week Marie will ring the hospital to report this happy news and get a prescription for truckloads of this wonderful stuff.
In other news: as Marie mentioned in her last blog, she asked the local authority to send someone round to see if I’m feeble enough to be offered regular help. We were expecting to have to fight for support, either practical or financial. Well, it just didn’t happen. They treated our case as urgent, sent someone round within the week, did a thorough evaluation of my daily need for assistance, and made a decision on this within days. It’s something of a shock to me, coming from the UK, to be given the help we need with such speed and ease. On the other hand, Marie and I both feel a bit off about it – I’m kind of embarrassed that an outsider should see me as someone in need of help every day, and Marie says she doesn’t like the idea of me being sick enough to be treated as an urgent case.
Anyway, the upshot is that I have been granted a budget of 12 hours per week to pay for my own personal carer to attend to my every whim, such as drying my back and putting on my socks and sorting out my drugs. So who have I decided to appoint to this vital role? Why, it’s … Marie. It makes no obvious difference to our life as this is what she’s been doing anyway, but it compensates a little for the loss of her income from a “proper” job (she hasn’t had one of those since June) and it might enable us to buy in a bit of help with the cleaning and the lawn mowing. The hourly rate is rather pitiful, but it’s an improvement on nothing at all.
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