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Ms A’s chums

It seems that Ms Alzheimer’s was a bit lonely in our house. So she’s brought a few friends along to jolly us all up. Or to put it another way, My Loved One doesn’t, apparently, have plain old Alzheimer’s disease. It’s more complex than that.

For some time I’ve been puzzled by the range of symptoms he now has. Things like shuffling gait, dizziness, tremor, unsteadiness on stairs and bladder and bowel problems are not standard Alzheimer’s fare in most cases. Well, of course, I’m a journalist and a compulsive researcher so naturally I went in search of information. It’s what I’m programmed to do.

I concluded that he might – just might – have a different form of dementia such as Dementia with Lewy Bodies (DLB) which affects 100,000 people in the UK as opposed to 650,000 with Alzheimer’s. I agonised long and hard about what to do with the information because, if I’m right, then maybe a different sort of medication might ease some of the symptoms. A bit. For a while. Perhaps. On the other hand who am I to challenge an NHS diagnosis?

In the end, encouraged by our sons who said that if I didn’t do it I might always regret it, I cut through all the red tape and emailed our consultant as tactfully and politely as I know how. Of course you’re not supposed to do that. You’re meant to go through your GP into whose care we were discharged last year. But Dr V, the consultant, for whom I have enormous respect, treats me like a fellow professional and – I think it was in connection with these blogs and the circulation of information – gave me her email address.

Within two hours of my hitting “send” I had her secretary on the phone to make us an appointment. See why I like and respect Dr V so much? Said appointment took place last week.

We were there for a long time and she said several times that she, like everyone who knows MLO, can see a marked deterioration. We discussed the symptoms at length. Her opinion is that he probably has “mixed dementia”. That means that instead of confining himself to Alzheimer’s he also has the symptoms of other dementia-related conditions such as vascular dementia, Parkinsons dementia and DLB. We don’t do things by halves in this family do we?

This is, by the way, simply her informed opinion. Medics can’t be absolutely sure about different sorts of dementia until they can do a post-mortem – which might eventually be of interest to medical science but doesn’t help us much in the here and now.

Meanwhile is there anything at all which can be done about the worsening symptoms some of which are becoming really very difficult? Well it’s clutching at straws but we have to consider anything which might improve quality of life however marginally. At Dr V’s suggestion, therefore, we are going to see a neurologist who may want more scans and tests and who may then prescribe Parkinson’s medication to ease some of the motor problems.

All of that, obviously, is hedged about with ifs, buts and maybes. And naturally we have to go through the clumsy, juggernaut NHS system which means Dr V writes to the GP who contacts the neurologist whose department then sends an appointment (almost certainly at a time when we’re away or I’m working) via snail mail. I will never understand why you can’t phone and book an appointment with the person you need to see as you would the vet, hairdresser or dentist. It probably means it will be well into the new year before we get anywhere but we’ll see.

And while all this is happening – life’s rich tapestry – cognitive decline continues at helter-skelter speed. In the last week I’ve variously been told we’re on a refugee boat, that we’re firefighters and that, mysteriously, I must deal with the benchmarks. One of the carers tried to play Scrabble with him and found that he couldn’t do it at all – which didn’t surprise me because I’ve noticed that his writing and spelling is rapidly going awol. I’ve suggested she try Sorry! next time but I’m not holding my breath that he’ll be able to manage that either. He’s reading much less too as retention goes.

By the time you read this I shall be away for a four day residential music course learning to play (or something) the wonderful Schubert Quintet in C Major. Our elder son – what a hero! – is on man-sitting duties during my absence so it will a respite for me which I’m beginning to feel I need pretty urgently. Apart from anything else it will be the height of luxury to be able to rest all night undisturbed. And I don’t feel remotely guilty about that because I am, after all, returning to the helm at the end of the week.

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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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