Meet Demetria
Article Summary:
Introducing another fictional character (Demetria) whose special person is having memory problems
Providing tools and resources about dementia, Alzheimer’s, and having conversations about hard things
A call to action: “Time is Brain” (historically referring to stroke). I challenge all of us to become protectors and rescuers of our precious, irreplaceable, finite neurons/brain cells — taking action when we see signs of a problem
Check out the audio narration above (hit play, I’ll read to you), and open the links below (mandatory homework for all listeners/readers… you’re your own person, and there’s no accountability here, but really, click the links). Ready? Off we get!
Demetria: Our Dementia Confidant
Let’s talk about Demetria.
Demetria is our friend, we’ve known her a long time, and in our younger days we had a lot of fun together. We’ve gone in and out of each other’s lives over time, settling into the routines of careers and families, but always re-immersing ourselves seamlessly into being good friends. Demetria is our confidant.
Do you have a Demetria in your life? I’ve got a few.
This Demetria is a loving and attentive partner, a caring human, and an empathetic listener. She never wants to bother anyone. Ever. With worry, or frustration, or chores. She’s a peacekeeper. And she’s looking at a problem, a doozy of a problem, and doesn’t know what to do with it.
So she discusses with her confidants.
One of those confidants is us.
Demetria seems to be having a difficult week. A text becomes a phone call, and she shares that an important person in her life may be developing a memory problem. Becoming forgetful. Showing signs of dementia.
“Or Alzheimer’s? I don’t actually know the difference”.
And now the stage is set. The door is opening.
An open door is an invitation — and this doorway is making way for a difficult conversation.
Can we talk about something? I’m worried about…
Telling a loved one you think they have a memory problem is, well, not easy. I’ve met patients all along the spectrum of memory impairment from “a little forgetty” to “I don’t know who you are” (when looking at their own children or spouses). I’ve also experienced dementia and its effects on my elders (a grandparent, an uncle, probably some others we’ll find out about eventually). I often wonder what my memory will be like as I age.
I’m no expert, but I have some relevant experiences that help shine a light on the path forward, and tools that might make it slightly smoother ride.
The path ahead is uncertain, the map is ill-defined, and the help that’s available (human help, medicines, etc.) depends on a few different things.
It's nuanced.
First, is being able to call attention to the problem. And that, unfortunately, means we have to be aware a problem exists at all. (I couldn’t find a video demonstrating what I want to explain in this context, so I’m going to provide a video clip that’s close, and give my own examples in the narration). Awareness of a problem fits nicely into Stages of Change theory.
The Transtheoretical Change Model (Stages of Change Video) describes the stages we go through when there’s a habit we want to start/stop — it’s also a good example of how to approach a conversation about an illness or symptom by first figuring out the awareness/ readiness on the subject:
Precontemplation — unaware that the problem or need to change exists
Contemplation — aware that the problem exists, but unaware of what to do about it
Preparation — Having a plan for what to do, but not yet implementing
Action — Doing the darn thing
Maintenance — Doing the darn thing over time, making it a habit
Termination — Finishing the thing; or Recurrence — Recovering from a slip into old habits or patterns
It’s a cycle, it’s nonlinear, and we get to the different phases in different ways (oh we humans are so complex).
Let's start with considering where our person is (or where we are) in the change stages.
Demetria right around Contemplation and Preparation.
Noticing there’s something going on, but unsure of what to do (or how).
In her Preparation, she did the most wonderful, amazing, helpful thing a person can do for themselves or anyone else.
She asked for help.
“Help will always be given [at Hogwarts] to those who ask for it” — Albus Dumbledore
How Can I Help?
For Demetria, it helped to have a conversation. We talked about a particular situation that came up recently with her person. She described what seemed unusual about it, and pieced together a few different occurrences that, when looked at in isolation, seemed innocuous.
Piecing together the symptoms of a problem involves evaluating the importance of signs we might otherwise think are “harmless” or “just the way they are”… Piecing together the story gives us permission to look at the whole puzzle (or whole story) that seems to be coming together.
See, like many health problems, the signs build over time. A subtle behavior change. A simple pattern shift.
A sidenote, dear reader: my worry is that I’ll inject worry into your mind by making you think that every symptom is a sign of something much worse than your imagination could tell you.
That is not my intention. So don’t do that to yourself. Okay?
But… what is your intuition telling you? What story are you piecing together?
Demetria is piecing together a problem with memory. In our conversation, we discussed what dementia is, and how Alzheimer’s Disease is one of the common causes of dementia.
I recommend this short article from the Alzheimer’s Association which describes the signs, symptoms, diagnoses, and treatments associated with dementia. Go read it, then come back.
Okay, now that we’re on the same page, what’s next?
What do I do with this collection of symptoms?
Here’s the hard part. We have to do something with the puzzle and its pieces. And doing something involves talking to a medical professional. (But Jessie, that doesn’t sound so hard, just call the doctor, right?). WRONG!
Well, you’re right, but it’s nuanced.
Yes, someone needs to talk to a medical professional (a doctor or nurse practitioner), but often we’re noticing these symptoms in someone else. And till now, they’ve been the boss of their own body. And “we don’t talk about Bruno-no-no”… Historically, we don’t talk about other people’s bodies or brains. We notice, but we don’t say anything. Because… manners…
Out of politeness, people pass off symptoms (warning signs, yellow/ red flags), not wanting to offend anyone.
DON’T BE POLITE.
Wait, no, yes, be polite.
But don’t let politeness stop you from getting someone the help they need.
Like those stages of change above, your Person is likely in Precontemplation — unaware the problem even exists.
Or they could be in Contemplation, but they might not feel comfortable addressing it with anyone. For fear of appearing weak. Disabled. Old.
How do we start talking about the in-discussable?
Start by giving ourselves some PATS on the back:
Permission — give yourself permission to speak your mind (and from the heart)
Acknowledge — that this is going to be harder than your usual conversations, and that your person is having an experience that is unique/different from your own
Time — give yourself time to be uncomfortable, and recognize this conversation will evolve over time. It’s almost never “one-and-done”, so don’t expect a resolution immediately. This will unfold with time
Safety — remind yourself of your physical and psychological safety, and that may involve waiting for a particular moment or space to have a heart-to-heart talk
(I made that up. PATS. Is it helpful?)
What I borrowed is this video on giving feedback. It’s a TED series, and this one will take 5 minutes of your life to learn about giving/receiving feedback. Watch it, then proceed with the remainder of this post.
Okay, back at it.
Now, Demetria may feel comfortable talking to her person directly. Or she may talk to her confidants (partner, parent, dear friend, others with similar experiences). Eventually though, her person is going to need to talk to a doctor/medical professional. Be evaluated. Possibly receive a diagnosis. And possibly a treatment.
Time Is Brain
As a stroke nurse, I’ve repeated “Time is Brain” over and over and over, reiterating the importance of calling 9-1-1 if someone is experiencing signs of a stroke (BEFAST: Balance Eyes Face Arm Speech Time). Stroke is an emergency, and the response to stroke can save someone’s life and prevent or lessen the long-term effects of this debilitating and too-common problem.
That said, memory loss may not be a 9-1-1 emergency. Memory loss is a problem that needs prompt attention. The reason being — we humans lack the ability to physically look into someone’s brain and know what’s going on. There are many reasons someone could become forgetty. They could be impaired by medications or other substances. They could be stressed or overwhelmed by life events. They could be distracted or depressed. We just don’t know without an evaluation.
Time is Brain pertains to these brain cells, too, though. The longer we wait to find out what’s going on, the more we miss out on potential solutions. Or management strategies. The prognosis could change depending on what we do, and how long we wait.
There are medications for certain conditions that can delay the progression of a disease. Exercises (physical and cognitive) that can strengthen the mind and body, delaying the progression of a disease. There may be studies or treatments that our person qualifies for that could delay the progression of a disease.
We may not be able to fix it. Cure it. Or treat it.
But maybe we can buy a little more time. Quality time. More of this. Before that comes later. The inevitable, indefinite later. Taking action now is an investment in our quality time later.
So, before we get to later. Or too late… Talk to your people. Then talk to a professional.
And remember to take good care!
Love,
Jessie