Early diagnosis? No thanks

Why is so much Alzheimer’s research focused on the concept of diagnosing the condition earlier? It isn’t as though there is any treatment which can then be applied to prevent the full-blown disease from developing.

An early diagnosis of, say, breast cancer after a routine mammogram is a completely different kettle of fish. Treatment at that stage often saves lives which is marvellous. Until there is comparable treatment for Alzheimer’s I struggle to see the advantage (for the patient and his/her family, anyway) of knowing a lot sooner that this inexorable disease is going to kill you slowly and horribly.

My Loved One lost his sense of smell 25 years ago. I now know that is quite a common pre-Alzheimer’s symptom. At the time we naively thought it was odd but quite funny and put in smoke alarms. What good would it have done us if, back then, someone in medical authority had done tests and advised us that he would go on to develop full blown Alzheimer’s? These days If I hear of anyone else mentioning anosmia (the posh name for being olfactorily challenged) then I keep very quiet. How can our experience possibly help?

Diagnosis is a very mixed blessing. You walk into the consulting room feeling like a normal human being with a future, a cat and life to lead and you come out weighed down by a massive invisible label. You have crossed that huge chasm which divides the well from the terminally ill. The Grim Reaper is waving his sickle at you and you can see him clearly. You are now a patient and your life is, at a stroke, medicalised.

And I’ve never forgotten, at an assessment meeting a few weeks before Diagnosis Day, the nurse turning to me and saying: “Now I have to ask you a few questions as his carer”. For a minute I couldn’t think what she meant because I had never thought of myself in carer terms at all. I was, and am, just his wife. It seemed almost laughable at the time. But I too was about to be dragged, very much against my will, across that chasm to become a medical statistic – complete with hideous, unwanted new job title.

I sympathise a lot, then, with people who are clearly in the early stages of Alzheimer’s or other form of dementia but who have – thus far – refused to discuss it with anyone official. They know that they can, more or less, carry on normal life for the moment and that as soon as they hand their problems over to the medics and support workers everything will change and their lives will no longer be their own. Well meaning “help” will arrive in the form of occupational therapists, advisory nurses, care assistants and the like. Who can blame them for delaying such intrusion for as long as possible? I certainly don’t.

None of this is, in any way, a criticism of the system. Almost every NHS employee we’ve seen in the last two years has been – in no particular order –  helpful, kind, practical, friendly, supportive and willing to give us as much time as we’ve needed.

Take the GP we saw last week for a “routine review”. We seem to see a different man or woman almost every time we attend the surgery because it’s a big practice. In this instance, though, it was Dr K who happened to be the first GP we saw not long after we moved when we finally decided to “report” My Loved One’s multiple problems. He remembered us and was really delightful – leading the confused, wobbly MLO gently into his consulting room by the hand, carefully noting all our concerns and promising to come back to me soon with some answers. He also had an animated chat with me along the way about the Globe’s Romeo and Juliet which he was due to see with his wife and daughter that evening and which I am reviewing this week.

But I digress. My point is that diagnosis recast us in new roles. MLO became an invalid and I his carer. And it was instant. On 28 April 2016 we were an ordinary couple planning and looking forward to things. By the afternoon of 29^th our whole world had shifted. I remember the consultant saying bravely at that appointment: “Nothing changes”. Well I suppose she meant well but it’s a lie because everything changes diametrically the moment you know you have this illness for which there is no cure or even any effective treatment. Suddenly your future has gone and you face only terminal decline. But, of course no one is going to tell you that in so many words. They have to be as positive as they can.

So personally I am very glad we didn’t get a diagnosis any earlier. It would simply have curtailed our normal life together sooner and for longer. And until they manage to develop some effective, interventionist treatment I shall continue to be sceptical about “earlier diagnosis” as a research aim. Yes, I know that if they can get people on board long before real illness sets in, maybe they can monitor and observe the decline more closely which might help research.  Consider, though, the frame of mind of the individual whose future is being made even worse by having to live with the certainty that Alzheimer’s will eventually fell them. Sometimes ignorance – innocence anyway – is better. I’m really grateful that we didn’t know until relatively recently.

I’ve started a fundraiser for Alzheimer’s Society to mark our Golden Wedding at the end of March 2019. If anyone wants to contribute here’s the link: https://www.gofundme.com/elkin-golden-wedding

Some organisations clearly don’t understand dementia. They are so bound up in their own red tape, procedures, rules and lording it over their customers that they have completely forgotten (if they ever knew) what life with Ms Alzheimer’s forever at your shoulder is actually like.

But first the positive. Most people and organisations are, thank goodness, wonderfully empathetic and helpful. Take the staff at Pret a Manger in St Martin’s Lane last week who were brilliant when MLO needed the loo but both the gents and the disabled facility were out of action. An absolutely splendid male Pret employee helped MLO all the way down the steep stairs and temporarily closed the ladies so that he could access it – and then fetched me when there was a problem. Or what about Thomas Sultana of All Gleaming Clean (who has done jobs for me before)?  He recently came to clean our ailing, much scrubbed landing carpet and said without a fuss “You need Scotchgard. I’ll come back and do it next week.” Then there was an extraordinarily kind young woman in the ladies’ loo queue at Arts Theatre where MLO and I saw Six last week. She could see that I couldn’t make him understand where to wait for me so she said “I’ll stay with him. You negotiate your way to the front of the queue and I’ll go when you get back.” And, for that matter, let’s hear it for the NHS. Apart from its absurd, antediluviaun, clung-to appointment/referral system the service we’re had since MLO’s diagnosis has been excellent.

Sadly, the fact that so many people so willingly go the extra mile makes the exceptions stand out even more woefully. I’ve decided they deserve to be named and shamed so here goes.

HSBC needs to learn how Lasting Power of Attorney works. I went to a great deal of trouble, carefully following Office of the  Public Guardian’s  quite complex instructions and  safeguarding rules to get all the right documentation including certified copies of the LPA document which are validated (with a special Braille-like watermark) by OPG. When I took one of these to HSBC they said they couldn’t accept a copy.  They had to have the original – which is utter nonsense. They also made MLO sign a lot of papers which defeats the object of LPA.  The document I had in my hand supersedes the need for all that. The woman we saw (twice as she insisted I go back with the original LPA document) was very pleasant and of course it isn’t her fault that HSBC, in arrogant ignorance, has imposed this way of working on its staff.

And I’m furious with Thames Water who write to me regularly because they want me to have one of their tiresome smart meters. I have resisted that and shall continue to do so. A recent letter commented that our water consumption is higher than average for two people. Well of course it bloody well is. One of us is sick. He needs far more showers (three so far on the day of writing – I’ll leave the details to your imagination)  than the rest of us and he generates a great deal of laundry. Whoever manages, or mismanages, the sending out of irritating, insulting even, letters like that ought to be sent on an awareness training course immediately.

I’m not pleased with the National Trust either. I phoned them to renew our joint membership – or, to put that another way, to make a donation of £120. Despite my saying that he has Alzheimer’s I was told that I had to bring MLO to the phone to authorise the renewal unless I paid from a joint account. They wouldn’t take the payment from my personal one. In exasperation I paid from a joint account in the end although it wasn’t my preferred option. I complained about this on Twitter which eventually led to an email from an apparently helpful NT person saying that she would make me the “lead member” instead of him which would solve the problem. Then the membership cards arrived – still addressed to him and with an asterisk against his name. So I shall have the same problem next year. Or maybe I won’t bother. Their loss.

Then there’s Lewisham Borough Council. I applied for a Blue Badge for disability parking and enclosed the support letter from our GP. But no, that’s not enough for LBC and he was summoned for a physical assessment by their physiotherapist. She must have endorsed our application because the badge was granted. LBC, however, insists that it is collected in person by the disabled person him or herself and the office is open only for a couple of hours a week. Not exactly helpful for people who are ill, disabled or both.  Eventually I got him there to collect it and the atmosphere was frostily hostile. “Please be aware” the LBC jobsworth said to me coldly “that if this badge is misused or displayed when the named person is not present there’s fine of £1000.” Well, actually I knew that because I had read all the small print when I filled in the application form. It’s all over the paper work which comes with the badge too and – do you know what? –  I can read quite well.  And for the record I wouldn’t dream of abusing a disability parking badge anyway. If I’m on my own I’m the sort of person who deliberately parks on the far side of a car park to get some steps in. In short, I really could do without being spoken to so rudely.

There’s far too much of this sort of thoughtlessness about. We hear a lot about dementia awareness these days and it’s good to see “Dementia friendly” notices and badges becoming commonplace. But until every single organisation gets the message there’s still a lot of work to be done.

* I’ve started a fundraiser for Alzheimer’s Society to mark our Golden Wedding at the end of March. If anyone wants to contribute here’s the link: https://www.gofundme.com/elkin-golden-wedding

Not long after My Loved One and I “came out” as an item (not that anyone was surprised) he arrived one day at my family home to find me in the kitchen busy with the Tuxan and a couple of bushes, energetically cleaning my shoes.

“I’ll do that” he said, aged 22, taking them gently from me and picking up the brush. “And I’ll go on cleaning your shoes until we have a son who can do it for you.”

Sexist? Well, yes I suppose so by 2019 standards. Back in 1967 I thought it was one of the nicest, most romantic things I’d ever heard. And I’ve always been a pragmatic feminist. If smiling sweetly and exploiting femininity can get a dirty job (changing wheel on the car is another case in point) done by someone other than me, then I’ll go for it, thanks very much.

The incident reminded me of Gommy, my lovely grandfather, too. He was an enthusiastic, patriarchal shoe cleaner and regarded it as every inch a male job although he failed to pass that ethos on to his son, my father which is why I was cleaning my own shoes that day. Throughout my childhood and teens when I arrived at the grandparental home my grandmother would say, in her usual veiled, mildly critical way: “Oh look at your shoes, Dear. Pop them off and Gommy will clean them for you”.

MLO kept his promise. Once we were married and sharing a home, it was a very long time before I ever had to get out the shoe polish. And he always made my shoes (and his own) look lovely, happily attacking them in the traditional, old fashioned way until they gleamed. For the record, though, we went on to have two marvellous sons, both of them caring, supportive and practical especially these days when we need it most. I don’t, however, remember either of them ever cleaning my shoes  – or their own very often for that matter. Their father must have neglected to educate them in this specific form of gallantry/chauvinism. Delete as applicable. I must  remember to ask them whether they clean their wives’ shoes today. Somehow I doubt it.

I’m sure you can see where this is going. Ms Alzheimer’s knocks out the ability to do simple tasks at the rate of at least one a week. Shoe cleaning went long ago along with bed making, loading the dishwasher, making  toast, writing messages and getting washed in the shower – among many other things.

So shoe cleaning rather neatly symbolises our marriage and where we are now. I keep the shoe cleaning box in the coat cupboard in the hall. MLO has no idea even where to find it.  If I go for a walk in the park and my shoes get muddy then cleaning them is entirely down to me. I clean his occasionally too – unthinkable until a couple of years ago. Now he sits in a different kitchen, in a sort of quiet vacancy, and watches me applying polish and buffing if off exactly as if the clock were wound back 52 years and we were back in my family home except that he can’t now offer to take over. Back then we were eagerly looking forward to the future we were planning together. Now we’re unravelling. There is no future. Just a great deal of past – and many pairs of fondly remembered shiny shoes.

 I’m truthful by nature. I can’t help telling it how it is. And I suspect these days that other people sometimes find my unrestrained honesty a bit disconcerting. “How are things?” they ask kindly. Then when I reply bluntly that it’s pretty awful, often difficult and getting worse every day they look uneasy because where does the conversation go from there? Sorry, folks.

Many people with Alzheimer’s – or caring for someone with it – go into denial. I hear all the time, often from those same well meaning enquirers, about grannies, uncles, parents et al who simply refuse, or refused when they were alive, to acknowledge the truth of what is/was happening to them. Well yes, I can understand that very well. If you ignore something determinedly enough you can, in a sense, convince yourself that it’s not real. Perhaps that’s easier. But I’m cursed, not only with Ms Alzheimer’s in my home, marriage and life, but also with a lifelong attachment to facing facts head on.

When I was eleven and in my first term at a pettily rule-bound, old fashioned grammar school I made a mistake with signing in on the dinner list so that the class numbers didn’t add up. Not going into lunch and getting a tick was regarded as a heinous sin. When our form teacher told the form, very seriously, about this appalling crime the next day as a warning to the perpetrator I immediately leapt to my feet and said “Oh Mrs Grant, it’s all right. That was me. I’m really sorry. I made a mistake. I had to go into the other sitting because of my violin lesson”. Problem solved. Now, I don’t actually remember this incident but decades later at a reunion, Mrs Grant told me about it and said she had never met a child as straightforward and honest as me. I had, it seems, completely knocked the wind out of her sails with my open inability to dissemble. Well, I haven’t changed much.

My Loved One is seriously ill. Alzheimer’s is a terminal disease and that means that sooner or later it will kill him. And I can’t – absolutely can’t – pretend otherwise. I don’t spell it out to him, obviously, although occasionally he is both lucid and realistic and we have sometimes talked a bit about the future and the inevitability of where his illness is taking him when that’s what he wants. In general though, I just jolly him along. I can’t lie – never could –  but I do my best to keep it light and casual.

I’m open with everyone else, though, to such an extent that I sometimes forget appropriateness. I found myself providing a graphic account – far too much information – of our frequent nocturnal bathroom trips to a sympathetic friend over lunch the other day, for example. She managed not to wince, bless her.

And I really should not have asked our elder son whether you can hire a church for a secular funeral. No wonder he looked askance, gulped, paused and finally said faintly: “Don’t you think you’re being a bit premature?” The trouble is that my very active brain is perpetually beavering away and coming up with a detailed plan of action for every eventuality. It’s my way of coping.

These blogs are, I suppose, another aspect of that. What you get here is the bald, bleak unvarnished truth. When I started them almost two years ago I asked My Loved One’s permission to write about his condition and he gave it readily. At the time he said, quite sensibly, that it’s easier all round if there are no secrets about what’s happening to him and that my writing about his illness might help others. He used to ask quite often: “Have you been writing about me?” Then he’d potter off  quite cheerfully and look at my website on his PC. I think he rather enjoyed being the centre of my authorial attention for once.

Things have moved on since then. It is many months now since he has read one of these posts. He no longer knows how to turn on his computer on (and I’ve semi-commandeered his unused office as a music room). He shows no interest if I offer to show the blogs to him on my PC or iPad.  So I am now, effectively, communicating with the world without his knowledge and there’s no need to fudge anything even here.

I shall, therefore, carry on describing the situation in all its ghastly awfulness which, as a few wise people have recognised, does actually help me a bit. There is something therapeutic about truthfully writing down your experiences and feelings – it doesn’t dispel them, of course, but it somehow feels as if the horror is managed and put to one side once it’s openly committed to words.

* I’ve started a fundraiser for Alzheimer’s Society to mark our Golden Wedding at the end of March. If anyone wants to contribute here’s the link: https://www.gofundme.com/elkin-golden-wedding