October 29, 2008: gluten-free but also joy-free

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Carer Diary

October 29: gluten-free but also joy-free

Marianne Talbot's mother, who has advanced Alzheimer's disease, also has coeliac disease, which makes policing her diet a real necessity. Now she is living in a nursing home, Marianne has to hand over responsibility to its well-intentioned staff

I am worried about mum’s diet. I think the home - with the best will in the world - may be being a little over-enthusiastic with her gluten-free diet.

When mum moved in I went to meet the chef so I could be sure he understood mum’s diet. It was very pleasing: I left with the impression he saw it as an interesting challenge.

The other staff were all told that mum has coeliac disease, and given graphic descriptions of what happens when her diet is broken.

But I think there may still be some misconceptions.

Last week, for example, I visited mum at lunchtime. They were serving battered fish, chips and peas, and rice pudding. But mum was struggling with a solid-looking gluten-free pizza served with boiled potatoes. For pudding she had a plateful of melon and pear pieces.

The batter on the fish made it a definite no-no. But mum could easily have had fish in some sort of cornflour-thickened sauce. This would have been much easier for her. Poor old mum only has one tooth at the front, and eating the pizza was obviously too daunting, especially as it became cold and the cheese congealed.

I tried cutting it into small bits. I tried eating some myself (‘uuummm, delicious!’). I tried feeding her the scraped-off topping. But it was all too much. Mum just isn’t a member of the pizza-eating generation.

As for the boiled potatoes - well, why? No reason why mum couldn’t have had chips. Mum adores chips.

Mum also likes melon and pear (she used to describe herself as a 'fruit bat'). But every time I have been with her at a meal time recently she has had melon and pear. It must be getting a bit boring.

And anyway, just between us, mum and I would occasionally treat ourselves by eating whole tins of rice pudding. We LOVE rice pudding (especially tinned rice pudding). It is possible that the home uses a gluten-rich rice pudding. But gluten would be an unusual ingredient in rice pudding. I suspect they were just being cautious.

Obviously I’d rather they were cautious than reckless. But it is important that mum be given food that is appetising and easily manageable: she is so thin she can’t afford to lose more weight.

The home is, I think, relying too heavily on ready-made stuff. But some of this stuff is inedible. The bread mum gets on prescription, for example, has to be toasted or even the birds won’t eat it. Ready-made biscuits are slightly better, but only slightly.

It makes me want to cry when mum gets two anaemic-looking gluten-free chocolate ‘bourbons’ whilst others get freshly-baked scones with jam and cream.

Saga and caring

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