If I can, I always opt to ditch my name tag in a dementia care environment. I let my friends with dementia decide what my name is: I’ve been Susan, Gwendolyn, and various peoples’ kids. I’ve been so many identities to my residents, too: a coworker, a boss, a student, a sibling, a friend from home, and more.
Don’t ask your friend with dementia if they “remember your name” — especially if that person is your parent, spouse, or other family member. It’s quite likely to embarrass them if they can’t place you, and, frankly, it doesn’t really matter what your name is. What matters is how they feel about you.
Here’s my absolute favorite story about what I call, “Timeline Confusion”:
Alicia danced down the hallway, both hands steadily on her walker. She moved her hips from side to side, singing a little song, and smiled at everyone she passed. Her son, Nick, was walking next to her.
Nick was probably one of the best caregivers I’d ever met. It wasn’t just that he visited his mother often, it was how he visited her. He was patient and kind—really, he just understood dementia care. He got it.
Alicia was what I like to call, “pleasantly confused.” She thought it was a different year than it was, liked to sing and dance, and generally enjoyed her life.
One day, I approached the pair as they walked quietly down the hall. Alicia smiled and nodded at everyone she passed, sometimes whispering a, “How do you do!”
“Hey, Alicia,” I said. “We’re having a piano player come in to sing and play music for us. Would you like to come listen?”
“Ah, yes!” she smiled back. “My husband is a great singer,” she said, motioning to her son.
Nick smiled and did not correct her. He put his hand gently on her shoulder and said to me, “We’ll be over there soon.”
I saw Nick again a few minutes later while his mom was occupied with some other residents. “Nick,” I said. “Does your mom usually think that you’re her husband?”
Nick said something that I’ll never forget.
“Sometimes I’m me, sometimes I’m my brother, sometimes I’m my dad, and sometimes I’m just a friend. But she always knows that she loves me,” he smiled.
Nick had nailed it. He understood that, because his mom thought it was 1960, she would have trouble placing him on a timeline.
He knew that his mom recognized him and he knew that she loved him. However, because of her dementia, she thought it was a different year. And, in that year, he would’ve been a teenager.
Using context clues (however mixed up the clues were) Alicia had determined that Nick was her husband: he was the right age, he sure sounded and looked like her husband, and she believed that her son was a young man.
This is the concept that I like to call timeline confusion. It’s not that your loved one doesn’t recognize you, it’s that they can’t place you on a timeline.
What matters is how they feel about you. Not your name or your exact identity.
THIS. sometimes ole miss thinks i’m her son, or her husband, or her cousin bill or her friend kathi, and once she called me “mommy.” doesn’t matter. she knows i’m someone who cares about her.
when my grandmother developed dementia, she took to calling me ‘virginia’. she had gone to a time in her mind when long red hair did not mean her metalhead grandson, it meant her eldest son’s fiancee. she gave me a lot of advice for how to keep my head and my temper with young leo, who could be a handful but was a gem if you didn’t let him push you. “i know you’re a firecracker, ginger,” she’d tell me, “but don’t make a fight out of it. just hear him out and then make your own decision. he respects that.”
i didn’t correct her on my gender or the year or my name. i didn’t tell her that virginia and leo had been married forty years and were doing fine; i thought that might reassure her, but then, it might just throw her for a loop, so i kept it to myself. i kind of wanted to tell her leo had been an excellent mentor to me and she’d taught him well, but i figured i could save that for a better opportunity. (as it happened, i didn’t get the chance, but i think she knew she did a good job.)
i just understood that she saw me as a young person she wanted to teach and look out for, and maybe a person whose agency she wanted to validate despite society trying to squash it.
so i listened to her advice and thanked her, and told her i’d think on it, and she was happy. and i did think on it, too, and it helped me in my relationship with seebs.
people with dementia are still themselves. they’re not clear on the details, but they still love and care and have things to teach.
I’ve been living with the effects of complex trauma for a long time, but for many years, I didn’t know what it was. Off and on throughout my life, I’ve struggled with what I thought was anxiety and depression. Or rather, In addition to being traumatized, I was anxious and depressed.
Regardless of the difference, no condition should ever be minimized. If you are feeling anxious or depressed, it’s important and urgent to find the right support for you. No one gets a prize for “worst” depression, anxiety, trauma or any other combination of terrible things to deal with, and no one should suffer alone. With that in mind, there is a difference between what someone who has Complex PTSD feels and what someone with generalized anxiety or mild to moderate depression feels.
For someone dealing with complex trauma, the anxiety they feel does not come from some mysterious unknown source or obsessing about what could happen. For many, the anxiety they feel is not rational. General anxiety can often be calmed with grounding techniques and reminders of what is real and true. Mindfulness techniques can help. Even when they feel disconnected, anxious people can often acknowledge they are loved and supported by others.
For those who have experienced trauma, anxiety comes from an automatic physiological response to what has actually, already happened. The brain and body have already lived through “worst case scenario” situations, know what it feels like and are hell-bent on never going back there again. The fight/flight/ freeze response goes into overdrive. It’s like living with a fire alarm that goes off at random intervals 24 hours a day. It is extremely difficult for the rational brain to be convinced “that won’t happen,” because it already knows that it has happened, and it was horrific.
Those living with generalized anxiety often live in fear of the future. Those with complex trauma fear the future becauseof the past.
The remedy for both anxiety and trauma is to pull one’s awareness back into the present. For a traumatized person who has experienced abuse, there are a variety of factors that make this difficult. First and foremost, a traumatized person must be living in a situation which is 100 percent safe before they can even begin to process the tsunami of anger, grief and despair that has been locked inside of them, causing their hypervigilance and other anxious symptoms. That usually means no one who abused them or enabled abuse in the past can be allowed to take up space in their life. It also means eliminating any other people who mirror the same abusive or enabling patterns.
Unfortunately for many, creating a 100 percent abuser-free environment is not possible, even for those who set up good boundaries and are wary of the signs. That means that being present in the moment for a complex trauma survivor is not fail-proof, especially in a stressful event. They can be triggered into an emotional flashback by anything in their present environment.
It is possible (and likely) that someone suffering from the effects of complex trauma is also feeling anxious and depressed, but there is a difference to the root cause. Many effective strategies that treat anxiety and depression don’t work for trauma survivors. Meditation and mindfulness techniques that make one more aware of their environment sometimes can produce an opposite effect on a trauma survivor. Trauma survivors often don’t need more awareness. They need to feel safe and secure in spite of what their awareness is telling them.
At the first sign of anxiety or depression, traumatized people will spiral into toxic shame. Depending on the wounding messages they received from their abusers, they will not only feel the effects of anxiety and depression, but also a deep shame for being “defective” or “not good enough.” Many survivors were emotionally and/or physically abandoned, and have a deep rooted knowledge of the fact that they were insufficiently loved. They live with a constant reminder that their brains and bodies were deprived of a basic human right. Even present-day situations where they are receiving love from a safe person can trigger the awareness and subsequent grief of knowing how unloved they were by comparison.
Anxiety and depression are considered commonplace, but I suspect many of those who consider themselves anxious or depressed are actually experiencing the fallout of trauma. Most therapists are not well trained to handle trauma, especially the complex kind that stems from prolonged exposure to abuse. Unless they are specially certified, they might have had a few hours in graduate school on Cluster B personality disorders, and even fewer hours on helping their survivors. Many survivors of complex trauma are often misdiagnosed as having borderline personality disorder (BPD) or bipolar disorder. Anyone who has sought treatment for generalized anxiety or depression owes themselves a deeper look at whether trauma plays a role.
damn, this is important!
I have CPTSD and I really feel this. I have had many frustrating, shitty experiences with mental health professionals that will barely acknowledge my serious mental health issues mostly come from complex trauma.
They don’t know how to deal with it, they treat it like regular anxiety and depression, and when it doesn’t work, it makes me feel like I’m too fucked up and too far gone.
where! has! my! passion! gone! I had it abundantly when I was a child, and I must have dropped it along the way, but I cannot figure where!
oh hey folks fun update, i found my passion again? i just had to find my right outlet, get to a place where I have aspirations, dispel apathy and pursue what I love, it’s all good and swell!
reblog this to find the right outlet, get to a place where you have aspirations, dispel apathy and pursue what you love, and rediscover your passion.
Sometimes people hit a place in their life where things are going really well. They like their job and are able to be productive at it; they have energy after work to pursue the relationships and activities they enjoy; they’re taking good care of themselves and rarely get sick or have flareups of their chronic health problems; stuff is basically working out. Then a small thing about their routine changes and suddenly they’re barely keeping their head above water.
(This happens to me all the time; it’s approximately my dominant experience of working full-time.)
I think one thing that’s going on here is that there are a bunch of small parts of our daily routine which are doing really important work for our wellbeing. Our commute involves a ten-minute walk along the waterfront and the walking and fresh air are great for our wellbeing (or, alternately, our commute involves no walking and this makes it way more frictionless because walking sucks for us). Our water heater is really good and so we can take half-hour hot showers, which are a critical part of our decompression/recovery time. We sit with our back to the wall so we don’t have to worry about looking productive at work as long as the work all gets done. The store down the street is open really late so late runs for groceries are possible. Our roommate is a chef and so the kitchen is always clean and well-stocked.
It’s useful to think of these things as load-bearing. They’re not just nice – they’re part of your mental architecture, they’re part of what you’re using to thrive. And when they change, life can abruptly get much harder or sometimes just collapse on you entirely. And this is usually unexpected, because it’s hard to notice which parts of your environment and routine are load bearing. I often only notice in hindsight. “Oh,” I say to myself after months of fatigue, “having my own private space was load-bearing.” “Oh,” after a scary drop in weight, “being able to keep nutrition shakes next to my bed and drink them in bed was load-bearing.” “Oh,” after a sudden struggle to maintain my work productivity, “a quiet corner with my back to the wall was load-bearing.”
When you know what’s important to you, you can fight for it, or at least be equipped to notice right away if it goes and some of your ability to thrive goes with it. When you don’t, or when you’re thinking of all these things as ‘nice things about my life’ rather than ‘load-bearing bits of my flourishing as a person’, you’re not likely to notice the strain created when they vanish until you’re really, really hurting.
Almost two weeks after reading this, and I’m still kind of blown away at what a ridiculously fruitful definition this is. Like I had no idea that load bearing things were a thing that needed to have a word for them, but now I’m like holy shit I’m so glad that there’s now a word I can use to refer to this really important class of Thing.
This is astounding. Load-bearing. Forget spoons, this concept is wonderful. I’m going to update my Spear Theory with this.
just moving along like everyone else 