Salad days

Sixteen months on from diagnosis and Ms Alzheimer’s is unstoppably tightening her grip. Or to put that another way I can almost see those sinister, devastating, toxic, amyloid clumps in My Loved One’s brain growing bigger and more numerous every day.

He has forgotten how to operate the microwave. All my attempts to re-teach a very simple procedure have failed so I have now given up. He can’t turn on either level of our double oven either. It confuses him that there are two. He can’t work out which switches control which and is thrown by the fact that there are two switches (on/off/mode and temperature) for each.

One evening a few weeks ago I went out about 5pm and left the oven on for him.  “Just put this pie in when you’re ready and give it about 25 minutes” I said and wrote it down. When I spoke to him before my show started a couple of hours later he reported that: “The pie wasn’t very nice. Cold in the middle” I suppose he didn’t time it properly or put it in the wrong oven. So that’s another strategy which clearly doesn’t work.

Until recently he could warm, say, a casserole though in a saucepan on the hob. Then a couple of weeks ago I left some potatoes, all prepped and in water in the pan, for him to cook and eat with a cold meal. When I got home the saucepan was a burned out, charred object – although I did, eventually, manage to save it with a lot of bicarbonate of soda and elbow grease. Fortunately he had noticed and turned off the hob. It was cold when I found it. If he hadn’t done that? Oh dear. At that point I decided against leaving him anything which requires heating or cooking.

So choices are now pretty limited when I am out working in the evening. Fortunately he’s always liked salad (barring tomatoes and cucumber). Just as well because he now has to eat a lot of it and I’m rapidly morphing into Catford’s most creative salad maker so that he doesn’t have to eat the same thing two days running.

I arrange it prettily on a plate, cover it with cling film and put it in the fridge. We’ve both been vegetarian since the late 1970s so I have to find non-meat/fish protein to add to it.  I’m a dab hand with all sorts of lettuce, shoots, peppers, chicory, cress, carrot, fruit, nuts, marinated/fried tofu or Quorn, hard boiled eggs, pulses, cubes of cheese, herbs, seeds and so on and on. Infinite variety, like Cleopatra.

At present it works – with instructions to eat it with bread and butter which he still seems to know how to assemble.

One of the questions professional assessors (nurses, occupational therapists et al) routinely ask is about ability to prepare food independently. The answer to that would now have to be “Not really.”

Part of the problem is that we’re both rather inflexibly locked into a life long habit of eating our main meal in the evening although I have started sometimes  giving him an eggs-on-toast type hot snack at lunchtime so that he doesn’t feel he lives on an exclusive diet of cold food. Actually, come to think of it, he probably wouldn’t notice but I’d feel I was selling him short. And of course when I get an evening at home I cook nice, hot things for us.

The bottom line is that the time is coming – and it’s coming frighteningly fast – when I shan’t be able to go out and leave him alone in the evenings at all. And I really find the prospect of not being able to work very alarming indeed. It’s my mainstay. It’s real life. It’s what keeps me sane and (reasonably!) sensible.

I phone MLO a lot while I’m out. I also write a schedule for each day telling him what I’m doing, what he’s doing, what’s happening, where I shall be and what sort of time I expect to be home. I have to print it in large letters as you would for a child.  It usually keeps him calm although there was one occasion recently when he rang me in a panic to tell me that there was a lot of traffic in our street (accident on parallel main road although he hadn’t worked that out) and he was worried about me. My car was on our drive. I’d gone out by train. Heaven knows what jumbled thoughts were alarming him.

If, Ms Alzheimer’s, you were a real person rather than a metaphorical construct of my imagination, I’d tear your bloody eyes out.

If the brain is the conductor of the orchestral body (sorry – I’ve probably reviewed too many Proms lately) then of course it controls/directs/manages every section of it. So once Alzheimer’s gets into the works then any body function can diminish or fail in consequence – even eyes.

My loved one has been slightly short sighted for most of his adult life and like almost everyone else has needed glasses for long sight since age 45 or so. For some while now he has, like me, opted for varifocals and worn them all the time simply because it’s easier than constantly taking them on and off and then tediously hunting for them. He’s had his current pair for about a year.

Recently he has complained several times that he can no longer see the “small” (ie normal) print in the newspaper. “OK. That, unlike many of your problems, ought to be fixable” said I, reaching for the phone to book him an eye test. And in the interim I dug out the fancy illuminated magnifying glass, Father-in-Law used to use to make life a bit easier between now and new glasses

Golly, what a tiresome business it was at the opticians. We were there for two and a quarter hours and I take this opportunity publicly to thank the very kind staff at Boots Opticians, Beckenham who treated him with cheerful, unpatronsing patience, throughout.  And of course a queue of late running appointments was building up behind us but no one grumbled. People can be heartwarmingly considerate sometimes.

The test itself with the optometrist took twice as long as it should because of his indecisiveness and forgetfulness. He then “failed” the field vision test twice and they had difficulty getting him to sit naturally and look in the right direction so that the technicians could get the measurements right for the new glasses. It throws him ever more and he gets increasingly flustered if people keep asking him questions or issuing instructions, however gently. He tries hard to cooperate, obviously, but I could see him floundering and, thank goodness, so could the staff. The highlight of the otherwise wearisome morning, though, was when MLO suddenly caught my eye and grinned naturally at the absurdity of it all. The technician saw it too and we all laughed.

The upshot of that long session is that we collect new glasses this week and repeat the field vision test – “when he’s fresh” – at the same time.  And we have to go back next month for the dilation test with eye drops. They ran out of time to do this latter procedure last week, besides which I think they could see that he wasn’t going to be able to cope with much more.

Within hours of this lengthy episode at the opticians I read about a new study in Washington, reported in JAMA Opthalmology. Researchers using a non invasive technique, somewhat unsnappily called optical coherence tomography angiography (do they call it OCTA for short?) have collected some evidence which suggests that there are detectable changes in the eyes of pre-clinical Alzheimer’s patients.

There is, in these people, significant thinning in the centre of the retina, many years before memory loss and cognitive decline begins to show. Or as one scientist working on the study put it “Changes in brain cells can be detected in the retina”.  I rest my case: there IS a link between Alzheimer’s and eyes just as with every other organ and function in the body.

Well, if this test had been available 20 years ago it wouldn’t have helped us much to know that once MLO was a septuagenarian, Alzheimer’s would set in fast. But think about it.  In time it could make a difference to others now much younger than us.

At present there is no way of warding Alzheimer’s off other than by making sensible lifestyle choices – and that’s by no means reliable. It’s not like lung cancer or Type 2 diabetes which can be (but are not always) directly associated with smoking and diet.  The only available Alzheimer’s drugs just alleviate worsening symptoms in the very short term. There is no cure, as we were firmly told several times at the time of diagnosis.

If, however, very early detection technology can be developed then maybe – just maybe – drug therapies which can zap or control the disease before it takes hold could follow.  And that’s glimmer of hope for future generations.

Meanwhile I strongly suspect that MLO’s worsening sight problems are Alzheimer’s related. Fortunately he can just go on having ever stronger glasses if he needs them and if I think very hard and apply myself I might remember how to enlarge the font on his elderly Kindle.