Want to live a life of danger and star as a detective or spy, gathering cues and working under an alias? Who doesn’t? And all this can be yours…..with dementia.
I’ve been watching the TV series Human Target, which is about a couple ‘bad sociopath’ assassin/spy guys who are now ‘good’ sociopath rescue/help the girl/spy guys. Our hero, named ‘Chance’ not only likes to do dangerous things but has done so many of them that he and his crew have nicknames for them: ‘An Uncle Bob’, ‘Aunt Linda’, ‘Reverse Lifeboat’, ‘Thing with the house: the one with the flood not the ducks’. If you have someone who wants you dead and you don’t know who or why, then Chance and his crew are for you. Plus, he takes some very odd things as payment, including Whiskey, the ring of a pope and sometimes just odd lumps of gold. This makes the ‘rational’ ex-cop who is like the manager, a little frustrated, as he seems to want things that pay bills. Oh, what an old stick in the mud.
Human Target used the largest orchestra ever in TV history, and did original scoring by the same composer as Battlestar Galactica. It gives each scene a unique feel (It is like John Williams scoring), click here for the 1 minute, ‘Tango’ scene as he is undercover in the Russian Embassy. When you have no where to go, take ‘Chance’: he saves the girl, or more likely, walked out on her while she crushed on him so she punches him. The orchestral aspect and the use of things like old propeller planes which gives it an Indian Jones, man of mystery and action feel. That ‘timeless’ aspect is just what they want to take away, and though the Music is being released in a 2 disc digital and 3 disc set, having won an emmy (Orchestra music is WAY cheaper than doing ‘needle drops’ – the slang for ‘pop songs’). Fox hired someone to drop the music director and writer, eliminate the scores and give the show more ‘location’, and take away the action (each action scene has to be less than 90 seconds, and it is all action and adventure, with humor – and 12 hours of action stunts, all done by the actors makes about 70 seconds of screen time, using up to 100 different camera shooting angles). They want each episode to be more about the ‘emotion’ for each character: This means lots more angsty ex’s until eventually it is Grey’s Anatomy, that hospital too busy having hissy fits and sex to admit any patients, this will be an adventure show where everyone is too focused whether person X likes person Y to actually save anyone.
It is a great show which has all top notch stars, Chance is the cop from the hit TV series Eureka, while current movie and TV stars make up the side characters of clients, drug lords or old romantic flames. And it is show that keeps you guessing, as watching while Chance attempt to make a HALO (coming in from High Altitude on a parachute and pulling it at the last moment to avoid detection) on a blind camera spot of two feet at the top of a skyscraper is the ‘easy’ part of the operation. It reminds me of Middle Man, though without the strange alliterative swearing (“Great Louise Alcott!”, “Jumping Grapes of Wrath!”), the Furry odes, the Batman Jokes, and the cultural and literary references (or the vampire trout, or Vlad the Impaler’s OTHER hobby….puppetry). But it has the same, “Can Do!” attitude of the hero without the overt politeness of Due South, which makes you believe in the Good Guys again. And in a TV land where cop shows regularly torture people, and there are more serial killers than drinks in a vending machine, having a show where people and buildings get SAVED is rather unique. Catch this collection of 12 adventure comedy with our three men of mystery (“Oh, I already know too much about your evil ways, I know about the fire at the orphanage, I KNOW about that nun in montreal, so no!”) before it just becomes another ‘something to watch’ show.
Chance of course uses many aliases, and covers and the running joke is ‘Are you a (fill in profession here from Doctor, Lawyer, Engineer, Computer Tech, Explosives expert, Archeologist)’ because all of his covers, taken on the fly happen to be spot on. And his answer is always “NO, I not a (strange little intonation) Doctor” Which begs the question, ‘What are you?”
But how about YOU? Well, your assignment is: Try to live an independent life. Your Alias is: your name. Like this highly trained spy you will need to glean the small details from your surroundings in order to: know the names of people who are supposed to be friends and relatives, explain why you weren’t at events or did not pick up items, and come up with plausible reasons on why you don’t seem to remember important details. The trick is, don’t give it away in your face. Like action spies from Michael in Burn Notice to Chance in Human Target, a lot of people with dementia learn that the person who is with you can give you valuable clues if you don’t give away that you haven’t the slightest idea what they are talking about.
It is a stressful way to live a life, always trying to stay one step ahead of this person you are pretending to be: which is you. But the alternative is the bias which comes with ‘no memory’ = no use and thus be treated like a non-person. And that is not where you want to be, because once there, it is hard to have anything you say taken seriously. While you might not know the city, the street, how to get home, who the president is, and what the day, month, year is, or be able to do basic math, that doesn’t mean you don’t have skills. Or that you can’t engage people in conversation, even help them solve personal problems. The only difficulty is…..once they are gone, and you are alone, how do you find your way home again?
Linda has been going to the Dementia Society meetings which have given some very useful information, things that help me identify actions and behaviors that frustrate me and explain why they are happening. But knowing what is happening also helps me come up with ideas on how to solve them, and as I have seen first hand, just because someone I give a pool cue to can’t SAY where they were born, it doesn’t stop the muscle memory they have from whooping my ass in playing pool. There are good, functioning parts of the brain, muscle memory, language groupings, and the trick is how to get there.
Problem: Dementia from the variety of causes from Alzhimers to vascular (strokes, TIA’s), autoimmune, all tend to break down the control over the emotion. So there is not only Liability (overly strong emotional feelings which may not be appropriate) but reactions and looping. Reaction is when you can’t control how you respond, that ability to step back mentally and go, ‘Hey, this isn’t that important’. Combine this with the anxiety and question asking (asking the same question over and over because of anxiety, or just having feelings of general anxiety – and why not, when the one thing everyone assumes EVERYONE has control over: the brain and memory; you don’t) and you get ‘looping’.
Looping is like being in a long term relationship which is in a long term bad place, and one event brings up the memories of all the negative times that were like it. The trick to get out of it in a relationship is to stay in the NOW, one event, one hour, one time (and not ignore the now by looking at ‘what this will mean’ or ‘you will do it again’ – that’s the FUTURE, not NOW). The problem is that with dementia, memory, for me, because I have language and visual on both sides of my brain, are like bubbles, or jars which often can no longer be directly accessed. Piaget called this Schema, where there is a bubble or jar of images, smells, language, feeling all in a subset of experience. So the best way to learn or add things is to connect them to an existing Schema. With Dementia, you lose access to more and more Schema, and in the schema that are lost are sometimes what I call ‘bubbles’ which are strong memories and experiences, like ‘triggers’ for abuse victims. With Reactions, you are suddenly triggered into one bubble experience, then that triggers a similar bubble experience and so on. These bubbles hold you down, overwhelm you, and causes ‘looping’. And without someone to help you out, it can go on over and over again (literally! I have done the exact same 60 minute rant three times in a row).
For example, I am anxious about becoming homeless. That means, I ask Linda probably one to five times a day if we have ‘enough’ for food, pills, rent. If I am not reassured, then I ‘react’, which means my stress goes up and instead of finding out the whole picture, I can’t because I am literally running on emotion. Linda may have just come from dealing with problems involving medications costs, or she may be worried about how much weaker I am. And that distraction makes it so instead of saying ‘Yes, everything is fine”, she says, “I was just thinking about putting in papers for disability housing.”
What I hear EMOTIONALLY is ‘NO, there is no money for rent” and this with what she said links to “I am going to leave you” which links to “You are going to be put in an institution.” And so I get highly emotional, worry about being safe, and that brings up images/experiences of times when we have had no money. Then I have the images and experiences of how and when VIHA have pushed to have me in an institution and then I am fretting, despaired, and/or crying. How can you stop it from starting? That is when Linda stops and takes a breath or two and then decides to ‘act’. But if she is tired, or frustrated she also might emotionally ‘react’ (most people 'react' every day: yelling at a car that cuts you off is 'reacting' - it can't hear you, honest!). But when Linda 'reacts', then I 'react' and it gets worse. Linda has the ability to stop, to look at me and see the disease, but she sees the same face as her partner of years, and so how not to feel this is me lashing out? But it isn't, it is the disease and I am on a roller coaster which has no brakes. And I need her to see that. This is why some care givers can do well with people with dementia and others don't: the ones that don't take the actions/statements personally. The trick is to see PAST, to see the loud voice, the frustration and fear displaying like anger as part of this disease, just as much as getting confused or disoriented is part of the disease. For me, often it isn't anger, and it isn't personal it is desperation, a cry that says, "I'm scared, I'm helpless and terrified, please, understand this and help me?"
The big problem of 'reacting' for loved ones of those with Dementia is that the ‘loop’ of no money for rent/her leaving me/institution can take 30-40 minutes and if Linda reacts at the end, that just starts the whole loop over again. This is part of the disease. I might have already done this loop just three days ago, but I don’t remember that, and I can’t stop it either once it starts.
For those who give care and are close to those who have dementia, this verbal care is exhausting and they need support. Because otherwise, since the disease has broken down the memory/emotional barriers, it makes it hard to remember that it is the DISEASE creating this situation but it is the PERSON who needs reassurance.And if the PERSON isn’t reassured, then this whole negative experience gets added to the ‘loop’ or ‘jar’ or ‘bubble’ and the next time the loop is stronger, or longer because of it (and for a while, I will ask 5 times a day about the rent instead of 1 or 2 because the emotional experience increases the anxiety and related behavoirs, so for everyone's energy, both the person with the disease and the caregiver, keeping calm and reassuring is best).
But some plus things: Yes, I get emotional easily, but with the loss of memory I have and the barrier to emotion down, I can watch films that were favorites, and not know the story, and have an extremely vivid and emotional experience. The same with books, when the emotion is on (sometimes when fatigued it seems like there is no emotion and all is like breathing grey ash in a world of swirling grey ash) a good book becomes a riveting and fantastic book. But, due the same breakdown of emotion, unless Linda comes and gets me I will read the book all the night through, and the next one, and the next one….
So, how to be a spy in your own life? You have a brain disease and damage. Yeah, sucks but that is what it is. So you need to remember someone. For ME I know I won’t remember a ‘name’ like Sandra or Wendy but I might remember a visual image (Dementia is different for everyone, find out what works for you whether a song, a rhyme, an image or something else). I let the visual image which is strongest come to me and then turn it into a nickname. So someone with the name Wendy might remind me of ‘Windy’ if she talks a lot, but I need a noun, and think of windmill turbines and end up calling her ‘Turbine Girl’. Linda will know who that is, and if she is a worker I trust, I will tell her that is how I know her. Now Linda can say, “Turbine is coming tonight” and I know sorta who that is and am not worried. Then I can shorten that to ‘T.” and call out for ‘Tee’ or “Hey Tee, how are you?” – Which is a lot better than, “Who are you and are you a burglar?” This is how I have most people named: Dr., Charlie (that's one of Linda's), Errol, RB, Earth Girl, Desert and others.
Talking is hard because when people ask questions, first, the brain takes a while to try and find the right information. Dementia isn’t like a filing room where all the folders have been dumped on the floor but more like a bomb went off in your filing room and now there are folders randomly all over the building of your mind. And if you DO find the file, then you have to find the language section which has the words ('knowing' something but unable to say it is a common frustration). So instead of long pauses with nonsense words which make people give up and stop talking to me, I start the talking. I need to find something that I DO know, a Schema, which has the words I need already in it, and I talk about that (and as long as I talk about that, I can talk without stuttering gaps, like when someone with Dementia suddenly talks about the taste of a Candy they used to like as a child - fewer to no speech problems because that bubble or memory schema has the language in it). So when a worker comes over I talk about the floating of the Chinese currency, or the connection between Victorian fiction and mysteries and social class or travelling by rail in Europe. The memory this is coming from might be 10 years old but as long as I am in that ‘bubble’ containing the language and visual images, I am lucid and clear.
The person I am with gives me the information of what I am able to talk about: as I look them over I ask questions like, “Nice ink! (tattoo) What does it mean?”, ‘That’s a nice necklace, where did you get that?’ or ‘How did you get that tan?’ or ‘Where have you lived?’ until something goes ‘PING’ and I can suddenly talk about whatever Schema bubble or File folder has shown up. So instead of seeing me as a poor confused woman who doesn’t know the season, time of day, or current events, I am ‘intelligent’ and ‘interesting’. It is easier to stay 'interesting' even after they see you having some ‘bad days’ when you forget stuff, than the impossibility of them seeing you as your dementia, where dementia as an inevitability and any signs of intelligence are just temporary. Basically: control the conversation and control the impression they have of you.
It isn’t easy, and right now, brain boards and notes, aren’t cutting it anymore. A lot of the time I simply have to trust “Elizabeth” – the “Elizabeth” who did stuff before I showed up today, and I have to trust that I did the logical things, the things needed to survive. So I often ask myself, “What would Elizabeth do?” And the answer might be, “She'd probably write up notes in a document on the computer – find the last documents modified and look at them” Or ‘Check her internet history and see what she did.” (also a good way of finding out if I have ordered something and avoiding ordering it multiple times). It is also why I have hotmail and use Amazon as both are stored online and can be searched, and Amazon actually WARNS you if you have bought the item before. This is surviving, while having experiences unique to you alone, while outside 'society' (which assumes memories, and connections you don't have anymore) and without the companionship of your own history, separated from other minds, and part of your own.
Dementia is a symptom of a disease and it sucks. And there is a LOT that I can’t control about that. But I can read people’s faces, look at clothes, fingers for rings, nail polish, calluses, necklaces, how familiar they are with the room, if they look around a lot, and make some guesses about how often they have been here, and how well they know me, and give me a few ideas of questions to ask. And if asking about their tan ends up with, “yeah I went hiking again this weekend,” the ‘again’ tells me that she and I have talked about this before. So I adjust, I adapt, and I have conversations friend to friend. Sure, I won’t remember them in a few days, but if I don’t do this, then everyone touches me with kid gloves and I am always the outsider, the stranger, the person who never has anything to offer. Then I would be utterly alone in a mind that sputters with random images and words always escaping me.
I am a spy, and my cover is Elizabeth McClung
45 minutes ago