It has become very clear to me that Leaf is in a process of unlearning. It’s as though swathes of basic information are being deleted from his brain. This is happening in a variety of ways. It’s strange and disquieting to witness his inability to decode correctly the information he’s receiving into a coherent environment.
Rationality no longer guides his actions and he’s increasingly losing the ability to distinguish one object from another or to understand their functions. This condition is known as Agnosia – the inability to process sensory information. Watching him in action is often very puzzling. I get the impression his sense of touch and sight are getting muddled. He will pick up an item and examine it, clearly not sure what it is and then either hide it or put it somewhere unsuitable. It’s hard to explain but I will try – hopefully in doing so, I’ll be able to better understand (and react) myself.
Arranging unrelated items in neat patterns, on a table, work surface or the bed is favourite at the moment. So far he’s avoided the floor, which is just as well with an exuberant young dog in our lives! Cutlery is often included along with photos, playing cards, condiments, pens, torn papers, half-eaten toast and jam, apple cores and old envelopes. Everything is meticulously placed, sometimes over-lapping, often upside down or face down. The logic of this obviously escapes me, probably because logic simply doesn’t come into it.
He has a problem with the location of items. When I say something is behind him, he can’t work out what behind him means, or on the table in front of him. He will look at the item and not see it. Upside down is a concept he often has trouble with. He will claim he can’t locate things because he’s left-handed, especially when I suggest something is on the right. As for the house, he still can’t find his way around when he’s tired and getting into the front seat of the car beside me frequently presents a problem as does fastening the seat belt.
Although he mostly dresses himself, which I encourage for the moment, he often puts clothes on in the wrong order, inside out, back to front or even on the wrong part of his body. T-shirts on top of jackets, underpants on the outside, even shirts as trousers, which naturally confuses him utterly. Odd shoes are almost a daily occurrence. I regularly find items of under-clothing in strange places – the garden, the conservatory, the kitchen. He regularly spreads clothes out on the bed as if to identify them.
Food presents him with a whole host of dilemmas. Which implement to use is commonly a problem. A knife to eat his muesli and fruit for breakfast, a salt spoon to scoop up his dinner and a fork to cut bread. If I try to correct him, he gets cross. Food itself finds its way into the wrong bowl or even into his cup of tea. He’s fascinated by tea bags and waves them around a lot. Any food that is left within his reach is fair game and he will stand across the work-top from where I’m preparing dinner and help himself to whatever he fancies. I now have to load his plate in the kitchen to avoid him grabbing the bowl of veggies or whatever on the table and diving in as soon as I put it down. My drinks are regularly removed when my back is turned.
The bathroom, where he spends a lot of time, doing what I don’t know, clearly involves yet another set of problems. The toilet bowl has become a mystery to him, there is never enough water in it, so he fills a glass and pours the contents into the bowl but can’t figure out why the level never goes up. The lavatory brush appears in all sorts of odd places, likewise sheets of loo roll, folded carefully of course! As for the waste bin in the bathroom, well, I’ve had to remove that. When I suggest he cleans his teeth over the basin, he can’t work that out and the idea of spitting out after cleaning them doesn’t resonate, he swallows it! Very worrying. When I noticed he had a white film on his face, I discovered he’d been using toothpaste as face cream.
‘Confiscating’ things like biros – he scribbles on photos, bills and in books – has become necessary. Scissors, knives and tools often find their way into his trouser pocket despite my telling him endlessly that he could slip and do himself serious harm.
You can see how like a child he has become which entails almost constant surveillance, which he resents. As his brain unravels, or should I say becomes more and more tangled, so do his actions.
Trying to apply even the tiniest bit of logic is almost impossible. I figured if I could understand why he does things, it would be easier to adapt. Even writing about my confusion hasn’t shed as much light as I hoped it might. Nonetheless, it does help to express the weirdness that has come to be an integral part of our daily lives. And it has to come out. As we know bottling frustration is not good for our immune systems. I probably don’t release enough actually, if the eczema that has re-appeared on my torso is anything to go by. And the extreme heat has not helped that at all.
Mercifully it looks as though the days are going to become cooler and, with luck, we’ll be able to enjoy a spate of kinder weather along with the glorious colours of autumn. Enough to raise the spirits of even the most down-hearted among us.
doodahtwo.home.blog 
Hello Sue,
I don’t know what happened to my reply to your last blog ” Hard Lessons” ? I did send it.
It is often hard to understand the actions of humans who don’t have Alzheimer’s! You must be finding life with Leaf so hard, his actions sound rather like some of those our two year old grandson carries out ; very tiring and you need eyes in the back of your head.
Have you made any progress with finding someone to come and live in the gite?
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Hello Adrienne, As ever you’re right there with us. It is indeed extremely tiring and I find myself on the edge of snapping on a regular basis. It’s the craziness that is hard to rationalise, but then there is no rationale, it’s a muddle of spaghetti in his head I suppose. We soldier on but I look forward to calmer days.
No progress with the gite as yet, there are things to do that are holding me up but I hope to get it sorted before Christmas, covid allowing.
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Hi Adrienne, I wonder where your reply went!!??
I agree it can be hard to understand the actions of those who don’t have AD. In fact I’m often dumbfounded. Leaf is indeed getting like a two year-old. It must be difficult enough for a young mother, but for someone of my age being on duty 24/7 is hard.
Re. the gite, I’m a bit held up at the moment waiting for someone who’s coming to help with the clearing and furniture arranging, then I can advertise and see what happens. Although with CV19, who knows. In fact, it shouldn’t be difficult with so many losing their jobs etc. but who knows. Thanks for your comment and see you soon. xx
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Hello Sue, what can I say,,,,,,,,,,,,I have seen it all ,and more in my visits to friends and family who have reached the point of no return [if I can put it that way?] in their lives, I know how you will be feeling, the exhaustion, fear, guilt even, all those emotions borne out of love for Leaf.
It was interesting that you make the point [in our daily lives], in your blog, a point I have [and still do] make about carers, the forgotten ones who are there 24/7 the rest of their lives caring with patience, love and devotion as you are with hardly any help or recognition or financial help for respite, which is such an important tool to keep your own well being sanity!!
I have my own personal views on PLWD [as I do] and the caring aspects from a lay point of view, I no longer go with the main stream Academical rubbish I have been fed over the last few years, but I wont bang on about that other than to say I do understand what you are going through and offer you my support and friendship.
One day , my time will come, and small incidents on a daily basis remind me of that fact, but for the moment, I can deal with it,
I hope you both enjoy the Autumn as I will, the fresh brisk walks as nature falls asleep as we wait for the cold of winter then the resurgence of Spring with life beginning again [I think Vivaldi had it just about right lol], so, I wish you both well, I hope your Gods go with you and I know its easy to say, but, please dont stress too much……happy Autumn and bye for now, Paul x
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Hello Paul – it’s good to hear from you. I’ve been thinking about you and wondering how your projects are faring with the background of control that’s affecting all our lives so disastrously.
Thank you as ever for understanding so well what is happening to Leaf and I, and to so many others. Those who haven’t had to spend any appreciable amount of time with someone displaying these AD symptoms, obviously cannot be expected to fully empathise, but those who have know only too well how incredibly difficult it is to maintain a semblance of sanity. Although I didn’t mention it here, the verbal abuse is increasing and that is devastating. Friends and family are very worried that it might progress to physical abuse. I simply can’t imagine my gentle Leaf turning to that extent, but his tone of voice and the look in his eyes when he’s accusing me of God knows what – he can’t articulate it of course – is frankly frightening.
I agree with you regarding all the advice that is ‘out there’ seeming to dwell on the later stages when the poor soul is stuck in a chair and apparently not functioning. Or a new possible cure has been discovered, but only for early onset. For heaven’s sake, it’s so darned gradual most wouldn’t even know what’s coming.
It’s great for me to know you are there, albeit quite a way off.
It must be so sad and scary for you witnessing the deterioration of your friends. So many people are falling victim these days. It’s the cruelest of diseases. You’re clearly made of strong stuff and I’m sure your positive energy will be a huge help to you in the future as it clearly is now.
We are lucky to have lovely walks and I look forward to the leaves turning around our local lake – spectacular! With love and take care xx
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such a wonderful picture of an autumn scene Sue, I love it!!. I hope you can find some joy in it to uplift what is becoming an increasingly difficult burden for you. Love to you both
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Hi Rebecca – yes a truly glorious picture. There are still moments of joy and wonder despite the full-on nature of life these days. I hope your days are a bit less busy and that you’ll get time to appreciate the beauty of nature too. Thank you for sending your love.
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Oh, Sue, it sounds as if things have escalated somewhat. It must be so difficult for you to see Leaf like that and to have to cope with it all. I feel for you. Do you get any help or respite from anywhere?
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Hi Stella, it’s good to hear from you. Yes, it is very difficult and I am doing all I can to alleviate the situation. We have an auxiliaire de vie who comes twice a week – Leaf is devoted to her, and a friend who helps out when she can.
We have a little gite attached to the house which I’m kitting out to house a part-time live-in carer, if I can find one. With the dreaded DV1984 (!), nothing is straightforward but I’m hopeful of finding someone. Hope you are both well and to see you again one of these days. xx
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Describing most of my days,,,tired,,,,
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Hello Douglas, I’m so sorry. It’s utterly wretched. We have to find strength from somewhere to carry on. Good luck – Sue
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Hello Sue
Like Adrienne your life with Leaf reminds me a little of looking after my grandson who has been staying with his parents the last month . He’s only 17 months but on the go all the time toddling at great speed , looking at everything and discovering new things all day long ! Very amusing most of the time but exhausting as he needs constant attention.
I am thinking if you and hoping you can get more help soon . Your health and sanity are of the utmost importance to you and Leaf ! But I know you already know this .
Hope to see you for a dog walk next week maybe
Lots of love xx
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Hi Gail, Yes, grandparents know full well how tiring little ones can be so can relate to Leaf’s ‘babyish’ behaviour.
I went today to organise some more help and have some ideas to follow up, so will hopefully be getting somewhere useful soon. There are emergency helpers who can step into the breach if anything happens to me as well as Team Leaf, the helpers I’ve arranged from this end.
A dog walk next week would be good. I’ll drop you a mail at the weekend. Lots of love back and thank you for your support. xxx
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God, I feel for you. Call anytime. Remember there is life for you. Guilt & confusion are not happy bedfellows. Decent care for both of you is now the name of the game. Be strong. Cas xxxxxx
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Hi Cas, Thank you, I’m beginning to feel for myself! I realise I can’t carry on like this and am investigating a suitable home. Leaf agrees! When the old Leaf re-appears, albeit it briefly, he’s very realistic and still has a sense of humour, thank God. He said to me the other day ‘I suppose one day I won’t even recognise myself!’ Interesting as he mostly isn’t himself nowadays and is someone I mostly don’t recognise!
I will be strong and thanks for the offer of an ear. Actually it is pretty difficult calling as he’s always around but I hope it won’t be long before we can. We’ll talk soon. xxxx
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