Tuesday 31 May 2016

It's not as if I didn't know....











This bridal froth adorning all the Devon lanes this spring is cow parsley..... or wild carrot...... or Queen Ann's Lace.....I love it what ever it's called. All this beautiful May blossom lining the roadsides lightens the chore of all the driving I do now with Robin....so that it isn't a hardship at all ...like driving through a wedding arch...again and again.

I didn't drive out today..... although Robin did with his lovely care workers....out to Uffcolme  this morning and then to Torquay and Paignton and back this afternoon.....while I buried myself in paperwork and filing and sorting and form filling.....my sister holding my hand through all the difficult making decision bits.

All day in my headI've been keeping at bay the soft voice of the consultant neurologist, Prof Z, who we saw this morning before 9 o'clock. He's the one who made Robin's first diagnosis of Semantic Dementia. We haven't seen him since last September. He works very closely with the consultant  neurologist Dr H who has diagnosed MND. He says they are connected, the two diseases - at least they have the same pathology -  but it's almost unheard of for MND and Semantic Dementia to develop together as it is usually the behavioural variant of Fronto Temporal Dementia which Robin doesn't have.

When Robin asks him, When will I die? he leans forward in his chair with his arms on his knees and says that it depends on each person how quickly the disease spreads, but commonly people with this disease die within 2 to 3 years of diagnosis.

Robin says, Really?  

And talking to him later I realise that he doesn't believe the consultant. He just thinks that is one option, that no-one really knows.....  that he could live for  another 20 years.... and  he says we'll see anyway. 

Which is true - we will see. Even if it's two different futures we are gazing into. What matters is living in the present....which I think is Robin's gift. He's much better at it than I am.

Now I just feel torn and tired and confused .....and very sad.....it's not as if I didn't know ......



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