A Bad Train Day, and a spark or two within the fog of #Alzheimer's

On Saturday I had a Bad Train Day.  A few times a year I travel southwards to meet up with my sister and visit our mother in her care home, see other family and friends, and friends of my late father.  

Last week, the journey south was unusually easy; the stretch from Sheffield to Leicester was a positive joy.  A train with eight coaches, and about as many passengers.  I did not only have a table, but enjoyed it all to myself, a situation so rare that I was tempted to empty out the contents of my bag all over the table, just for the hell of it, which made a change from being given dirty looks from the person opposite me because my sandwich and propped up Kindle is encroaching one millimetre into their designated laptop territory.  No grizzling, unrestrained kiddies, no person in the seat behind discussing the ins and outs of the meeting she has just attended, at a volume that suggests this information is of interest to every person in Coach D.

I must have used up all my Good Train Day credits on that one hour-long stretch, for the journey back was what people these days describe as 'challenging'.  When I hit the Leicester to Sheffield leg, I realised that I was to pay for the blissful journey of four days earlier.  Remind me never to travel on the Saturday of a Bank Holiday weekend again.....

The train was so packed that I had to abandon all good manners just to force myself and my extremely heavy case into the coach.  Having elbowed my way past youngsters with earbuds in place who couldn't hear me saying 'excuse me please', I finally reached my booked seat to find that, of course, someone was sitting in it.  I did my usual; I produced my seat reservation, smiled, and politely told the girl sitting in it that she was in my seat.  Her answer: "Yeah but there was a woman with a little kid sitting in mine, like."  

I tried to point out, delicately and politely, that her generosity in giving up her seat and the fact that she was sitting in mine were actually unrelated, to which she said, "Yeah but she had a little kid like," and looked at me as if I'd suggested she make the mother and child walk to Sheffield.  In the end, I decided to make it simple.  I showed her my seat reservation and said, "This is seat B 61A, which I've booked, and I'd like to sit in it, please."  She started doing that rolling eyes and 'tssk' thing to the other people sitting round the table, some of whom joined in, clearly also unable to grasp that though her decision to give up her seat was admirable, it did not qualify her to nick mine.  Eventually a young man sitting opposite very kindly offered me his seat, I believe to stop a fight breaking out.

Leicester to Sheffield

The train from Sheffield to Newcastle was equally sardine can-like.  I oozed into the coach from between several ear-budded, cagouled bodies to find that someone was using the end-of-coach luggage rack as a seat.  He had made himself very comfortable, laptop beside him, and was most surprised when I asked him to get off so I could put my case on the shelf.  He must have been about a third of my age and stood by, most patiently, while I wrestled a case so heavy that it took me three attempts to lift it onto the rack.  I had to admire the way he waited for several minutes without complaining about the inconvenience, hands in pockets, grinning, for me to finish this feat, before squeezing himself back into the space beside it. 

Then I had to manoeuvre my way to my seat by clambering over all the cases in the aisle, because, it appeared, everyone but me was too polite to ask the lad to get off the damn luggage rack so they could use it for the purpose for which it was intended.

Sheffield to Newcastle

But the few days away were worth the struggle of the journey back.  On Wednesday, in the church where my dad used to go, a plaque has been put on the pew where he always used to sit, and the vicar gathered the small congregation round to see it and say a few words for Dad, which was lovely.

In the afternoon we went to see Mum.  She is 92, has had Alzheimer's for ten years, and has been in a care home for about six.  She can still walk around and, although she talks gobbledegook most of the time, now and again she comes out with some understandable words in response to something we've said.  When we visited her in June, there was a chap playing a guitar in the large dining room, and Mum was clearly enjoying the music.  I said, 'You used to sing in a choir, didn't you?' (Kings College London in the 1940s, when she was at university, I believe), and she looked round at me and said, 'Yes, I did', quite clearly.  

Us managing a conversation with Mum a couple of months ago!

This time, Julia talked to her about visiting her godmother, a friend of our parents' from many years ago.  Mum said, 'Oh yes', and tried to say her name. 

She usually recognises us, too.  My friend Zoe, who worked in an old people's home (all types of dementia) for many years, said that she can probably recognise our smell; Mum always picks up our hands and kisses them, as she did with Dad.  Also, she pointed out that as we stay in our parents' old house when we go to visit, we probably bring with it its familiar smell, too.  Thanks, Zoe; I hadn't thought of that.  It's logical, though, isn't it?  Because smell is the most evocative sense of all as far as memories are concerned.

Zoe believes, as I do, that people with long-term Alzheimer's remember and know about stuff all the time, even just for brief moments.  They're not just ga-ga.  Which is why it is so important to keep visiting and talking to them.  When Dad died eleven months ago I told Mum about it, and she didn't say anything, but she held my hand, looked into the distance and nodded; the nurses said she seemed very depressed and deteriorated for a few months afterwards, but has now perked up again.  Odd but true: they said she seemed depressed for the two days before he died, and on the day, before anyone at the home knew about it.  It's in her notes that are written up on a daily basis, to which we have access.

Last week Julia took this photo of her and me, which I think is lovely. 

This is a picture of her taken a few years before she became ill; I love this one.  Julia took it; one of those snaps that turns out so perfectly.

....and her, me and Julia, 59 years ago ~ I'm the one in the shawl!

*****

My Mum

... is ninety today.  

Me, Mum and Julia, 1987.  1980s big hair all round!

Julia, Mum and me
~ August 1959.  That's me in the shawl!

February 17th, 2016 ~ Mum is ninety today, though she won't know about it because she's had Alzheimer's for the past seven years.  Dad will take a card to the care home where she lives now, from all of us, but it won't mean anything to her; she hasn't known about dates and times for some years now.  Sometimes she thinks I am her sister Angela, who lived in Australia and died not so long ago; she has also asked me where she knows me from! :)

(Note from later:  Dad said she seemed to enjoy looking at her cards, even though she didn't understand what they were!  Or maybe she did ~ alas, we don't know)

Mum, bottom left, with her family, probably in about 1937, definitely pre-war anyway.  Her brothers at the top, Ken and Geoff, both fought in the war.  My grandparents, in the middle, were born in 1888 and 1891 - seems amazing!

Mum with Dad at her care home, a couple of years ago

Before crappy old Alzheimer's, Mum was a funny, witty, intelligent woman who was always more interested in reading books, doing cryptic crosswords (and learning her lines for various am-dram performances when she was younger) than doing domestic stuff - obviously where I get it from!  The house was always immaculate and we were wonderfully well looked after, but she wasn't a dedicated 'homemaker' and never encouraged me or my sister to be so, either.  She used to knit for us when we were children (because women just did, in the 1960s, didn't they?), but she only ever made a token attempt at things like dressmaking.  I remember Dad buying her a posh sewing machine once, and she stubbornly refused to use it ~ she was (and still is!) a very contrary Aquarian! 
 

Mum in the conservatory in her and Dad's house, about 12 years ago, I think

About twelve years ago, the two of them came to visit me in Norfolk.  It was bitterly cold, and we were walking round the lovely little town of Holt.  Dad wanted to buy Mum a nice furry hat to keep her warm, but she refused to wear such a thing, saying that she 'didn't want to look like some batty old woman'.  She was seventy-eight.  When she was over seventy and she and Dad moved into their village, she was asked if she was interested in meals on wheels.  She said that yes, of course, she'd be delighted to help out ~ not realising that they were asking her if she required them herself :) 

Mum and Dad in Portsmouth, 1955

Sometimes, when I go to see her, I see a little spark of the real her that still exists; she'll laugh about something in the way she used to, or even recognise me.  I'll be thinking of her today even though I can't go to see her - and now I'll stop before I get overly sentimental, or start blubbing!

Dad, Eddie, me, Julia and Mum ~ February 1999

In the care home, 2012

Mum, right, aged 8, in 1934, with her younger sister, Angela.

February 17th, 2021.  My parents are no longer with us, sadly; Mum died on March 28th, 2019, aged 93.  This was exactly 18 months after Dad, who died on September 28th, 2017, aged 88. I told her about Dad's death, and even though her Alzheimer's was more advanced then, she understood. I am so glad I wrote posts like these, while they were still alive.

Margaret ~ a short story

I've written on this blog before about my mother, who was diagnosed with Alzheimer's disease about five years ago, though my father says that the signs were there for some time before that.   I went to visit her last weekend, and decided to write this story.  It's all fiction, though obviously some of it is taken from my knowledge about the progression of the illness. I hope it will be of interest to anyone with a loved one in similar circumstances.

Mum and me in her care home, in 2014. 

Margaret

I find it’s best to make a joke of it.  I know Richard’s concerned.  I am, too, but I don’t want to worry him.  He’s always been such a worrier, my husband.

I thought I was managing to hide it pretty well, but I got caught out one morning when we were in Cornwall.  Richard asked me what I would like to do that day.  We were on holiday, you see.

I said, “I’d like to go to St Ives.” 

Richard said, “What, again?”

I didn’t know what he meant.  I had no recollection of the day before - which we had, apparently, spent in St Ives.  Richard showed me some of the pictures he’d taken on that clever new camera of his, the one where you can see the photos as you take them.  They did jog my memory a bit, but I pretended to remember more than I did.

Paul and Vicky make jokes about it and say things like “Mum’s getting senile”, but Richard has stopped being amused by this.  For me, it’s frustrating, and sometimes a little frightening.  I think it’s just my age; at seventy-eight I can’t expect my mind to be as sharp as it was when I was fifty.  

Richard’s still is, though.

~~~

Something awful happened today.  Paul came round to 'keep an eye on me' while Richard went to watch a cricket match, and when I tried to make him a cup of tea I couldn’t remember how to do it.  My mind was a complete blank.  I was so confused and upset that I just went back through to the living room and blurted it out.  I said, “I don't know how to make a cup of tea."  Paul was very sweet and said it was nothing to worry about.  He forgot things all the time, too, everyone did, he said, but I made him promise not to tell his father. 

~~~

I fell over a few days ago.  I’m not sure how many; I’m in hospital and the time tends to blur when you’re lying in bed, doesn't it?  I’m not even sure how or why I fell.  I must have been in the kitchen, looking out at the back garden, because the last thing I remember is the daffodils; they’ve just come out, you see.  The next thing I knew there were paramedics everywhere, all yellow and bright.  Like the daffodils.

The doctors and nurses say I can go home when they’ve done some tests.  I'm not telling them about what happened earlier.  Or it might have been yesterday, I'm not sure.  Paul came to see me, and I didn’t know who he was.  I was a having a nap, and I could hear him saying, “Mum, mum, it’s Paul,” and I thought, don’t be silly, you’re a big tall grown up man, my Paul is only a little boy.  I think I might have actually said it, too.  Then he laughed and I recognised his face.

Everything's all mushed up in my head.  I imagine that’s something to do with the medication they’re giving me.  I hurt my back when I fell.  I forget about it, until I try to move. 

Richard’s taking me to see a specialist.  I suppose that means being poked around and taking more tablets.  I have pills for my blood pressure, for my heart, for my cholesterol and goodness knows what else, and now I’ll get some for my daft brain.  I asked Richard how I was supposed to remember to take them.  We laughed about that.  He’s been taking charge of my medication for some time, now.  Doles me them out each morning at breakfast.  He takes charge of most things round the house nowadays.  Now I come to think of it I haven’t cooked a meal for a while.   Vicky told me I went out to sit in the garden and let some eggs boil dry.  I don't remember.  She said I ruined the saucepan.  Still, anyone could forget something like that.

~~~

The specialist says I have Alzheimer’s disease.  Maybe I have.  I think I’ve just got Being-Seventy-Eight disease.  I said that, and Richard told me I'm seventy-nine.

~~~

Some mornings I wake up and I'm not sure where I am.  I don't tell anyone, though.  I behave normally - but then I go and ruin it by not knowing it's Christmas next week, like I did this morning.

      I don’t know what I’m doing in this house.  I want to go home.  I told Richard I wanted to go home but he says we live here.  He’s lying, because he wants to keep watching that silly television programme instead of taking me home.  I might just go on my own, I don’t need him to take me.

Such a big fuss.  I was on my way home, or so I thought, and the next minute the vicar was sitting me down on a bench in the churchyard and ringing up my husband, who came to collect me.  Richard said that if I want to go somewhere I must tell him, and that he'd been worried out of his mind when he couldn't find me.  But when I ask him to take me home he says we live here.

I know my house.  I can see Mother in the garden hanging out the washing, and I played with my dolls there when I was a little girl.  I had an old tea set, and I used to play tea parties with them.  

Paul came to see me.  I asked him to take me home to that house, but he said I haven’t lived there for fifty years.  I said, "Oh."  I didn't know what else to say.  I don't understand.  Sometimes I feel so confused I want to cry, because I don't know why I'm like this, and people keep telling me what's in my own head.  I can understand why my son uses bad language at times, honestly.  

~~~

Richard must have gone to work because he’s sent this other man to look after me.  He’s very nice but I wish Richard would come back.  The other man says he’s Richard, but he must think I’m daft.  This man has grey hair, and not very much of it, either, and he’s old and portly, whereas my husband is slim, dark, young, and rather dashing.

Sometimes I don’t know if I’m awake or asleep.  It’s not unpleasant, but it’s odd.  I think about things that have happened in the past, and then something invades those thoughts – one of the people in this house asking me if I want lunch, or another bloody cup of tea – and I can’t tell if I’ve just been asleep and have woken up, or if I was awake before and this bit is the dream.  I like it best when Richard is here, or when my mind empties.  When that happens, I see sky and sea, stretching out into the unknown.  It looks like a nice unknown. 

~~~

Richard is here today.  He says he’s never been away, and will never leave me.  He promised.   That made me feel warm and safe.  He shows me photographs of when we we got married, and when Paul and Vicky were children.  I do like looking at them, but I wish he wouldn’t keep glancing at me to gauge my reaction. 

Vicky came today.  She had some children with her.  They're my grandchildren, apparently.  News to me.  Vicky said, "Well, they grow up so fast."

Richard takes me to this place called a 'Day Centre', but doesn't tell me what it's for.  They make me write down things like my name and where I live.  It's tiring because I find writing hard these days.  The people have names like Gavin and Becky on badges on their chests, and talk to me as if I'm stupid.  It all seems rather pointless.

I don’t know where Richard is.  I haven’t seen him for ages.  The other man is always here, looking after me.  I don’t know who he is, exactly, but I have a feeling his name is Alan.  He’s very kind but I wish Richard would come back.  I wish someone would tell me where he is.

I got a letter today from my sister in Canada.  I didn’t know I had a sister in Canada.   

Alan is watching something on television, like he does most nights.  It’s boring and silly, so I just close my eyes and think of the sky and sea.  The sea sparkles in the sunlight.  The water is clear, and calm, gently rippling.  It’s beautiful, so peaceful.  I could just spread my wings and fly over it into the distance.  
     Alan is hoping I won't ask him to take me home again, I can tell.  

I fell over again.  Lots of people got me into an ambulance, and now I’m in hospital.  Richard comes to see me.  I told him I loved him, and that made him cry, the silly old sausage.

The nurses give me pills and I drift in and out of sleep.  I wish they’d stop fussing round and just let me drift.  There is one nurse who is very bossy, like that horrible prefect in the sixth form.  Constance Markham, that was her name.  Anyway, I threw my hairbrush at her today when she was trying to make me get up and ‘do my physio’, whatever the heck that means.  Serves her right.  Stupid woman.

Richard arrived again, with a pretty, smiling woman who says she is my daughter.  Very funny.  Vicky's only five.  When they went away I closed my eyes and watched the light in the smooth, bright sky, and heard the soft ripple of the waves.

I’m in another place now.  Alan says it’s because he can’t look after me properly since my fall.  I need proper medical care, he says.  I thought, but you don’t need to look after me, my husband will do that.  I couldn’t get the words out, though.  I want to go home.

There are people here who all wear bright green t-shirts.  There’s a big jolly one who makes me laugh.  She’s called Bernice.  There are others, but I like Bernice best.  There are lots of other people, too.  I don't know who they are.  I hope I can go home soon. 

Richard comes to see me at last.  Other people do, too, but I don’t know who they all are.  A pretty woman came and she was very sweet, and kissed me, and talked about her childhood as if she thought I would know about it too, but I don't know who she was.  I asked her to tell me and she looked as if she was going to cry.  I shut my eyes.

The ladies help me to get into bed at night, and put my nightie on.  One of them says "I see you've been playing hide and seek with your slippers again, Margaret!"  I haven't got a clue what she means.  I think she's Polish. 

This is a nice place.  I have a private room.  I can’t always find it, though.  I look in a drawer to see if the room I'm in is mine but I’m not sure if the things I find belong to me or not.  Bernice comes in and I try to ask if it's my room, but she just said, “come on, now, lovie, we’ll get you a cup of tea in a minute,” so I must have said it wrong.  I take the things out of the drawer anyway, and hide them under my cardigan so I can look at them later. 

Alan gives me birthday cards.  I didn't know it was my birthday.  If I close my eyes I can see birthday pictures but they're in winter, and outside the window the sun is shining.  He says I'm eighty-one.  I ask if Richard will be here soon, and he says he is Richard.  He shows me pictures of us together, and I realise how silly I am.  I feel embarrassed. Of course.  Alan is Richard.  

~~~

In the chair by the window I look out and at first I see the garden, but when I close my eyes I see the soft, pale blue, rippling waves, so clear, and I want to float off on them, to the light on the horizon.  

It appears to be Christmas.  Don't know what I'm supposed to do.  Alan is here.  I expect Richard will pick me up soon to take me home.

~~~

I can see daffodils.  Alan holds my hand and tells me I can’t go home yet because I’m ‘incontinent’.  Bloody ridiculous.  I’ll wait until Richard gets here.  At the other end of the room I see Vicky, my daughter.  I thought she lived in Canada.  She laughs and says no, she lives only a few miles away.  It’s lovely to see her.  She talks to me for a bit about when she was a little girl, but then I close my eyes and see the sea and the lovely light in the sky.

Sometimes I can’t get out of my chair, and I hate it.  I’d like to shout for Bernice or Richard but I never know if they’re here.  I tried to shout just now, but when I opened my mouth the words sounded all mixed up.  Then this silly woman walked past and I threw a biscuit at her. 

When I close my eyes and see the sky I feel at peace.  If I try to move, my body doesn’t work.  Even my mouth won’t work, and talking takes so much effort.  I can hear what people say to me but mostly they say things I don’t know about.  I think I used to know things and do things, but I can't remember what; it's all gone.  At the end of the sea is the still, calm sky.  I’m getting closer to it now, as if I’m sailing towards it.  It makes me happy.   

My limbs are stiff and weak.  They don’t seem to work much at all now.  People help me get from one place to another.  I can hear but I can’t understand, I want to tell people things  but I don't know the words.  Although I know I must be sailing because I'm on the water, I can't see the boat; I'm just floating.  When I am on the water heading to the bright light, my limbs don't feel stiff, and I think that if I tried to open my mouth I would be able to sing.

I'm happy when Richard is with me, holding my hand.  That makes me feel safe and loved.  I'm happy when I'm on the clear blue water, floating towards that beautiful bright light.  The people in this place (I think it's some sort of hotel) help me to do things.  Eat, change, go to the lavatory - it's all a blur, really. There is one big lady who smiles a lot and makes me laugh, but I don't know her name.   I hear her say to the pretty woman who comes to see me, "don't worry, your Mum's got the memory of a goldfish these days.  I know, I know, it's tragic, love."  I realise the pretty woman is my daughter, but I can't remember her name.  I think I might have a son, too, but I don't know who he is.  Never mind.  Those biscuits look nice.  

Each time I close my eyes I'm moving nearer and nearer the edge of the sea, and when I get there I will be happy and at peace.  Swimming like a goldfish, maybe.

I hear a noise.  I open my eyes and look up.  It's Richard, waking me up and smiling at me.

"Do you want a cup of tea?" he asks me.  

I want to tell him that I'd prefer some of the pink milky stuff they've been giving me lately, because it's sweet and smooth and tastes of strawberries like the ones we used to pick in the fields, Gerald and June and me, before the war.  Gerald used to be sick from eating too many, and Mummy would say he was a gannet.  I can see his red stained mouth now, and it makes me smile.  No, I don't want tea, I want the nice pink milky stuff, but my mouth won't say the words.  It doesn't matter.  I smile at Richard.  I love him.  As long as he comes to see me and holds my hand, that's all that matters.

★.:*´`*:.☆  

Alzheimers and Ernest Shackleton

I wrote this in summer 2011, on Facebook

I've just spent nearly a week staying with my parents; my father is 81, and my mother is 85 and was diagnosed with Alzheimers about 18 months ago.

Mum spends much of her day wanting to go 'home', which alternates between the home of her childhood, and some fictitious place in her head.  She challenges my dad approximately every five minutes about his true identity.  She needs (very) frequent confirmation of her name, her age, her address......  at least thirty times during my stay she asked me if I knew her son, and was surprised/disbelieving when I said that yes, I did, because he is my brother.  To continue to describe the effects of this illness would be as tedious to write and read as they are to witness them - my dad lives with this 24 hours a day.  I suggested that he make cards with the appropriate pieces of information written on them, so he can just hold them up, rather than having to repeat himself over and over and over again.  Joke....

Our family, taken in 1994.  My pre-Alzheimers Mummy would kill me if she knew I'd posted a picture of her wearing such peculiar trousers - we were at an air show - but it was the most recent one I could find of all 5 of us!

My mum is an extremely intelligent, witty person, well read, well educated, with a lively Aquarian off-the-wall outlook.  I've always really enjoyed her company.  She loved dead hard cryptic crosswords, and learnt to speak Italian when she was in her 70s.  She used to be an A Level French teacher.   Now, her brain is mashed.  Dad, at 81, is having to deal with all this, instead of being able to meander comfortably through his twilight years!  Apart from anything else, he has lost his life-long companion.

Mum and Dad in 1955, in Portsmouth

Because my parents are, like, WELL old, they go to bed early.  For six nights I had to be in bed at ten o'clock, at which time the house is all shut up - in other words, I couldn't sit up and watch telly.  Neither could I have a fag.  However, there are many v interesting books in the house; a cracking tome about Ernest Shackleton and his ill-fated mission to cross Antarctica became my nightly friend.  I do love a bit of polar exploration, particularly when it goes wrong, which it usually does.  The tale of Shackleton and the Endurance has fascinated me for years, not only because of the amazing way in which the whole party survived against all odds, but also because they were such twats to embark upon it in the first place, when they were actually warned that the conditions were about the opposite from what they should have been for even a chance of success.  Talk about the triumph of ego over sense, eh?

I kept a wee hip flask of whisky in my bag (from which I daresay Shackleton and his merry men would have been grateful for a few nips), which perfectly complimented the stories of ten days at sea with no fresh water, a diet of seal steaks and dead husky, and NOT TAKING OFF THEIR UNDERWEAR FOR A YEAR.  How bad did those dudes smell when they got to South Georgia, huh??

Am home now, wonderful home, but just thinking of people everywhere who care for loved ones with Alzheimers - it SUCKS.  The person you love is there,  but not there, anymore.  My brother and sister and I have commented already that Mum as we knew our mum is gone - how much worse it is for Dad, who lives with it every day.

Since I wrote this my mother has, of course, deteriorated, and has been in a care home since June 2012.  She still knows who we are - just.  It's so hard for Dad, who misses her constantly - he sees memories in everything.

This month (May 2013) my sister visited Mum and took her laptop in, so that I could talk to her on Skype, as my personal circumstances mean that I can't visit as often as I'd like.  Mum hasn't seen me since December, but when she saw me she said, "Oh, there's Ree" - Ree was what I used to call myself when I was a little girl.  The problem with Skype is that you can't cry on it, because people will see you!

Mum with my sister Julia and me, 1959