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They Don’t Tell You These Things

They Don’t Tell You These Things

I know my mother doesn’t comprehend what she is saying and doing to me but that doesn’t make it easier to cope.

I am doing my best but my mother has had Lewy Body Dementia for the past three years.

I recently read an article in a newspaper giving advice about how to care for a loved one with dementia. The gist of it was that you have to “see past” the disease, as the person you love is “still in there somewhere.”

It said you have to be patient, keep calm, and try to inhabit the “dementia world,” wherever that is.

It may as well have recommended buying a unicorn and riding it there. I’m not going to pretend I have answers, because I don’t.

bizarre behaviors

It may as well have recommended buying a unicorn and riding it there.

I’ve stumbled through the last three years with absolutely no idea if I’m doing the right thing or not.

What that article failed to offer, like most of the others I’ve read over the past three years, is useful, realistic advice about the hundreds of bizarre everyday challenges that dementia brings with it.

They don’t tell you about the reality of what it’s like to live with this appalling disease. They don’t tell you how to deal with your previously kind, gentle mother swearing at you and hitting you in the head as you desperately coax her into the shower to try and get rid of the ever-present smell of urine.

They don’t tell you what sort of nappies to buy when she becomes incontinent—let alone how you’re supposed to persuade her to wear one, or how to stop her taking it off and stashing it in a pillow case.

They don’t tell you how to persuade her to take her medication when she’s screaming that she’s going to call the police, because you’re clearly a member of the Gestapo who’s trying to poison her.

They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson and so wants to talk to him. Neither do they tell you how to placate the angry parents who think they’ve encountered the world’s frailest child snatcher.

They don’t tell you about the helpful passer-by who insists on intervening because they’ve mistaken her having a meltdown in the street (and you desperately trying to get her home) for a geriatric kidnapping.

They don’t tell you about the anger and resentment that arises when family members become invisible and stop visiting, leaving you to deal with the whole sorry nightmare. They don’t tell you about the hours of paperwork, endless bureaucracy and pointless meetings with social services you have to trudge through when all you desperately want is some advice and support.  It takes six months for them to assess whether or not you’re even entitled to get on the waiting list for advice and support.

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