Dementia

I want to begin by saying something important: I am not an expert in dementia, and I am not going to explain the differences between Alzheimer’s and dementia, or give you a medical explanation, or tell you what to expect clinically. Despite my years of caring for aging adults, many of whom lived with dementia, that isn't what I want to talk about here.

I want to ask you to see dementia through a different lens. The lens of the person who has been diagnosed.

There is a tremendous amount of information available about dementia. There are books, websites, support groups, card games, and countless resources about navigating a diagnosis and having difficult conversations with family. All of that matters. Please use those resources. Learn. Ask questions. Get support.

But I want to add something to the conversation that I haven't read as much about.

What does it feel like to be the person sitting on the other side of that diagnosis?

Over the past few weeks, I have had the privilege of getting to know four new private clients. Three women and one man, ranging in age from 47 to 77. Each has been given a diagnosis of dementia. Each is currently cognitively aware, understands what the diagnosis means, and is still physically strong and living their daily life.

For some, the changes are subtle.

Forgetting a name.

Misplacing something.

Not remembering where a conversation took place.

A change in mood.

Forgetting what day it is.

Walking into a room and forgetting why they went there.

Small things. Tiny cracks in what once felt completely familiar. And yet, underneath those small things is something much bigger. Fear. Because they know. They know what might be coming.

It is almost as though something inside their own brain is whispering to them every day:

One day you may not remember this.

One day you may not remember them.

One day you may not remember who you are.

Imagine looking into the eyes of someone you have loved for decades and wondering if there will come a day when you look at that face and nothing inside you recognizes it.

Imagine knowing that the memories that have shaped your entire life may slowly become inaccessible to you.

Imagine watching pieces of yourself disappear while still being completely aware that they are disappearing.

That awareness can feel like its own kind of prison, and the losses can begin long before the memories are gone.

Two of my clients have already had their driver’s licenses taken away. Think about what that means. It isn't just a piece of plastic, it is independence. It is the ability to get in your car and go somewhere without asking anyone. It is spontaneity, freedom, and control over your own life.

And suddenly, someone else has decided that you can no longer have it.

More things may follow...

Decisions.

Responsibilities.

Independence.

Pieces of a life that once belonged entirely to you.

Three of my clients have told me they do not want to live to the point where they no longer know themselves or the people they love. They wish they could choose another path. They would like the option of Medical Aid in Dying, not because they are experiencing unbearable physical symptoms right now, but because they are afraid of what lies ahead.

And yet, they do not qualify.

They are not dying.

They are physically strong.

They could potentially live for years.

So, they wait.

And this is where I think it gets especially difficult, it is almost as though there is a line that has been drawn somewhere in front of them, but they cannot see it.

They don't know exactly where it is.

They don't know when they will cross it.

They don't know what will happen when they do.

They simply know that one day, something may change, and when it does, it may happen without warning. They may wake up one morning no longer able to make the decisions they are making today, and at that point, the options they have today may no longer belong to them.

That is a very difficult place to live. It is a cage, in many ways.

A cage they did not build.

A cage they did not choose.

And across the front of that cage is one word: Dementia.

So, what do we do with that? How do we love someone through something we cannot fix?

I think we begin with one word: Patience.

Be patient with them and be patient with yourself. It is a whole lot harder for them than it is for you. You may become frustrated when they ask the same question again. They may become frustrated that they cannot remember the answer.

You may know where the keys are. They may genuinely have no idea. Try not to correct them simply because you can. Guide them. Support them. Help them find their way when they need help finding it.

And when you can, let them find their own way. Walk beside them. Not in front of them. Not behind them. Next to them, at their pace, in whatever way they need you to walk.

And please, try not to take it personally. This is not about you. It will affect you, of course it will.

It may break your heart.

It may frustrate you.

It may exhaust you.

You may grieve things you haven't even lost yet. That anticipatory grief is real.

Know that the changes happening inside their brain are not a rejection of you. They are not choosing this. They are trying to navigate a world that is becoming increasingly unfamiliar while you are still standing in the middle of it with them.

And you don't have to do this alone.

Find support.

Talk to someone.

Find people who understand what this feels like.

Ask questions.

Reach out.

There is no prize for doing this by yourself. The more supported you are, the more capable you will be of supporting the person you love.

And perhaps most importantly, let them continue to be who they are for as long as they can. Don't start treating someone like the person they may eventually become.

They are still here.

They still have preferences.

Opinions.

Dignity.

Autonomy.

Stories.

A voice.

Use it. Listen to it. Honor it.

This is also why conversations about what matters to us need to happen long before a diagnosis.

Talk about what they would want.

What they would not want.

Where they would want to be.

Who they would want beside them.

What makes them feel safe.

What dignity means to them.

Because someday, their ability to speak for themselves may change. And when that happens, you become their voice. Not your voice, theirs. Turn the volume up on their voice when their own volume has been turned down.

Protect their autonomy.

Protect their independence for as long as possible.

Protect their dignity.

Protect their right to be treated with respect.

And when they can no longer tell you what they need, remember that they are still the same person who once told you what that is. Listen carefully now, while you still can. Don't let the diagnosis become bigger than the person. Dementia is something they have. It is not who they are.

So, laugh with them.

Sit quietly with them.

Look at old photographs.

Listen to their favorite music.

Let them tell you the same story again.

And if someday they don't remember the story, tell it to them.

Tell them who they were.

Tell them who they love.

Tell them about the life they built.

Tell them the funny things they used to say.

Tell them the things they taught you.

Keep reminding them that their life mattered.

Take lots of photos now… one day they will be proof it all happened.

Because even if the memories begin to disappear from their mind, they do not disappear from the people who love them. And maybe that is one of the greatest gifts we can give someone living with dementia:

Not pretending that nothing is changing.

Not constantly reminding them of what they can no longer do.

Not rushing them toward a future they are afraid of.

But standing beside them in the life they still have.

Today.

This moment.

This conversation.

This cup of coffee.

This song.

This hand in yours.

This familiar face.

This love.

Meet them where they are. And when they can no longer find their way back to you, keep finding your way back to them.

Because they may forget your name.

They may forget your face.

They may forget the life you shared.

But that does not mean the love was forgotten. It means the responsibility for remembering has changed hands.

And when that happens, remember for them.

Remember who they are.

Remember who they have always been.

And most of all, remember to see the person before you see the dementia.

xo

Gabby

PS: I am learning, too. Everything I am sharing here comes from listening to the people who have trusted me with their stories and from trying to understand what this experience looks like through their eyes.