A Poetic Voice: Living with Dementia

2. The Double Bind

The diagnosis revealed a double prejudice,
The social one, and one deep within my soul.
“He will be powerless,” “He will know nothing,”
Society’s whispers, a toxin consuming the mind.

A mental bondage, believing the lie of helplessness,
My twenty years of service,
“It’s over now,” I let it go myself.
Would all my experience come to naught?

Fear of failure, a prison of apathy’s name,
Stolen: the strength to live, and hope.
More frightening than the disease itself,
The blade of image and misunderstanding.

They rob us of our living strength.
Break the double bind, ignite the light of hope.

3. Inventory of the Soul

Living with this illness, I saw only “cannot”:
Memory lapses, attempts to record, Notes and memos of being lost.
My skilled computer, a diary as a beacon,
Yet filled only with the torrent of “cannot.”
My spirit sank, my heart was heavy.
Then I realized: the view must change.

The day’s small happenings, the joy that was,
To write them down—and confidence bloomed.
A purpose in my life, a light in my heart;
Even with dementia, so much remains.

I call this the “Inventory of Abilities,”
To see what can be done, to weave a thread of hope.

4. Digital Renewal

The computer, my long-time companion;
Mobile, tablet, now new adventures call.
Since the diagnosis, a resolve to learn,
My brother’s help for the initial start.

I master the tablet with a single touch,
Mail, photos—the world expands.
Facebook came years ago,
Spinning connections, sharing the delight.

If you are supported, being IT-shy is nothing,
The path will open up.
Use every convenience—
New challenges are sweet medicine for the brain.

A digital new chapter, lighting up hope.

5. External Memory

IT devices are memory outside the skull,
Gently supplementing the memories that fade.
The online calendar to manage my days,
Checking dates and hours on the screen.

Alarms set for appointments, a defense against void,
Easing the terror and the fear.

A broken bone means you cannot walk;
Brain damage means memory is lost.
It is sad, yet it must be so,
But records are the proof that I lived.

People met, the meals I ate,
Places visited, a beautiful view.
My life’s road, as a solid, certain truth,
Engraved in this external memory.

6. Wisdom of Solitude

Single, alone in my apartment—
In the beginning, they suggested a home.
Still, I choose to hold to my own life,
I accept the hardship, but this is my chosen way.

Things misplaced, meals neglected—
I list the troubles, I sharpen my wit.
A “Do Not Buy” list, checking what I own,
Knowing what to purchase, what to leave alone.

Layering efforts, rising above the lack,
The wisdom of solitude, the strength to live.
To protect my own life, by my own hand,
A proud choice, living with dementia.

7. The Flame of Self

Dementia—is it the terror of self-loss?
A darkness of the mind where nothing is known?
Losing control of my very self,
Days trembled, racked by fear.

But time flows, and the truth is clear:
Twenty years since the verdict, my self is not destroyed.
Though I forget my name, others recall it;
My presence will never cease to be.

Though I lose the words, a new connection forms,
Those around me become my tongue, connecting hearts.
Your own existence will not be ignored;
The flame of self will never die.

8. New Measure of Worth

At diagnosis, my values shattered,
On the edge of despair, I sought a new light.
The answer found through struggle and pain:
A person’s worth is not utility.

That I can do this, that I can do that,
My value is not defined by such things.
If utility were the measure, life would be despair;
As we age, what we can do diminishes.

Comparing myself to others is an endless spiral.
Liking myself—that is the start.

I will not surrender because of this diagnosis.
To live today, to reach for tomorrow.
Liking myself is power,
A new measure of worth, a light of hope.

9. A Joyful Life

Prevention, progression—the world’s concerns,
But no effective method is yet found.
The illness may advance no matter what I try.
More vital than delaying its course:

What will I do to live the better life?
To live with joy, even as the disease moves on.
Words may be difficult, the illness deepens,
Yet I fill my days with fulfillment.

Embracing life despite the hardship,
Showing that even with dementia, one can shine.
With my very being, I convey a hopeful light;
To embrace life—that is the answer.

10. The Right to Enjoy

Even with dementia, the right to enjoy life remains.
Is a well-equipped facility all that is needed?
The vital view is missing: to live with pleasure.

If the path is unknown, a guide can help.
We can go out, make fresh discoveries,
Search for what I want in the grocery store.
Guidance allows free shopping;

If I forget my order in the restaurant,
I can ask my table-mate to help me choose.
Appropriate support leads to a rich life.

Protecting the right to enjoy our lives,
A future where dementia brings light.

11. Heart’s Desire

What I can do, and what I want to do, are distinct.
Precisely because of dementia, I am free.
I do not obsess over able and unable,
I follow my heart, doing what I love.

As a child, I struggled with art,
But through clinical art, I found the joy of the brush.
My first karaoke, a discovery of delight;
My favorite song, “Brandy Glass.”

English conversation is hard, but I try.
I am honest with myself, I do not deny my will.
To live according to my heart is joy,
A future that shines because of dementia.

12. Companions on the Path

I resist the grouping of people with dementia;
Symptoms and progress are unique to each soul.
My state changes daily; it is not constant,
I am not always lost, not always without words.

Symptoms grow strong with poor health or fatigue.
Life and livelihood are individual, distinct.

I question the term “dementia sufferer” or “person with dementia,”
As the illness pushes the person’s identity back.
I wish to call us **”Companions on the Path with Dementia”**;
I feel in that name, individuality appears.

In that phrase, “walking together,” I put my hope:
The unique stories of living with this life.

13. Ask Me

Some people want to ask me, yet they do not;
Some answer for me, even while I think.
Even specialists speak only to the caregiver.
This is a disappointment, a sorrowful truth.

Though I have dementia, thought and feeling are not lost;
Only judgment and words need more time.

Take the time, and ask the person,
Allow the person to answer; this should be the rule.
Offer choices, use easy ways to ask;
I ask you not to discriminate because of the illness.

The person knows their own self best.
Respectful hearts, and an attitude that leans in.

14. As Partners

“It’s alright, we will do it for you,”
Kind words, yet they make me feel indebted.
If given time, I can do things myself,
It is sad to be denied the chance.

I am grateful for all the kindness,
But “Let’s do this together” is the word I long for.
Let’s go to a concert, let’s meet for tea;
Not supporter and the supported,

But partners enjoying things together,
Laughing, rejoicing, living side-by-side.
Valuing equal ground and the heart’s connection,
A warm society for living with dementia.

15. The Gift of Giving

The joy of life is doing something for others;
Only receiving breeds self-indulgence and frustration.
Thinking of what I can offer to others,
Gives birth to proactive energy.

Before my diagnosis, I was a volunteer,
Supporting children in poor nations.
It is happier to give than to receive.

Through what I can do now, I am useful to the world.
I avoid isolation, I gain self-confidence.
The joy of giving reveals the meaning of life.

Living with dementia, connected to society,
The joy of contribution, a shining future.

16. Member of the Community

I should not be confined to a facility or hospital;
I want to go out, to live as I did before.
Shopping, chatting—in the same old way.
Do not think of people with dementia as a separate race.

We look up at the same sky, we share the same time,
We need support, but we are not lesser beings.
Not a burden, but a member of the community,
With peers, there is much that can be achieved.

Everyone has a role, a connection to society.
Seek us out, and feel the joy of living together.
I pray for a warm society for us all,
A future of mutual support and growth.

17. Purpose and Delight

Things I can do, precisely because I have dementia:
To share my experience, to deliver hope.
My own voice, living forward without fear—
The most powerful persuasion of all.

Though some accuse me of seeking fame,
I endure the pain, with my mission held close.
To break misunderstanding, to share the truth,
So that those with dementia can live fulfilled lives.

The great joy when my message connects in a lecture;
When purpose and desire become one, it is power.
Living with dementia, lighting up hope,
A future where we support and walk together.

18. Rise Up Together

To announce my name, to speak, requires courage,
And the exhaustion of mind and body is immense.
Still, we, the sufferers, must continue to speak,
To convey our feelings, to change the world.

There are others suffering, unable to speak out;
We who can speak have a mission to be their voice.
To the supporters who stand with us:
Please, I ask you, rise up with us now.

Let’s join hands, let’s raise our voices high,
For a future full of hope for living with dementia.
To build a warm, understanding world,
Let us walk together, let us shine together.

19. A Happy World Shared

In a society valuing pure efficiency, a cold wind blows;
The elderly and disabled feel life’s difficulty.
I seek a gentle world that forgives and watches over.

Those who live with dementia hold the power for this:
To live proudly as oneself, despite the limits,
Creating a new world through our own existence.

A society easy for people with dementia to live in
Will surely be easy for everyone to live in.
All of us, living now and those to come,

A world where we can be happy, even with the illness—
Shall we build it together?
A future of mutual support, a future where we shine.

20. Being Sustained

The miracle of breath, the morning’s light—
“Thank you,” I whisper in my heart.
To the hands that care, the shoulder that supports,
I send my words of thanks.

I close my eyes to what is difficult, I look toward happiness;
Warm food, a place of peace,
A gentle smile. That is all I need.

My heart is filled by the “things that remain.”
It is not just loss, but the joy of discovery;
I am sustained, my thanks for today.

A happy light on a heart grown dull,
A warm feeling that reaches tomorrow.