Don’t do as I do, do as I tell you.

The above is a favourite saying of my Victorian grandmother.  She was utterly brilliant and knew a very great deal, having been brought up in a pub on the River Tyne and raised five children through two world wars.  The saying, however, is rubbish.

I’d just like to remind you, or notify you, if you have recently discovered the dementia diaries, that they are absolutely NOT intended to be an instruction manual about what to do if you find yourself looking after someone suffering from dementia.  I am not a doctor, I am not a health care professional.  Although I have had a lot of experience, as I am now into my eighth year in total of caring for the demented, and have read more books and online stuff about dementia and the brain than I ever thought I’d want to, and even though I have lost count of the number of doctors who have asked me if I am one of them, I still have no medical qualifications and I am one hundred percent NOT giving advice.

I can’t give advice.  Apart from me not being qualified to do so, your dementia sufferer and all the circumstances and difficulties pertaining to their situation, is theirs and theirs alone.  Each sufferer of any disease is still an individual first and foremost; the day we start sticking labels saying: cancer patient, demented person, bi-polar TREAT THIS WAY…. is a day I hope never to see the dawn of which at all.  To this end, the doctor’s consultation, because the most you can ever say is that certain treatments have proved effective with people with a similar condition.  This is particularly true of vascular dementia which is the least predictable of all the dementias.  How could it be otherwise when the progress of the disease depends on the condition of the 60,000 miles of completely individual blood vessels in an individual?  That’s 60,000 miles of potentially different from anyone else, so you can’t predict what’s going to happen to the individual.  That is, also, without even going into the difference between that brain and any other on the planet before the disease took hold.

I’m not giving advice because I can’t and I so hope no one will ever say: I read about someone who did it this way and we should as well.  The reason I began writing the dementia diaries is that I had hoped in the thirty years since I had assisted in the care of my mother-in-law, which was a complete and total shot in the dark, with no literature from the doctors, nowhere to turn for help and no anything of any kind except other family members, that the situation would have improved.  And it hadn’t much at all, certainly not thirty years worth of apparent improvements in terms of help and assistance.  This time round I found one very optimistic upbeat booklet which was about as much use as a smile in a snowstorm and a website offering online chat that was never manned and that was it.  The isolation that seems to cling to dementia was working exactly the same magic as before on anyone who stepped up to help.  Apart from the initial diagnosis and the doc you’ll see every three months, if you’re looking after someone with dementia, you are on your own, sunshine, out there with a lunatic hitting you with a stick, who will do it more if you shout at them; how great is that?  Nearly everyone else will run away as fast as their legs will carry them.

Last time round it made all three of us seriously ill afterwards.  This time round my father pretended it wasn’t happening and refused to get any help or make any provision.  I understand, he was old and it is frightening.

And so when I found how much information there still wasn’t for people forced to get to grips with this disease I started dementia diaries, in the hope, maybe, of saving someone else from being made as ill by caring as we had been last time.  I wrote to dispel some of the fear by describing how it was day to day for me.  I have written from the only viewpoint I have, which is my own.  When I had cancer  I found the greatest fear was the unknown.  I urgently needed to know things like:  how much will it hurt?  What will it be like each day?  Exactly how disfiguring will the surgery be?  Can I still…………. and so on and so forth. The information we need when faced with something awful are the actual details of day to day living with the problem.  The at-the-end-dying bit is only going to happen once, for anyone with anything.  It’s the everyday minutiae of coping with the situation minute to minute which will occupy the next few years of your life.  I find the most helpful information is the stuff that doesn’t tell you the big things, it’s the stuff that tells you the small things, above all the stuff that tells you what is normal in an abnormal situation the: should it be swollen like this in week three?  stuff.  That stuff.

I cannot predict my future, let alone yours.  All I can do is tell you how it is for me, in the small details blow by blow.  If, at the very least, you read it and think that someone else is enduring the same thing and you’re not as alone as you sometimes feel, then I might have done the job I set out to do.  If there’s anything I’ve written which you think might work for you in your situation, perhaps you might like to give it a go.  Maybe something I wrote might suggest an avenue worth exploring which you had not been aware of previously.

All I’m offering is my experience of a difficult situation so that, if you find yourself in the same situation, you don’t find yourself there alone.

Don’t do as I do, don’t do as I say, do whatever works for you, do whatever is doable with my complete admiration for even having the guts to stick it out and have a go.

All you can do is all you can do.


JaneLaverick.thinking a bit.  (Don’t worry it’ll wear off.)

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