Changing the points

We talk our talk, the alternate version from the "I do miss fruit" conversation. It’s like a regular detour, shunted off to a siding, waiting for the freight train to pass.
“So Maddy?”
“Hmm.”
“Are your teeth still bad?”
“No they’re alright now,” I beam a demonstration of my flashy straight gnashers in confirmation.
“Oh…..so………ow come you don’t eat fruit den?”
“I do, every day, several pieces, certainly far more than the 5 a day.”
“Do you?”
“Yes. Do you remember last night when you all had ice-cream and I had raspberries?”
“Oh yes…..so ow come nobody else eats fruit?”
“They do all of them, especially the girls, they’re both fruit bats I swear.”
“Really?”
“Yes…..that’s why I’m always buying it, why the fruit bowl is nearly always empty.”
“Really?”
“Yes.”
“Ooo eats it all den?”
“We all do, pounds and pounds, all 8 of us.”
“8? Eight of us?”
“Yes, all eight.”
“Ooo are all deez people den?”
We switch seamlessly into the ‘head count’ conversation where each person is itemized, has their name, age and marital status confirmed before we move onto pets, and whether or not they are spade, the benefits of being spade or neutered, swiftly followed by the conversation pertaining to the sexuality of the tortoise. As we reach the end of this cycle, several times a day, it becomes far easier, although sometimes I feel ever so slightly dazed at just how many of these conversations we can slot together in one sitting.
“Well……..dats alright den.”
“Yes.” We both pause and take a deep breath, dry mouthed. She pats the counter for a few moments, revving up for the next exchange. She blinks at me a few times, something flips over, track back and we’re on the mainline again, “you know………?”
“Hmm?”
“I tink maybe everything is going to be okay.” I smile in reply as I’m sure she genuinely means it. It’s just a chink, like a little gear change, a switchover.
“So den?”
“Hmm?”
“I tink maybe you don’t love me any more?”
“Pardon?”
“Yes……I tink you forget to put on the BBC for me. Ow can I keep up with world events if you cut me off,” she scoffs, nudges my arm and giggles.

Changing the points

http://sandwichedgenes.blogspot.com/2009/08/changing-points.html

And other old sayings

He’s barely over the threshold after work when I detail him off to remind his mother to take her pill whilst I finish off supper preparations. Even with the extractor fan working full tilt above my head I can still hear every word they say together in her bedroom with the windows open.
“I need to go to the bank to get some money. I aven’t been for a week.”
“You don’t need any money. Anyway, you’ve not been to the bank out here.”
“Ow long I been ere den.”
“2 months.”
“2 weeks……well I suppose…..”
“Months! Two months not two weeks.”
“Two months! Gawd I can’t ave been ere dat long. I need to go home. When I go home den?”
“September. Another month.”
“Gawd! Another month you say?”
“Yes.”
“It’s like……”
“What?”
“Like fish!”
“You don’t like fish. You hate fish.”
“I know……but it’s like fish.”
“What’s like fish?”
“A guest is like three day old fish.”
“What?”
“A guest.”
“What guest?”
“A guest! Me! You silly goose. A guest is like three day old fish!”
“Huh!”
“Smells bad! I’ve bin ere too long.”
“No you’ve not. Don’t be daft. This is your home.”
“Gawd it’s not at all. I ave my own ome.”

He re-appears in the kitchen, eye gouging. I feel a tad guilty. There are so many repeats that I assume he’s heard them all before. I feel a bit like a thief. She’s his mother not mine. It’s not just the repeats but the treasures of childhood, Mussolini, the war, Italy, her youth. Admittedly they’re repeats too, but I just assumed that we were singing from the same hymnal.

“I take it you’ve not heard that one before then?”
“The fish? Nope. Never heard that one before.”
“Funnily enough…….”
“O.k. Point taken. How often?”
“Doesn’t matter. What does matter is that we use the same tactic.”
“Enlighten me?”
“She’s not a guest……she’s family.”
“Ugh…..that’s a bit gushy for you.”
“Only if you have to say it more than once and be sincere, then it grates a bit.”
“Pass the barf bag.”
“Believe me, I have every reason to regret the things that first come out of my mouth and are then cast in stone to be repeated, I’ve had lots of practice.”

And other old sayings

http://sandwichedgenes.blogspot.com/2009/08/and-other-old-sayings.html

Sharing a repeat

The first time I was taken aback, as well I should be, but this is still one of my preferred repeats, even though I’m familiar with the punch line. One of our many daily exchanges. I find it quite endearing that she needs to check on each and every household member, their whereabouts, their welfare, from the highest to the lowliest. Our current exchange is much briefer than the original.

It goes as follows:-

“So den Maddy?”
“Hmm?”
“Wot about dis one den?”
“Which one?”
“Ow is she today?”
“Who?”
“Dah…..wot it called again…..?”
“Tortoise.”
“Ah yes. Ow is she today do you tink?”
“Very well.”
“Where is she?”
“In the tank, in the family room.”
“Not outside today den?”
“No we’ll put him out in the garden later to stretch his legs.”
“Dat’s nice. Wot iz her name again?”
“Fred.”
“Fred?”
“Yes.”
“Dat’s a strange name for a girl isn’t it?”
“He’s a boy.”
“Is he! Ow you know dat den?”
“Well…..we don’t really, not yet, we have to wait for him to get a bit bigger and then we’ll be able to tell.”
“You will! Ow?”
“If he’s a boy then the bottom of his shell will be concave, for mounting. If he’s a girl then the bottom of his shell will be convex.”
“Hmm….I see. It’ll be bad if she’s a girl……Fred.”
“Frederick for a boy. Frederica for a girl.”
“Oh…..I see. Fred…..always feminine of course.”
“Feminine? Like I said, we don’t really know yet.”
“No…..always feminine.”
“Well……like I said……we have to wait and see.”
“Feminine. Always. Tartaruga!” she announces with a flourish.
“Pardon?”
“La tartaruga, in Italian, always feminine.”

Note to self – in my next life, now that I have the benefit of hindsight, I shall study Italian instead of failing French, German and Latin, mixed in with occupational and speech therapy of course.

Sharing a repeat

http://sandwichedgenes.blogspot.com/2009/08/sharing-repeat.html

The new campaign

The "children" return to school. I still worry about notes because they seem passive aggressive. Do I wake her to tell her I’m going out or do I risk her waking and finding herself alone and confused. Although my daughter is home, she doesn’t live in the kitchen as I do.

First off I would say that I’m not quite sure what I shall be doing but be sure that I will be doing something.

Nonna has always had two alternate versions:-
“What do you mean, I always sleep perfectly!” or
“No, I always sleep badly.”
It’s familiar territory, or at least it was.

Now it is different.

Recently we have experienced a new variation on a theme. She remains in bed for the majority of the day, dozing and reading, and dozing and reading. This seems an entirely sensible option when the weather is hot, the European Siesta option. However, lately the weather has not been true to form. Warm? Yes. Sweltering? No. I cannot be certain until I notice something else.

I knock, wait and enter with a cup of coffee. Not an early wake up call but a 9 o’clock call to action which I hope is a reasonable compromise for someone of advancing years. On my previous similar entries I had noticed that the rubber sheet had been discarded, unfortunate but perfectly reasonable. If it had been me who had be presented with a rubber sheet by my daughter in law I doubt if I would have been so tactful with the implied insult.

Since it is warm it’s also sensible just to use the duvet cover, alone and empty as a semi blanket and reject the puffy duvet’s heat. What is less understandable is the use of the fitted sheet as a top sheet where your body lies next to the bare mattress. When I see her smile back at me in greeting whilst clutching the elastic of the sheet I am at a loss to know what to say. Instead we run through our first meet and greet session before I leave on automatic pilot.

Back in the kitchen I am left with a sinking feeling, a very familiar sinking feeling. I stop worrying about why the tumble drier smells of burnt plastic. I talk to my daughter about it, another adult. She in turn tells me that she noticed the disarray on a previous occasion, meant to mention it to me. She didn’t mention it because at the time I was dealing with other matters, children’s matters, in the thick of it. She didn’t want to tip the balance, so she held it, held if for later, for now, for this moment now that the children are not here. A different moment, a different matter.

It is a matter of opposites, stark. It’s the emotion a parent experiences when their child first smiles, when it isn’t a burp or takes their first step, when it isn’t a stumble. The gasp of breathtaking delight is an anxious one, celebrating the first, anxious for the repeat. The parent of a child with special needs, who may have waited a lot longer, also knows they may have to wait much longer for a repeat, that the repeat may not come, so they hold back their expectations and practice patience, because given time and encouragement, it may just be that whatever this next skill might be, it might just, if they’re very lucky, become part of their general repertoire. It is precisely because we have these common experiences that this should be easy, plain sailing. Except. Except here, it is the exact opposite. Debatably a first step, one that I do not want repeated, or it if is repeated, to be repeated a very long time from now, and please delay inclusion in the general repertoire. The difference is the element of hope. It is hope that sustains us, the brighter future, possibly, always the possibilities, although now even that begins to wither. And that is exactly how it feels, in reverse, just so you know, and I know that you surely know.

So where does that leave us then? Whilst I’m not entirely certain, I do know that it somewhere between there and here. If we can get her up, fed, showered and dressed in a timely manner, then we’re probably not doing too badly.

The new campaign

http://sandwichedgenes.blogspot.com/2009/08/new-campaign.html

Lets make believe

I keep up a cracking pace all morning to get as much done as possible before the heat kicks in. The children play, noisy but happy as they have far more capabilities in the morning than later in the day. All the while Nonna sits on the sofa in the sitting room which functions like the main thoroughfare of the house. She holds a single torn sheet from a Garfield comic book. By mid morning at snack time, I’ve done just enough to get by, as good enough just has to do these days. I nip back into the sitting room just to check but she’s still there, static. I hover for a moment, indecisive as usual, bathed in early sweat. She beams and I surrender, “so Maddy!”
“Would you like a coffee and a snack?”
“No I’m quite appy ere……watching.”
“I thought you were reading?”
“No……..I just watch……it’s like watching dah tennis.”
“What is?”
“You! Back and forth and back and forth…….always so busy I tink.”
I give up and plop onto the sofa next to her. “I used to be so busy too…..” Her shaky hands finger the page the way they normally manipulate a hanky, constant movement. Hopefully calming, repetitive, familiar. I’m always fine until I stop. Because I’ve stopped I can’t help but yawn. She blinks at me, offended but up on her feet, unsteady, as she makes her way towards the kitchen. I skip after her in my size tens.

In the kitchen she is assaulted by the smell of fish, something she absolutely loathes, and mistakenly left by the coffee machine to cool. “Wot is dat terrible smell?”
“Fish pie. It’s for her birthday. It’s her favourite.”
“Disgusting. I’ll just have bread.”
“It’s o.k. I made you a chicken pot pie. This little one here.”
“Why so small?”
“It’s just for you, for one. Everyone else will have the fish pie.”
“Not me. Just bread. Where is dah bread?” She seems close to tears but I’m not sure if it’s fear or fury or frustration. I suspect it’s also mutual. I remember by “bible” readings but I am truly out of my depth.
“It’s just here, by the coffee maker, but it’s not supper time yet.”
“Only dat little bit……you will make some more?”
“Er….sure.”
“You make it now?”
“In a bit.” She rests her arms on the counter and shakes her head slowly, despair?
“I don know………I tink maybe you want me to starve!”
Dear Lord! I blink and swallow hard, close to the edge without a clue. The hub bub continues all around whilst we exist in this one tiny little bubble, stunned. Then she shoves me, gently as she breaks into a smile. “I tease you! You silly goose!” she beams as she gathers loose flesh around her midriff. “I tink I got a long way to go yet before I starve.” She’s surely saved me this time, but it’s sobering. “Why dah long face? You worry too much you do.” She walks away with a coffee, pulls a biscuit out of her pocket and calls over her shoulder “I know what you do……kill me off with sugar temptations!” chuckles the diabetic.

Lets make believe

http://sandwichedgenes.blogspot.com/2009/08/lets-make-believe.html

Circling around

It is a rare occasion indeed for me to put my foot down, but sometimes I do.

A very long time ago when Nonna was a bit more with it, we enduring a very difficult period in our family life. You could call it a bit of a clash of cultures. You see for a long while, Nonna has been a diabetic, a fact that she took in her customary stride. However, when her son was also diagnosed as diabetic, a new habit occurred. Instead of checking her blood sugars within the privacy of her own room or bathroom, she and her son tested their blood together, in harmony, at the dining room table to compare notes as it were. It may sound unduly grand, however, I should point out that the dining room table is the only table in the house, central, in an open plan design.

The arrival of the testing kit was my visual cue to scurry the children away to another room. Over protective? Maybe. But at that time both the boys had a morbid fear of blood, associations with death and anything that could be remotely categorized as a dangerous weapon, which included nail clippers.

Many might view this as a perfect opportunity to up the anti on the desensitization campaign. A fair criticism but we were very, very far away from that stage of desensitization. It would have been the equivalent of marching on hot coals before you’ve mastered looking at them wearing sunglasses behind a protective barrier with your feet in a bathful of ice-cubes. Twice a day this ritual took place. Twice a day I would remove my children from view, as ever, the line of least resistance. All was well and goodish.

Good enough, until one day Nonna decided that the children should witness the ritual. Because I know her so well, I am confident that whatever her reasons might have been, and I’m sure there were many, her intentions were well meant. It was a spontaneous moment, combustible. The bedlam that ensued was catastrophic from any vantage point you could choose.

That was when I put my foot down. No more. To be fair, having witnessed the fall out first hand, Nonna was sanguine after the event. I had not been exaggerating. The fall out was grossly unfair to Nonna, as thereafter they refused point blank to go anywhere near her room which housed the instruments of torture.

Subsequently we exchanged that ritual for another. Twice a day Nonna would arrive in the kitchen together with her diary to slump against the kitchen counter, cross.
“Wot about dis ting den?”
“Ooo lets have a look. Hmm you readings are a bit high.”
“Why it is high you tink?”
“Probably the chocolate cake last night.”
“Did I ave chocolate cake?”
“Indeed you did.”
“Oh well ……forget about it den.”

Twice a day. Morning and evening.

But of course that was a very long time ago. I remember that time long ago when my son happens to saunter into the kitchen, wordless but with a trail of blood coursing from this finger, dripping down his shirt, legs and feet. He is the child that bounces of cement walls without so much as a whimper. He is expressionless as he looks around for something. A word that he can’t retrieve for the moment. I watch him circling and searching quietly in the kitchen. I know what he’s looking for and I’m ready to prompt but I wait, no interruptions. I watch until a little flinch sparks him off, off to the bathroom and the band aid. Perfect! I do not praise him because he is generally allergic to praise. He gives me a sneaky beam, because he knows, and I know that he knows. I propel him back to the bathroom so that I can clean him up, compliant. Because he did such a great job I don’t bother with coaxing him to clean up the blood trail on the floor. The 'clean up after yourself' campaign can wait.

As I clean up the blood on the floor to remove all trace elements that might spark off his little brother, a thought occurs to me as I look at my very clean floorboards, vacant. I remember that the diary ritual is absent. I recall reading in my new "bible" that quite often a change of habit in an older person may mask an underlying difficulty. An unwillingness to drive may hide an inability to drive safely. It’s something that I sort of already knew, or rather just a variation on a familiar theme.

I tip toe over to Nonna’s room where she dozes in the chair next to a pile of unread books with a Garfield comic open on her chest. Privacy versus knowledge? I dither but not for very long as her eyes open to see me and then recognize me, “ello dere. It is pill time?”
“No…….I was just wondering?”
“Yes?”
“Your diary. Do you still keep a record of your readings?”
“No……I don’t bother wiv dat any more.” She reaches over to retrieve it from the pile, opens it and riffles the blank pages.
I wonder if an unwillingness to write masks an inability or difficulty in writing? Maybe just frustration at being unable to find any one of half a dozen pairs of reading glasses? Or pencils? Too hot? Too tired? Bad day? I double check.
“How’s the crossword going?”
“I don’t bother wiv dat old ting anymore,” she adds wearily as she pats the pile, the way she pats everything. I pull out the crossword and examine it. Two across, three down, one blank space. I beam. She beams, “only dat last one to go den.”

Circling around

http://sandwichedgenes.blogspot.com/2009/08/circling-around.html

Some things are smaller than you think

The irritations in my life are "many" and "various" and unfortunately growing, daily. I find it hard to get a grip on these petty minded emotions. I find myself descending into devious ploys.

One little campaign is to confuse the post office. I put my parcels outside the front door for collection. Several minutes or hours later, Nonna will announce the arrival of a package and kindly parks it on the dining room table for me.

Another round robin is the dance we play with the coffee maker. If I leave the kitchen for any period of time, on return I shall find her at the machine, bereft because it is empty, because yes, she is one of the few people on the planet who is not affected by caffeine.

I play umpire between her and my daughter, one determined to save the environment, the other determined to quadruple the water bill single handedly. Quite frankly I have so much help about the place I hardly know what to do with myself anymore.

But I digress.

Presently I am occupied in finding different places to hide my knitting. In a previous era I had to hide it from my son in cat mode, but nower days I hide it from Nonna. She’ll sit there quietly minding her own business, which immediately arouses my suspicion and there she’ll be, watching the BBC news and knitting. Knitting my knitting.

To those who do not knit, this would seem of no import. To those of us who do knit, we know that every knitter’s technique and touch differs. Ironically this is called tension; how tightly or loosely you knit. No two are alike. It’s the current two step of my life. Nonna knits a few rows. Later, I undo a few rows and re-knit them. I have tried other devious ploys as well, such as providing a substitute, her very own set, but somehow or other we end up in the original position. I cannot understand why her knitting is always lost and yet mine, whilst hidden, is always available?

It is whilst I busy devising other devious ploys that a spot of recall worms itself into my memory bank. A time from many years ago. Back then, as a divorced single parent, I used any many of means to keep myself and my daughter afloat, financially. Although I had a full time job, I picked up little jobs on the side, here and there, for the little extras in life such as shoe leather and food. One of those little jobs was knitting. Not the most lucrative of employments I’ll grant you but not to be sniffed at either.

So it was that I received a phone call and then a visit from a couple of women, a mother and daughter. As it turned out, neither of them could knit. They brought to me a half knitted sweater and a complicated pattern. It needed completion. The original knitter was their daughter and sister respectively. The recently deceased woman had been knitting it for herself, for her own use in her very ordinary little life when her very ordinary little life came to an unexpectedly abrupt end. I still have their faces embossed in my mind. Racked with grief they handed it over, an article of such value, in trust, as they blinked away tears and spittle spattered mumblings. I covered with ramblings of my own, tutelage in tension, explanations of excuses and a tissue of trivia before they left.

Once they had left, I was left with a dilemma. I knitted a few rows, changed the needles, changed back, fiddled back and forth in an attempt to match. It was so tempting to unravel the whole thing and start from the beginning again. They’d never know but I would know. My DNA cells might cover hers but I couldn’t bear to erase those personal purls. I gave up. I completed the sweater. To the unskilled eye it would be perfect. To those who know or knew, the tidemark was all too obvious, but all the better for it.

So for the present I’ll leave it be, as there are so many other campaigns to be tackled. Maybe I should start with something more manageable. Similar yet different. Some skullduggery to find the perfect hiding place for my swimsuit. I kid you not! It hangs off me like a dish rag but it fits her just like a glove. Ooo the gall of the woman!

Some things are smaller than you think

http://sandwichedgenes.blogspot.com/2009/08/some-things-are-smaller-than-you-think.html

Windfall – the blind leading the deaf or vice versa

I find myself unexpectedly child free for the first time in months. My daughter and Mr.B remove them to a fun, family friendly and completely enclosed location. As I wave good bye I am suddenly overwhelmed with a myriad of choices. I could do anything I want but what?

I watch the car turn the corner and have a clearer view of my neglected garden. Of course. The garden centre. I dash back inside for my list, buried under heaps of heaps when Nonna appears. We bimble through our ‘good morning’ routine for the seventh time but she is in an exceptionally good humour, as am I.
“Wot you do den you lucky woman?” I pause, because I am inherently selfish. Precious moments of alone time should not be wasted. At the same time I note that she wears the same set of clothes that she has been wearing for three days running. I also know that she always changes into fresh clothes if we leave the house. I do not wish to delay for 30 minutes whilst she makes herself presentable but of course there are so many different things that I do not want. I am so good at pretending to be nice but wicked thoughts are always there. Fortunately I have my other mother’s Roman Catholic sticks to beat myself with: if you can’t do it with good grace then don’t do it at all.
“Tell you what! Do you fancy a trip to the garden centre?”
“Ooo yes……no……..yes…….just a minute……let me change.” She trots off with haste as I search around for a book to read. How much can you read in 30 minutes? Not very many if someone’s nicked your book. I refuse to pout and cook instead. Before too long she reappears on full beam, “right den!” and off we plod.

At the garden centre we are at peace and at one, a joint therapy session. Her delight is a delight and I am thoroughly delighted myself. We stroll through Hibiscus, Bougainvillea, Camellias and Salvias because we enjoy the same language and have perfect recall. She marvels at the textures and scents, the abundance known as Home Depot. “Wot a size dey all are!”
“Yup, everything is bigger and better in America.”
“Look at dat ting. It is a giant I tink.” She pats the leaves as she moves her body into different viewing positions.

A youthful chap approaches Nonna to ask her something, something that she does not understand or maybe cannot hear. She flaps an arm in my direction so I whiz over to intervene or help or translate. “I don know wot ee sayz,” she stage whispers.
“Hello, can I help?”
“Dya wanna caught?” he says, nodding towards the flower pots.
“Wot ee say?”
“Er…..caught…..what’s a caught?” I beam.
“You know eee said caught. Wot it is a caught?”
“I’m not sure. What is a caught?”
“Ya know….for the flowers…….all the flowers in your cart.”
“Hmm I’m not sure what a caught is, sorry.”
“Did eee say caught or court or cart?”
“I’m not sure. I’m sorry, I don’t think I know that word.”
“Just caught, ya know, for the flowers.”
“Ow come you don know dis word? You are an American now. It is an American word I tink? Maybe ee say chord……or cord…….or cored…..wot you tink?”
“I have no idea.” It’s worse than a cross word puzzle. “Sorry I wonder if you could explain caught?”
I try lip reading but it doesn’t help one bit.
“Cawed…….I don know wot ee say. Gawd it’s impossible.” She taps her ear in the hope of sparkling life into her hearing aid, although that’s not really the issue.
“Caught!” he yells, but ever so politely. “Wait up.” He turns his back and walks away to fetch something. He returns with a plastic tray, “here……a caught.”
“Ooo is that what it’s called. Thank you. I didn’t know that.”
“Oh you stupid girl,” she giggles, and I must say that I do indeed feel very stupid. It’s odd to think that I now have a whole new source of a thousand different ways to be stupid.
“Yeah…….I just thought y’know…….which size……..but most of em are quart.”
“Quart! Oh, quart!”
“Wot ee say?”
“Quart……with a ‘q’………quart sized flower pots.”
“Dey measure dere plants by liquid volume? Not centimeters?”
“Yes……I forgot.” I thank the man who leaves, good natured but mystified by foreigners. Nonna pats the quart tray, “you’d better be careful I tink.”
“Careful? About what?”
“Dat you are not forgetting too much or you’ll be old before your time.”
“And what time would that be do you suppose?”
“Time for a coffee I tink.”

Windfall – the blind leading the deaf or vice versa

http://sandwichedgenes.blogspot.com/2009/08/windfall-blind-leading-deaf-or-vice.html

Familiar Territory

I reluctantly print of the “log” or documentation guide from the "Alzheimer’s Association." I read it thoroughly and make notes in a separate notebook so that I won’t bias her own son’s assessment. Later, much later in a quiet moment I take a seat beside him when we are alone. Quite alone. I explain how I think we need a base line, a starting point from which to proceed. He pulls off his glasses to gouge his eye balls with a deep and wearisome sigh. It feels like we've been here before in the space-time "continuum."

Familiar Territory

http://sandwichedgenes.blogspot.com/2009/08/familiar-territory.html

Notable quotes on Dementia

In my copy of "The 36-Hour Day" I read about ‘problems with independent living’ and how different families cope. One recurring issue is an older person’s unwillingness to surrender their financial responsibilities when they become overwhelmed. The book quotes many examples. After a series of examples that make perfect sense the last one is described by the authors as ‘extreme.’ This is the example:-

‘Mrs. H…. is fiercely independent about money, so Mr. H gave her a purse with some change in it. He put her name and address in it in case she lost her purse. She insisted on paying her hairdresser by check long after she could not responsibly manage a checkbook. So Mr. H gave her some checks stamped VOID by the bank. Each week she gives one to the hairdresser. Mr. Hutchinson privately arranged with the hairdresser that these would be accepted and that he would pay the bills.’

Well done Mr. H! Now to me, from my perspective, this doesn’t seem in the least bit extreme. It’s a great idea, an accommodation, but it’s not in the least bit extreme. I take great comfort from this tale because it tells me that I am more than well enough equipped to deal with whatever lies ahead of us. I am so used to jumping through hoops, over hoops and around hoops.

Sadly, this also means that I am used to failure. The first attempt doesn’t work, so we try something else and so on, time and again until we find a good fit. I have an example of my own.

You see last year we had this "problem," what we American’s call an ‘issue.’ The issue was Nonna’s independence. I understood how frustrating it was for her to be carless, especially in America. Nonna has always been a walker so instead of being cooped up in the house she naturally decided to take a stroll. Quite often it is difficult to remember details when you’re on holiday such as your hotel room number or perhaps the name of the hotel when they all look so alike, so it was understandable that Nonna had difficulty with this too.

It was a worrisome time.

Other families might be able to allow a grandchild to accompany their Nonna but that wasn’t an option for us. Although our house has more locks and chains than the average home this did not deter Nonna. I’m sure there are many valid reasons for restricting someone’s freedom for their own safety but I was not happy with the idea of imposing such limits on my mother in law. I was not in a position to shadow her movements once she was outside the house as I had other responsibilities, not necessarily more important but certainly more immediate.

The crunch time came when a kindly neighbour returned a thoroughly disorientated Nonna to our front door, as she had found herself completely lost only a few blocks away from home.

We had already printed off the equivalent of a business card with appropriate details for her hand bag. Often she left without her hand bag. Then we tried printing off a six block map of the immediate vicinity, in extra large print, three copies, laminated, but it suffered from the same inherent problem, a map is of no use if it resides in your bedroom when you most need it.

Hence this year, this summer, these issues have been on my mind, worries. What to do? How to help? How to keep her safe? How to engineer freedom and independence? I’d guess that you too are racking your brain to come up with ideas because we all want what is best for Nonna? I feel people’s sympathy and good wishes, so I know that you’ll be as sad as me to know that this year it is no longer a problem, a non-issue. Nonna no longer ventures out of the confines of the garden, so maybe not a non-issue but a different issue entirely.

Notable quotes on Dementia

http://sandwichedgenes.blogspot.com/2009/08/notable-quotes-on-dementia.html

The 36-hour day*

It’s my new "bible" but I’m reading it very slowly. Because I am reading it very slowly it is often skulling about the kitchen full of scribbles, notes and underlined sections. I don’t exactly hide it but even if I did I know that Nonna would find it. She likes to read whatever I read, often whilst I’m actually reading it. Put anything down for a moment and she’s all over it like a rash. Each time she comes across it, several times a day, we have the same conversation. It starts off with alarm and annoyance, the tone is un-mistakable:-
“Why you read dat den? Dat’s an orrible book.”
“Because of my dad. I’m hoping to learn some more so that I can help mum out a bit.”
“Your dad?”
“Yes.”
“Your father? Ee az dementia?”
“Yes and my mum’s looking after him all by herself.”
“Ooo dat is sad. I didn’t know dat. Dat’s very sad.” The sadness shows in her face. It’s genuine. Genuinely sad.

*"The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life"
by Nancy L. Mace, M.A., Peter V. Rabins, M.D.,M.P.H.

Big and grateful thank you's to everyone's generous thoughts and comments.

The 36-hour day*

http://sandwichedgenes.blogspot.com/2009/08/36-hour-day.html

Happy days of yore

I play around with the TIVO after Nonna expresses delight at an old Clark Cable movie, name unknown. Ealing Theatre and St. Trininnas comes to mind as well as a few Miss Marple’s with Margaret Rutherford, the original actress in the role. It turns out to be quite a pleasant romp down memory lane for me as I have a soft spot for old Black and White films. Eventually I am all set up with the children in bed, asleep. I reach for the microwave pop corn and plump the cushions into a little nest for Nonna as we take a seat in the circle of our very own family room.

“Are you ready?”
“Ready for wot?”
“We thought you might like to watch a movie…….a film?”
“Ooo yes. I like dat. Wot you got den?”
The MGM Lion roars but there are no fearful hiding children to spoil the view.
“Ooo it’s an old one den?”
“Yes. You’re going to love it!”
“Ooo good…….wot…..Third Man! We are going to watch the Third Man?”
“Yes. A real treasure.”
“Wot?”
“It’s his favourite. Is it your favourite too?”
“Gawd no! I’m off then.”
“Off where? Don’t you want to watch with us?”
“No tank you. Why you want to watch doz old tings? I’m going to watch Wall E in my own room. Don’t worry……dat one doesn’t need subtitles either.”
“!”

Happy days of yore

http://sandwichedgenes.blogspot.com/2009/08/happy-days-of-yore.html

Bare your soul

Whilst I’m in the mood, I have another confession but this time I have a much better excuse, and believe me when I tell you that I am in great need of excuses, although I’m trying hard to pull myself out of the lake of guilt.

Just stop wallowing woman!

You see the other thing I missed was that lack of bath room use. My mother shares this experience caring for my father. It’s more difficult for her. Far more difficult with a spouse. This is especially so because of the type of man she married. She basically married an Edwardian, although I don’t think she fully appreciated the consequences at the time. Soft spoken, dignified and polite, they both had their traditional roles etched on the marriage certificate. All that has now changed. Nobody tossed her the reins as such but there she is, in charge of the horses.

Bathing became a big issue, an issue that I unfortunately had to mention. It was one of many bug bears. She knew it was an issue but only one of many. A different order of magnitude. So I tried my best to be gentle but my mother is oh so very different from me. A gentle prod was more than enough to beget action. She told me on the phone the following week. She was remarkably cheerful, far more cheerful than I’d heard for a long time. “I did it!” she beamed. “Did what?” I asked. “I phoned social services and got the ball rolling. Sometime next week a nurse will call to give him a bath. I’m done with it. Problem solved.” And solved it duly was but my predicament is far more delicate if not precarious. Nonna has been with us almost five weeks. It is the height of summer and yet not so much as a trickle of water or a smear of soap has been in contact.

I do have an explanation. Let me explain for us both, as they’re inter-weaved. It has always been Nonna habit to swim, daily. For some while last year this was difficult to negotiate since the boys couldn’t really swim, although they believed that they really could swim. We fell into a habit. I would open the pool, bring back the cover very quietly, half an hour in advance so that Nonna could enjoy thirty minutes of exclusive alone time. After that, she would sit on the side of the pool better able to watch her grandchildren, one natural seal, two flailing whales and me trying to keep everyone afloat. It was the cause of much amusement, to her at least. During the kerfuffle she would amble away to have a shower before the deluge of children ousted her.

This year, things are different. They are different but I didn’t notice particularly at first because other events obscured the true scene. The scene was basically green, a pool full of abundant, blooming algae. Technically it was safe to swim but swimming in pea soup is not a very attractive option. So, no swim equated to no shower, not daily, nor weekly, not ever. Once again I completely failed to connect the dots because it would appear that I am far more of a creature of habit that I should generally care to admit.

So there you have it, or rather I have it, or rather, she doesn’t have it, but have it she must. It’s just the ‘how to’ bit that I’m searching for but I have a tentative plan or two. It’s the how to approach with diplomacy that eludes me. I can think of few things more galling than to suffer such a personal attack from a daughter in law.

Since the pool is recovering, slowly, I could just wait a few more days, but that smacks too much of avoidance on my part. One tentative plan is to prompt, something like, ‘can I turn the shower on for you?’ The other tentative plan is to suggest that I do her hair again. If she’s going to wash her hair she might as well wash it in the shower rather than the sink. Lastly, if all else fails I shall use my trump card, the grandmother one. I shall exploit my son’s aversion to showers and ask if Nonna will don her swimsuit and accompany him into the shower to supervise. I am reluctant to use this one as I fear for Nonna’s safety in such slippy conditions but at least she won’t need her hearing aid to protect her from his agonizing screams. Needless to say, I still wear my learner plates and would welcome advice from all quarters. I’m tempted to trust my instincts but I’m not overly confident in this [new] department. Mistakes are inevitable but I’d prefer them not to be big ones nor permanent, as I suspect we all have a long road ahead of us.

Bare your soul

http://sandwichedgenes.blogspot.com/2009/08/bare-your-soul.html

You take the high road and I’ll take the low road

To be honest, my knowledge of "deafness" and "hearing loss" is both minimal and vicarious. In an ideal world I would research the subject in detail but I am short on time, so I make do with an emotional yet entertaining version, 'Deaf Sentence,' by David Lodge. I learn about pitch or more accurately, 'frequency,' which proves startlingly helpful.

We gather at the table in the garden for dinner under the pergola. My youngest son squalks in protest. He is very, very loud, perched on his hunkers in a carver chair for containment. Nonna sits two spaces down in the semi rocker chair. As she rocks she admires the Honeysuckle above, abuzz with bees, huge, black workers. She is deep in contemplation as she tears small puffs of warm bread. I attempt to drag her back into the conversation, or what passes for conversation around here. I already knew that many voices all talking at once, is especially difficult for the hard of hearing. It’s another added incentive to move the campaign forward, the campaign, for us all to take turns. Until recently this has not been a priority. The priority was to extract as many words from each child as possible, but times change.

There are lots of ways to describe it. One way to describe it is that the brain has little hot spots, near the surface for easier access but they are also fragile and semi-transparent. These spots are the ones that are used most frequently, but because they’re so hazy the brain can’t figure out whether they’ve already been used that day. Hence the repeats as they float around, bumping into consciousness. It’s a bit like at the end of the day when partners meet up with a whole list of important matters to cover. We ask the other one, just to make sure, “did I tell you already about……?” It’s because we’re so busy, it’s because we’re not certain, it’s because it’s just hovering, the reminder. But that’s just the scientific version. The reality is far more obvious. It’s just like when I nip to the supermarket to pick up a prescription together with a short list of necessities. I don’t write ‘prescription’ on the list, because that’s the main purpose of the trip. When I return home, I have everything on the list, but not the prescription, too busy, too harassed, too pressured, too scrambled.

So we live with repeats.

One of the repeats, one of the many, is the absence of Hummingbirds. I’ve added to the list. It’s one of my many pre-emptive strikes to stave off the repeats. I wait until I spot one. I don’t have to wait long.
“Look!” I tap her on the forearm and point, “look! A Hummingbird!”
“Ooo yes. Look at dat. Such a pretty little ting. Dat’s dah first one I see dis year. Such a shame you ave no Hummingbirds dis year.” We beam at each other, each with our own different sadnesses, bitter sweet. She rocks and returns her gaze to the foliage on high.
“Maddy?”
“Hmm?”
“Why you ave so many bees?”
“Well the top side, the other side of the pergola is full of blooming Honeysuckle.”
“Hmmm but why they are working now? In dah evening?”
“They’ll keep at it whilst it’s light.”
“Dey are so loud aren’t dey?”
“Yes indeedy.”
“Shame I ave not eard dah parrots dis year. Did dey get rid of dem?”
“No they’re still there, four doors down. They still put them out in their garden in the evening, on their perch, all three of them.”
“Dats funny. I wonder why I din ear dem no more?”
“Hmm……maybe we should walk up there later…..take a peek?”
“No dats alright……no need really……..we ave im don’t we!” she beams as she flaps a hand at her grandson, still squalking in protest as he submits to the last spoonful of veggies.

You take the high road and I’ll take the low road

http://sandwichedgenes.blogspot.com/2009/08/you-take-high-road-and-ill-take-low.html

Armed but hopefully not too dangerous

After far too much “thought,” I reach a conclusion. It is the sort of conclusion that my Dad would call ‘the bleeding obvious,’ now that he also has Alzheimer's, now that he has mis-filed his diplomacy corps. Alzheimer's and Dementia come in many different forms. I can liken it to a spectrum, which is “familiar” territory. Also, you don’t just wake up one day and find that the mind is lost. It’s much more gradual, spiky with dips. These two facts, although stark, give me just the toe hold I need.

I leap into action.

I delegate the “tough job” to my “daughter” and her partner Mr.B. They are volunteered to take the "children" and Thatcher the dog, to the park for at least an hour whilst I tackle Nonna. I tackle Nonna in what I hope will be the road of least resistance, hegemonic.

I set her up in the family room, the room furthest from her own bedroom, with the television that works, coffee, snacks, her glasses, handkerchief and make excuses. After making excuses at 50 decibels I excuse myself. Myself then litters the pathway from the family room to Nonna’s room with a series of obstacles, the kind of obstacles that will make noise and warn me of her impending approach. I am dubious that this, my new ‘self,’ demonstrates deviousness. Although I am often devious, I am usually devious with my children, not adults.

I creep into her room, draw the blinds and take in the full picture. The full picture is much worse than my initial fears. I unpack her suitcase and hang three quarters of her clothes in the closet on the new hangers that she has apparently ignored or possibly missed. I remove all other clothing from wherever I discover it, change the bed linen, clean every nook and cranny, vacuum and remove as much superfluous furniture as possible to aid ease of movement. I am just about finished when I hear a woof as the troops announce their return. I pick up all my props and leg it back into the family room to adopt an innocent air in front of Nonna who is enjoying a deep and well earned sleep.

We continue our day as usual, or as usual as is possible under our newly minted version but I wait. I fear that she will be angry at the invasion. I worry that she might be upset. I wonder if it will cause even further confusion. I wait for the shoe to drop or possibly the penny. I have to wait a very long time until my husband comes home. I explain our doings to him in unnecessarily hushed tones before he ventures off to the lioness’s den. I hover, within ear-wigging distance.
“Hello mum! Did you have a good day?”
“Alright….I suppose?”
“Are you ready for some dinner?”
“Wot?”
“I said, are you ready for some dinner?”
“No……I said wot?”
“What about what?”
“Dis ting?”
“What thing?”
“This……..room…….wot as appened ere?”
“I’m not sure………but it all looks very neat and tidy.”
“I know……..but ow it is all neat and tidy?”
“Hmm good question.”
“I tink maybe a fairy az come and tidy it all up for me, no?”
“!”
I can't see them but I feel the flinch, hear the silence, smell the breathing of hot air.
“Don look like dat……I know ow it is done…..it woz Maddy…….I am teasing you! You silly goose!”

Armed but hopefully not too dangerous

http://sandwichedgenes.blogspot.com/2009/08/armed-but-hopefully-not-too-dangerous.html

Earthquake country. What to do?

I have an internal debate as to whether to broach the subject of his mother’s declining health?

On the one hand, she is his mother.

On the other hand, she is his mother.

It’s my birthday so I am older, we both are, and he has noticed that we are middle aged. It is a sad day for him. He is sad with frustration because Nonna’s new television doesn’t work, nor the TIVO, nor the fire alarm, nor any number of household items in disrepair. He worries greatly about these things in part because they are all fixable but other things are not. It is easier to worry about the unfixed things that are fixable. I would be inclined to say ‘denial’ but I’m not a very good American. Feeble Americans would say grief stricken. It’s not as if he doesn’t know. I know he knows. I heard him just yesterday in controlled yell mode, “where is your hearing aid?” But of course a hearing aid doesn’t mend hearing, nor does it restore memory, “I’ve just told you a hundred times, they are married.”

I glanced into the garden where my daughter and her partner sat cringing under the pergola.

There was a catch in his voice. I recognized that catch as I hear it coming out of my own mouth sometimes too. Sometimes it’s the catch of despair other times mere annoyance and I can tell the difference. I’ve had more practice, much more practice. I think I’ve already mastered controlled, cheerful yell for approximately 95% of the day, even when it’s night time. I’m working towards a 100% clearance rate but it’s not easy.

There are only two repeats that cut me to the quick. The first one is the ‘married? / who is that man?’ question and the other is the ‘are they still autistic?’ question, but I’ve learned my stock answer by heart, the words, the tone, the delivery and that helps a lot.

But it’s different for him. I have the degree of separation, no blood, but he’s her only child, very bloody. All the onus is on him, I’m just a bystander in the headlights. I don’t know how to get the balance right between interference and privacy? I’m on unfamiliar territory and the ground is shifting fast.

Earthquake country. What to do?

http://sandwichedgenes.blogspot.com/2009/08/earthquake-country-what-to-do.html

Traveling light

I moan to my mother on the telephone about laundry. My mother moans to me on the telephone about Alzheimer’s, my father’s current state of health. It’s a form of international therapy for care givers, the cheap option, the time saving option, the option that relieves us of the problem of actually leaving the house. As we pause for reflection about our lot in life a very small shard of knowledge pokes me in the brain, two inches above my left temple, sharp, pointy with a nasty little thorn on the edge. We say our good byes and hang up.

I hover by the phone and think.

We have been back in the States for a month, four weeks just over, with Nonna, her tiny suitcase and her small collection of personal belongings. I had noticed that she has been more accident prone. I had noticed that her clothing was less than pristine. I had noticed she hadn’t been handing me presents of her clothing to add to the load. I had not connected the dots. I had noticed the lack of complaints, relieved. I had not noticed that her prompt was absent:-

“Why you not change my sheets today?”
“Because I try and stagger the loads.”
“It’s not my turn today?”
“No…..your turn is on Wednesday.”

A two liner exchange imprinted in my inventory of replies but I’ve not used it, not once, in four weeks. I skip along to her room and peek inside. I have not been inside for four weeks. I have respected her privacy or so I thought. Nonna naps on the bed because of a sleepless night. I know it was a sleepless night because I asked how she slept. She replied with the second of her alternating responses:- “me? I always sleep perfectly!” but the coffee machine full of spent grounds doesn’t lie. I watch her sleep, curled over tousled bedclothes. A picture of innocent neglect or overlooked failings. Someone must do something. Something must be done. I am the someone, but what to do? Or maybe, just how and when and which way?

Traveling light

http://sandwichedgenes.blogspot.com/2009/08/traveling-light.html

And other complications

At 5:15 in the morning I am busy sautéing onions in the kitchen. The boys read comic books in the family room, a direct consequence of the new campaign ‘no electronics in the morning.’ Their holiday plan is to skip sleep completely to gain more electronics time. I took a leaf out of my mother’s book, the one that reads ‘do try and get some rest dear,’ with subtext that says ‘enough is enough.’ It’s not a perfect solution, more of a holding pattern when Nonna appears, “ooo wot you do dere? You’re making lunch already?”
“No ….supper. I’m trying to get ahead.”
“When you cook lunch den?”
“I won’t cook, just sandwiches.”
“Dat’s a pity. Wot we do today den?” I’m tempted to say ‘tread water’ or just ‘cope.’
“Take a swim, do some crafts……the usual.”
“Dat’s a pity. I tink I watch dah news den please?” I take a deep breath and take a small stand, “could you watch it later, when the boys aren’t here please?”
“No news? Why?” It’s my best shot, appeal to her highly superior Grandmotherly sensitivities.
“Because all that carnage upsets the boys, the children, it scares them.” I don’t mention that it probably also scares the neighbours too at 50 decibels before dawn.
“Oh yes. Of course. I see. Just a coffee den please?”
There! That was easy.

And other complications

http://sandwichedgenes.blogspot.com/2009/08/and-other-complications.html

Dodos and other game old birds

I am in mid thunk, toying with paper, pencil and an elusive menu plan when I am struck by a stroke of unexpected genius. 8 people in the family and only seven days in the week. Surely I just need to ask each person to come up with one dinner and I will save myself no end of brain injury? I skip the children as I already know that their choices carved in cement. I tackle Nonna in the garden. This proves to be the usual challenge, how to have a private conversation at 50 decibels?

“Name me a dinner. Anything you like.”
“Why?”
“I’m trying to make a menu plan for the week. This way you’ll have at least one thing you like.”
“But I already like what you give me.”
“That’s no help at all. Think of something else that you like.”
“You know……anything……I don’t mind.”
“You’re being very un-coperative…….be helpful!”
She grins as she opens her palms in question.
“Eggs.”
“What sort of eggs?”
“Quail, duck, caviar!”
I pout. She beams.
“Anyway…..you don’t like fish.”
“I’m very easy to please apart from dah fish.”
“So you mean hard boiled eggs?”
“Yes.”
“What else?”
“Salad.”
“What kind of salad?”
“Dah usual.”
“Anything else?”
“Some kind of meat.”
“Which kind of meat?”
“Salami.”
“And……?”
“Some kind of cheese.”
“Which kind of cheese?”
At this rate of progress it will take me a week to canvas all the troops. I begin to wonder if I really am saving time and brain power.
“Oh you know.”
“No I don’t…….that’s why I’m asking.”
“Soft.”
“Brie?”
“Not really.”
“Camembert……Edam?”
“No I hate dat rubbery stuff.”
I make an exaggerated sighing noise, loud enough for people with dodgy hearing aides.
“Don’t be such an old fossil Maddy.”
“!”
“No……not fossil…..wot is dat ting without a spine?”
“A spineless…….an amoeba?”
“No. Dat old ting? Dinosaur ting without a spine?”
“Er?”
“No…..not spineless……flightless!”
“Pteradactyl! No that can fly. An ostrich? No that’s not a dinosaur……..”
“Anyway…..wotever it iz……do wot I do…….cook wot you like and to ell with dah rest of dem.”
“!”

Dodos and other game old birds

http://sandwichedgenes.blogspot.com/2009/08/dodos-and-other-old-birds.html