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Alzheimer’s admin

I don’t think it would have occurred to me until recently that being diagnosed with a serious, degenerative, ultimately terminal condition would generate a load of paper work but believe me it does.

Take attendance allowance – which is paid via the Department of Work and Pensions to people who are seen to be need of extra help which may have to be paid for. It seems to open doors to other support so I thought we’d better apply.

Now, one hears a lot of things about this process. The rumour is that the decision makers are very wary and that it’s difficult to get your application “right” so you’re advised to get Age Concern to help you.

Well I downloaded and printed off the form – all 29 pages of it. Reasoning that I’m an educated woman and, a professional writer  for goodness’ sake, I decided that I could and would tackle it by myself to which end, earlier this year, I sat down with pen and plenty of tea one Sunday afternoon and got going. Surely it couldn’t be that difficult? It wasn’t but it did take me three hours.  My Loved One wanted to sign it himself so we did everything according to the instructions (me writing as if I were him, for example) and sent it off.

A week later, to my astonishment, we were informed that we’d been awarded the higher level of allowance. It felt like winning Wimbledon. Something had gone right for a change. Hurrah. It was the principle I was most pleased about but, obviously, it also means that there’s some spare money if we need anything extra – I’m beginning to think about an additional handrail on the staircase, for example and MLO quite often needs a taxi these days. I might, at some point, have to pay someone to come in and help in if I’m out working too. Worryingly, only this week, he burnt out a saucepan because I left him some potatoes to cook to go with his salad – for instance.

Having sorted the attendance allowance I thought we’d do the Blue Badge for parking next. One of the eligibility criteria is receipt of attendance allowance. I filled in the forms, photocopied things like the consultant’s diagnosis letter and sent it all off to Lewisham Borough Council.

I was a bit irritated that they summoned him for an assessment by a physiotherapist as if they didn’t believe either me or the consultant although she was very courteous when we got there. Having watched him on stairs, taken him for a walk round the car park and asked lots of questions said physio was evidently convinced because a week later we had a letter telling us we could collect the Blue Badge after a specific date.

I was annoyed with LBC about that too. In this borough Blue Badges can only be collected IN PERSON (imagine the complications if someone were really badly incapacitated) at set hours on Tuesdays and Thursdays. Even if the badge is for a child, he or she has to be with you  so presumably you’re expected to take your offspring out of school which I think is outrageous.  When we collected ours the administrator told me firmly – it’s obviously a script – that if I abused the badge then I’d be fined £1000 if I were caught which I thought was both insulting and rude. That information was included in the pack anyway and I’m literate.

For the record, my brother-in-law in South Kent was recently  sent his Blue Badge through the post as was a friend with a disabled child in Hertfordshire so this is obviously LBC being unnecessarily hostile and obstructive.

Finally I thought it was time I applied for council tax exemption for MLO which several people had advised me to do. More forms which I got endorsed by some unknown (to us) signatory at our GP practice. Silence. I only knew that LBC had processed it when I received a council tax statement on which the reduction showed. He is now deemed a “disregarded person” which seems unpleasantly Orwellian to me. You’d think someone could come up with a more tactful term. Or perhaps I’m being oversensitive.

It’s been a lot of tedious work but it’s oddly satisfying when it achieves its purpose.  Of course I wish desperately that we weren’t entitled to any of these things but given the situation it feels as if I’ve done the right thing. I’ve learned a lot along the way. None of this, for example,  should be the post code lottery it appears to be with so much depending on the whims and prejudices of remote decision makers.

Photograph: Happier times. 70th birthday in 2015

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Susan Elkin Susan Elkin is an education journalist, author and former secondary teacher of English. She was Education and Training Editor at The Stage from 2005 - 2016
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