Via Sociological Images, I read a story about a nursing home in Dusseldorf, Germany.
As patients age, nursing homes risk that they will become disoriented and “escape” the nursing home. Often, they are trying to return to homes in which they lived previously, desperate that their children, partners, or even parents are worried and waiting for them.
When they catch the escapee in time, the patient is often extremely upset and an altercation ensues. If they don’t catch them in time, the patient often hops onto public transportation and is eventually discovered by police. The first outcome is, of course, traumatizing for everyone involved and the second outcome is very dangerous for the patient. Most nursing homes fix this problem by confining patients who’ve began to wander off to a locked ward and resigning themselves to physically or chemically restraining a desperate and emotionally-wrought patient.
An employee at the Benrath Senior Center came up with an alternative solution: a fake bus stop placed right outside of the front doors of the nursing home.
This fake bus stop is described as having two beneficial effects. First, making it easy for staff to find and protect the people experiencing delusions, which “meant that many disoriented patients no longer needed to be kept in locked wards.” Second, comforting the person experiencing a delusion and allowing them to move towards their goal.
I think this is an interesting idea and I definitely support minimally restrictive policies that avoid people being locked up or restrained. But it makes me feel just a little uneasy, like there’s an edge of mockery. Am I being too prickly? What do you think?
33 thoughts on “I Can’t Decide What I Think of This”
I’ve heard about this fake bus stop before. From the way was explained to me, I didn’t feel there was any sense of mockery for the patients. Rather than risk a distressed patient escaping and possibly coming to harm and more distress if they’re caught or make it to actual public transport, staff are able to give the patient a safe way to play out this need.
Like, Jane Doe suddenly thinks she’s a young mother again and needs to get home to her three year old. Her nurse is able to say ‘ok, let’s go out and wait for the bus to take you home.’ and then after a while of waiting outside, Jane’s calm and moved on from her confusion and can be coaxed back inside.
I have, however, heard that staff need to also keep an eye out for tourists/visitors who mistake the bus stop as a real one.
I don’t feel like it’s mockery so much as giving the patients a sense of calm and belonging – the bus stop idea depends on *their* sense of rightness, not anyone else’s.
A similar idea here in Australia was to build a walking loop inside the nursing home, so that patients who want to roam can simply walk around the loop, staying in a safe environment without needing to try to escape. Use of sedatives and locked wards plummeted, because the patients could do what they needed without endangering themselves or others. My grandmother (who had only mild dementia but was physically very frail) stayed in one of these homes for nearly a year and it was a very calm, open environment. Patients could move freely and staff resources were focused on patient needs, not keeping order.
I work at a nonprofit that supports the dementia/Alzheimer’s community, and I can tell you that a fake bus stop is a genuine, kind, and creative solution to a very real problem.
The “disoriented” patients in nursing homes are not just elderly people, they’re people suffering from a form of dementia. This means that they have a progressive, degenerative brain disease for which logic and reasoning are often futile.
You can learn more about wandering here: http://www.alz.org/living_with_alzheimers_wandering_behaviors.asp
Please let me know if you have any questions about Alzheimer’s and/or dementia and I’d be happy to help you out!
I can see what you mean- I think it’s a good idea, but it is a trick. I think that’s what makes me feel awkward about it- it’s a system designed to tell a really useful lie. I think in this case it’s justified, because practically it works really well and it’s not specifically encouraging a delusion- it’s just providing an easy path for the delusion to take that can be safely controlled by the medical staff.
I think it’s a great idea, really- but it still makes me feel awkward, just because it’s a lie.
I think that’s a sensible concern to have about a potential risk inherent in the fake bus stop idea.
On the one hand, it’s a very nice solution in that it involves seeing things from the POV of the person and understanding their ‘escape’ not as bad or disruptive behaviour, but as a perfectly natural function of their desire to live their lives as they always have. It reminds me of what I’ve read about the concept of ‘contented dementia’, which involves – rather than constantly challenging the person with facts about the present which they, in many cases, won’t be able to hold onto – engaging with them on an emotional level and from the perspective of whatever it is they are experiencing, e.g. a period from earlier in their life:
From that perspective, the bus stop is a positive thing because it gives them their objective without compromising their safety.
On the other hand, I do see the risk of some passersby cruelly treating it as a joke since the person is on view waiting for a bus that isn’t coming. But that just invokes the larger issue of how society engages with older people and with people who have conditions like dementia. And that’s a conversation that our society desperately needs to have – just like how we need to discuss the idea of chemical restraints (which is, after all, a euphemism for ‘drugging people into submission’) in nursing homes. I’ve heard that it’s pretty common for them to be used less because an individual requires them in and of themselves, and more because the nursing home is understaffed and it’s not practical to give adequate supervision to the number of patients who simultaneously require it.
I didn’t get a feeling of mockery when I read about it, I thought it a clever and practical solution that involved minimal upset for everyone. The text talking about it doesn’t seem to include any “HA HA those stupid old people!” but rather relief that they’re not having to put anyone on lockdown and the patients aren’t panicked and upset.
Why does this seem like mockery? I know in some geriatric mental health units, they will put lots of potted bushes and plants near the exit, so that folks who are trying to get outside will feel as though they have exited the building. It’s the same idea. This is assuming that the people in the nursing homes/hospitals actually need to be there. But if they need to be there, and are experiencing delusions which is resulting in them doing something unsafe, this seems like an awesome solution.
If anything, I think the staff should be commended for trying to find options that don’t just involve restraining people. I think it’s actually a really thoughtful attempt by staff to centre the experiences of the folks they’re serving.
Thanks so much for this post.
I heard about this a fair while ago, and have discussed it with some people in the aged-care sector, but STILL don’t know what I think about it. As you expressed more clearly, I am happy about the way it works with the world-view of the residents, and enables them to be in sunshine, trees and fresh air, rather than within institutional walls all the time.
But, certainly I felt there was some edge of snickering, if not behind the actual policy, then behind how I first heard it reported. I do also worry about residents being left to wait for hours for a bus that is never coming. Something about that really troubles me.
The worry I would have here is that in the US many seniors are put in nursing homes who are still mentally competant. I worry that someone who is aware of their surroundings and genuinely wants to go home/be with loved ones is being held against their consent using their medical conditions as a threat/excuse. Cases like this one http://www.bilerico.com/2010/04/sonoma_county_ca_separates_elderly_gay_couple_and.php are unfortunately all too common.
On the other hand, my great grandfather had severe senile dementia and often believed he was a child and would ask after his dead siblings but was physically in excellent health. He would roam around and sometimes become injured. I feel that for him, the notion of a loop or fake bus stop might be helpful to make him feel like he was about to go home to his parents without further safety risks.
So, I too am torn here. One of the biggest issues I have though stems from abuses that abound in the American system (institutionalizing the old and the disabled routinely and making home care or assisted living near impossible, denial of the rights of competant patients, etc.) . I do not know whether or not Germany has these issues as well.
I think what’s bothering me is the way it’s talked about, not the situation itself.
I really like the idea. Of course, I hate locked wards- they are extremely frightening places for everyone, so if the bus stop allows the doors not to be locked, then fine. Yes, it is lying to the patient. And that isn’t ideal. But, as someone who does care work (working with adults with developmental disabilities) I can say that sometimes a lie is best for the patient. Because if we didn’t lie, the patient would get violent and harm others, us or themself. Then the patient would be given restraining medication or kicked out of the program (and, in the area, there aren’t really any other good program options.) So lying ‘Yes, we will have fried eggs tomorrow) calms the patient and allows us to avoid those scenarios, I am OK with that. It isn’t ideal. But it is the lesser of two evils. And often care work is about choosing the lesser of two evils. One reason why care work is very taxing is that you have to make those choices constantly. And again, none of the options are ideal.
There is a facility for patients with Alzheimer’s Disease and dementia near my parent’s home. We had several incidents that I can remember where patients escaped and tried to enter our home or our car. I will never forget looking out of my window at midnight one night and seeing a strange man trying to get into my mother’s car.
A bus stop set up on the grounds would have been ideal if it would prevent some escapes. There was a large walking area and paths behind the facility, but it was just woods all around. It’s probably better for all people, since the patients that I have seen escape get very agitated and upset when they realize that they aren’t home and don’t know how to get there.
I don’t think anyone would be made fun of; in my situation, it’s a more rural community, so installing a bus stop in the back yard of the building wouldn’t be noticed by the average passerby.
There’s a nursing home right down the street from my dorm (and one part of it is identical, they used the same builder :P) and there’s a fenced in part near the sidewalk, and I’ve noticed the bus stop sign in there, and it looks just like one down the street.
One tiny mystery solved.
And with our bus system, I wouldn’t want anyone with dementia getting on the real buses.
I think it’s pretty cool.
I should note that the nursing home seems to be split in two – the dorm looking building (2 10 story towers – though I’m sure the residents get a room to themselves) and a lower, wider 2 story building. In front of the smaller building is the fenced in area – trees, benches, and the sign.
I think the other one is more “assisted living” because there is no fence and there are always residents outside.
these replies have definitely helped me identify my discomfort – it is a lie told to PWD by TAB “for their own good.” i’m not disagreeing that this particular instance seems beneficial for the PWDs themselves, but it makes me a little uneasy to be establishing a precedent like this. given the historical context – when lies told to PWD “for their own good” have often been instead for the convenience or preference of the TABs – i guess it’s hard for me to trust that techniques like this will actually and truly be for the benefit of the PWD.
to me, this is another example of the deep and lasting harm done by the history of ableism and the exploitation and abuse of PWDs – even in a situation like this, that seems to actually and significantly help the PWDs, i have a very hard time trusting the TABs to do the right thing and respect their dignity and integrity.
Wow am I the only person who finds it really horrible? Nursing homes shouldn’t exist in the first place. They’re just one more form of institution. And “It’s not like doing it to normal old people, they have dementia” is really patronizing.
My problem with it isn’t that it could involve mockery. It’s because I’ve been in institutions and wanted to get out. And even delusional people don’t generally like institutions (wouldn’t think this would need saying on this blog). This is a “solution” to a problem that shouldn’t exist because the places creating the problem shouldn’t exist. I know that even in noninstitutional settings people “wander”, but there have to be better ways to do this. Ways that don’t involve nursing homes and don’t involve fake bus stops. There’s nothing respectful about this, I’d rather be tied down than have people mess with my head (and I’ve experienced both).
Just imagine getting out of there and wondering if every bus stop, every part of the outside world is just a ruse built to keep you from getting out of an institution. That’s the kind of mindfuck this stuff creates. And to create such a mindfuck in someone who has trouble reasoning is all the worse. People who already have reason to doubt their senses don’t need to be given more reason. At least restraints on your body are honest. It’s the shackles they put on your mind that are the worst and the hardest to recover from.
Also it’s not like they know why people “wander”. I was a “wanderer” as a kid. They kept trying to blame it entirely on my neurology. The truth was, I was aware that nothing I could do would prevent me from being institutionalized at some point in the future. And so I was trying to run away from home while I still had a place to run away from. People with dementia have been shown to retain far more comprehension than it looks to people who judge it by speech. Sure some may be running away for delusional reasons but I am certain some run away for the same reasons I did.
And regardless of the reason this is just not the way to handle it. There is nothing remotely respectful about creating what looks like a piece of the real world but is really just part of the institution. It’s creepy in that dystopian way that “kinder” institutions (the creepiest kind as far as I’m concerned, because they substitute psychological manipulation for restraints) are so good at. Manipulating people this way is not the answer. Neither is acting like a group of people is so totally incapable of thought that it doesn’t matter.
.-= Amanda´s last blog ..Kowalski and SBWG close their blogs due to cyberbullying. =-.
Abby Jean, I understand your discomfort. I feel a great deal of discomfort with certain polices and procedures at work. But what I have come to realize is that often there are not perfect solutions. Sometimes there are no good solutions. Sometimes, the solutions are only ‘good enough. I;m lucky that the folks running the agency I work for are truly good people who want clients to live in the least restrictive environment and want clients to be able to go out into the community. I trust them. But there are many agencies, I know, where this is not the case.
One of the things I have also come to realize is that sometimes I am uncomfortable with a policy but the clients don’t care about it. And I should be taking my cues from the clients, not from my own issues regarding that policy. In this case, the bus stop is a good enough solution- the clients are not harmed by it, it enables the environment to be less restrictive and it helps with the keep the clients calm without the use of physical/chemical restraints. Care work is not easy and the solutions are not always ‘perfect’ or ‘good.’ But this is good enough.
@KJ – i’m hearing some discomfort from people who have experienced these policies, not just hypothetical concerns. i think the issues raised by Amanda are particularly insightful and relevant (to the point where i should have just asked her to write the post!).
“Just imagine getting out of there and wondering if every bus stop, every part of the outside world is just a ruse built to keep you from getting out of an institution.”
this resonated particularly strongly with me because it reminded me so directly of the work i do with domestic violence, where the primary effect of abuse is to make the victim doubt hir own judgment so thoroughly that sie discounts and explains away, and tolerates abusive behavior. this dynamic would also make it particularly difficult for those subject to the policy to contest it or complain about it to those implementing it, who hold near total control over their lives and conditions.
I don’t think your point about domestic abuse and “ruses” are relevant in the case of dementia. People with dementia slowly lose their ability to make good decisions and think rationally as the disease progresses through their brain.
At any point in your life, you were not a “wanderer” in the same sense as a person with dementia. Educating yourself on what Alzheimer’s and dementia do to the brain will help you better understand this.
Dementia doesn’t cause a person to just lose their memory and sense of self, they lose body functions, brain functions, ability to care for themselves. Nursing facilities are far more appropriate for people with dementia than they are for seniors without this disease. They require high levels of care, and until you’ve cared for someone with dementia (as I have) or talk to caregivers every single day (as I do) I don’t believe that you’ll fully understand the reason why having a fake bus stop is not “horrible.” What would be horrible is letting a person with dementia get onto a real bus and go wherever the bus takes them, letting them be vulnerable to whomever might find them. This isn’t patronizing, it’s real life.
I’m seeing some comments here which seem to be centreing the experiences of caregivers and care providers, and I’m like to remind people that this is a site that centres the voices of people with disabilities; there’s some problematic stuff happening here with ‘well, it doesn’t harm people’ and ‘it’s for their own good’ despite the voices of people in this thread, like Amanda, explicitly discussing how this does harm people.
I’d also like to remind people to please be careful when responding to specific people in thread, as there’s some conflation of different folks going on!
except that Amanda, and most likely none of the other people in this thread, have dementia, which means that none of us are qualified to speak for people with dementia, or from the vantage point of people with dementia.
Amanda, your comments, and abby jean’s comments, have made me really rethink this situation. You’ve made me really think about what’s happening there, and what impact that would have.
i agree that i do not have dementia. nor does Amanda, to my limited knowledge. but i can easily see this technique being extended to people with psychosis, hallucinations, and other delusions. as a person who has been institutionalized with those conditions, i certainly feel qualified to speak about how being subject to this kind of “trick” would make me feel.
i also take issue to the implication that without the voices of people with that particular disability, we should defer to the opinions of caretakers and policy makers. i’ve mentioned in this comment thread a few reasons why people with dementia might not feel comfortable or safe speaking up about their treatment – the history of treatment of folks with mental health issues provides even more reasons.
i am not saying that i think this bus stop idea is inherently flawed and evil. i’m saying that i have an edge of discomfort about it, based on reasons articulated in this thread, and think it deserves a critical look to ensure if and when it’s extended beyond this single example, it’s done so in a way that does not infringe on the dignity and personal integrity of PWDs. the suggestions that my discomfort or desire to critically engage with this policy are based on lack of familiarity with the disabilities involved or my inability to understand how things work in “real life” are insulting to me personally and to the efforts of structural analysis as a whole.
What bothers me deeply about this is what makes it so easy for TABs to accept and praise this idea. That is: our culture already so devalues the experiences of PWD and completely discounts their own authority on their own bodies/lives/selves; our culture is already built upon the premise that PWD have to be deprived of knowledge and autonomy “for their own good” and “for everyone else’s good”; our culture already encourages TABs to enforce this on PWD and patronizingly tell them it’s because they can’t be trusted to know how to do things for themselves, etc.
Forced medication, institutionalization, unethical experimentation, and so forth.
It all grows from the same root. The reason our culture feels so comfortable with this idea (fake bus stops) — so comfortable as to go to great lengths to actually build and maintain these things! — is the same reason it feels comfortable forcibly sterilizing disabled women, and so on.
That’s what makes it so fucking squicky. No matter its true merits. It’s going to be dirty because of everything else that’s going on. There’s no way it can just be taken as good, clean, altruistic, pure in motive, etc. even if, objectively, considered on its own, it is. (That’s if — I’m not even speculating on the ethics of this case itself!)
If people want to complain that we’re being unfair in not liking this, they should be redirecting their efforts to stop the ableist system that makes all of these things happen — forced medication and fake bus stops both.
There’s a reason TABs ooh and aah at each other about how neat and clever this is. It’s the same reason they patronizingly explain to us that it’s irresponsible and morally wrong for us to breed, or that the medical procedures we’re having forced on us without consent are for our own good. They both come from the same damn place.
Fake bus stops are merely a symptom of the societal disease. Maybe pain serves a useful purpose otherwise, but when it’s happening as a result of your immune system attacking the tissues in your body, it’s a problem. Same here: maybe this idea would be a great one in an otherwise-good society, but here in this one, it’s a problem.
i can speak to both sides of this, to some degree. i’ve worked as an EMT for many years, and one of the hardest things i had to do was refuse to let residents at the town nursing home leave with me when i was taking another resident to the hospital. these were all very sick people, beyond the dementia or alzheimer’s, in need of round-the-clock treatment – more care than most families could have given them, if they had living family at all. they would be convinced that i was their daughter, or sister, or mother, there to take them home. i think letting them have a shady bus stop or loop would have been kinder than literally forcing me to close the door in their faces.
i also had one grandparent who chose to go into a nursing home rather than live with his children – he didn’t want to live with my aunt or uncle, he didn’t want to move to live with us, he wanted to live in the nice little nursing home and watch JAG and eat applesauce and only deal with the kids and grandkids when he felt like it – so i know not everyone is there by force.
on the other side, i have also been hospitalized for hallucinations. i called a friend to take me to the hospital myself, because i was aware enough to know that what i was seeing wasn’t real, but that didn’t make me stop seeing it, and it terrified me. what i wanted more than anything was to be safe – i couldn’t trust myself to act the way i knew i should. that week in the mental hospital was one of the best things i’ve done for myself, so i take issue with the idea that they shouldn’t exist.
Certainly got me thinking.
I’m a PWDs who also does care work. Believe me, when I say I would rather see my clients waiting at a bus stop than be chemically restrained, it is because I know what it is like to experience chemical restraint. Caregivers and agencies do have to make choices about this sort of thing. The clients I work with have input into their treatment, but due to extent of their disabilities cannot be in complete control. The good agencies, like the one I work for, agonize over treatments, particularly when they involve any level of restraint.
I sometimes feel divided because I can see both sides of issues surrounding treatments. But agencies are not the enemy. They are, on the whole, made up of good people who have to make hard choices. Please remember that.
well, we seem to have gotten away from both nuance and historical context in this thread. as i wrote, i wasn’t clear on my thoughts when i wrote the original post, but this thread (and especially the comments from Amanda) made me want to think a lot more about when or how lying to or tricking or otherwise deceiving or misleading PWDs is an acceptable part of treating or caring for them. and it made me want to think about those issues from the point of PWDs experiencing that deception.
this bus stop – and the context of people with dementia living in a long term care facility – is just one instance of this kind of deceptive care and treatment. and while i recognize the protective goal of the policy, i wonder whether there are other ways to achieve it without relying on deception, rather than just accepting this deception-based method as “good enough.” more activities or programs at the facility to keep people active and engaged? assisting people to live in community settings so they’re with their family and eliminate the need for them to run to their families? i don’t know, but i’m certain there are other potential possibilities that could be explored – but i’m not certain they have been explored. so i’m not on any “side” in this discussion – i just want to talk about whether and why deception is acceptable in this instance and context.
but i think we need to talk about it rather than automatically accepting it is the best solution from the perspective of PWDs. this is because i think it’s crucial to keep in mind the deep history of abuse and exploitation of PWDs by people who were ostensibly acting in their own good. i was reading this afternoon about rosemary kennedy’s lobotomy and how it would help her by eliminating the tumultuous emotions she experienced. so while care agencies are not automatically evil – and i struggle to find where i’ve said either that or that i don’t think mental hospitals should exist – nor are they automatically protecting the rights of PWDs.
How do the questions about the ethics of deception fit into how other people should respond to people with dementia? Several of my older relatives have had Alzheimer’s. When the first one was diagnosed, I was a teenager. I remember several times when we went to visit her, and she would call me by the wrong name and start talking to me as if I were that other person. Or, sometimes, she’d just start telling me stories about things that happened, and I knew she was getting the stories wrong. At first, I tried to correct her. I thought it wasn’t fair to let her continue to think things that weren’t true. But when I did that, she’d get upset. So I started following my mother’s example and just going along with whatever was going on. So I’d smile and agree, “Yes, we did have a lot of fun that time that we went to Detroit,” or whatever. So when we left, rather than remembering that she’d just had a visit where I contradicted things she said, she’d remember that she just had a very pleasant visit with my grandmother, who’d been dead for 15 years by that point. Is this sort of deception in the same category, ethically, as the fake bus stop?
great questions, Ruchama. what you did would definitely be my instinct as well. but how and where (and can we?) draw the line between ok and not ok deception? on which side of the line does what you describe fall? how can we ensure that PWDs are driving where that line is drawn? does dementia vs psychosis matter to this? this is where i start being less sure.
Wow, I wasn’t expecting to get the “caregivers know best and you obviously don’t know what dementia is” line on this blog. There was a time in my life that hearing that would have reduced me to complete incoherence. Hello, okay, I’m autistic with a history of being hit with some extremely heavy-duty psych labels and all the assumptions that go with them. And yes the “wandering” thing is seen the exact same way by caregivers of people with both sets of conditions — you are seen as a person whose mind is so completely messed up and/or nonexistent that absolutely no decision you ever make is ever remotely even a little bit based on the ordinary things that motivate just about everyone. And therefore no matter what your reason for leaving somewhere is (and especially if you can’t communicate your real reasons) you will get hit with the wandering label and it will. Get assumed you are doing it because your mind is screwed up and/or gone in some way.
Having had the experience of having my every (and I mean every) emotion, action, and response to things seen as part of a disease that totally obliterates the mind in some way, I am totally qualified to discuss how that feels. And it’s fucking patronizing to tell me to go read up on dementia. I can assure you that when nonautistic disabled people relate their experiences of total dehumanization to people like me, there are caregivers who tell them to go read up on autism (almost none of the literature about autism reflects our true abilities and experiences). And they are totally wrong to do so. I am discussing a form of oppression that can be done to just about everyone with a condition that affects the mind, whether it’s autism, intellectual disability, mental illness, or dementia. It is totally inappropriate to pull medical-model stuff out and fling it at me as if that just magically destroys any ethical questions.
As it happens, I know what dementia is, have worked with people with dementia, and have known people with dementia. It’s partially from those experiences that I know some of what I know. (And if you’d bothered to read what I said more closely, my comment about research showing people with dementia having more awareness later in their diseases than previously given credit for you, you could have figured out that I read about these things.)
Part of the reason I find your flinging around of “but they have dementia don’t you know what that means” so thoroughly offensive is that I’ve had that flung at me before when I stuck up for people I knew who had dementia.
An example. I was in a room with a man and two women. The older of the two women had dementia. I had noticed that the woman with dementia, far from actually being totally disoriented, was processing the conversation at a slower speed than normal. (I know a lot of people with cognitive and communication impairments. This isn’t remotely uncommon among people judged to just be babbling nonsense.) Her responses made total sense if you factored in lag time. But they had basically excluded her from the conversation on the grounds that she wasn’t making sense. I tried to tell them just to wait a bit for her to answer and that she was in fact following the conversation but just more slowly. The response I got? “You don’t understand. She has dementia.” (Flashbacks to people being told there was no point in talking to me because I didn’t have enough of a mind present to understand and that I was none of their business anyway.)
A similar thing happened when a woman with dementia kept saying of another woman in the room, “I know her. I know her.” The man with her kept telling her to be quiet and that she didn’t know this woman. The other woman greeted her and said that she did in fact know her from thirty years ago. “No you don’t understand, she has dementia.”
That last line is ableism in action. Often it’s ableism in protection of even worse ableism. It’s not the kind of thing you can just turn loose on people who denounce ableism. There’s not one kind of disabled person who shouldn’t be subject to ableism and another kind of disabled person who is too severely disabled to be protected from ableism. The people considered the most severely disabled are the people who need to be protected the most from ableism. Because they are the ones who stand to lose the most — including their lives — from ableism. Because they are often subject to the worst ableism. So my knowledge that dementia is a very severe impairment is what makes me so opposed to ableism targeted at people with it. And my knowledge of what it’s like to be considered mindless is absolutely relevant — it’s deeply, deeply offensive to suggest that the only reason it was wrong to treat me that way is that people were wrong about me (and not knowing me well, you actually have no idea what my cognitive impairments are or were).
I also happen to more than qualify for admission to a nursing home. I have to continually fend off people trying to put me in such places. I have varying degrees of trouble with ADLs and IADLs and receive services from a developmental service agency (because I really do have severe impairments related to autism) and a home nursing agency (because I really do have severe physical impairments and am almost completely “bedbound” except for brief excursions in a powerchair). I am probably more intimately acquainted than you are with what it means from the inside to have trouble with bodily functions, self-care, communication, chronic medical problems that require very careful management to keep me out if the hospital, etc.
My cognitive abilities fluctuate (because my cognitive stamina isn’t great and it causes me great difficulty to do things like write this) such that much of the time I have zero awareness of language, zero understanding of my physical surroundings besides their purely sensory qualities, zero ability to use symbolic thought, zero notion of time, and in general lack cognitive abilities so basic many people don’t even know they’re using them all the time. Moving back and forth involuntarily between that and the kind of thought it takes to read and write and so forth (which takes effort like climbing a cliff to sustain), may not make me aware what dementia is like. But it makes me very aware of what it’s like to have a severe enough cognitive impairment that I have walked into the street on countless occasions unaware of the danger, followed patterns of light and shadow all over the place with no awareness of where I was going or what the risks were or how to get back or even what “back” was, and all sorts of other things. It means I know that lacking certain really basic cognitive skills (no matter what the cause) doesn’t mean lacking humanity or being unable to suffer from ill-treatment or manipulation. It also means that when I do have the means to contemplate it, I can often identify with people with a wide range of different conditions who have their actual skills and capacities overlooked by people who assume that if certain things are missing then other things must be too.
So don’t assume that just because I’ve sometimes been able to plan actions that nobody realized I was capable of planning, then I must have no idea what it’s like to “wander” because I was following patterns of light and dark and being incapable of planning a thing. People capable of taking buses are capable of something that during those times, I couldn’t do at all, I would just (when I could walk) walk out into the street and go off in the direction of whatever sensory impressions caught my eye or ear or whatever.
I’m not saying these things out of ignorance of reality. Or ignorance of dangers. Or ignorance of dementia. Or ignorance of difficult choices. I’m saying these things because of a dreadful awareness of what they can mean for those subject to such procedures. I see errors here that I have seen so many times before in so many places.
And what I’m saying is it’s not good enough, think of something else. Be more creative. Don’t stop at trickery and think you’ve found the magical wonderful solution that makes you such good clever caregivers. Don’t pull typical caregiver power games on disabled strangers and expect us to defer to your wisdom. Don’t tell people who’ve successfully worked on deinstitutionalization for people with all kinds of severe/profound impairment, that nursing homes have a magical quality of providing better care than could ever be provided elsewhere (disabled people die faster in nursing homes for a reason). Don’t assume that just because someone has certain cognitive abilities right now then they have no experience of lacking them. (I am still blown away by the irony of telling me that I don’t understand lacking certain cognitive abilities, when those who lack whatever ones you are talking about can still take the bus, totally unlike me at my most impaired… that’s just… wow did you pick the wrong person to tell that.) And don’t do that weird power thing where caregivers are supposed to know more about what is and is not oppressive to disabled people than actual disabled people who’ve been subject to similar oppression do.
And I repeat, because it’s important. That when you use this kind of trickery on disabled people. Where you build a fake part of the real world and convince them that it is the real world. Then they will in fact, if they have to ever deal with the real world, have serious trouble telling the difference. Even more so if they have impairments in reality testing already.
I had a similar experience because I was moved from a traditional institution to one shaped like a house. Identical power structures. Different building type. And the power they had extended to everywhere near the house too. This was over a decade ago. I am still having trouble piecing together what about my being in the outside world is real or not. The difference between having a kitchen and kitchen privileges. The difference between captivity and freedom. I have known lots of people who have this problem and don’t even know to complain about it because their minds are still bound up so tightly, who think it’s not a problem because they can’t perceive what’s happened to them yet. I have always had trouble putting a number on how long I was institutionalized because there is no clear dividing line as far as power structure between a traditional institution and a house shaped institution and living at home but in totally segregated ways where the power structures above you remain untouched.
And that is a problem whether anyone realizes it or not. A terrible problem. A problem where I still don’t know how much of my life is my own. I still don’t do certain things. Never occurs to me to do them. Because I am so thoroughly trained to not know what I am and am not allowed to do. This made me a partial success story but the cost is too high. People need to understand this. When you start building pieces supposedly of the outside world that are really institutional in power structure and everything but name. Then you confuse the hell out of people. There just has to be a better way and people creative enough to think of a fake bus stop are creative enough to think up a genuine solution. As long as they learn about the abuse of power first. And anyone who goes “well it’s okay because DEMENTIA” has a lot to learn about abusing power.
.-= Amanda´s last blog ..Kowalski and SBWG close their blogs due to cyberbullying. =-.
I have to agree with abby that I wouldn’t say these sorts of places shouldn’t exist. My grandfather is happier in a nursing home–he’d been living on his own for 15 years, and while family is able to visit easily, being in a home means he doesn’t spend most of his time without company anymore, especially since he had his license taken away a few years ago when his eyesight got too bad. Knowing my grandfather, if he was unhappy we’d never hear the end of it.
The concerns voiced here certainly give some food for thought though.
Amanda — the last comment of yours was really thought-provoking.
What I hear you saying is that a deceptive treatment should not be justified just because caregivers think that it has a positive effect on PWD. For caregivers to assume that they know what’s best for PWD is to ignore and disrespect the autonomy of PWD.
My first thought about the bus stop idea was that it was effective and desirable as a means to reduce wandering among people who had dementia, but now I am not so sure.
while i think a lot of good and interesting ideas have come out in this thread, i don’t feel that the continuing discussion is all that productive – i see people talking past each other and addressing straw arguments rather than actually engaging with the issue at hand. for those reasons, i’m now closing comments on this thread. because the issue of caregiver power dynamics is so important to the lived experience of PWDs, i am sure we will continue to discuss it on future posts.
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