I love this poem.
Led me to put my thoughts into poem form as well. I worked on it over many months, adding thoughts as they came to mind.

ANCHORED ADJACENT TO LIFE

Anchored forever to the same chapter in life,
This is the story of a caregiving wife.

A housewife, a mother, I expected to be,
But a carer as well? That, I didn’t see.
A husband whose illness has robbed him from me,
Changed him in ways that pains me to see.

Going from partners and friends, husband and wife,
To patient and carer at a young age of life.
Nothing prepares you, it’s so hard to explain,
It’s the loneliest road, paved over with pain.

Supposed to be planning, building our dreams,
Friends moving forward, while we fray at the seams.
Tied to a slowed-down, medical world,
No cure to reach for, our fate is sealed.

Day after day watching decline,
Plateau for a time, then the next warning sign.
Physical care and emotion support,
All takes its toll, beyond human thought.

Pressure intense, it never lets up,
Trying to pour from a near-empty cup.
Smile at things that bring momentary light,
But under it all is a body wound tight.

It doesn’t get better, it only gets worse,
Sobering visits with every doctor and nurse.
Going through motions of living each day,
Wondering, why were we chosen to live life this way?

Endlessly working to take care of needs,
My heart is breaking and daily it bleeds.
Torn from a life we once thought we would live,
Worn to the bone but still expected to give.

Try to explain it to family and friends,
They don’t understand how the pain never ends.
No others can truly feel the despair,
So, you pick and you chose what details to share.

People are kind, they mean to be nice,
They say you’re inspiring yet you’re stuck in a vice.
They praise you for staying, they say you do well,
It may look like I’m coping but that’s my tough outer shell.

“Enjoy while you have him, make the most of each day”,
Words that are meant to encourage, but what can I say?
I get what they’re saying, I really do try,
But when you’re running on empty it just makes you cry.

Tears on the inside, a smile without,
It’s possible to do that, I’ve worked it all out.
Captain the ship, amid the tempest and storm,
Appear you’re in charge, step up and perform.

Caring is endless, twenty-four hours each day,
A life that is lived in a sorrowful way.
Unable to do what others can do,
Leaves you lost and lonely, feeling saddened and blue.

The simplest of joys have been taken from life,
I’m more and more carer, less and less wife.
No working together, no sharing the load,
It’s a one-man band on this care-giving road.

Tension runs high, blame thrown around,
Shutting down my emotions while his battles abound.
Telling myself he doesn’t want to be mean,
It’s the illness that’s talking, so it’s not what it seems.

Taking the hits, holding the household afloat,
Trying to smooth things without rocking the boat.
The most major of pressures show up behind scenes,
It’s why others don’t see what it really all means.

No planning ahead, always just getting by,
So desperately lonely I could break down and cry.
Looking for ways to make it better for him,
While my own mental state is neglected and grim.

I crave conversation, banter and fun,
I yearn for the small things when each day is done.
I long to sit down and talk, tell him all of my heart,
He’s still there beside me but he can’t play his part.

I tamp down my feelings to match his altered IQ,
He’s still the man that I married, yet entirely new.
He’s still Dad to our children, yet not in ways that they need,
What they’ll forever miss out on causes my heart to bleed.

Lost is his humour, his perspective and joy,
In body a man, in mind a young, difficult boy.
In his moments of struggles he turns to his mum,
Instead of his wife and that stings til I’m numb.

I do all that I can, I care day in and day out,
But I’m shackled to sorrow and I cannot get out.
I promised to love him, and love him I do,
Yet it’s not reciprocal love now, it’s sad but it’s true.

Finish each day, each one in their bed,
Tears come quietly as I lay down my head.
I can’t let him see just how destroying it is,
It wasn’t my choice, but nor was it his.

The house may be quiet, but my thoughts are still loud,
The real person in me is silenced and quelled.
An ongoing presence of loss and of grief,
They’re constant companions, there is no relief.

Watching those in our age group move forward and live life,
While I’m tethered to this, I’m a care-giving wife.
I watch people laugh, sometimes laugh with them too,
While inside I’m broken, bleeding and blue.

I dream of a life where partnership thrives,
Where we’d both be equals, moving forward in our lives.
But no matter the dream, this is our life to live,
So, battered and bruised, I’ll continue to give.

Anchored I am, adjacent to life,
Stuck in this chapter as a caregiving wife.