Wednesday 19 March 2014

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.

★.:*´`*:.☆  







44 comments:

  1. A poignant story, Terry. Brought a tear to my eye.

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  2. Thanks for commenting, Jan - and of course it's all just a big guess, as I have no idea what really goes on in my mother's or anyone else's head, but I hope she's happy some of the time - I think she is.

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  3. Hi Terry, I found your blog via Twitter (wrong way round I know!) and wanted to say how moving and accurate I feel your story is. We are going through this with a family member and every word rang true. You've managed to sum up exactly what this horrible disease is like, for everyone concerned, and though you only imagined what was in your mum's head, from everything I have witnessed I would say you spoke the words she would say... if she could tell the story herself. Sorry you're having to go through this with your mum, that must make it so much more painful. Thank you for sharing this very personal experience with us, take care :-)

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    1. Jane, thanks so much for reading and commenting - and I'm sorry for you that it rings so true! I'm glad I got it right, anyway; I was not sure about posting this but I just had the idea to write it after seeing Mum on Sunday and wondering what she was thinking. I hope both she and your family member DO have a good place in their heads; my sister and I often say that the only thing that matters is that she laughs sometimes and seems happy! All the best with everything xx

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  4. Sheesh, TT, why did you have to make me cry? This reminded me so much of of my dad. Beautifully written. I think this must be so close to what it's like. Of course we can't know, but it really, really moved me. xxx

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    1. Sorry I made you cry!!! Yes - it's because we can't know that I wanted to write it, just the way I thought it might be. I'm glad you liked it, though I know 'like' might be the wrong word! 78% through HW, by the way, and I love it xx

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  5. Briliantly poignant story ..we so often only read the carer's side. I anticipate this aatge with encroaching dread....I'd love to know whether it is the way people with dementia do see the world....I suppose we shall never know. Thanks for writing this. Made me very thoughtful.

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    1. Thanks, Mrs H! That's what's so frustrating, isn't it? The fact that, alas, we don't know. Dad and I say that practically every time we go to see her.

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  6. What a beautiful and touching story.

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  7. A very moving piece, Terry. I cried but I also smiled, a compassionate smile. You delivered with such empathy and I feel that - could she have read it - your mother would have hugged you. I wondered, did you find writing it therapeutic?
    Thank you for sharing x
    Sunday's Sparrow

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    1. It would have made Mum laugh - she does still laugh at things, and occasionally gets what we mean! The other day I did something in a silly fake northern accent like we would have done, and she tried to do it back. I'm not aware of finding it therapeutic, in partic I was really just thinking of how many who have loved ones suffering from this might relate to it.... but who knows, maybe I did! Thanks, Ms Sparrow x

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  8. Very, very good, TC, a creative triumph. I shall recommend it all around. I'm not sure if Dad could take it, but maybe I underestimate him.

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    1. Oh, phew, I wasn't sure about it. I didn't think there was anything in it that would upset Dad - I didn't want to do anything hard-hitting. You could always ask him first - I did tell him I was going to write it and said I would send him a link to my blog! But maybe we should talk about it first!

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  9. Beautiful, Terry. Very poignant and written with great restraint and poise. My father and I are going through the early stages if this process and my mother is already in care, so I can identify. Thanks for sharing this - I shall do the same.

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    1. Thanks very much ~ I just saw that you had. Speak more about such things via email, no doubt!

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  10. Terry, this was such a beautifully written story... truly. I could see everything through her eyes... quite sad but in a magnificently refreshing sort of way... like living and understanding Alzheimer's through the eyes of someone we love.
    My great grandmother died from this disease. I remember when she used to care for my sister and I and how much fun we would have while on vacations down to the shore. But when she had Alzheimer's, she was unable to recognize us. It was very frustrating to see her have to suffer like from this disease. I can only hope your time spent with your mum is impeccable and will keep you in my thoughts and her in my prayers=) So glad I stopped by your blog! I love your writing.

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    1. Gina! Thanks so much for reading, and I can tell you saw the story in exactly the way I wanted it to be seen, which is lovely. Yes, frustrating does describe that feeling so well, rather than upsetting, much of the time, I think. You're very kind - thank you so much for taking the time to read, and write this comment, all of which means alot. xx

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  11. Terry, I'm so pleased you found my blog because if you hadn't, I would have never found this. It's a wonderful story, written with great sensitivity. I'm going to forward the link to a friend of mine who's currently going through this with her mum; I'm sure it will help her.

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    1. Hey... the power of the browse! Greetings, Katrina! Thank you for your kind comment ~ and I hope your friend finds it comforting, and not too tear inducing! Please follow me on Twitter if we aren't following already (@TerryTyler4, or I think my pic below goes to my Twitter page) and I'll follow you back :)

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  12. Beautifully-written, as are all your stories, and very moving. I think you've got it exactly right. Well done, Terry.
    Love
    Jenny
    xx

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  13. Heartbreaking, it really moved me. Almost made me cry, and so very very real

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  14. Oh, Terry, what a heartbreaking, beautiful and moving story. I have chills and tears from this. You are an excellent writer.

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    1. Thanks so much for reading and commenting, Samantha, and it was lovely to talk to you this afternoon! xx

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  15. A beautiful, compassionate piece of writing Terry, it made me cry, then smile, then cry, and so on.

    I used to work with the elderly, many of whom suffered dementia, I would often wonder 'where do you go to my lovely, when your alone in your head', and found it incredibly hard when they were distressed.

    I'm going to share this piece with an online campaigner I know, you may have hears of him, he is @tommyNtour #TommyOnTour, if you don't already follow him, you might like to :)

    Take care

    Kimmie x

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    1. Thanks, Kimmie, I appreciate that - yes, I will follow Tommy! I read the story again this morning, and it made me cry too, so I thought I would post it again. Thanks for reading xxx

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  16. Thanks for pointing this out to me. Different parts reminds me of different friends who've succumbed or who are succumbing to dementia.

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    1. Cheers, FP; I took most of it from what I've observed with Mum, but also bits from things I've heard (and the occasional bit from imagination!).

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  17. Thanks for reminding me of your moving story. It has all the elements of the disease. Particularly loved this bit:
    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.

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    1. Anne, thank you! Thanks for looking again - yes, I suppose that's what I meant by treating it with elements of humour, and in a lighthearted way, too. My mother is always surprised to discover how old she is, too :)

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  18. Hi Terry, what a beautiful story. My grandmother had Alzheimer's and did manage quite a bit of wandering about trying to get 'home'. Some poignant reminders in here for me along with forgetting who we all were. We too managed a few laughs, though sadly the person affected doesn't so much. One of the classics was her bellowing at my cousin's wedding - "Who's wedding are we at?" right at the "I do" moment.
    Lisa xx

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  19. Hi Terry, what a beautiful story. My grandmother had Alzheimer's and did manage quite a bit of wandering about trying to get 'home'. Some poignant reminders in here for me along with forgetting who we all were. We too managed a few laughs, though sadly the person affected doesn't so much. One of the classics was her bellowing at my cousin's wedding - "Who's wedding are we at?" right at the "I do" moment.
    Lisa xx

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    1. Ha ha!!!! Oh yes, they come out with some belters!!!!! My mother seems to have retained her social sense most of all; even now, when she can hardly talk, she's very careful to behave appropriately in front of people. One of the funniest things was when she was first being diagnosed. She went to the doctor with Dad, behaving and looking quite normal, then whispered to the doctor "He's not my husband, you know", which kind of gave it all away....! Thanks for reading and commenting xx

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  20. What a beautiful story, my mum in law suffered from alzeiemers and you have just brought so many memories back, it felt like you were talking about her, brought tears and smiles thank you x

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    1. Thanks so much for reading it, Dawn. I'm glad some of the memories made you smile, too, at least xx

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  21. Thanks for pointing out the hashtag to me, and finally getting me here. Have intended to read this since the last time you referred me to it, but of course I went to that other place whose road is paved by good intentions instead. ;-)

    Some of this sounds very familiar, as you know; other bits are yet to come, but closer than I care to think about. My mother occasionally tells people my dad is no really her husband; other time she calls him by his first name with no trouble at all. I don't know what is worse for him, when she doesn't know who she is or when she insists he doesn't love her. Sometimes the efforts to cover up are delightfully witty. Yesterday when I called and my name came up on the TV screen - they have Comcast Triple Play, or some such thing, which combines phone and cable TV and internet, though they don't really know how to use that - she got proactive, turned to my father, and said "Guess who?"

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    1. Yes, it's surprising how our experiences are so similar, really - and yes, there are still laughs to be had! Thanks for reading x

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  22. This is really lovely, and I can imagine that this could well have been what is was like for my Grandma, who had Alzheimer's, and once spent a day in her care home bemusedly asking my mum who on earth the huge, loud man (her youngest son) entertaining all the other old ladies was. I also recall her forgetting the word 'grapes' & simply deciding, after some deliberation, she would call them 'goobers' instead.

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    1. Ha ha! Yes, it can be funny - we do sometimes laugh about some of the things Mum does; I think it kind of helps you deal with it. Thanks so much for reading - I hope this is how it feels for Mum, too. I kind of wrote it for my Dad, to help him not worry about her so much.

      It is very odd, sometimes, seeing my intelligent, smart mother who was so witty and well read, and the sort of woman who thought you weren't properly dressed without gloves (she was born in the 1920s), throwing a biscuit at the care home helper, and sticking her tongue out at her!

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  23. Oh yes, there are many funny moments... we all laugh about them sometimes, even Dad! It's lovely when sometimes you still see flashes of the 'old them'. Even after 7 and a half years, I sometimes see them with Mum, and know she has understood me. I am so glad you had a nice walk with your granddad! x

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  24. Ha ha! I find what Mum liked to do/was interested in went in phases. Now, there's nothing much, alas.

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  25. Oh, Terry, that is so beautiful and all the more poignant because that is what my mother in law is going through. So frail in mind and body and our biggest fear is that she will be frightened.

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    1. If it's any help, I don't think Mum is. She's been in her care home for 5 years now (and had the illness for 8 or 9 years), and she never seemed frightened. Just vague and a bit stroppy, sometimes. And she still recognises Dad all the time, though she only recognises me now and again, maybe partly because she doesn't see me often. Last time I went to see her she didn't know who I was, then at one point about ten minutes later she looked at me, and I knew she knew me, and she said 'hello, darling', and seemed really pleased to see me. No, I don't think she's ever seemed frightened, I really don't.

      When she was first in the care home she used to ask to go home whenever we visited, so Dad used to tell her it was a hospice that she had to be in for medical care for her leg (she went in after a fall - this story is very much from our own experience!), and all it took was for one of the carers to distract her with something else, and then one day she said, 'Is this where I live now? It's very nice.' She thought it was a hotel, and she really did go for a wander and end up in the churchyard, and the vicar took her into the church and phoned Dad up. Even though she was trying to go 'home', though, all she seemed was a bit irritated and frustrated because she couldn't find it.

      The person we feel more sorry for is Dad, because he has had to go through it all with her! I'm sorry for what's happening to you - it's such a horrible illness. All you can hope is that it doesn't last too long, really. Though Mum is 91 now and still seems fighting fit - she's kept her marbles more than most in the home. But then she always was very stubborn!

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