Two of your children have been haunting your flat. They are trying to act normally but they are talking about things that you don’t understand. You feel frightened.

You haven’t been sleeping well for a long time now. The place where you live is big and dark and quiet at night and there are people who are out to Get you. Your daughter leaves. The other one stays.

Later it becomes clear that the Strange Man who is in your flat is going to kill you. You scream and scream until the Man telephones  your daughter. She's only just got home, she says. She can't come back. It'll be another hour. She's tired. She's with Francis and the boys.

Instead she tries to reassure you. She puts on her best and calmest voice. She tells you that this Strange Man is your darling youngest son called Neddy who has been with you and her in the flat all day. And the day before. You've never heard anything so ridiculous! You can’t possibly believe her and anyway she isn't even here. She’s in her home somewhere miles away where she doesn’t want you. She doesn’t know who’s in your flat at night.

Or perhaps she does and she’s in a conspiracy with this Strange Man? You try not to think that because you want to trust her, even though you think she’s far too bossy and sometimes very stupid. But you’re in your nightdress now and it’s getting dark and this Man says he is staying in your spare room. He says he did it last night too. 

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You throw down the phone and continue to scream until the Man gives up and goes away. Someone
else comes. You don’t know her name but she’s a “lassie”. They work here. You're used to them 
She makes you talk to your daughter again but you know she's far away. She isn't any use. So the lassie helps you find your bed and you hide there. The Man does not come back.

Your flat looks different today. You’re not sure why. Did your children say something about moving? Perhaps you’re already living in the new place? Perhaps that’s why everything seems so strange. You ask them but they say no. They tell you you’ve been living here in this flat for six years! How can they possibly expect you to believe that? This place is so completely strange that you can’t even find the bathroom.  Just occasionally when you look out of your window there’s a patch of garden that you think you know…

It’s later. You don’t know how many days. Your son Neddy has come down from Scotland and has been staying in your spare bed. He helps you find your way around this new place. Although he says it isn’t a new place. He says this is the old place. But the only thing you still recognise when you get up in the morning is the collage of family photos. If you’re going to move anywhere you want this. 

Your children agree but they say they can’t get it off the wall. It’s screwed on and it's too fragile, and their brother called Nick has promised to come and take it down and bring it carefully in his big car. That's all very well but where is he? You don't like leaving your photos. Who is going to look after them if you're not here?

It’s time to go, they say. Boola’s here and her car is full. You’re going to live near her house in Essex. It’ll be an adventure! It's what you said you wanted.

Did I?

Your lassies are in the hall. They hug you and smile and wish you well. You remember that you love them. Has Boola has given them money? She says she hasn’t, just flowers and chocolates and a card. As you drive away she tells you that the reason that they were smiling and hugging you wasn’t because of money but because they want you to be happy in your new place. You keep on asking whether she gave them money. You think she should have given them money, a decent amount. She says she’s sorry. She thought presents would be easier to share. She means well, Boola, but sometimes she’s very stupid.

It’s a very long journey. At the beginning you see a bridge that you recognise and you like the fact that the road signs say London, though Boola tells you that you’re not going quite that far. Then a man begins falling out of the sky. He’s going to hit the car when he finally comes down. 

Neddy’s in the back.  He’s gone to sleep and Boola doesn’t want to wake him. She can’t see the man falling from the sky. She says she has to keep watching the road. That does seem sensible but why is the man still falling straight at you? His falling doesn’t stop. It follows you. If Boola turns a corner or slows down or speeds up the man is still falling. Why?

Boola gets it in the end. She says that what you're seeing is a chip in the car windscreen, not a man falling from the sky. You want to believe her but it does seem strange. This is a very long journey. You’re not clear where you’re going and your brain is tired.

"This is Dunmow. It’s my nearest town. It’ll be your nearest town as well. We're nearly there now."

Where is there? I don’t recognise these places. I don’t know where we are or where we’re going. Or why we’re going there. I don’t like this at all. I’m not excited. I’m frightened.

She drives in through a large gateway. "Here we are," she says. She doesn't sound so sure now.

She stops and they get me out of the car, quickly. A big house. Huge. Steps and pillars. A door slides. 

Big flowers in a shiny vase. Too big. Too bright. Polished furniture and magazines. Not a real place. Not a place to live. 

A lady from an office enters, smiling. “Do you remember me?”she asks. 

What a stupid question. I try to be polite. Want to run. Boola talking. Neddy holding me.

Someone in a white jacket comes close up in my face.  Short hair. Flat chest. Looks like a man. “I’m the nurse," s/he says. "I’ll be taking care of you.”

Suddenly I understand. They've brought me to a hospital! There'll be doctors or ... Scientists?! 

I’m being locked away. And then they’re going to chop me up.

Everyone I ever trusted has betrayed me. 

This is the story of my mother's move to a specialist dementia suite in the few days before Beloved Old Age was published, as I think it may have felt to her. Francis and Bertie, two of her favourite people in the world, were waiting in her room to greet her and we'd hoped to picnic together. I will never forget the pain and dignity with which she told us all -- in dibbledydobbledy speak, because she couldn't quite find the words -- that she had admired and loved us and she couldn't quite bear to believe that we had done this to her. She was certain that there were laws against kidnapping a person and locking them away. She had not given her consent to be chopped up and she wanted to call the police, immediately, and after that she would catch the next train Home.

From my point of view -- and I am the villain of this melodrama -- we finally had no choice in making this move into care if we were to avoid her being sectioned under the mental health act (as poor Margery Allingham was, fifty years ago). These have been some of our worst days but I have to tell you that I am relieved Mum is living nearby and I hope we can put the principles of family caring into practice for her here, as well as we could when she was living in that lovely sheltered flat, fifty miles away in Suffolk. 


CallyPhillips said…
Powerful stuff, Julia. A very moving, and I suspect accurate portrayal of your mums feelings at this time. But you are doing the right thing...the best that can be done while you are all kidnapped and held to ransom by this horrendous disease. Today I got notification that I had passed my dementia studies course with a distinction. My pleasure has been firmly put back into context by this post, but I seriously hope that when or if I have to step up to the plate and put theory into practice I will be able to do half as well as you are doing! Dark days indeed but let's hope there are more moments of joy when your mum is settled in. And a reminder I must read your new allingham! Keep spirits up, this too shall pass.
julia jones said…
Dear Cally - WELL DONE! And I would love to send you the book, I just felt ashamed that I haven't yet read the last one you sent me... (Perhaps you might email and tell me whether you'd really like it, and if you have time) I have often thought of your plays as I have been learning about life on the dementia ward.
Fran B said…
A brave and perceptive piece of writing. It's good that so many authors are trying to get inside the heads of people in various stages of dementia. Of course, we will never know how accurate or inaccurate the portrayals really are but it seems good to try. It helps those of us who love them to have some kind of understanding, whether right or wrong, of what's happening. I'm losing a very dear old friend to dementia and it's painful, sad and leaves me feeling alienated from her. Anything that makes me feel less disconnected from her feels helpful.
Jan Needle said…
Viv and I have both read Beloved Old Age Julia but haven't responded yet, because maybe it seems irrelevant. But to everybody else out there, please read it. God. Jul. your post is amazing. Strength to you, and Francis, and all the family. And to your poor mum.
Dennis Hamley said…
Julia, what a searing and disturbing post. I can speak, now that there's been a srt of resolution, of something I've wanted to say every time you've written on this subject. My brother has for three years been the sole carer of his wife as her dementia has deteriorated to impossible levels. He has not allowed us to drive the thirty miles to help him, even though Kay, as a carer with Oxford Aunts, has direct experience of caring for dementia sufferers. He was afraid of violence because his wife would not tolerate anybody entering the house. He has faced violence from her, threatened and sometimes actual, several times. Before this they had a happy, sunny relationship and the change was a descent into nightmare. Lack of sleep for both because she could not distinguish day from night and got up every two hours to get dressed and make breakfast, gradual forgetting of how to do simple things, including, incredibly dangerously, lighting cigarettes, a habit she took up again and rejected all attempts to make her stop. More other symptoms than I can begin to speak of. My brother was way beyond the end of his tether. The NHS and Social Services in Bucks seem completely non-existent. He received no help whatever: no respite of any sort. Bureaucratic obfuscation at every turn and no help whatever from his local oiverworekedGPs. At last an assessment was made. Sh was beong home care and had, for hr own saftey and his, to be institutonalised. The onus was on him to find a home for her. There was no room in any that he applied to. Except one, actually in the town they live in, Winslow. He had not tried there because it had received an adverse CQC inspection report. It was a last resort - yet he finds it excellent: a lovely house with all patients having their own rooms, excellent care, really good food, a happy atmosphere, people who are familiar to her from the past, upset only when he visits and she demands to come back, because it seems that only then does she remember she's in a different place. It shows how little regard may be paid to these superficial inspections of homes, hospitals and schools by the likes of CQC and the dreadful Ofsted. We were seriously worried about his welfare and so ws everybody else in the little town. Now he can come over to us and we to him and he is a new man. Yet he is racked with guilt and his new freedom is severely qualified. I know how he feels, remembering my confused feelings after my wife died with lymphoma after a terrible last few months. And I know, albeit at second-hand, something of the anguish you and your mother must have felt. To try to empathise with my brother's wife takes you into strange and terrible places which i hope I never have to visit.
julia jones said…
Firstly, thank you Jan (and Viv). I thought I might have betrayed everything that I had written in BOA and believe via Johns Campaign but actually, the principles remain the same and it is better that Mum is nearer me and what I'm trying to do is make her feel that she is being cared for by us as much as by the professionals and I THINK she mainly likes the mix. I THINK she is feeling safer. She is certainly calmer and usually sleeping better. I can only hope ...
Then, thank you Dennis but your account of your brother's situation is truly grim. I am certain that dementia falls much harder on loving spouses than on anyone else. Nothing prepares us for the desperate decisions we have to make for others -- and I fear there may be worse to come when we reach the end of life. A friend was describing the decisions she and her family had to make to withdraw support from her mother and allow a morphine assisted death. They were told it would be soon -- it took 12 agonising days. I suppose all that you can do for your brother is comfort him by the outcome - his wife is happier there, and safer - not just physically but emotionally. My bro is keen for us to begin taking mum back to our houses for lunch etc. I'm deeply uncertain about this as it seems to me that now she is (usually) living with her capacity (though tired and distressed at the end of each day). I honour his good-heartedness but I don't want to burst her bubble. Please send your bro my great sympathy and admiration & perhaps ask him how he woudl feel if it were the other way round. How would he wish his wife to have acted if he was the one with this dreadful illness? I'm glad he has you and Kay. Families matter.
Bill Kirton said…
God, how lucky I've been and am. I've read of the dreadful consequences of dementia, but without your posts, Julia, and Dennis's harrowing tale of his brother's agonies, I couldn't have imagined the profound awfulness of having to manage such situations. If this post had been a fiction it would have been powerful enough, but the fact that it's an account of what's happening to a real person, a close, dear, loved person, is beyond words. All I can do is offer my deepest (but useless) sympathies to you and yours, to Dennis and his brother and, by extension to all those who are trapped in the grotesqueness of watching the long disintegration of someone they know and love.
julia jones said…
Thanks Bill - and your comments, your understanding, your sympathies are NEVER useless
Enid Richemont said…
The sooner this terrible disease is sorted, the better. In the meantime, I'm 100% with Terry Prachett on this, and as he did, but in my very much smaller way, I support research into dementia. What Julia and Dennis are suffering is beyond words - the stuff of nightmares.
Dennis Hamley said…
Thank you all so much for your good wishes to my brother. You are right, Julia. She is happier and safer - and so is he. Your question to him is one I will ask in the fullness of time. Not yet.
Julia, you are so strong and caring. You may not feel this right now, but what have done and are doing for your mother is really wonderful. She cannot tell you what it means to her, but your vision of her inner feelings whilst moving are what she could be feeling all the time if you were not determined to do the best for her in every way you can. You have given up a lot to see this through, and I admire you very much for it. I also hope you come out of the experience whole & sane! Much love from Oregon :-)
Dennis Hamley said…
Julia, how right you are about decisions to be made about loved ones. I remember the day I was told by the consultants that they had given up on medical care for my wife and would now move to palliative only, but they could not do it until I had consulted our children. I rang them and was braced for a visit to the hospital next morning to give our joint consent in person. But I was woken up at 1am by the phone and urged to go to the hospital at once. I was there in half an hour and my daughter arrived ten minutes later (my son was in Germany). My wife died, thankfully peacefully, at 4am. I was thus spared the trauma of actually giving final consent (which felt obscurely like an act of treachery) but it certainly added to my ambiguous feelings afterwards.
Debbie Bennett said…
What a moving post. I'm speechless and anything I say would be shallow and uninformed as I thankfully have no direct knowledge of this dreadful disease. My heart goes out to you.
julia jones said…
Thank you all for your wonderful support - and especially Dennis for sharing these unbelievably difficult moments. Because I'm an eternal optimist I hope that that day with mum was the pits and that next month we will be sunny again. It's just that every day - almost every visit - is different and unpredictable. I'm doing my best to learn on the job and I'm grateful for this monthly opportunity to see where we are now

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