Some observations and thoughts

I didn't realise it at the time, but on the 4th of January 2019, I appear to have got divorced. I've not been officially advised of this, nor has the 'former' wife, but the signs are there. Well, ok, some of them. It's just baffling and a little annoying that no one first checked with us that we wanted to. It would have been polite.

Ok, I may be being overdramatic here, but let me explain............

Shortly after my diagnosis, we received a letter from a local voluntary group to myself "and Carer". It was a depressing reminder of things to come. The wife, however, was more than a bit put out "Carer! I'm not your damn 'Carer', I'm your wife"!

"Besides which, you don't need a 'Carer'"

She was right on both points. As my regular readers (are there any?) will know by now, Parkinson's is a degenerative disease. Early symptoms are frequently tremors (my first symptom, which led to my diagnosis), slowness of movement and stiffness and tension in the muscles. All annoying in their own way, but in the early stages at least, not a major problem with a relatively small impact on daily life.

I can wash, dress and feed myself. I still hold down a job. I'm still allowed to drive, although I now have a time-limited driver's licence which needs regular renewing. I would say life is still 90% normal. 

And whilst I remember, I'm going to indulge in a little diversion and have a rant at the expense of the Drivers and Vehicle Licensing Agency (DVLA).

When I was diagnosed, as they have to do, the Consultant advised that by law I had to inform the DVLA of my diagnosis and hand in my current driver's licence. The DVLA would then contact him and ask him to confirm my fitness to drive, he reassured me that this wouldn't be a problem. And it wasn't, in a relatively short period of time I got my new, time-limited driver's licence. And a letter, warning me of all the dire consequences of failing in the future to keep them updated with any changes to my ability to drive safely. The style was as if advising a repeat criminal of their parole terms, and that any violation would be dealt with in the strictest manner.

Now, why was it necessary for the DVLA to communicate in such terms? Yes send a polite reminder of our responsibilities and then in the absence of evidence to the contrary, assume intent to comply and leave it at that. Putting it mildly, this really pissed me off. 

It reminded me of the time I moved into a new flat and waiting for me on the mat was a letter from the TV Licensing, threatening me with prosecution as I hadn't yet bought a License for that address. 

It was over a week old.

However, there is nothing I can do, except nurse my grievance and complain about it on my blog, in the sure and certain knowledge that readers will think me a bit obsessive.

Anyway, back to my original point.

Late-stage symptoms are as you would expect, much more severe. The shaking can be more extreme, stiffness will be more disabling, and there is likely to be marked stooping, potentially with hallucinations, and memory/dementia issues. And that's just some of it. What you can be almost certain of, is you will need support in everyday life. Whether it's washing, getting dressed, going to the toilet or feeding yourself you will need a carer.

And if you are married, that is likely to be your partner. So the best you can say is the letter we received was a bit premature. But it also seemed to suggest a redefinition of our marriage. Not one we had yet agreed to.

Which is frankly a bit presumptuous of them. For a couple of reasons

Firstly when we married our vows included the words "in sickness and in health", words that we promised to take seriously. I need to add here, that the vows taken also, at the wife's own request, included the words "and obey".  I think the wise course for me at this juncture is to maintain a diplomatic silence, apart from observing that it's difficult to think of any examples.

When you marry it is easy to get carried away with it all, believing that life is rosy and you have only good times ahead. These words are an important reminder that being husband and wife isn't only for the good times, but is also for difficult times. 

So being a 'carer' is already part of the job description. It doesn't need to be highlighted.

However and secondly, the presumption that the spouse is willing to be the carer may be misplaced.

Ok, this next bit may come across as a bit judgemental, but it's the way I see it. I know of couples where one of them starts needing extensive, perhaps full-time care. And the other half of the marriage, to put it bluntly, does not want their life curtailed to such a large extent.

The result, sometimes with the encouragement of family and friends, is that they decide that they have a right (no, duty) to put themselves first, divorce their partner and dump them in an institution. Then look for someone else to "love and honour".

Unless of course they too become a drag on their social life

That's not to say that we should expect couples in that situation to become prisoners in their homes, with no support or social life. There is a need for us as a society to address the lack of support many carers get, the answer shouldn't have to be abandonment in an institution.

So a person can't be forced to be the carer, so perhaps before making such assumptions they should first check.

As I've previously said maybe I am being oversensitive, but personally, I find it depressing. It seems to me to be further confirmation of how my life is going to change, how that autonomy we all like to believe we have over our lives is going to be stripped away from me. 

Thinking you have control over your life has always been a bit of an illusion, but with a life-changing condition such as Parkinson's, this illusion is taken away. 

In a world where there is an unbelievably bitter war going on over our choice of pronouns (a topic I have no intention of getting into here, due to the risk of Two-Spirit, or some other gender fanatic of either side, trolling me), why can't some organisations accept that me and the wife have decided our titles and stop shoehorning in another one? 

As a final random thought, one thing that slightly annoys me is how all too often literature handed out by various Parkinson's groups, has photos of happy, beaming patients. In the unlikely event that a photo of me is ever used, I will make it clear that any used needs to show me looking pissed off and miserable.

Being incontinent and constipated is no laughing matter. Not that I am. Yet. Besides the wife tells me, that miserable Scot has been my go-to look for years now.

 😡 

But this is probably only an issue for me and the better-balanced portion of society will wonder what on earth I'm on!