What They Don't Tell You

My mum doesn�t know who I am.
Sometimes I�m her sister.
Sometimes I�m her dead mother.
Once I was Shirley Bassey,
which made for an interesting evening.

I�d assumed we�d have lots of time
to get to know each other properly.
I was wrong. Instead of visiting coffee shops,
we ended up visiting the memory clinic.
It�s like going home with a newborn baby,
but with less support and no balloons.

They don�t tell you that she�ll hit you
as you coax her into the bath.
Neither do they tell you what nappies to buy
when she becomes incontinent,
how to persuade her to wear one
or stop her taking it off
and stashing it in a pillow case.

They don�t tell you what to do
when she thinks that the small boy
you pass on your walk is her grandson,
and tries to talk to him. Nobody tells you
how to placate the angry parents.

They don�t tell you that she�s never
going to phone you again, see you get married,
be a grandmother to your kids.
Nobody tells you how to channel the anger
you feel that your fellow thirtysomethings� lives
now involve marriage, mortgages and children,
and yours revolves around a confused old lady
who doesn�t know who you are.
They�ve chosen their responsibilities;
you�d give anything not to have yours.

They don�t tell you that you�ll spend hours
trying to feed her a spoonful of hospital jelly
even though she�s pretty much given up on eating,
because you can�t just watch her starve.

It doesn�t matter how distraught you are
that she�s wasting away before your eyes,
or how much it upsets you to agree
to the doctor�s request for a DNR order;
this disease is relentless .

I�m still not sure how to feel about it
when there�s nothing tangible to mourn.
�Waking grief� someone called it.
When the person you knew is gone, but not gone.
But it�s not. It�s a waking, sleeping,
cloud of despair. But then nobody tells you
how to grieve either, do they?

Especially when there�s no funeral to go to.



From What they don't tell you about dementia by Dawn Vance, The Guardian 28 January 2015. Submitted by Angi Holden.