I’ve debated writing a post like this for some time: a post that really hits the nail on the head with how I feel about the term “lying” in dementia care. So, here goes. I am fully aware that not all professionals in dementia care agree with me, and I know that this is going to annoy some of them. But, that’s okay. This needs to be talked about.
When I first started working in dementia care, I learned about Teepa Snow’s philosophy of “Redirection and Distraction,” which was part of her Positive Approach to Care technique. I also learned about Naomi’s Feil’s “Validation” technique, and began implementing what I’d learned with my residents.
One day, very early in my career, a resident of mine was asking about her husband. “Where is my husband? He was supposed to pick me up an hour ago!” she cried. Using what I’d learned, I sat down with her and began to engage. “Sounds like you miss your husband,” I offered. She looked me dead in the eye, squinted, and bit her lip. “Yeah. And I want to know where he is. Why does no one actually say anything around here?” she demanded. This shocked me. But, I did what I’d learned: I validated her feelings and asked her how she felt. I realized, though, that I hadn’t actually answered her question. I’d just redirected her.
Another time, I spent two hours trying to get a very irritated resident off of a bus. The bus had taken Eileen, one of my favorite residents, to the doctor’s office. This had not been a particularly enjoyable ride, and by the time she got back to our assisted living community, she was not in a good mood. We tried everything, but could not get this woman off the bus. I tried to redirect her. I tried to distract her. I tried to chat with her about where she’d been and even tried to explain that the bus was not going to be able to take her to her house, which is where she wanted it to go. Finally, I asked the bus driver to drive us around for a little bit. He ended up taking us to the back of the building about ten minutes later, and I told her that we “had to get off here, so that we could transfer to another bus later to eventually take her home.” Finally, hearing this, Eileen got off the bus. We went inside. My staff was thrilled that she was safely inside the building, but I was completely exhausted. I was also confused: had I done this whole thing thewrong way?
I was so confused by this—this feeling that I’d “lied” to get her to leave the bus with me—that I actually emailed Teepa Snow, who I’d met at a conference. As busy as a woman as she is, Teepa got back to me pretty quickly. “It sounds like you did the right thing. You did what you needed to do,” she replied.
That was great to hear, but it left me thinking…if that, then what? If it was okay for me to do that, but it’s technically a lie, how is that in-line with the dementia care theories I’d learned?
This was when I started developing my Embracing Their Reality theory. Teaching families and care staff to “never lie!” to people with dementia is too confusing. (See an article by Feil here.) Dementia care is a gray area, and telling people to “always do this, but not this, but sometimes this” just doesn’t work. Caregivers need real, TANGIBLE stuff they can use and apply.
If we were really sticking to the don’t-lie-thing, we would never introduce baby dolls and stuffed animals, right? I mean, that would be lying. That would be telling them that these were real, when we see them as not-real.
If you know me, you know that I’m all about the TANGIBLE. I want you to be able to use my stuff, apply it, and feel good about it. I want you to succeed in your positive dementia care.
When you embrace someone’s reality, you understand that their reality has shifted, and you must shift with it. Here’s my favorite (and very true) example:
I had a resident whose son had died a few years earlier. This was obviously devastating. In good news, she’d forgotten he died. (Hey, this is a good thing that she forgot!) One day, she came to my office. “Hey hon,” she said. “Do you know where my son is? He hasn’t called in a while.” I paused and considered this. “Where do you think he could be?” I asked. “Well…I guess he must be busy with work,” she replied. “That makes sense, he’s probably at work,” I nodded. “Can I call him?” she asked me. “Sure,” I said, and picked up my work phone. I dialed my own cell phone number and let it go to voicemail. As soon as it did, I handed her the phone. “Here, you can leave him a message,” I smiled. She left her son a voicemail on my phone. “Thanks, hon, I feel a lot better,” she nodded. It never came up again.
So here’s what I teach:
Throw out the word “lying.” Getting hung up on this word will only stress you out.
We are living in THEIR reality. Just because it’s not true for US, doesn’t mean it’s not true for them. Who are we to say what is true?
When someone asks you a direct question, find out what they believe the answer is, and then do that.
You don’t need to get creative and “make something up out of the blue,” but you do need to be able to “yes, and” your loved one with dementia. Agree and then add on.
I am not, in ANY way, dissing what the very smart people in dementia care who came before me have said. In fact, I’m respecting it because I’m building on it. I wouldn’t be doing what I’m doing today without the dementia care experts before me. But I think there’s more to dementia care than just validation/redirection/distraction/substitution/etc. I think we can all learn to embrace someone else’s reality.
I realized a little while ago (after struggling with mental illness for almost 30 years) that my approach needs to be positive, not negative.
I don’t mean positive thinking or any of that shit. I mean, if you’re mentally ill, you often frame management as “an absence of symptoms.” Which is great, if you’re talking about acne or a torn ACL or chicken pox. But if your mental illness is as pervasive as mine (anxiety with obsessional features), striving to eliminate every single symptom so that you can be “normal” is a fool’s errand. And I used to get worked up about it. One of my future in-laws likes to comment on my knee bouncing, and it wrecked my self-confidence whenever we were over at their house. “Nervous tic?” she’d ask, in front of everyone.
My current therapist is great. When I talk to her about eliminating a certain habit or tic that I have, she asks me if that tic is interfering with me living the life I want. If the answer is “yes,” then we work on eliminating it. If the answer is “no,” then we leave it be. My anxiety makes it impossible for me to go to Disneyworld. But I don’t want to go to Disneyworld, so there’s no reason for me to worry about it. I could spend all of my time trying to control all of my rituals and tics. I could exert all of my energy into social situations and “pushing my limits,” but all that is going to do is make me miserable.
Let’s reframe health as “capable of living the best life you can.”
Note: I haven’t created or extensively reviewed any of these resources, they’re just things I’ve found online that look like they’d be useful and to my best knowledge do not cost anything. These are self help resources intended to be used in addition to and not as a substitute for medical treatment- please contact a professional if you are feeling unsafe. 🙂
my hot take as someone who has experienced the lowest of lows in terms of severe depression and anxiety and executive dysfunction: the whole “not everyone is neurotypical karen” mindset is legitimately damaging and destructive and ultimately will make you feel worse and more isolated
eating well and exercising and etc absolutely helps with mental illness. obviously it’s irritating to hear that when those things feel like impossible tasks, i get that, and i’ve been there. but forcing yourself to eat better, to walk more, to get up out of bed and shower even when you don’t want to, those things help. they clear your head. they make you feel better. they absolutely do. getting there is hard, but once you do it, it does help
rejecting any kind of help, even the most benign suggestion, from someone who is trying their best to think positively for you and shoulder the emotional burden with you, is going to make you feel worse. it’s going to make you feel that much more cut off and lonely and frustrated. i have isolated myself and ruined friendships with people because i chose to close myself off from people who were just trying to help and i convinced myself that they didn’t understand me and no one would ever understand me. what did that get me in the end? genuinely nothing. it made me feel even more alone.
in 2018 i encourage people who suffer like i have to see where people are coming from with cheesy self-care advice. they’re coming from the heart. and sometimes, doing a face mask or taking a hot bath or eating a nutritious meal or getting up to watch the sunrise or even just one yoga class can make you feel that much closer to the person you want to be. a lot of recovery from mental illness is “fake it till you make it” type shit. so don’t reject even the corniest advice because you are convinced it won’t help you. sometimes it really does. and you shouldn’t keep denying yourself even the smallest of victories because you feel like it’s easier to wallow in how bad you feel. it is so difficult to do good things for yourself and your body, but it is so rewarding
Hey if you’re schizophrenic/psychotic I just want you to know that you’re a wonderful person and that you deserve so much better than the demonization, marginalization and stigmatization you face in this society.
Please consider reblogging this/other positivity posts for schizophrenic/psychotic people every once in a while. If you have more than 100 followers, odds are that a couple of them experiences psychosis and that they rarely see positivity posts for people with their symptoms.
My complete and total inability to keep anything clean or tidy for any amount of time is a symptom of my depression. I may never be able to do this. It’s important that I remember that and forgive myself when I clean something out (like my car) and it ends up trashed within a week.
Depression IS A DISABILITY. Requiring accommodations is okay.
Medications don’t make you better, they don’t cure your depression. They serve as an aid. Their purpose is to help you get to everyone else’s minimal level of functioning.
Depression can cycle through periods of inactivity. This doesn’t mean it’s gone away.
The reason I don’t feel like other people understand me is because … well … other people DON’T understand me. They can’t. They don’t have my disability.
Paranoia is par for the course.
Depression can and will interfere with your physical mobility. Forgive yourself when you can’t physically do something.
It’s entirely possible that I may never be able to live by myself. I can’t take care of myself. I need help to do it. And that’s okay.
a while back someone reblogged one of my poems on tumblr with the tag “no one deserves to be atlas”
and it hit me pretty hard and i want to talk about that today
listen, you are not a life support machine, you are not to be expected to carry someone’s organs. it is easy to fall into the rhythm of building your life around people who hope they are already dying, but that is not healthy.
i know. i am no stranger to people like this. i have known people who swallow pills with a snakejaw, who drink vodka straight without flinching and pray quietly that it’ll kill them, who smoke on their roof at 2am while crying. people who starve themselves until they can barely stand, who burn or cut or bruise their bodies because no one taught them to forgive themselves and be soft with their own skins. i have been these people.
there is only so much help you can give. if you learn anything, learn how to tell them: i am sorry, i cannot do this today. i am aching from holding the weight of your sky, please talk to a professional.
i see a mentality a lot amongst middle and high schoolers. i see it in college kids too, in some of my closest friends and in the drug dealer i talk to on weeknights. and the mentality says “if you are not willing to drop everything for me, you are toxic and a bad friend”
i understand that mental illness does a good job of making you feel isolated and it makes you scared of losing people, but realize that your support systems hurt too, and in ways that you might not even know.
listen, no teenager should have to add “keep my friends alive” to their to do list.
it can be hard to exist sometimes and it is okay to need help but you cannot place your fate in someone else’s hands. they shake just as much as yours, they are not any safer.
if you love your friends do not make them be atlas. they are not titans. they are small and afraid too.
“Aren’t schizophrenic people dangerous-” No. Violence towards other people isn’t a symptom of schizophrenia, nor is it common in schizophrenic people. That’s not to say that no one with schizophrenia has ever been violent because of their psychosis, but it isn’t a symptom of or in the diagnostic criteria for the illness, and schizophrenic people in general are no more likely to be violent than anyone else.
“Isn’t that when you have multiple personalities-” No. Schizophrenia isn’t about having multiple personalities – that’s called Dissociative Identity Disorder and is a completely different mental illness. Schizophrenic people might hear one or more voices in their heads and may feel like their actions or thoughts are being controlled by other people/outside forces, but this isn’t the same as having several personalities as it’s always the schizophrenic persons own personality which reacts to these distressing experiences.
“Isn’t schizophrenia when you’re psychotic like when you hear voices and stuff-” Yes, but schizophrenia isn’t “just” about experiencing psychosis (hallucinations, disorganized thinking/speech/behavior and delusions), it also consists of what’s called negative symptoms (lack of energy, lack of motivation, social isolation, lacking or inappropriate emotional responses, lack of ability to feel pleasure) and cognitive symptoms (impaired memory, impaired concentration, learning difficulties, executive dysfunction and impaired working memory). Schizophrenia is a complex mental illness and psychosis is only 1/3 of what schizophrenic people struggle with.
“You can’t recover from schizophrenia, right-” Not true. 25% of the people diagnosed with schizophrenia are symptom free within 5-10 years of being diagnosed with the illness and up to 80% improve with ongoing treatment and support. Schizophrenia isn’t necessarily a life sentence, and while you can’t EXPECT to recover from schizophrenia and while there’s no known cure, recovery is possible for many people with the right treatment.
“Shouldn’t schizophrenic people be locked up-” No. Schizophrenic people are people just like everyone else, and we have the right to the same human rights and the same freedom as other people. We might need to be hospitalized for our own safety sometimes, but we have as much of a right to be a part of and interact with society as everyone else.
“Real schizophrenic people don’t know they’re sick, right-” Some don’t, but at least 45% of schizophrenics are aware that they’re suffering from schizophrenia, so a person being aware that they’re schizophrenic and having insight into their illness/knowing that what they’re experiencing isn’t real or normal isn’t a sign that they aren’t really sick.
“What if schizophrenic people just have special powers-” I’m not going to deny you your right to your spiritual beliefs, but I’m going to insist that you don’t force them onto me or any other schizophrenic person. Just like I’m not gonna show up at a Christians door saying that God isn’t real just because I’m an atheist, you don’t get to tell a schizophrenic person that they can see into other dimensions or talk to spirits. You risk triggering or worsening our illness by sharing your spiritual or religious speculations, so don’t bring them up. Ever.
“Aren’t schizophrenic people dangerous if they don’t take their meds-” No. Anti psychotic meds are heavy medication that impacts your life in many ways, and taking them should always be a free choice. Some people would rather live with their psychosis than take anti psychotic medication, and this doesn’t automatically make them a danger to anyone.
I would really appreciate if non schizophrenic people would consider boosting this post as schizophrenia is a very misunderstood and stigmatized mental illness and I want this post to show up on as many dashes as possible.
Holding the Bowl 