Magical(ish) Dementia

[Margaret Note Spelling]

So I have a magically-caused mental injury that I'm intending to affect my character a lot like dementia--if not in every detail, then at least in many of the same ways, and certainly in the resulting emotional pain for all concerned. The thing is, my total experience with any form of dementia is (thankfully) limited to a couple of TV shows and Wikipedia, plus a personal conviction that it ranks among the saddest and most horrifying things that can happen to a person.

I'm aware it's a very real, and often very sensitive, topic to write into a story. What are the main things I should probably keep in mind as I go forward with this character?

 

[Kerrybuchanan]

*Cracks knuckles*

My dad, who has moderate to severe dementia, lives with me. Several other close family and friends have died from it. I'm not a world expert, but I'd be happy to answer any questions and/or give it a sensitivity read if that would help.

Initially, remember that there are over a hundred different forms of dementia, all with different presentation, and within each condition, there is variety. Also, most sufferers have more than one type at the same time. This is a very complex disease.

Edit: I'm also writing a character with dementia in one of my current novels, but this is crime not spec. fic.

 

[Montero]

Regarding my late father - variability. He was not the same every day. I rather thought that he was unhappy on the days he was most aware - he'd start asking about his mother for example and then saying "I suppose she's dead". On days he was least aware - still very verbal and energetic - he'd make up a story to suit himself and the old people's home became a gentleman's club and he'd grandly give the staff time off. It was a specialist place for "elderly mentally infirm" and there was a wide variety of behaviours. He was unusual in how verbal he was and how able to still be able to coherently tell stories from his childhood, teens and twenties. Quite a few of the people there had lost the ability to speak, and pootled around, burbling like toddlers. The staff said that when they got like that they could live a long time as they were happy and stress free. Equally I saw one person sitting on a chair with their head in their hands, rocking back and forward and making moaning noises - for ages. Another one was trying to go through a locked door and stood there pressing the handle down, then thumping the door with their fist, then pressing the handle down, then thumping etc, etc
Father didn't know me as who I was, but he did know we were related and I was friendly and he was always pleased to have a visitor. If he'd been scared of me or hostile, that would have been horrible but he was welcoming, we'd chat, we'd have tea and biscuits, maybe go out into the garden, and then I'd go home.

 

[The Judge]

It's hateful. Hateful. For the people left behind, certainly, and for the sufferer him/herself at the beginning, at least.

I imagine that, like grief, there are general aspects that most people experience, but specifics differ from person to person, for as Kerry says there are different kinds of dementia and people are affected in different ways. But I can tell you how it was for my father -- at least from the outside looking in.

It started slowly, with general forgetfulness. He had a routine of making coleslaw for me on days when I visited, twice a week, always the same days, and he started making it on the wrong day. He put stuff in a cupboard that should have been in the fridge and vice versa. He would cover up mistakes, or pass them off with a laugh as if he'd made a joke eg when the doctor asked who the PM was then (a standard test question), it was "That idiot!" -- ie he knew he didn't know the name, he knew he should have known and it was important, so he gave an answer which appeared to hide his lack of knowledge. He'd repeat himself -- stories or questions or something he'd read. He lost interest in reading and doing crossword puzzles, I suspect because he couldn't recall the plot or words, but he was again covering up his lack of ability by pretending he no longer wanted to do these things -- lying to himself because the truth was too painful. My sister found him in tears once (he was of the old men-don't-cry school) because he knew his mind was escaping him and there was nothing he could do about it.

He then started to forgot things from the past -- at one point he spoke of not seeing his parents recently, and when I pointed out they'd died over 30 years before, he said "Why didn't someone tell me?" We wrote out a kind of statement of what was happening to him and where my mum was (also dead) thinking it would help him and save the continual questions, but I now know was actually the completely wrong thing to do as it distressed him. Questions such as "Where's Mum?" should be answered with a lie eg "She's just popped out." because he'd shortly forget the actual answer but be assured she was around. Actually, that's important. As I understand it dementia sufferers forget words and incidents, but remember emotion. They won't recall the lie, they will recall the comfort of it, or conversely the discomfort of the truth.

As it got worse, he began wandering, and didn't know where he was or where home was. He became uncooperative eg in dressing, and aggressive at times. He'd forgot to go to the toilet and soil himself or go in the living room, or if he did use the loo he'd forget to wipe himself.

When he was in the nursing home, things were easier to an extent as he could accept "orders" from the carers that he wouldn't from his daughters -- he often (?always?) thought he was back in barracks or on ship as a marine and he'd point out a carer and say she was the sergeant. But he knew who I was and who my husband was. It was as if he held two different images of himself in his brain at the same time; one as a very young man, one as a middle aged man and a father and he could see no disconnnect between the two.

You know everyone has a literal blind spot? If something is there in your blind spot you simply can't see it. But there's not a kind of black hole in your vision where the blind spot is -- you can see everything in front of you, quite normally, or so you think. That's how, to me, it seemed with my father and dementia. There were bits missing, but his brain refused to accept the evidence and so constructed a simulacrum of life, filling the missing bits with stuff that had once been there or should have been there so when he "looked" at his life it made sense to him.

My mother-in-law's condition differed, but there it's only the end I can talk about as we weren't so involved in her care, but for the last years of her life in the care home she didn't know who we were or where she was and she would repeat phrases over and over eg "That dreadful woman" and "Help me" but you couldn't get beyond that, and they'd be repeated four or five times a minute, every minute of every hour she was awake and not actually eating.

Hateful.

 

[Margaret Note Spelling]

@The Judge, @Montero, thanks so much. I realize how hard it can be to discuss this kind of thing, and I really appreciate your willingness to share! I'm thankful I haven't yet experienced what you have, and pray that I never do--except in the medium of fictional story-weaving.

@Kerrybuchanan, that would be wonderful, thank you! It's for the anthology story, so I expect you'll be reading it in the editing process anyway. And, if I'm reading the recent crit group sortings right, @The Judge, you will be, too. I'm reassured beyond words--I know you guys will be able to catch any errors and make any recommendations necessary! Right now, I'm looking less for specific answers to questions, and more just for the things that have really stood out to people about their experiences with dementia. In the first draft, I'd had my character reacting to her mental injury in a couple of similar ways already, but I never made the connection to dementia until this morning, while I was trying to make her emotion more real. Thanks to you guys, I think I'm starting to get a better idea of what it would look like now.

Hateful sounds like exactly the right word.

 

[nixie]

My mum has vascular dementia her long term memory is fine and she sill knows who everyone is. Short term memory is terrible, same conversation multiple times. If she doesn't like something it isn't happening.

 

[Joshua Jones]

My wife's grandmother was in our care for the last 2-3 years of her battle with Alzheimer's. I don't have much to add, as our experience was very similar to @The Judge's experience. When she came to our care, she was already in the phase where she felt she needed to be going somewhere, but couldn't remember where. We also had to keep the kitchen inaccessible so that she wouldn't eat all the food or put something in the oven and forget it. What really struck me was how much it was like raising toddlers, which we also had at the time. Of course, I wouldn't say it that way to my wife or mother-in-law... but the simultaneous inability for self care coupled with insistence on self reliance is a really good parallel.

 

[Temperance]

Friends and family...they will never know what to expect.
They will see someone they love get slowly stipped away.
Some days will be fine, the patiant will recognise their grandchildren, others days...nothing, it's just strangers.
And it spirals down, the good days will be when they recognise their children.
Then they will know their husband.
Then know they are married, but not recognise the old guy in the room, and the next day back to asking where the children are.
The might get violent towards nurses, it's back to being 16 before the family left Germany and these people in uniform are trying to restain them.
Next day, screaming for their husband.

It sounds terrible, but sometimes I'm glad my parents died when I was in my 20s, it's better than watching and waiting as the family of friends succomb to old age.

 

[Montero]

@Judge - yes, making up story to fill in the gaps was exactly what father did. The doctor assessed him as not knowing where he was or when he was, but he was perfectly capable of talking and sounding sensible and joined up. Sometimes he could sound joined up to anyone, other times only to strangers. He actually remained very much himself in the way he reacted. His character was still there, just not the short term memory.

On the flip side, my grandma lived into her nineties - no dementia at all - just thought a little slower and you had to wait for her to process things. I could chat to her on the phone regularly and she'd remember what I'd said three months previously and ask how the redecorating had gone, or whether the bush I'd planted was flowering yet and how was the raspberry crop and were the tomatoes doing better than last year and to remember to water them little and often or they'd split.

 

[The Judge]

The doctor assessed him as not knowing where he was or when he was, but he was perfectly capable of talking and sounding sensible and joined up. Sometimes he could sound joined up to anyone, other times only to strangers.

I nearly included an anecdote on exactly that point. My sister's new boyfriend met Dad and wouldn't believe he had dementia, as he sounded fine, chatting away -- because Dad was forever covering himself, and avoiding things he didn't know, and he was still able to remember the past. But as she pointed out, if the boyfriend came back the next day, they would have the same conversation as Dad wouldn't know he'd met the boyfriend before.

 

[Astro Pen]

My mother has it and I have nothing to add to The Judges comprehensive post.
Fortunately my niece is a doctor specialising in dementia and Alzheimers.

But we all suffer indirectly from that loss, sometimes in unexpected ways. There is the reflected trauma of not having anyone who remembers my early childhood now except myself. It is a lonely place to be. I may document it perhaps but mine is the only living memory of it. A few monochromes of a small boy standing by a tree. A tree that, when I went back, was also cut down, unable to whisper it's memory in the wind .

 

[Margaret Note Spelling]

Thanks, everybody! (I'm hesitant to "like" on this thread because the topic is so dark, but rest assured, you're all very much appreciated.)

 

[Montero]

Yeah, I liked Judge's post because of the resonance - but that was a "thank you for saying that" like, rather than a like "like".

 

[Montero]

Would just add - exhaustion and weariness. Weariness is way beyond exhaustion - you can just run out of emotional response to the situation and keep plodding. It is the same horrible situation day after day and you just plod on, dealing with it, and run out of the sharpness of being upset and can stand and watch someone else being really upset by it all because it is new to them and just have no real response. You've got nothing left in you to help them, or respond to them and say "yes it's horrible" because it's been horrible for so long. If you're unlucky you might have one of the newly upset friends or relatives screaming at you "don't you care?" Yes, I care, of course I care, I've been here picking up the pieces, again and again, but expect me to emote about it? Nope, that ship sailed last year.

 

[Kerrybuchanan]

Also, dementia is exhausting for the sufferer. My father is constantly drained, and if something extra stresses or tires him, his dementia takes a steep dive. I can always tell if he has an infection, because his dementia symptoms deteriorate significantly. I'm guessing that his poor, diseased brain is having to work extra hard to do the simplest tasks for him, so any extra burden tips him over the edge.

As far as 'filling in the gaps' is concerned, I think that the more intelligent the person is (and my father is extremely intelligent), the better they become at inventing a narrative to explain the gaps. My father hid his increasing deafness during sixty years of a high-powered professional career by filling in the gaps of a conversation he missed if someone looked away as they spoke (he lip-reads), or if there was any background noise, so filling in gaps of memory is the natural thing for him to do.

Sadly, that often leads to problems. His memory of my mum's death is that she broke her back and died from her injuries. She did break her back, but had recovered and lived well for 8 months before dying of a strangulating hernia (post-op). He also believes that the special music player I bought him at enormous cost (designed for dementia sufferers) was actually something the builders left behind and that he stole it from them. This is hilarious, because we haven't had any builders in, and neither had he and Mum, not in the last thirty+ years, and he keeps this secret from me because he knows I'd be cross with him for stealing. Luckily, he told my mother-in-law this in confidence when she complimented him on it. And isn't it lucky that the builders loved exactly the same operas, and musical theatre, and religious ballads that he enjoys so much?

The good things: He used to have a terrible temper and a short fuse. He was very quick with his fists, having been one of seven brothers in a single parent family growing up in the war years in poverty; these days, he has no temper at all, and is totally placid and understanding. Some dementia suffers head in the opposite direction. A friend's mother, who was a sweet-natured and strait-laced old dear before the dementia now swears like a trooper and lashes out violently.

Dad keeps a diary. He records, in his shaky hand, everything he sees throughout the day. During the lockdown, he entered the number of cars in the yard several times a day every day, despite the fact that number never changed (we have five adults living here, and three cars between us).

He sometimes notes down things he's hallucinated, like a conversation he had with a chap in the fields in front of the house. The man told him they were his fields and he was grazing cattle in them, then sheep, then he might try growing wheat. That's our field he's talking about, and no one can't get in it as the gates are all chained and padlocked (largely to keep Dad from wandering off, which he tries to do often). We do have a ghost here, so perhaps he's been chatting to him!

For Dad, my mum is sometimes still alive. She talks to him and holds his hand in bed at night. He knows she's dead, but I think it's a bit like the radio. He tries to keep her secret because he thinks it will upset me, but he tells Fraser and my mother-in-law about the things she tells him.

The hallucinations (or alternative narratives) can be a problem on occasion. Not only because sometimes he's convinced that one of us has done something bad to him. Like stealing his garden furniture (the furniture he's sitting on at the time), or transferring all his lifesavings to my son's bank account (I wouldn't trust Patrick with a tenner for the messages, never mind someone else's money!), but because they can be more real to him than reality. I've come in to find him sweating and crying because he was back in Malaya, in the middle of a river ambush where his best friend took a bullet meant for him and bled out in the muddy water. This is more than a memory; it's real to him. He feels the heat, hears the noise, smells the blood. Those times are especially hard on him, and, by extension, on the rest of us. We all love him.

 

[The Judge]

I don't know whether to "like" that post for its honesty and integrity, or give it a when what it really needs a

 

[Overread]

I think there's another aspect that I've picked up on having lost two grandparents and an aunt to it. One way of thinking is that they die twice. Once as a person[mind] and once as a body.

Depending on the situation the person dying might be fast process or very drawn out. Even in cases where it develops gradually it can seem to suddenly appear from nowhere and get worse because the early effects are hidden. Both by the person suffering, but also by those around them perhaps not picking up subtle hints because you're not expecting it. We all make little mistakes, get a bit slower, forget things etc.... So its very easy to gloss over them.
The key aspect is that the person who you once knew can be gone and in their place is a stranger. They look the same, they have some memories the same, but they don't act or treat you the same. They don't remember you or themselves, they behave "wrong" etc....

The second death is the death of body when they are finally at rest. There can be a degree of both joy and guilt attached to this along with grief. Because in a way you've slow-mourned their passing as a person for a long time. The joy comes from knowing that the pain, fear, anger and suffering that dementia gave them is finally over; the guilt is because we relate to death poorly as something we feel we should be grief stricken over and not something to celebrate (cultures vary on this of course so this aspect is very "western European/British").
I certainly felt perhaps a muted impact of their final death when I lost relatives, in part because I'd already done part of the mourning through their last years. It doesn't remove it, of course, it simply spreads it out.

Of course it can also contribute to the exhaustion described above when they are still physically alive. Instead of a mourning period that is perhaps shorter, you get a prolonged one because every visit starts it all over again. Those who are perhaps more removed from the situation (eg family far off or once a person goes into a carehome and there's less contact) can perhaps feel this less because they get fewer reminders.




To swing back to a story this might be two interesting avenues to go down for a magically induced dementia where there might be potential for a recovery (even if characters are unaware of the potential). There's a vast hotbed of emotions and conflicting feelings to throw your characters (and readers) through if some characters feel a person they once loved is now "dead" as a person only to suddenly recover.

 

[Montero]

@Kerrybuchanan - I definitely had it easier than that with my father.
Reminds me though, we had two elderly relatives living with us when I was little, and one definitely had the beginnings of dementia - she'd come down from her flat to accuse us of stealing things - and on one occasion early one summer's morning just after dawn so about 5am when we were all asleep, decided to go for walk, the house was locked up and she started hammering on the glass of the half-glazed inner door screaming for the police and yelling that she was a prisoner. She did actually have her own set of keys to get in and out. That was a rather electrifying way to spring awake.

 

[Kerrybuchanan]

Even in cases where it develops gradually it can seem to suddenly appear from nowhere and get worse because the early effects are hidden

As I understand it, the brain compensates incredibly well for much of the early disease process, disguising symptoms even from those closest to the sufferer. this was certainly the case with Dad. He'd do the occasional silly thing, like put things in odd places, as mentioned somewhere above, but one day he phoned my mum to say he was sitting in his car (they had one between them) on the side of the road and had no idea where he was or how he'd got there. A sort of blackout, during which he'd driven approximately thirty miles over a combination of dual carriageways, roundabouts and winding country lanes. She was able to talk him down, work out where he was, and give him directions home. That was the last time he drove a car. That was what led to his diagnosis.

 

[Montero]

A friend of mine with no dementia at all, but under extreme stress, set out to drive three miles to work, which took her past a motorway junction. She'd normally get to work at about 08:30. At 09:30 she became aware she was driving down the motorway and must have been for the previous hour. She booked an emergency appointment with the GP and went straight there and finished up on tranquillisers.