Even on Dad's best days we are daily reminded of how quickly his memory fades into the mists.
Every morning before we go to work, we turn TV onto his favourite channel and hide the remote (which he tends to mistake for the phone).
Every evening, we come home to find the remote shoved down the side of Dad's armchair (he's searched the house for it which is kind of a good thing, although frustrating), the TV showing nothing but static and Dad accusing the set of being broken.
When this first started happening, I would ask: "What have you done to the TV?"
"Nothing," he would say defensively, like a naughty child.
"You've been playing with the remote, haven't you?" I would demand and again, he would deny everything. "I haven't touched the bloody thing," he would say, getting more and more distressed.
On other days he would stay calmer but tell me, confidentially, "I think John broke it."
Regardless of his response, the result was the same; although we would fix the TV, Dad would be upset and angry, sometimes refusing to watch it at all.
We've learned, needless to say, that our approach was very wrong. Now we just sigh inwardly and set the TV up for him, good humouredly agreeing the damn set must have broken.
Sometimes Dad asks us to show him how we have 'fixed' the set and we show him. "Ah! Fascinating!" he will say and we'll say "Now you'll know for next time," although we know that next time, i.e. tomorrow, we will replay the whole thing again.
Anyone is looking after a loved one with dementia should read Contented Dementia by British psychiatrist Oliver James.
The book is brilliant and has taught us how to get through Dad's dementia without going crazy and, more importantly, without distressing him. We often fail - well, I often fail (John is a saint). But I would have failed a lot more without Oliver's book.
Oliver, who is an old friend of mine, has very kindly agreed that I can use extracts from his book without a fee; but as we had that discussion a while ago, in case he's forgotten I've included a link (above) and hope some of you will buy the book so I can tell his agent I'm a good advertisement for it. Or something.
Anyway ... if you're reading this, you are probably at some stage of dementia grief; that is, grieving for the person you used to know while caring for their shadow. It is so hard to look after someone whose very being is dying before you, but James' book reminds us that the person we know, the person we have always loved, is still there, if hidden under layers of a particularly cruel camouflage.
As you will know if you’re caring for someone with dementia, the first sign – at least the first sign that we non-medically trained people see – is the absence of a short-term memory. But
James makes the point that the dementia sufferer hasn’t lost their memory – it is still there, but hidden. Understanding this, and how to unlock that memory, is the key to keeping them happy and you sane.
His book is based on a method designed by his mother-in-law, Penny Garner, who formulated it after caring for her own mother, a dementia sufferer.
Garner explains memory and memory loss this way: the memory is like a photograph album, a place where we store each new experience - whether that's as small as drinking a glass of wine or as momentous as going sky diving. The photographs represent individual memories; the latest are the most recent, the photos near the beginning of the album are the oldest.
We glance constantly at the latest photographs as we seek to make sense of what we are doing, where we are and who we are with. Sometimes we leaf back through recent pages, to seek further information – ‘memories.’ More rarely, we look back at the photographs at the start of the album.
Using our album is fundamental; and it is a critical component of our identity.
So: when a memory is stored normally in the album, there are the facts of the picture, and the emotions associated with them – fatigue, excitement, boredom. We remember what we were doing, and how we felt at the time. Garner uses a traffic light system to differentiate those feelings: those that are acceptable are green, while those that are totally unacceptable are red. Confusion in the middle is amber.
When dementia begins, a single, striking change happens in what gets stored in the album; the factual content is not registered, only the feelings. For instance, if I had dementia I wouldn’t store the fact that I’ve written this blog about memory but would be left feeling satisfied that I’ve described something useful – although I would be unclear as to what it was.
Garner describes the dementia induced, feelings-only but fact free photographs as blanks. As those blanks start to increase, the person finds more and more blank pages in their memory album. It’s not the case that the new information has been forgotten, temporarily or otherwise: it has not entered the album in the first place.
She gives a telling example of an elderly couple, Arthur and Dolly. Dolly is beginning to go down the dementia road but Arthur hasn’t yet recognised this. So, chatting at the breakfast table, Arthur asks Dolly if she will post a letter for him. She agrees, of course, and tucks the letter in her bag with the best of intentions and is happy that she is doing something for him. But the conversation enters her album as a feelings-only blank. For Dolly, once the exchange had finished, factually it is as if it’s never taken place. She just feels happy that she is doing something positive.
At supper, Arthur asks Dolly if she had posted the letter; Dolly checks her album, but there’s nothing in there about a discussion about a letter. So, she says there was no letter to post. Arthur insists he gave her the letter and as they argue back and forth, he insists she checks her handbag – because checking his album, he can see the relevant photographs quite clearly. Furious now, Dolly opens the bag …. and, of course, sees the letter.
Dolly is now filled with panic. She searches again for the information that she now knows she ought to find, but it just isn’t there. There is no process of ‘remembering’ the breakfast conversation because she can’t retrieve information that wasn’t stored in the first place. She has been confronted with clear evidence of a blank she knew nothing about. As she contemplates the new and strange situation, an unbearable panic develops.
Using her traffic light system, Garner denotes this state of panic and distress as a ‘red’. In someone who didn’t have dementia, this heightened state of distress is usually restricted to highly traumatic, relatively rare events, such as hearing of the sudden death of a close relative. So, this red trauma has now been stored in Dolly’s album, severely knocking her confidence and sending her into a state of panic.
Think of it for you. Something has happened of which you have no memory, but you know it’s important. It’s worse than waking up after too many drinks wondering if you have done something embarrassing. You are sober, awake, but your memory is blank. How terrifying is that?
This is what dementia is and it’s so easy to see how it causes major unhappiness for sufferers and tremendous turbulence in relationships with family and friends. Unless those family and friends know how to deal with this new and frightening situation, as the dementia progresses, there will be a growing number of pages that not only contain reds but are increasingly blank. “To be confronted by a series of red blanks is a nightmare that no person without dementia can appreciate – a series of photographs containing wholly unacceptable feelings and entirely devoid of facts to explain where such feelings have come from. The experience of uncovering a red blank is particularly horrendous and specific to dementia. Uncovering a red blank provides another red blank and yet another, and the retained feelings of knowing that you are panicked out of your mind and yet have no knowledge why, is more hideous, by far, than knowing the facts.”
The album analogy helps explain why dementia is so uniquely ghastly. Sufferers won’t know how they traveled to where they are now, whether they are standing or sitting, unable to access information that can tell them what they did just minutes before. This can induce a disastrous sense of loss of control. Garner describes this situation as a ‘negative ribboning’ One red blank gives rise to another, then another, then another, leading to a vortex of inescapable panic.
Small wonder that so many people eventually decide to close their album altogether to escape the reds. But with the album closed, their ability to establish contact with the rest of the world is lost and they enter the near vegetative state that we associate with complete dementia.
But a lot happens between that first red blank and the vegetative state and Garner’s method helps us to avoid getting to that state. So as a first step let’s go back to Dolly and Arthur: if Arthur had understood what Dolly was going through, the argument would never have happened. When he asked Dolly if she’d posted the letter and she had replied: “What letter?” he would have replied: “Silly me! My mistake.”
Dolly would have sympathasised about being absent minded and they would have ended their evening happily.
She hasn’t been reminded of the blank in her photograph album; the awful red blank would never arrive. Arthur stops asking Dolly challenging questions about today or the recent past and although the blanking builds up, Dolly can go back to the greens of older, happier photographs.
Easy? No. But we can all do it... with help
This is what we learned with the TV remote. Dad looks at the television, picks up the remote and jabs at every button on it, trying to do something that he can’t really remember. (Sometimes he uses the phone with the same intent, pointing it at the TV.)
Reminded that he has done something to the TV he searches back in his photograph album, can’t see anything, so registers a red blank. Panic and distress ensues. But if we shrug and say sympathetically: ‘Bloody TV’, and then we show him how to fix it, he’s perfectly happy because we have given him back control for the next time... and the evening is spent in contentment. No red blanks, no distress.
But it’s bloody hard, isn’t it?