Blogging Dementia: an elumenEd Publication

In the last edition of The Dementia Newsletter, I wrote about what happens when we run into resistance to our care. We talked about how our care might be perceived and why it might be rejected. (You can read the original article here.) As I’ve continued to ponder the subject of care refusal, I’ve come up with a distinction that may shine some light on why some interactions I’ve had with people with dementia have been successful, and why other interactions haven’t been. So here’s my thesis: see what you think — when we run into a refusal of care, I think we tend to ask ourselves one of these two possible questions: Why won’t they…? Why would they…? Perhaps this doesn’t seem like much of a distinction. However, I think that the sooner you start asking the second question, the sooner everything will get easier. Here’s how I see it: the first question isn’t about helping your loved one. Not really. It’s about having a task to get done. #1 asks (whom?) for a solution to a hopeless problem, ...

I’m going to set some ground rules between us for how today is going to go, OK? You have to do this You can’t do that Eat now Drink now Get up Sit down Watch TV Turn that thing off! Take these pills; don’t worry about what they are Go to the bathroom right now, and I’ll help I don’t understand you… But I know what’s best for you OK, got all that? Are you ready and excited to comply with my plan for your life? Is this how your caregiving might sound to your loved one? Even if you don’t say it like this, might they hear it like this? In the rush of things, has your care stopped sounding like a conversation and started sounding like a command? It happens to all of us. We get into a productive routine that, over time, turns into a rut. To you, the routine has been effective and you try to continue it. But how does your loved one feel about a routine they can’t remember as being beneficial? If they have lost the context of your years of productive routine together, it’s not a routine for th...

The terms “dementia” and “Alzheimer’s disease” are often used interchangeably, but there's actually an important difference between them that can affect care. In order to understand the distinction, we need to understand this statement: Alzheimer's disease is always dementia, but dementia is not always Alzheimer's disease. Let's dig into the term dementia to start with. When we say someone has dementia, it means that they're displaying a certain set of symptoms. For instance: Memory loss Difficulty concentrating Finding it hard to carry out familiar daily tasks, such as getting confused over the correct change when shopping Struggling to follow a conversation or find the right word Being confused about time and place Mood changes If this is all we know, then we know what is happening, but we don’t know why. It's kind of like saying that someone with the following symptoms has a “bug.” Runny nose Coughing Congestion Fever Fatigue The above “bug” symptoms could re...

For support in my own caregiving, I often participate in Facebook dementia support groups. I mentioned that to a colleague the other day, and she said that she found it difficult to hear so much negativity in those groups from so many angry people. I get that. It’s difficult to be in that environment. But when I look deeper into these places, I see a kind of magic happening, a beautiful alchemy of sorts. There’s a saying in the East: hen doku i yaku — change poison to medicine. This is the idea that we all experience “poison” in our lives. It can fester in us, or it can actually be a source of growth, healing, and strength. If you love someone with dementia, their illness is probably a great poison to you. You might feel pieces of you being poisoned to death! Your joy? Your sense of humor? Compassion? Patience? How do we, then, perform this alchemy? How do we change “poison” to “medicine”? Personally, I start with gratitude. Sometimes, it’s hard to find something to be grateful for, so...

My partner and I are planning a trip to Greece later this year. It’s going to be my first trip to Europe, and I’ve been insufferably excited. I even decided to learn a little Greek on Duolingo. I learned a lot of words over the 100+ days I studied…and none of them was “bathroom”! I’m imagining myself walking through the cradle of western civilization or standing in the middle of the Parthenon, unable to enjoy the experience because I have no way to find the bathroom and I’ve really, REALLY got to go! Imagining myself in that situation gives me some insight into how vulnerable I would feel if I couldn’t communicate: suddenly my mom’s agitation makes a lot more sense. If I couldn’t communicate my most basic needs, I would be agitated too. If you notice your loved one growing agitated, starting to wander, or becoming aggressive, they may have unmet needs that they can’t communicate. Here are my top five: address these first to see if you can satisfy a need that they have but can’t speak. ...

We all meet life’s bruising winds in our own ways. We may often feel like we are blown about like a kite in a storm. But you’re not the kite: please remember this. A kite without a pilot isn’t really a kite: it’s just a piece of trash being kicked around wherever the wind wants to take it. YOU are the one who makes the kite fly. YOU are the pilot. When you meet the challenges of angry loved ones, problematic family members, obnoxious friends, dwindling finances, and more, can you accept them as the wind? Can you accept that these are the conditions of the present moment and harness that “wind” to your best advantage? Because, and I hate to say it, those circumstances are often about as unchangeable as a monsoon. If we can’t change the wind, we have to learn how to harness it. We learn how to ride it in order to go where we want. We stop fighting the forces of nature and become present with them in a constructive way. In the hands of a master kite pilot, even difficult winds can produce...