Capability Isn’t the Same as Capacity

Since Doug passed away, I’ve found myself looking back at the years we lived with dementia with a different perspective.

Developing my dementia doula curriculum has added another layer to that reflection. Taking what I learned from Doug, combining it with what I know about the disease, and then figuring out how to teach it to someone else has made me look more closely at things I thought I already understood.

It has helped me get closer to the crux of some of the issues that make dementia so difficult, not only for the person living with it, but for those of us who love and care for them.

One of those is the difference between capability and capacity.

I didn’t have those words for it when I was living it with Doug.

But I certainly experienced it.

For years, Doug and I traveled with our dogs. When we drove to San Jose to visit his parents, we were early-road people. We'd get up, load everybody into the rig, and often be on the road by six in the morning.

As Doug’s dementia progressed, that became harder.

Packing was one of the first places I remember really struggling with it.

Three days before a trip, I would start reminding Doug that he needed to pack.

Then I'd remind him again.

And again.

And he still wouldn't be packed.

It frustrated me.

Doug had traveled his entire adult life. We'd traveled together for years. Of course he knew how to pack a suitcase.

And in some ways, he still did.

If I handed him a shirt and told him to put it in the suitcase, he could do that.

But being capable of putting a shirt into a suitcase was not the same as having the capacity to pack.

“Pack your suitcase” sounds like one task to us.

It isn't.

You have to know where you're going, how long you'll be there and what the weather might be. You have to decide what clothes you'll need, what goes together, how many of each thing to bring. You need toiletries and medications. You have to remember what's already in the suitcase and what you still need.

And you have to initiate all of it.

There are dozens of little decisions and steps hidden inside what sounds like one very simple request.

Eventually I realized Doug wasn't going to pack.

Not because he didn't want to.

Not because I hadn't reminded him enough.

He couldn't manage what I was asking him to do.

So I started packing for him.

I packed for Doug. I packed for myself. I packed for the dogs. And then I packed the rig for all of us.

Was it more work for me?

Absolutely.

But something else happened.

My frustration went down.

I knew what needed to happen, and I knew what I needed to do. I wasn't spending three days reminding Doug to do something and becoming increasingly frustrated when it didn't happen.

I had changed my expectation to match his capacity.

And sometimes, that's what meeting Doug where he was looked like.

It also meant reminding myself of something that sounds ridiculously obvious:

My guy had dementia.

Of course I knew that.

But knowing Doug had dementia and recognizing all the ways dementia was changing what he could manage were two very different things.

I could look at the man who had packed his own suitcase for decades and think, Of course Doug can pack.

Sometimes I needed to remind myself that the Doug standing in front of me had a disease that was changing his abilities.

That didn't mean assuming he couldn't do things.

It meant paying attention to what he could manage now, rather than basing my expectations on what he had always been able to do.

And capacity wasn't always fixed.

We might plan to go away for a long weekend. I'd pack everybody, we'd get on the road, arrive at our destination—and the next day Doug might want to go home.

That was another adjustment for me.

My first instinct could easily have been, We just got here. I packed all this stuff. We're supposed to be here for three days.

But if Doug had reached his capacity for being away from home, the itinerary didn't really matter.

Sometimes we came home.

Looking back, I think this is one of the places where we, as care partners, can get stuck.

We know what our person is capable of because we've watched them do it for years.

He knows how to do that.

She did it yesterday.

We've done this a hundred times.

And all of those things may be true.

But dementia changes the equation.

The better question isn't always:

Can they do this?

Sometimes it's:

What is this asking of them?

Do they have the capacity for all of the steps, decisions, concentration, energy or stimulation involved right now?

That distinction matters.

Because when we expect someone to function beyond their capacity, what we see on the other side can look like resistance, stubbornness, refusal or simply not trying.

And then everybody gets frustrated.

Meeting someone where they are doesn't mean deciding they can't do anything and doing everything for them.

Sometimes they can do it independently.

Sometimes they need a little support.

Sometimes they can do part of it.

And sometimes, like Doug and that damn suitcase, it becomes something we need to take over.

The challenge is learning to recognize the difference.

I certainly didn't always get it right.

But over time, I got better at reminding myself:

My guy has dementia.

And then looking again at what I was asking of him.

Because Doug was still Doug.

What was changing was his capacity.

And when I could recognize that, I could change my approach instead of asking him to change his.