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LucyGransnet (GNHQ) Thu 14-Jul-16 17:24:22

A bereavement without a death

Author Kate Moore doted on her grandmother, but by the time she realised dementia was taking hold of her, she had already slipped away.

Kate Moore

A bereavement without a death

Posted on: Thu 14-Jul-16 17:24:22


Lead photo

"I wish I knew who Lillian Punter was. For, by the end, not even she did."

I can remember being so excited when my granny moved into the annexe next door. Best of all: she would be walking me and my best friend to and from primary school every day.

My granny, Lillian Punter, was a wonderful woman. She worked as a nurse for over forty years – but family was what always came first. To this day the smell of bacon reminds me of the jolly breakfasts she'd cook up, while she also sewed towelling robes for all us grandkids, our initials stitched into the pockets, and made us bespoke Christmas stockings too. I was the youngest; she called me 'Granny's little treasure'.

When I was eight, she moved into the annexe, and for a while the babysitting worked out brilliantly. My friend and I would come home with her after school and she'd serve us biscuits while we fondled the ears of her Collie dog, Lassie, and watched cartoons.

One day, there were no cookies on the plate. There were just crumbs, as though we were birds she was feeding and not little girls. But Granny didn't know she'd done anything wrong.

My parents tell me now I was very distressed by the plate of crumbs my granny gave us: confused and upset, ashamed and embarrassed. I don't remember that; perhaps I've blocked it out. I do remember, later, my dad rushing out of the house to find Granny when she'd wandered off, wearing only her nightie. I remember Granny dressing for a party that didn't exist. I remember her forgetting who I was – and not just me, but my mother, too: her daughter.

I was too young to do it, but I wish I'd sat down with her and talked, before it was too late, about what my granny thought and dreamed and had experienced.

My granny had Alzheimer's disease.

They call it 'a bereavement without a death'. And that is what it's like, for you lose the person that you loved and in their place is a stranger. Sometimes that stranger is sweet and funny. Sometimes they're scared and befuddled, recognising no one and nothing. It's a disease that makes grandchildren parents to their grannies, having to explain, 'No, that's not right,' or 'This is how you make a cup of tea.' My sister recalls Granny staring in horror at a plate of spaghetti, pointing to all the 'worms'. That was an episode that made us children laugh, but most of them were just very upsetting.

My granny died a few days before I turned fourteen. By then, she was in a home, unable to remember anyone; unable to recall how to eat. I remember how thin she was; I remember going to say goodbye just before the end, but in fact we had lost her long ago. My granny vanished while I was watching cartoons and munching biscuits, and I never even noticed her go.

One of my biggest regrets is how little I know of her. My mum fills in the gaps, but when your relatives have Alzheimer's, so many stories never survive: they're lost in the fog of a brain that is clouding everything, where memories have become elusive as ghosts. I was too young to do it, but I wish I'd sat down with her and talked, before it was too late, about what my granny thought and dreamed and had experienced. I wish I knew who Lillian Punter was. For, by the end, not even she did.

Today, I volunteer for a leading dementia charity. And in this small way, once a month, I remember Granny.

Kate’s new book, The Radium Girls, is published by Simon Schuster and is available now from Amazon.

By Kate Moore

Twitter: @KateBooks

Newquay Thu 14-Jul-16 18:00:46

Just going through this at the mo with a friend who's mother is just at the top of the slippery slope. . . . So cruel.

WilmaKnickersfit Thu 14-Jul-16 18:13:10

My SiL told me at her DM's funeral that her Mum had died years ago.

ninathenana Thu 14-Jul-16 18:52:52

I felt the same about my mum. She wasn't there for the last two years of her life. There was just a physical presence. I felt bad that I wasn't grieving more when she died but I'd done my grieving before.

Falconbird Thu 14-Jul-16 20:29:34

Yes, my mother had a dementia for 6 years. She pretended to know me and kept saying "you're my daughter aren't you?" On another occasion she said "I don't know who you are but you are a very nice person."

This meant the world to me because she had always been very critical of me before the dementia took hold.

I will always remember the cornflakes on a plate instead of in a bowl - I knew then that things were definitely not right.

durhamjen Thu 14-Jul-16 20:42:43

My mother in law at the moment. She now just shouts at everyone, and doesn't know who we are. Three years ago, she was fine, living on her own, having to be taken out because she never drove, but she wasn't bothered, holding proper conversations, asking and answering questions.
What on earth happened to her?

Nana3 Thu 14-Jul-16 21:00:26

My Mum has been in her care home since October. OH visited her today and she said,
'They've found me a room here for tonight but what will I do tomorrow'.
It's heartbreaking.

Falconbird Fri 15-Jul-16 07:39:28

My heart goes out to you. Mum was just like that. In the hospital she kept asking if she had to lay claim to her bed and pay rent. sad

I wish someone at the time had told me that this is "normal" behaviour for someone with a dementia. I thought it was some trauma from her past coming out.

annsixty Fri 15-Jul-16 08:31:44

Sympathy and empathy to you all. It is a whole new ball game when it is a spouse.
I live with it 18 hours a day and with a stranger for a lot of that time.

littlefierce Fri 15-Jul-16 15:44:11

I have:

One auntie completely lost to dementia, non verbal & in foetal position

One auntie bedridden, talking but making no sense

One mother in law in a home, forgetting who we are & asking why she's being kept there when she's done nothing wrong

One cousin (now deceased) - early onset dementia

One (now deceased) mother with vascular dementia - she stayed 'herself' but short term memory completely shot & could do very little for herself because she couldn't remember to.

I've just turned 60 & find the thought of maybe ending up like this one day unbearable.

rubylady Sat 16-Jul-16 03:20:24

I am still grieving for my dad who died recently with dementia but it was the cancer which took him before he got to any really bad state with his dementia. I feel robbed at times, but I would have hated for him to have got so bad that he didn't know who I was and so maybe it was a blessing really but it doesn't feel like it. My heart goes out to you all, it really is the most awful disease. flowers

Annsixty I do feel so sorry for you, you do struggle with looking after your husband, it must be awful for you to live with the man you have loved all this time and he is so poorly. Are you still getting some respite? Is someone helping you? I really don't know how you cope with it all. I send you a big hug and I wish these flowers were real. flowers X

Falconbird Sat 16-Jul-16 06:58:35

Annsixty - You are doing a grand job and I admire your strength and fortitude.

My husband died of cancer 4 years ago and towards the end he didn't know me. The blank looks were hard to bear but about a day before he passed away he thought I was 18!!! I was 65 at the time.

My sons were there and they looked very anxious but I just played along and pretended I was 18 and we had just started dating.

flowers for all women and men who care for their loved ones.

morethan2 Sat 16-Jul-16 07:23:27

My MiL has always been at times 'difficult' and demanding. She's also been a much loved mother and granny, funny, independent, lively and a lot of the time lovely. She lived at the centre of the family, the linch pin, over a four or five years she became down right obnoxious to everyone, at times it was horribly embarrassing. Eighteen months ago she started to get thinner and thinner ended up in hospital and has never returned home. She's so very unhappy and in moments of clarity has said "prisoners have a better life than me" and she right. The horrible thing is the family has been forced to return her home to the council and she doesn't know. I know there are good reasons to keep up this lie but I just find it hard. I also feel she's lost all her human rights. She's stuck in this horrible place were the staff do the bare minimum. The food is truly terrible. Her little room is miserable. Most people have stopped visiting because they find her misery hard to witness. Just before she went into this home she was rushed to hospital and had to be resuscitated and I'm ashamed to say this and I've never said it to anyone but do you know there's part of me that wishes they hadn't resuscitated her I wish she'd be allowed to die while her life still had some dignity and we had all those funny wonderful memories of her. The family is being ripped apart by having to witness this and by the disagreements over her care. sad

WilmaKnickersfit Sat 16-Jul-16 07:29:19

Best wishes to everyone in these circumstances. I can't imagine what it must be like and admire you all. flowers

annsixty Sat 16-Jul-16 08:21:37

You should not be ashamed at that feeling morethan2 you are absolutely right.My H is not typical of many Alzheimer sufferers in that it is just his short term memory which has gone. He knows people he sees all the time but his anxiety is dreadful. He goes round the house picking things up and says where does this go "well actually it goes where you found it"!! "Where was that" he replies. As a result the house is ultra tidy but then he goes through drawers asking " what is this and what is it for?".

It truly has to be lived with to be understood.
Our GC are growing up , 2 are 17 and he treats them like toddlers which they try to cope with but get frustrated and the 2 youngest 7&5 have never known him any different and he can't cope with them and shouts at them a lot, consequently we see them very infrequently.
I could write a book but like friends you would get bored, I think that last sentence sums up my current life.

Anya Sat 16-Jul-16 08:42:31

Ann60 you have given us glimpses of your life with your H and it sounds so isolating. Sorry to hear that your friends don't understand, that's hard I know (((hugs))).

more than2 this is a situation that I've seen many times within families. There is no easy answer and people these days don't seem to want granny living with them, especially a granny as you have described.

It's not as usual for husbands or wives to send their spines to a care home, the other partner often has to soldier on, like Ann60, until one gets to point where it is becomes unmanageable.

Newquay Sat 16-Jul-16 09:15:33

Morethan2 it shows how important it is to have difficult conversations about resuscitation before there's any sort of crisis. We've had experiences in the family of this and it's made those terrible times so much easier when you know what the person concerned would want.
My dear sister's husband had multiple systems atrophy and he degenerated virtually every day for 9 long years. His mind was crystal clear all through. All he could do at the end was blink.
My DH used to lie on the bed watching sport with him while dear sister and I had a walk around outside (not far!). She told us (really DH) one day that if he stopped breathing he was to go and slowly make a cup of tea, read the paper and then return to him and NOT to call paramedics.
Neighbour had dementia and daughter had paramedics "assaulting" her poor Mum for 3/4 hour trying in vain to revive a lady who had NO quality of life-so sad and desperatesad
?? to all of you in the middle of this. Hang on in there and accept every help that there is and don't feel guilty.

durhamjen Sat 16-Jul-16 09:44:23

Morethan2, my mother in law had a stroke when she was in the first home she went into.
My son and his family were with her and we noticed she wasn't right. We mentioned it to the staff, who said she was probably tired.
When we got back home I phoned her son, who phoned the home and asked to speak to his mum. He then told the staff that that wasn't his mum and he wanted a doctor to see her.
She was transferred to a hospital, and was in a coma for five days. Then she woke up and said she was hungry.
We have often wondered if it would have been better if we hadn't noticed, particularly in the year when she knew who she was and often said she just wanted to go, as she put it.
I know where you are coming from.
My husband had cerebellar ataxia. He died from a brain tumour, and of the two I know which is the best way to die, like Newquay says, have the conversation. Make sure everyone necessary knows how you want to die.

harrigran Sat 16-Jul-16 10:28:43

I have been getting lapses of memory. DH keeps telling me we have had a conversation about certain subjects but I don't recall them. I have been told it is chemo brain fog and my memory will recover but it is like a foretaste of what may occur. flowers for all you carers.

Grandson2008 Sat 16-Jul-16 11:56:07

I know how you all feel I lost my precious mum 7weeks tom to vascular dementia and I thank god all the time I was with her at the end and she knew us all. It is s low death so when it does happen you have done most of the grieving. My dad has had pyscotic break and had to be sectioned so got a load going on. Just be strong and tell them they are loved. Xxx

Willow500 Sun 17-Jul-16 06:15:14

So sorry for your recent loss Grandson2008 and everyone else who has lost loved ones to this. I 'lost' both my parents several years before they actually passed with dementia. Their symptoms were different but the same outcome at the end. It's heartbreaking flowers

sox364 Sun 17-Jul-16 12:09:18

I did get to know my nan, I am so grateful for that and miss her so much.