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When “help” doesn’t help

When dementia first starts to nibble, it’s tiny things such as slight slowness of speech when you’re tired or suddenly deciding that perhaps you do like cooked cheese after a lifetime of insisting that you don’t. Then as suspicions that the many-tentacled Ms Alzheimer’s may really be lurking in the wings, everyone tells you that you must get a diagnosis. “Then you’ll have access to HELP” runs the received wisdom. We heard that many times from many people.

So that’s what you do. You see your GP who refers you to the local hospital’s “memory service” – a hilariously inapt euphemism . It should, of course, be called the “Dementia Department”. I suppose they have their reasons for this coy refusal to call a spade a spade.

The process is tortuous. There’s a home visit from an assessor who asks the “client” (yes, really) who the prime minister is and tests spatial and cognitive skills with funny little drawings. They’re  rather like the ones My Loved One and I both remember from the LCC Eleven Plus intelligence test – for the record we both passed when we were 10. I very much doubt that MLO would now.

Then she talks to the consultant who orders a brain scan at Kings College. A couple of false starts precede the appointment with the consultant who finally delivers the dreaded, scan-based diagnosis. Four months after that – almost a year after we initially saw the GP – comes another appointment at which symptom-lessening (maybe) pills are prescribed.

Our – or rather MLO’s – diagnosis appointment was 29 April. “Nothing changes” said the consultant valiantly denying the self-evident truth that everything does. Instantly. One minute you’re a chap who can’t always lay hand on his car keys and the next you’re an Alzheimer’s patient. It’s a death sentence – although the time scale prognosis is very vague. There’s no chemotherapy or anything with any hope in it for Alzheimer’s patients. It is penetratingly clear that the three of us, MLO, Miss Alzheimer’s and I, are heading downhill  towards “second childishness and mere oblivion/ Sans teeth, sans eyes, sans taste, sans everything”. Good old Shakespeare. He’d seen it all.

I can’t help thinking about all this “help” and “support” which is cracked up to be so indispensable. The trouble is – that if you’ve always been capable, competent and independent – allowing these professionals into your life feels very intrusive and alien.  “Monstrous regiment of women” mutters MLO under his breath more than once. The line between “supportive” and “bloody patronising and interfering” is a potentially narrow one.

When the occupational therapist came to our house she wanted to check the staircase and see what MLO can and can’t do. Well at the moment he can do most things except work the locks on the external doors. And he’s a bit shaky on our stairs which are steeper than the ones in the house we moved out of last year. She proposed an additional hand-grab at the top of the stairs – which has turned out to be useful. Our youngest granddaughter, aged 2, (known to my Twitter followers as GD4) hangs on to it carefully as she ascends the stairs too. She, of course, will get better at stairs unlike her Grandpa who won’t.

The OT’s suggestion that we leave the outer door open was a non-starter though. It runs totally against the Metropolitan Police’s security advice. Before she came I was terrified she’d upset MLO with crass, tactless suggestions about karaoke and bingo at a day centre but, to her credit, she got the measure of us very quickly. She soon worked out that he’d be more comfortable at a Mahler concert at Royal Festival Hall than in an old people’s club – although she can’t, obviously, organise the former. On the other hand some of the information leaflets she left me were aimed at the lowest level of ignorance. Yes, I know how to present information simply and in bite-sized chunks. I was a teacher for 36 years, for goodness sake. Dealing with an Alzheimer’s victim is very much like working with an autistic or severely dyslexic child.

Other Alzheimer’s professionals are a different story. One, in particular, is probably trying very hard to be clear and inclusive but her manner comes across as gluily patronising. And, I am a working professional with a diary and a lot of commitments. I cannot cancel a working day in the Midlands, arranged for months and involving a lot of other people, just because she decides that’s the day she wants MLO and me to meet the consultant. It’s called the memory service because they are, one presumes, giving us some sort of service not issuing us with orders.

The consultant herself is refreshingly different. She is quite prepared to talk to me as a fellow professional in a different line of work – and at the last appointment she told me all about the (excellent)  app  http://appstow.com/app/1266711995/oxleas-dementia-oxl she has devised for Alzheimer’s patients and their carers and I told her about these blogs. She is also, once you come face to face with her, prepared to make appointments by negotiation at mutually convenient times. We all sat in her consulting room and got our diaries out. Very grown up.

So this whole notion of help and support is a mixed blessing. Yes, it’s good to know that you’re not alone – but then we never were. We have a terrific family and many warmly generous friends. There is very little (apart from the pills) that we need at present which we can’t generate from our own networks. And I could certainly do without being told bossily “This really is very important, Mrs Elkin. It concerns your husband’s health. Surely you could rearrange your work and attend this appointment?”

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Susan Elkin
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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