“Does she still recognise you?” That’s what everyone asks. Answer: for the moment, to some extent, yes. My mum does still recognise me. She knows me by sight. But what does that phrase really mean?
Think of the many people you “know by sight”: members of your gym class, a cashier in your local supermarket, fellow commuters on your train, regulars at your favourite coffee shop or bar. You might exchange the odd word, perhaps even know their name and ask after their family, their health, their plans for the weekend.
But meet them out of context – fully-clothed in the street, instead of lycra-clad in the gym, or on the Tube, not at the till – and you may be thrown. You know you “know” them, but are not sure where or how. So you nod and smile, make small talk, or just keep quiet while they speak, in the hope they’ll give you some clue, and maybe it will come back. Maybe it won’t; but through this non-committal pantomime, you will have covered up your mental blank, met social expectations – and the other person need not know you don’t fully remember them.
This is now the level of my relationship with mum. Yes, she responds to my face; I worry that her sight is declining and still value that. I know I am lucky she can still speak and hear; we can engage to some degree. She acts as if she knows me. But all intimacy is gone. An only child in my forties, I am no more significant to her than some tolerably pleasant woman she might have nodded to in a café, when she still went shopping in town.
That’s not to say she doesn’t care about her daughter. Ask her, and she will say she loves her very much. But that daughter, or that “Ming”, is an abstract notion, an amorphous idea of a young girl. Mum can’t equate that with the actual middle-aged woman who sits at her bedside. On the table before her will be recent photographs of me that I’ve labelled with my name, in hope of reinforcing the connection. She will often be fixated with these, remarking on them to me (not always in flattering terms!), and they will be more real and interesting to her than the flesh-and-blood Ming in the room.
Since I realised mum had dementia, I always knew there might come a time when she didn’t know me. But I thought it would be at a stage where she didn’t know or respond to anything much. I had no idea it could co-exist with relative articulacy and sentience. I never imagined the slow and insidious way that “unknowing” could creep up, or the sophistication of mum’s facility to conceal it.
There have been times in recent years when it has been painfully explicit (as I have detailed in my earlier post, I Don't Know Who You Are); but with hindsight, I can see instances much further back, when the underlying clues were there. Mum loved to give presents, for example, and rarely ventured out without lighting upon something for me: purses, make-up bags, trinkets, jewellery. However, these gifts grew more inappropriate and sometimes downright bizarre. I was puzzled when she pressed on me a lurid silver, pink and mauve bangle of a kind I would never wear - more suited to a pre-teen Britney Spears fan than an adult.
At the time, I was rather irritated at both the apparent lapse in taste and waste of money – affronted that, in choosing this, she didn’t seem to know me. Little did I realise that was the literal truth. She was buying that bracelet for the teenage me in her head, not the real woman I had become, or for a notional daughter whose taste she no longer recalled.
There were other more immediately troubling incidents, when she would suddenly say things like “are your parents alive?” or “when are you going back to Hong Kong?” (I’ve never been and live in London), which might be deemed obvious signs that she thought I was someone else; but if I looked askance or remarked on it, she would instantly cover up and the moment would be past. Sometimes I would catch her looking oddly at me, but she would say nothing. Now I think she was wondering who I was.
For all my life, until dementia took hold, mum and I had been close, with no other immediate family since dad died in 1988. It is infinitely sad that not only has our current relationship lost its roots, but I find myself questioning the last decade or more, when those roots, it seems, had already begun to wither unseen underground. How much of our intimacy then was a sham, mum just going through the motions, humouring a vaguely familiar woman whom she “must know” because she happens to be in the house? Could it be that we were living as strangers for pretty much all of that time?
Now that we are entering the last phase of mum’s journey, I have learned that “recognition” is not the same as “knowing”. You might recognise the cashier at your supermarket till, but do you really know her? Not unless she’s a friend. “Knowing” comes from accumulated memory, the incremental sum of facts and thoughts and feelings about another person that go beyond superficial contact. My mum still recognises my face; she sometimes knows my name, sometimes knows I’m her daughter and sometimes knows that she loves me, but rarely all those things at once. I am lucky to have that much.
But I have realised that she no longer knows me in the deeper sense. As she will sometimes say herself, she “knows nothing about me”: how old I am, where I live, what I’ve done for a living, if I’m married or have children. She doesn’t know what clothes or perfume I like, what food l enjoy, what matters most to me – even what kind of person I am.
When I visit her now, she will usually accept my presence without question and speak to me in a way that assumes we are familiar, as if taking up where we left off. So long as I keep the chat to a minimum or on neutral ground, we have the illusion of intimacy; but if ever I stray to something specific about our lives, it’s all too apparent that mum has no idea what I’m talking about. I feel a distance between us – a knock on a door that cannot be answered. “Remind me again, who are you in relation to me?”, she said a couple of weeks ago, as I was leaving after a whole afternoon in her company.
The photographs here are just a tiny fraction of the images of our shared lifetime that I carry in my head. Mum would have no idea of the relationship between the first and the last or any in between; she would not be able to recognise them as herself and me. And I’m afraid none of them is in her head.
How do I know she doesn’t really know me, if she acts as if she does? By her lack of interest in, or concern for, the person who visits. I know she loves her daughter; so if she knew that person was her daughter, she would care.
Lovely blog, Ming.ReplyDelete
My mum died in August, she was diagnosed with Alzheimers six years previously. Our relationship shifted significantly once mum seemed to forget who I was. My sisters and brother seemed to handle this far better than I did, seemingly taking it in their stride, indeed my youngest sister refused to acknowledge the fact that mum wasn't mum any more.
But I felt the woman we all loved had just disappeared, taking with her, her speech and reasoning. Soon (it seemed soon, I'm pretty sure it took years) she was silent, apart from the occasional sing- song noises she made now and then.
But about six months before she died, after years of silence, I visited my sister's house and waited for mum to be brought there for lunch. I opened the door and as she was helped in, she looked at me and said, 'My baby boy'.
It floored all of us. Totally, utterly.
From then on, I tried to talk to her when I visited, hoping that little window would open again and she'd hear me. I've no way of knowing if she did.
The doctors were very kind when they told us she didn't have long left. It gave us time to prepare. But in truth, we'd already lost her to dementia years before.
There are five of us and we took shifts to be with mum in her room at the home. I took the night shift, I'm a writer and can work from anywhere, right? So turned up with my laptop and tried to write an ep' of Casualty with my mum in the bed. Haaa!! Bonkers- I can see that now but at the time, it seemed the best thing to do, carry on as normal. Except, it wasn't normal and the ep was obviously doomed from the word go.
Funny how grief can alter your perceptions, isn't it? I abandoned the ep' and took out my iPhone. I'd downloaded a load of songs I remembered mum used to love when I was a kid: The Carpenters, Gilbert O' Sullivan, Jim Reeves, George Harrison.
The window opened and for a few hours mum was responding to her surroundings, looking at me, making noises to communicate, or maybe she was just making noises, who knows?
I called my sisters (my poor brother couldn't get off work!) and they whizzed to the home to see her- they were amazed at how communicative she was.
And all thanks to Gilbert. Who knew?!
Your photographs look fantastically familiar. We've got similar photos of mum, taken at some points in the 60's and 70's. There's a real warmth to them. Lovely.
Sorry for hijacking your Blog, I came on to say it was great, really touching and it's turned into..I'm not sure what- but hope you don't mind.
On the subject of memory, mine's altered too: since mum died, memories of the woman I didn't recognise any more has been replaced by memories of the lovely woman that brought me up, taught me to dance, loved music and books and writing and once bollocked me for getting a mate to finish with a girl on my behalf when I was a kid.
Hope you and your mum are ok. It's a difficult time and for what it's worth, I'm sending positive vibes (people who know me will be pissing themselves laughing at that- but I mean it).
All the very best.
Thanks very much; appreciated. I too have struggled to write eps of Casualty while all this was going on! (Oh the irony! Do we know each other? If so, PM me elsewhere…) That's one thing I try to impress on others at an earlier stage in the journey - DON'T GO FREELANCE! That idea of being able to work anywhere on a laptop is very seductive, but seriously, in situations like this you need to keep an anchor elsewhere, otherwise dementia will take every waking hour and then some - and before you know it, years have slipped by...ReplyDelete
As I've just been discussing on Twitter, you might expect music to be a trigger with my mum too, and sometimes it does have some positive effect - but not nearly as much as you might imagine or hope, given that she was a professional singer. Indeed sometimes it can provoke anger or resentment, if she's not in the right mood - so hard to know what she might read into things, whether music, pictures, or TV/radio these days. Sadly, paranoia is one of her main symptoms, and anything can be seen as negative or threatening, if she's in the wrong mood.
On the other hand, our best visits in recent months have been those quietly listening to music I know she likes - Vaughan Williams, Mozart, Handel, certain arias and Lieder she used to sing, old-style musicals, such as Rogers & Hammerstein (i.e. melodic, with little disturbing dramatic content!)
TV and even radio (music aside) have become very problematic now, as so much narrative is about murder/violence (albeit whodunnits that would be anodyne to most of us), and news similarly so. Even music on the radio has to be closely vetted, as anything discordant, loud, stressful, dramatic, or even dark in mood can be disturbing. Hence I resort more to familiar CDs where I can control the content.
As you know, it's all trial and error in each individual case and from moment to moment. I know I'm lucky that I too still get those occasional flashes of recognition (or acceptance) from mum; in a way, it's more heartbreaking to know that there remains a germ of our old relationship in there, because I keep hoping to reawaken it and consequently can't ever fully move on to resign myself to the here and now, in which I just have to look forward on my own and focus on salvaging my career.
And yes, while I am away from her, I do remember her as she was - my "real" mum - and believe that memory will prevail in the long term. The disjuncture when I go in to see her, however, is always hard. No matter how much I think I have come to terms with how she is now, it remains hard to believe, every time I see her.
I hope people who know you *won't* be "pissing themselves laughing" that you have a heart (shame on them, if they do!) - that's surely what drama is about?
Thanks again. All the best. (Do get in touch if we are on FB or Twiter.)
Hi there, visiting here from the Help Forum where we are trying to fix your gadget issues on the sidebar, but I got caught up in this first post and I just wanted to say how much I appreciated it.ReplyDelete
I have two grandparents with varying degrees of dementia (my grandfather has already passed). My grandmother is still in the early stages...and at times, I don't know if I really believe it is dementia and not just forgetfulness after 89 years of stuff being crammed in her head.
She is still very much still here and "knows" who we all are....just occasionally confuses her two husbands (both deceased) when we talk, or can't recall details from when she was a girl...which is what makes me think that it is mostly just old age and not necessarily the tough disease you are experiencing.
I recently saw an interesting documentary series on HBO about Alzheimer's and dementia in general and it was very eye opening. Obviously I felt for those in the documentary, one woman thought the lady in the mirror was a friend that was actually through a window and she would have hallucinations. I know that dementia manifests differently for each person so it can be a hard disease to handle.
I really do hope that you get days when your mom does "know" who you are even if they are brief windows. I can't imagine how hard it must be. Lots of good thoughts! ---Mishka
Thanks very much, Mishka. My mum's path has been a long one (up to 20 years, as I've described in earlier posts), so your grandmother may be a long way off the more extreme symptoms, if indeed that is what she is experiencing.ReplyDelete
I know the documentary you mean - have seen links to it on Twitter. The mirror confusion is quite common, which is why many dementia care homes don't have mirrors in residents' rooms. If you still believe yourself to be a young person (in your head), it becomes impossible to understand that the vision of an elderly lady in the mirror is actually you. My mum can no longer recognise herself in photographs, or distinguish between photos of herself, her mother, and me.
Sometimes she does seem to "know" me more than others, but I'm afraid the full understanding of our relationship has now gone forever.
Thanks for reading (and for your help with the gadget; I'll reply again on the forum.)