Today's post is about dementia, and more precisely about the loss that is felt even though the person is still physically there with you - anticipatory grief.
There are few things as devastating as watching a loved one sink into dementia. What starts off as age-related memory loss that can be glossed over eventually becomes something that cannot be ignored anymore.
Often the realisation only starts when something happens that takes the dementia-sufferer out of their normal environment: in older people, that may be a fall, or a severe illness, or the death of someone close. Suddenly the person who has coped really well in appearance finds their landmarks have been shifted dramatically, and they now struggle to find their bearings.
They may find themselves at hospital, and there everything is different - the way to the bathroom, the way the phone looks, the food, the people looking after them. Confusion settles in and the fragile equilibrium that they have managed so far abandons them.
For the carer, this is the moment when it hits home: their loved-one is not "quite right" anymore. Their mental faculties seem halved and their bodily functions that have always been taken for granted take a hit too. There is still hope at that moment, that things will go back to normal.
But the reality is that things haven't been normal for quite some time - human beings are just very good at pretending that change is not happening. Then it starts sinking in: this is the new normal. OK, we think, we can do this, and we take it into our stride.
Until the next thing. It's a bit like watching the wheels of a car fall off in slow-motion - it still runs quite well on 3 wheels, but on 2 the crash is coming dangerously close.
And one day, you realise that the person you love, the smart, argumentative, in-charge adult you have known all your life is not really there anymore. Overnight (over a year or two) they have been replaced with someone looking like them, but not really them anymore. Think invasion of the body-snatchers.
If you are lucky, they have been replaced by a mild older version of themselves. If you are not, you get a more aggressive version. Neither seem to be them though.
And so you start your process of grief and loss: they're very much alive, but lost to you and their environment, existing only in a very reduced version of themselves. They need looking after, often 24 hours a day. From parent, lover, spouse, they have become children again, with all the needs that implies.
And the grief takes over the relationship, because you know that it is only a matter of time until all they have been is gone, and you're only left with the shell of who they were.
But somehow, that is also the moment when you can look after them, make sure they are comfortable, and give them what one gives a baby - unconditional love, despite broken nights and nappies and no conversation...
You can make it bearable for them, so that by the time they die, you have said good-bye in a meaningful way: by loving them to the end.