Nursing homes and holodecks. Narrated by Emo Kitten.
In sixth grade, my class visited a Long Island nursing home. The experience was supposed be uplifting; back in the classroom we’d been studying Ellis Island, and the teachers excitedly informed us that we’d have the opportunity to gather first-person accounts of the immigrant experience, from people who’d been there! When we arrived at the nursing home, we were ready with our little pencils and notebooks and mini-recorders. We broke up into pairs and made our way around the room, each team spending about 5-10 minutes with each of the home’s geriatric inhabitants.
When we got back to the classroom the next day, nobody talked about what had happened. The teachers never mentioned the field trip again, and we weren’t asked to write a report. We turned to a new chapter in the textbook, and teachers hastened on to tell us all about how the U.S. had won the war and saved the rest of the world in the 40s. But we learned a valuable lesson that day, even if no one acknowledged it aloud. When we tried to interview the people at the nursing home, most of them they stared right past us. They drooled. They moaned and mumbled absently. The few who were actually aware of our presence spoke a little, but it was gibberish; no conversation lasted more than 2 minutes before the train of thought evaporated. The lesson we learned that day, completely not intended by our teachers, was to dread and fear the process of losing our minds with age.
Granted, we saw the worst-case scenario. It was a very poor nursing home that we went to, the kind of place where people with no loving/living relatives eventually end up in storage. Still, that memory can’t be erased – not until the moment when all memories start to slip, as I learned the year my grandmother used Palmolive instead of olive oil when making eggs one morning. Within a couple of years, she didn’t remember who I was, and soon afterward forgot herself. The books she’d read, the places she’d been – they were all gone. Between that and the aforementioned school trip of doom, I developed what’s probably one of my biggest fears.
Then, there are people who give me hope, like Terry Pratchett, who got was diagnosed with a rare form of Alzheimer’s last year. Well, he didn’t take that diagnosis lying down; he donates to the Alzheimer’s Research Trust, cheerfully refers to his condition as The Embuggerance, participates in experimental programs to find a cure, and continues to work on Unseen Academicals, the thirty-seventh book in the Discworld series. It’s the opposite of how my grandmother approached it, and maybe the attitude makes all the difference. “My father always used to say you have to be philosophical about things, by which he meant stoical,” he joked in a Times interview last year. “The future is going to happen whether I’m scared of it or not so I do my best not to be. Around about five o’clock in the morning things might be different but you just have to face it.” He’s right, of course. I just hope that if the same condition strikes me, I’ll be just as brave. And keep my fingers crossed in hope that by that time, every old person’s home will have a Holodeck installed.
February 17th, 2009 at 2:05 am
Fourth book? It’s going to be the thirty-seventh novel alone. Did you maybe mean “fourth book since his diagnosis”?
February 17th, 2009 at 2:17 am
I suppose we all hope that, faced with the prospect of the relentless deterioration of our brains, we can react bravely. Alzheimer’s disease, when it afflicts others, moves me to great pity and the desire to help. Furthermore, if I think about Alzheimer’s drifting into my own brain and quietly destroying all my memories, it scares the living daylights out of me. The human brain is obviously meant to retain information and learn from it. Your entire personality is encoded in there! So, yes, I can absolutely sympathize with your fear. We must continue to hope that the brilliant scientific types will discover an effective treatment. Until then, bring on the Holodecks!
February 17th, 2009 at 2:22 am
I think there’s a mistake here, there are WAY more than 3 other Discworld books
February 17th, 2009 at 2:31 am
Sorry guys, that was a weird brain-fart typo! I don’t know how that happened. Fixed.
February 17th, 2009 at 2:51 am
Nadya, can I come over? I’ll bring tea and cookies. And some tuna for the emo kitten.
February 17th, 2009 at 3:11 am
You really hit the nail here. I think my greatest fear in life is growing old, and the accompanied loss of control.
I don’t know what triggered it for me; I was terrified of it even before I had the chance to watch my grandfather wither away into a shell not worthy of his spirit.
He said, on the occasion of his 90th birthday, that while he felt privileged to see the changes in the 20th century, the advent of modern medicine and technology allowed for life extension, but not the equivalent congruous extension of quality of life. He expected improvements in quality of life to be the great challenge of the next generation.
He defined quality of life as having a mind worthy of the body, and a body worthy of the mind.
February 17th, 2009 at 3:51 am
My Grandma is being moved to a form of mental institution/hospice on Saturday. She’s been this way since the beginning of 2009. I can barely take it.
I’ve not seen her in so long and now it’s coming to crunch time. My parents have advised I don’t see her as she won’t know what’s happening either way and it may ruin what I know of her. I also don’t want to distress her by my prescene. I also selfishly don’t think I can take being accussed of posioning her, of being someone else or of seeing her in this state.
But I need to see her. And she needs to meet my fiance for the first time. And I love her so much. I really don’t know what to do.
Impossible situation. This terrible condition happens. I just wish the best and most comfortable lives for those who suffer from it. Anything that any of us can do for them, if anything helps.
February 17th, 2009 at 5:53 am
“The future is going to happen whether I’m scared of it or not so I do my best not to be. Around about five o’clock in the morning things might be different but you just have to face it.”
This. This is exactly the spark that people, regardless of condition, ought to have. Everyone runs around so scared that their perfect little plans will get ruined by disaster or disease or whatever. Yeah, they probably will. So why get all uptight about it?
Thanks for the great piece, Nadya!
February 17th, 2009 at 7:02 am
I was forced (FORCED!) to volunteer for 40 hours in the dementia ward of a nursing home during high school, and believe me, that was the worst spring breaks I’ve ever had, full of down-heartedness and weird dreams and elderly women staring into my eyes and insisting “I’m YOU!” Oh, god.
So I very definitely cried when I heard about Terry Pratchett’s diagnosis, but, as you said, it seems he’s just as, um, Pratchetty as ever! Gotta love that man.
On a semi-side note, apparently he pulled out of a movie deal for Mort because the producers “loved the story but wanted to lose the ‘Death’ angle.”
February 17th, 2009 at 7:24 am
I definitely sympathize with you on that fear… it’s one of mine too. Not something I think about often, but whenever I do it scares the hell out of me.
February 17th, 2009 at 8:19 am
Right on, Nadya. Very scary disease. Keep those brains stimulated by doing something totally foreign to your mind every now and then – even if it’s just taking a different route to work or reading a book in a genre you normally wouldn’t.
February 17th, 2009 at 8:43 am
Not since George Harrison’s death have I been so upset about the condition of someone I’ve never met. I own every Discworld book- have been reading them over and over since I was a teenager, and was incredibly upset to hear that Terry Pratchett had developed Alzheimer’s. I’m happy, and not at all surprised, to hear that he’s facing it with such good humour. What a rad guy.
February 17th, 2009 at 9:48 am
The BBC have been showing some lovely documentaries with Terry Pratchett documenting how he lives with the disease. He has such a proactive approach, it’s uplifting.
They’re available on the BBC website but alas just for UK residents; they might crop up somewhere else and if you can get at them, they’re worth a look.
February 17th, 2009 at 11:14 am
I’ll admit I’m terrified of ageing as well, among my worst fears are going blind, going deaf and loseing my teeth (though I’ll admit thats the least of them), that is if diabeties or cancer (which are coming at me from all sides) don’t get me first. I think people don’t take diabeties seriously enough, I’ve lost 2 grandparents and a great grandparent to it and from what I’ve seen it’s a slow, horrible, undignified way to go. Lucky for me dementia doesnt run in my family, so I’ll never have to face the prospect of loseing my mind to old age. But I guess Terry Pratchett is right; “the future is goning to happen, rather I’m scared of it or not…”
February 17th, 2009 at 11:29 am
Pratchett has also geared his efforts towards getting medication to people that can’t afford it. Great man.
February 17th, 2009 at 12:35 pm
I have worked in nursing homes with dementing people, and that’s scary stuff and very very sad. When condition goes far enought very little people actually have strenght to come see their relatives anymore. Suspicion and sometimes aggressiveness is too much to bear for most.
And change, it’s worst thing to see your beloved ones to turn to something very different before your eyes in span of 2-3 years sometimes.
February 17th, 2009 at 12:51 pm
Hey guys, thank you for all the brilliant comments on this post. I felt really vulnerable when I wrote it, and I’m glad that people are relating to it. It’s just so scary! Most days I don’t think about it, but I guess when I think about it a lot, it just gets to me.
I think Vivacious G had the right idea about keeping your brain busy at all stages in your life, making it do things it’s not used to. That’s one thing my grandma never did, and I think that’s one of the reasons she gave up so easily. Even before Alzheimer’s, her favorite hobby was playing Solitaire. When she moved to America, she didn’t even bother to learn the English language. I think it’s important to keep challenging your mind – that it’s one way to ward off this kind of thing, or at least slow it down. For example, I’m taking a Physics course right now at UCLA and it’s making me use parts of my brain I’ve totally neglected. I mean… it’s the first time I’ve remembered that there is such a concept as “square root” since high school.
Sometimes I worry that spending too much time online like a zombie is making my brain lazy. Less time on the interwubz doing nothing, more time reading books!
Thanks again, guys. *coil-hugs*
February 17th, 2009 at 2:35 pm
I was a young teen when my dad started telling me stories about the nursing homes he’d have to make deliveries to. He made me promise that if the time ever came he’d have to go in one of them to put a bullet in his head. The way he looked at me I knew it wasn’t a joke and it’s still a sore topic today. If you’re lucky to have family or kids to set you up right then the loss of control is less traumatic.
Lets face it we’re barely in control when firing on all cylinders. No doubt some here would say they’re just at the edge as is. I don’t fear losing memories or who I am to time and age…cause realistically we do that like snakes shed skin anyhow. We’re not the kid at 12, the teen at 16, the young adult at 20, etc. We’re always different people.
The more I read about Alzheimer’s the more it confuses me since its like as we get older we use our past more and more to define who we are. I noticed that a lot at a few bars watching old timers literally spend HOURS talking about the past…not to relive glory days so much but to argue about small facts like who’s right about were a certain place was located 20 years back. In a dead serious tone at that. Age and the mind is an odd thing…so I dunno what to expect if I make it that far.
@Jani…”it’s worst thing to see your beloved ones to turn to something very different before your eyes in span of 2-3 years sometimes.”
That happened with an aunt. She hit the point were she could no longer recognize her kids but me she had no problem with.
Near the end she would remember these stories from her early years like they just happened but what the present just didn’t stick. Least that’s how it felt to me at the time.
@Nadya…”Less time on the interwubz doing nothing, more time reading books!”
I wonder if that would be the best choice. I wonder if time out and about with the living world beyond words and images leaves more of an impact. Looking at my own day to day I’m a bit shocked how little of that I get. Kinda scary.
February 17th, 2009 at 8:23 pm
Hey, you guys really don’t give the Internet enough credit.
The affects of Alzheimer’s on the Internet generation won’t be studied for a long, long time — I guarantee you our minds are kept sharper much more than people who just sit around and watch TV. Even if we consider our time on the Internet to be just “dicking around,” we’re constantly assimilating new information and encountering new experiences, and it’s not like your brain cares if you’re butt is just sitting in one place while you’re doing it. :P
February 17th, 2009 at 11:02 pm
I worked doing maintenance at a care home for a few years. Picture old scottish men driving scooters into the walls and I’d have to fix it. At first the place can seem scary… but there’s a charm to it. Everyone has good days and bad days regardless of lucidity. Maybe they liked me because I was the young man fixing things. I found if you ask them about the past they still liked to talk about their memories. And if you are asked the same question a few times just change your answer a little to keep the conversation going. I’m not afraid of going to a care home one day, (if I make it there) just get me a scooter and two fingers of scotch a day.
February 17th, 2009 at 11:02 pm
I’m going to rant and try to make myself feel vulnerable too. That should be a stimulating exercise, right?
Getting old is so 20th century. We may not have holodecks, but if your life isn’t adventurous enough to kill you by 60, you’re doing it wrong in my book. Settle down and raise a family? Relationships make sense, but kids? All this green talk is laughable to me because the real issue is population control. Funny how most religions and countries encourage you to produce as many earth-destroying meatbags as you can. Back to being old. I have no intention of being helpless. My lack of hope for an afterlife is what gives me the edge over all the people wanting to meet their loved ones in imagination land. You can’t guilt-trip me into doing anything, even staying alive. I live every day with the near-constant thought that it’s amazing I can think, and I may not be able to the next instant. It used to scare me, but if you don’t try to be happy that makes it a lot more difficult to achieve happiness. Laughing is key. I don’t know why a lot of people don’t balance their mental and physical health. Their thought processes and priorities are different from mine, and I just have to accept that. If you love your life, you’re doing it right.
Speaking of going out in the open, enjoying life, and being stimulated, 11 days till Faun Fables plays in LA. Get your brooms everyone, time to sweep the kitchen!
I was really hoping this was going to be a discussion on What Would Your Holodeck Simulation Be?
February 18th, 2009 at 10:37 am
Hey Nadya, Awesome and thoughtful post. I volunteer with dementia patients, half because I love old people, and half because little kids scare the fuck out of me. I don’t know how to relate to them, even though I want one of my own. I, too, am scared of losing my mind one day. I hope that, if I do, I’ll be in an environment where I’m being cared for like I’m caring for these folks. I guess that line of thinking is a little selfish – like taking out a future karma insurance policy or something. But the end product is good. For those who have difficulty relating to old people, I’ve found that simple questions do wonders: “How are you?” and “How are you feeling today?” are good openers. For those who can’t talk, just hold their hand or rub their shoulder. They don’t bite. Well, most of them.
February 18th, 2009 at 7:09 pm
Thank you. That was beautiful.
February 19th, 2009 at 9:13 pm
I totally just wanna hug you right now.
February 20th, 2009 at 7:55 pm
I am not so worried about aging, but of losing my memory. I have already started to lose my memory. In fact, I even bought a book on memory, brain stuff, how to strengthen the memory and such. I cannot remember information for more than a second after you tell it to me. I cannot remember numbers at all, unless I use them daily. Forget trying names. A customer at work will have JUST said their name and I have to ask again. I dont process half of what I hear, it always sounds like gibberish or a foreign language, yet I can recognize another language that is NOT english. Its really ridiculous because I once had a photographic memory! I could look at something and be set. I didnt have to read a textbook, I could stare at the content for a few seconds and read it in my mind later. Now, whenever I tend to zoom in on what Im looking for in that mental book, its fuzzy, I cant read it. Its extremely frustrating, and has only gotten worse with each language I learn. Its like I dont have room for everything.
On another note. A very dear old woman had alzheimers. She was like my adopted grandmother, and cursed ‘worse than a sailor’. When her memory started to go, you had the same conversation with her every ten mintes, then five, then you just had the same conversation over and over until you changed the subject for her. It was incredibly saddenly to see such a strong, onery and independant woman lose her stories. And the life stories that woman had to tell. I wish I could have heard them all. At least she remembered me to the end though. I couldnt have asked for more of a miracle than that.
This entry hits a soft spot, I feel all fuzzy now.